Form 0985-NEW Final ADRC Evaluation

Evaluation of the Aging Disability Resource Center Program

FINAL ADRC Evaluation Data Collection Instruments for 30-day notice 5-14-12

Evaluation of the Aging and Disability Resource Center Program

OMB: 0985-0035

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Aging and Disability Resource Center Grant Program Evaluation:
Data Collection Materials

TABLE OF CONTENTS
SECTION 1: ORIGINAL PROPOSED DATA COLLECTION TOOLS .............................................. 4
PROCESS EVALUATION: WEB-BASED SURVEY ............................................................................ 5
PARTICIPANT EXPERIENCE SURVEY ..................................................................................................... 31
1.

INTRODUCTION ........................................................................................................................... 33

PARTICIPANT EXPERIENCE SURVEY .................................................................................... 34

CLIENT SCREENING TOOL ...................................................................................................................... 53
STUDY DESCRIPTION/AGREEMENT TO PARTICIPATE ....................................................................... 58
CONTACT INFORMATION DATA COLLECTION TOOL .............................................................. 59
PROCESS EVALUATION SURVEY STATEMENT OF INFORMED CONSENT .......................... 62
PARTICIPANT EXPERIENCE SURVEY STATEMENT OF INFORMED CONSENT ................. 63
LETTER OF SUPPORT FROM THE ADMINISTRATION ON AGING FOR ORGANIZATIONS
PARTICIPATING IN THE PROCESS EVALUATION ...................................................................... 64
PROCESS EVALUATION SURVEY INVITATION FOR SITE DIRECTORS/MANAGERS OR
OTHER STAFF........................................................................................................................................ 65
LETTER OF SUPPORT FROM THE ADMINISTRATION ON AGING TO POTENTIAL
ORGANIZATIONS SELECTED FOR THE OUTCOME EVALUATION......................................... 66
ADRC EVALUTION FACT SHEET ...................................................................................................... 67
OUTCOMES EVALUATION RECRUITMENT TELEPHONE SCRIPT....................................................... 68
SECTION 2: COMMENTS TO ORIGINAL 60-DAY NOTICE, RESPONSES TO COMMENTS
RECEIVED, AND REVISED DATA COLLECTION TOOLS............................................................. 71
AGING AND DISABILITY RESOURCE CENTER GRANT PROGRAM EVALUATION ............ 72
Page 2 of 170

COMMENTS BY THE NATIONAL COUNCIL ON INDEPENDENT LIVING (NCIL) ADRC
TASK FORCE .......................................................................................................................................... 72
ATTACHMENT A: PROCESS EVALUATION: WEB-BASED SURVEY ........................................ 84
ATTACHMENT B: PARTICIPANT EXPERIENCE SURVEY ................................................................... 127
3.

INTRODUCTION ........................................................................................................................ 129

PARTICIPANT EXPERIENCE SURVEY ................................................................................. 130

ATTACHMENT C: CLIENT SCREENING TOOL .................................................................................... 149
ATTACHMENT D: STUDY DESCRIPTION/AGREEMENT TO PARTICIPATE .................................... 154
ATTACHMENT E: CONTACT INFORMATION DATA COLLECTION TOOL ......................... 155
ATTACHMENT F: PROCESS EVALUATION SURVEY STATEMENT OF INFORMED
CONSENT ............................................................................................................................................. 158
ATTACHMENT G: PARTICIPANT EXPERIENCE SURVEY STATEMENT OF INFORMED
CONSENT ............................................................................................................................................. 159
ATTACHMENT H: LETTER OF SUPPORT FROM THE ADMINISTRATION ON AGING FOR
ORGANIZATIONS PARTICIPATING IN THE PROCESS EVALUATION ................................ 160
ATTACHMENT I: PROCESS EVALUATION SURVEY INVITATION FOR SITE
DIRECTORS/MANAGERS OR OTHER STAFF ............................................................................ 161
ATTACHMENT J: LETTER OF SUPPORT FROM THE ADMINISTRATION ON AGING TO
POTENTIAL ORGANIZATIONS SELECTED FOR THE OUTCOME EVALUATION ............. 162
ATTACHMENT K: OUTCOME EVALUATION RECRUITMENT TELEPHONE SCRIPT....................... 164
SECTION 3: ADDITIONAL MATERIAL ................................................................................................. 166
ATTACHMENT L: 60-DAY FEDERAL REGISTER NOTICE ...................................................... 167
ATTACHMENT M: IRB APPROVAL OF THE DATA COLLECTION TOOLS ......................... 170

Page 3 of 170

SECTION 1: ORIGINAL PROPOSED DATA COLLECTION TOOLS

Page 4 of 170

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________

PROCESS EVALUATION: WEB-BASED SURVEY

INSTRUCTIONS TO WEB SURVEY PROGRAMMER: PREPOPULATE (PP) INFORMATION IN [ ] BASED ON SITE
DIRECTOR TYPE (DT) OR ID NUMBER (ID). THESE PROPOPULATED DATA WILL BE USED THROUGHOUT
THE SURVEY TO ORIENT THE RESPONDENT BASED ON TYPE OF SITE. EACH SITE WILL ALSO RECEIVE A
UNIQUE ID NUMBER WITH THE NAME OF THE SITE.

[ID Number - ID]
Name of Site
[Director Type - DT]
ADRC1 (State-level)
ADRC2 (Local-level)
AAA
CIL
Section A. Baseline Characteristics
[FOR STATE AND LOCAL-LEVEL ADRC DIRECTORS]: The first set of questions focus on characteristics of
your organization/network PRIOR to receiving an ADRC grant and the influence on your
organization/network of the Administration on Aging (AoA) and/or CMS grant(s) (i.e., AoA Title IV
grants, AoA title II grants, CMS Real Choice System Change grants, CMS Person-centered hospital
discharge planning grants, Patient Protection and Affordable Care Act funds).
[FOR AAA AND CIL DIRECTORS ONLY]: We are interested in how your organization/network has changed
over time, therefore, the first set of questions deals with the characteristics of your organization
approximately 7 years ago (i.e., in 2004-2005).

Has your organization or network realized an improvement in ability to provide integrated,
comprehensive access to long-term care services and supports (e.g., provide one-stop or
streamlined benefits access, increase awareness of LTSS options, provide assistance to
consumers such as counseling regarding LTSS choices or transitions from institutions back into
the community) [if DT = ADRC1 or ADRC 2 since the start of the ADRC grant ; if DT=AAA or CIL
over the past 7 years]
Yes
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Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________

No [skip to question 3]
2.

Which have had the most positive impact on your organization/network’s ability to provide
integrated, comprehensive access to long-term care services and supports (e.g., provide onestop or streamlined benefits access, increase awareness of LTSS options, provide assistance to
consumers such as counseling regarding LTSS choices or transitions from institutions back into
the community)? (Select up to two)
Partnerships developed/expanded
Staffing changes
Shared data
Focusing on providing person-centered, self-directed services
Other, please specify

3. [FOR STATE-LEVEL ADRC DIRECTORS ONLY]: Which of the following BEST describes the reason
your State applied for an ADRC grant (If you have applied for more than one ADRC grant, please
think back to reason for applying for the first grant):
To better integrate service provision systems
To develop or strengthen agency/organizational partnerships
To improve data or IT infrastructure
To improve marketing or awareness efforts related to Long Term Care Services and
Supports (LTSS)
To expand services to additional populations
To expand services to additional geographic locations
Other , please specify
4. [FOR STATE-LEVEL ADRC DIRECTORS ONLY]: Please indicate how your State selected local sites
to receive ADRC funds.
Selected sites that were already integrated to help them maintain or expand their
efforts
Selected sites that were partially integrated to support further integration
Selected sites that were fragmented to encourage integration
Other, please specify
5. [FOR LOCAL-LEVEL ADRC DIRECTORS ONLY]: Which of the following best describes the reason
your site became an ADRC:
To better integrate service provision systems
To develop or strengthen agency/organizational partnerships
To improve data or IT infrastructure
To improve marketing or awareness efforts related to Long Term Care Services and
Supports (LTSS)
To expand services to additional populations
To expand services to additional geographic locations
Other, please specify
6. [FOR AAA AND CIL DIRECTORS ONLY]: Is your site interested in becoming an ADRC or becoming
part of an ADRC in the future?
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Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________

Yes; If yes, what is your current stage or status in becoming an ADRC? (Open
Response)
No; If no, please explain why you do not plan to become an ADRC? (Open Response)
Other, please specify
7. [FOR AAA AND CIL DIRECTORS ONLY]: How would you describe your site’s perception of the
ADRC program? (Open Response)

8. [FOR STATE AND LOCAL-LEVEL ADRC DIRECTORS ONLY]: Please indicate the extent to which
Federal (AoA/CMS) grants have enabled your ADRC to realize any of the following outcomes…
(Select all that apply)
(3-point scale: Very much;
Somewhat; Very little)
… increase the skills of existing staff
… recruit or attract more experienced staff
… increase/expand populations served
… increase the number of consumers served
… increase the number of partnerships
…increase range of services offered
…make other changes (please specify)

9. [FOR STATE AND LOCAL-LEVEL ADRC DIRECTORS ONLY]: How has the ADRC grant(s) affected the
resources or resource allocation at your organization/network or within your state? [IF THERE IS
MORE THAN ONE ADRC IN THE STATE CHECK THE BOX IF THE ITEM IS TRUE OF AT LEAST ONE
ADRC] (Check all that apply)
At the site or local level
At the State level
Helped us leverage other funds
Improved staff training opportunities
Increased service efficiency
Contributed to the development of a
statewide database of LTSS services and/or
consumers
Promoted the development of standard
operating procedures
Increased the level of coordination
between organizations serving older
individuals and individuals with disabilities
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Improved awareness/marketing
campaigns/activities

Section B. Populations Served
This second set of questions asks about the populations in your service area as well as consumers that
your organization/network serves. For questions about consumers, please focus on those who received
services designed to enhance individual choice and support informed decision-making among
consumers. This includes empowering individuals to effectively navigate their health and other longterm support options (e.g., Information, referral and awareness services; Consumer-focused decision
support; Assistance with planning for future LTSS Needs; Streamlined eligibility determination for public
programs Person-centered transition support from institutional setting to community settings; and
Independent living skills.) Please answer these questions to the best of your knowledge. In questions
asking for percentages, please provide estimates if your organization does not collect the requested
data.

NOTE: The data will be used to group like organizations together to allow for more complex data
analyses. These data will not be used to evaluate the efforts of your specific organization/network.

For the following items, please indicate the demographic composition of your service area. (This
question applies to the community that [insert ID] serves)
10a. Latino/Hispanic Origin
Yes %
No %
10b. Race
Caucasian/White %
Black or African American %
American Indian or Alaska Native %
Asian %
Nation Hawaiian or Other Pacific Islander %
10c. If you have one or more significant racial/ethnic sub-populations in your service area please
list it here:
10d. What percentage of your service area is living at or below the poverty line?
At or below the poverty line %
Not sure, but a significant population lives under the poverty line
Not sure, but the population is small or non existent
10e. What percentage of your service area is uninsured/does not have health insurance coverage?
Uninsured %
Not sure, but a significant population is uninsured
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Not sure, but the population is small or non existent
11. [FOR LOCAL-LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Within the last 12 months, has a
community LTSS needs assessment been conducted?
Yes
No, but we did complete a community needs assessment within the past three years
No, a community needs assessment was not completed within the past three years
[FOR STATE-LEVEL ADRC DIRECTORS ONLY]:
Yes , we assessed the needs in all ADRC communities in our State
Yes, we assessed the needs in some of the ADRC communities in our State
No, but we did complete a community needs assessment, for at least some of the
ADRC communities in our State within the past three years
No, a community needs assessment was not completed within the past three years
12. This next set of questions is designed to gather information about the conditions in your service
area. [SPECIAL INSTRUCTIONS FOR THE STATE-LEVEL ADRC DIRECTORS: PLEASE THINK ABOUT
THE STATUS OF YOUR STATE AS A WHOLE].
Community Needs
Barriers to receiving LTSS services (3-point scale: not a barrier; sometimes a barrier; often a barrier)
To what extent is each of the following a barrier for individuals seeking LTSS services both prior to
receiving an ADRC grant [approximately 7 years ago] and currently?
Prior
Lack of LTSS services-Needed services are not offered
Lack of available LTSS service slots-(e.g., There are long waitlists)
Poor service quality
Lack of health insurance
Providers not accepting consumers with Medicaid
Barriers based on consumer disabilities
Language barriers
Cultural barriers
Religious barriers
Sexual orientation barriers
People needing services do not have a permanent address
Consumers lack transportation
Stigma, discrimination and prejudice against older adults
Page 9 of 170

Currently

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________

Stigma, discrimination and prejudice against persons with disabilities
Providers have high staff turnover
Providers lack appropriately trained staff
Service provider hours/locations are hard to access
Other Please specify:

Service Availability/Choice

Please indicate the Current
availability of the following
services within your service
area
(Adequate availability;
Available but inadequate to
meet need; Not available)

Safe and affordable housing options
Peer support services/groups
HCBS Medicaid Waiver Programs
Caregiver Support (i.e. respite
programs, support groups, or
counseling)
Nutrition Programs
Employment services
Education services
Opportunities to develop advanced
directives
Transportation services
Opportunities for
socialization/recreation
Mental health services
Ombudsman services
Health prevention and screening
services
Services for emergent cases/Crisis
intervention
Page 10 of 170

For the following services, to
what extent is there provider
choice?
Service has (no; limited;
adequate) provider choice
Prior to first
ADRC grant
[7 years prior]

Currently

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________
Please indicate the Current
availability of the following
services within your service
area

Service Availability/Choice

(Adequate availability;
Available but inadequate to
meet need; Not available)

For the following services, to
what extent is there provider
choice?
Service has (no; limited;
adequate) provider choice
Prior to first
ADRC grant

Currently

[7 years prior]

Transition programs (from hospitals,
nursing homes etc.)
Nursing home (institutional) diversion
programs
Nursing home/residential beds
Income assistance
Energy assistance
Personal care services
Independent Living services (e.g.,
home modification, attendant care)
Other, please specify
13. How many consumers of each type were served in the most recent 6 month period (October
2011-March 2012) NOTE: This question is specific to the consumers who access [insert ID]
services such as I&R/I&A, benefits or options counseling, Information and referral services,
services to support transitions from residential or institutional facilities to the community.
Currently
Characteristics

Consumers
under 60

Older Adults (60+)
Individuals with Disabilities
Physical disabilities
Cognitive impairment
Intellectual disabilities
Developmental disabilities
Mental Illness

Page 11 of 170

Consumers
over 60

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________
Currently

Characteristics

Consumers
under 60

Consumers
over 60

Multiple disabilities
Caregivers
Informal/family caregiver
Paid Caregiver
Health & Human Service Professional (e.g., physician,
hospital discharge planner, nursing home staff)
Special Subpopulations
Traumatic Brain Injury (TBI)
Emergent/Emergency Cases
Low income
Limited English proficiency
Is the [insert ID] making any special efforts to target a
particular population not listed above? If yes, please specify.
Other (Please specify)
Other (Please specify)

14a. [FOR STATE AND LOCAL LEVEL ADRC DIRECTORS ONLY]: Since the start of the ADRC grant, the
number of clients under 60 served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
14b. [FOR AAA AND CIL DIRECTORS ONLY]: Over the past 7 years, the number of clients under 60
served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
15a. [FOR STATE AND LOCAL LEVEL ADRC DIRECTORS ONLY]: Since the start of the ADRC grant, the
number of consumers over 60 served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
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15b. [FOR AAA AND CIL DIRECTORS ONLY]: Over the past 7 years the number of consumers over 60
served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
16a. [FOR STATE AND LOCAL LEVEL ADRC DIRECTORS ONLY]: Since the start of the ADRC grant, the
number of consumers with physical disabilities served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
16b. [FOR AAA AND CIL DIRECTORS ONLY]: Over the past 7 years, the number of consumers with
physical disabilities served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
17a. [FOR STATE AND LOCAL LEVEL ADRC DIRECTORS ONLY]: Since the start of the ADRC grant, the
number of consumers with mental/emotional disabilities served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
17b. [FOR AAA AND CIL DIRECTORS ONLY]: Over the past 7 years, the number of consumers with
mental/emotional disabilities served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
18a. [FOR STATE AND LOCAL LEVEL ADRC DIRECTORS ONLY]: Since the start of the ADRC grant, the
number of consumers with multiple disabilities served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
18b. [FOR AAA AND CIL DIRECTORS ONLY]: Over the last 7 years, the number of consumers with
multiple disabilities served by [insert ID] has:
Significantly increased
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Significantly decreased
Stayed the same
19a. [FOR STATE AND LOCAL LEVEL ADRC DIRECTORS ONLY]: Since the start of the ADRC grant, the
number of caregivers served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
19b. [FOR AAA AND CIL DIRECTORS ONLY]: Over the past 7 years, the number of caregivers served
by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
Section C. Service Provision
These questions are about the services provided by your organization/network

20.

[FOR LOCAL LEVEL ADRC, CIL, AND AA DIRECTORS ONLY] What three topics do consumers
most commonly ask about?
Advanced directives
Advocacy
Attendant care services
Caregiver/respite support
Chronic health conditions
Education
Employment
Energy assistance
Home modification
Housing
Income assistance
Medicaid questions (including about HCBC waivers)
Medicare questions
Mental health
Nutrition
Ombudsman/abuse or neglect issues
Other Independent living supports or services
Personal care
Preventative health services
Recreation opportunities
Services for emergent cares/crisis intervention
Support groups
Transition services
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Transportation
Other, please specify
Do not know
21. [FOR LOCAL LEVEL ADRC, CIL, AND AA DIRECTORS ONLY] Does [insert ID] engage in advocacy
activities for older adults?
Yes
No
22. [FOR LOCAL LEVEL ADRC, CIL, AND AA DIRECTORS ONLY] Does [insert ID] engage in advocacy
activities for persons with disabilities?
Yes
No
23a. [FOR LOCAL LEVEL ADRC, CIL AND AAA DIRECTORS ONLY]: Is nursing home diversion is an
outcome sought to be achieved?
Yes
No [Skip to question 28]
23b. *FOR LOCAL LEVEL ADRC, CIL AND AAA DIRECTORS+: Is *insert ID+ meeting its program’s goals
for diverting individuals from nursing homes or other institutional residential settings?
Yes, completely
To a large degree
To a limited degree
No
23c. [FOR LOCAL LEVEL ADRC, CIL AND AAA DIRECTORS]: How is [insert ID] measuring and tracking
this?
Staff track using a standard electronic system
Staff track using a standard hardcopy/paper system
An external group (e.g., an evaluator, auditor) tracks using a standard system
Staff track using an informal system
Other, please specify
[FOR SITES WITH CARE COORDINATION/TRANSITION ASSISTANCE PROGRAMS ONLY]
24. Does your network/organization provide transition services to consumers discharged from an
acute care setting?
Yes
No [If no skip to question 29]

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25. Care Coordination/Transition Assistance
[insert ID] Clients Provided Care Coordination/Transition Assistance
What is the number of [insert ID] individuals assisted with hospital
discharge following an acute care episode?
What is the number of [insert ID] individuals assisted with transition from
hospital through formal care transitions program (evidence-based CT
intervention or innovative model)?

What is the number of [insert ID] individuals assisted with transition from
nursing facility?

What is the number of [insert ID] individuals assisted with transition from
ICF/MR into the community?

What is the number of [INSERT ID] individuals assisted with transition from
other institutional setting (e.g. psychiatric hospital)?

What is the cumulative number of individuals assisted with transition from
hospital through formal care transitions intervention across all
participating hospitals in this [INSERT ID] program service area to date?

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________

28. What is the number of individuals who were assisted with transition from hospital through formal
care transitions intervention across all participating hospitals in this [INSERT ID] program service
area this reporting period by health insurance source?
Medicare
Medicaid
Dual-Eligible
Other Unknown
29. What is the number of individuals who were assisted with transition from hospital through formal
care transitions intervention across all participating hospitals in this [INSERT ID] program service
area in this reporting period who were referred to one or more health/prevention programs?
CDSMP
DSMP
Exercise Program
Mental Health and Substance Misuse
Falls Management and Prevention
Alzheimer’s Programs
Medication Management
Home Injury/Risk Screenings
Other
30. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]:
marketing plan?
Yes, our marketing plan is operational
No, we have a plan but it is not yet operational
No, we do not have a plan at this time

Do you have an operational

30a. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Does [insert ID] or your network
utilize a standard operating procedure to assess consumer need?
Always
Sometimes
Never
30b. [FOR STATE-LEVEL ADRC DIRECTORS ONLY]: Do the ADRCs in your State utilize standard
operating procedures to assess consumer need?
All or most
Some
Few or none

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31. [FOR LOCAL LEVEL ADRC ONLY]: Is the consumer assessment tool and/or basic consumer needs
assessment process common across partner organizations?
Yes, common across all partners
Yes, common across some partners
No, each partner organization uses their own assessment tool/process
[FOR SITES WITH OPTIONS COUNSELING OR OTHER ONE ON ONE COUNSELING ONLY]

32. Does your organization/network provide “Options Counseling” or other one-on-one counseling
designed to support consumers’ ability to make informed decisions about their long-term care?
Yes
No [If no skip to question 36]
33. Referrals to Public and Private Services this Reporting Period
Referrals to Public and Private Services this Reporting Period

What is the number of [insert ID] clients referred to or given an application for a
public program, including Older Americans Act; Medicare; Medicaid; Food Stamps;
TANF; Social Security (SSI or SSDI); LI-HEAP; VDHCBS; Other State-funded and countyfunded programs for Medicaid; Other?

What is the number of [insert ID] clients referred to some other type of service (nonpublic services, resources or program)?

What is the number of [insert ID] clients that were not referred to any type of service?

What is the number of [insert ID] Unknown Clients (remainder of all Clients)?

Total

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[FOR SITES WITH OPTIONS COUNSELING OR OTHER ONE ON ONE COUNSELING ONLY]
34. Clients Provided Options Counseling this Reporting Period
[insert ID] Clients Provided Options Counseling By Age
[insert ID] Clients Aged 60 and Over

[insert ID] Clients Under Age 60

[insert ID] Clients Age Unknown

Total

[insert ID] Clients Provided Options Counseling by Method
In person
By phone
Electronic Communication
(e.g. email or website chat)
Total

[insert ID] Clients Provided Options Counseling by Setting
[insert ID]
Hospital
Nursing facility/Institution
At the client's community residence
Other
Total
Client Feedback About Options Counseling
What is the number of [insert ID] Clients who report that
options counseling enabled them to make well informed
decisions about their long term support services?

What is the number of [insert ID] Clients surveyed this
reporting period?
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35. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Does [insert ID] or network have a
standardized tool or process to provide options counseling?
Yes
No
Don’t know
Not applicable
[FOR SITES THAT REFER CLIENTS TO PUBLIC PROGRAMS ONLY]:
36. Average Monthly Public LTSS Program Enrollment in WHOLE [INSERT ID] SERVICE AREA
This set of questions is asking about all current enrollment levels in these programs in the [INSERT ID]
service area. Enrollment fluctuates from month to month, so please calculate the average enrollment per
month during the reporting period.

Average Monthly Public LTSS Program Enrollment in WHOLE [INSERT ID] SERVICE AREA
What is the average number of individuals enrolled in Medicaid HCBS
Waivers in [INSERT ID] Service Area each month (should include [INSERT
ID] Clients and might include Non-[INSERT ID] Clients)?

What is the average number of individuals enrolled in Medicaid residing in
institutions in [INSERT ID] Service Area each month (should include [INSERT
ID] Clients and might include Non-[INSERT ID] Clients)?

What is the average number of individuals enrolled in other public LTSS
programs in [INSERT ID] Service Area each month (should include [INSERT
ID] Clients and might include Non-[INSERT ID] Clients)? Please list LTSS
programs and HCBS waivers (e.g. aged and disabled, MR/DD) that
individuals are enrolled in.

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[FOR SITES THAT REFER CLIENTS TO PUBLIC PROGRAMS ONLY]:
37. Total New Enrollment among [INSERT ID] CLIENTS ONLY in Public LTSS Programs
This set of questions is asking about the absolute number of [INSERT ID] clients who were newly enrolled
into these programs during the last six months.

Total New Enrollment among [INSERT ID] CLIENTS ONLY in Public LTSS Programs
What is the number of [INSERT ID] Clients who are newly enrolled into a
Medicaid HCBS Waiver this reporting period (including individuals enrolled
by [INSERT ID] staff and individuals referred for assessment/application by
[INSERT ID] staff)?

What is the number of [INSERT ID] Clients who are newly enrolled into
Medicaid institutional services this reporting period (including individuals
enrolled by [INSERT ID] staff and individuals referred for
assessment/application by [INSERT ID] staff)?

38. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: For data collected on consumers,
are staff required to follow the Alliance of Information and Referral Systems (AIRS) standards1?
Yes with all consumers
Yes, with specific groups of consumers –Please specify:
Never
39. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]:
Does [insert ID] have a
database/MIS that does any of the following (Select all that apply):
Track information and referral (I&R) requests
Track consumers/Maintaining consumer records
Maintain a list of services/service providers
Other, please specify
We do not have an electronic records/tracking system [skip to question 41]

Standard 13: Inquirer Data Collection
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40. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Do you have designated internal
staff who oversee the quality control of the organization’s database?
Yes
No
41. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Do operational partners update
information in your organization’s or network’s database?
Yes
No, but there are plans to develop that capacity
No, and there are no current plans to do this
42. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Do service providers enter new
information or create new records in your organization’s or network’s database?
Yes
No, but there are plans to develop that capacity
No, and there are no current plans to do this
43. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Can partners and providers access
consumer-level information from your organization’s or network’s database?
Yes, both partners and providers
Only partners
Only providers
No, neither partners or providers
44. Does staff follow up with consumers after their initial contact with your organization or
network?
Always
Sometimes-Under what circumstances:
Never
45. When consumers are referred to other agencies or organizations, are those providers contacted
as part of the follow up procedure?
Always
Sometimes-Under what circumstances:
Never
46.

Approximately what percentage of consumers who are referred to other organizations receive
a “warm transfer” (e.g., Simultaneous transfer of a telephone call and its associated data from
one agent to another agent or supervisor)? ______%

47.

[FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Does your organization routinely
collect quantitative performance data about its services and consumers?
Yes
No (Skip to question 48)
Page 22 of 170

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________

48.

[FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Indicate any of the ways that
your organization uses performance data: [check all that apply]
To justify funding requests
To improve consumer service
To administer service provider contracts
To provide information to stakeholders (governing board, advocacy organizations,
local government, etc.)
For program planning
Do not use performance data

49.

[FOR STATE AND LOVAL LEVEL ADRC DIRECTORS] On which topics, if any, would you like to
receive additional assistance from the technical assistance provider? (Open Response)

Section D. Organizational Characteristics
These questions are about your organization or network budget, partnerships, and structure.
50.
51.

What is your total budget for the current fiscal year? (In $ amounts)
For the current Fiscal Year, what is the approximate amount of funding from each of the
following sources? (In $ amounts)

Check if you
have received
funding in prior
Fiscal Years

Amount of
funding
during the
current Fiscal
Year

Funding source

Administration on Aging Title IV ADRC
Grant
Administration of Aging Title II Grant
CMS Real Choice Systems Change Grants
CMS Person-Centered Hospital Discharge
Planning Grant
Patient protection and Affordable Care
Act Grant
Veteran’s Administration
Money Follows the Person
Demonstration
State Transformation Grant
Alzheimer’s Disease Demonstration
Page 23 of 170

Process Evaluation Survey
Interviewer Initials (or ID) _______

Check if you
have received
funding in prior
Fiscal Years

Amount of
funding
during the
current Fiscal
Year

Date_____________

Funding source

Grant
Evidence-Based Disease Prevention
Grant
Program of All-Inclusive Care for the
Elderly (PACE)
Medicare Improvement for Patients and
Providers Act (MIPPA)
Respite Care Act funds
Rehabilitation Services Administration
(RSA)
Substance Abuse and Mental Health
Services Administration (SAMHSA) Mental Health Transformation Grant
Agency for Health Care Research and
Policy - Chronic Disease SelfManagement Grant
Administration for Children and Families,
Office of Community Services - Low
Income Home Energy Assistance
Program (LIHEAP)
Health Resources and Services
Administration HIV/AIDS Bureau - Ryan
White Fund
State Unit on Aging
State General Revenue
County government
Private entities/grants - Hospitals or
other businesses
Other, please specify

Page 24 of 170

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________

52. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: Is [insert ID] more of a single-point of
entry (centralized) OR a no wrong door (decentralized)?
Single-point of entry (i.e. one agency knowledgeable about care alternatives which
helps people make decisions about the best and most feasible options.)
No wrong door (i.e., multiple agencies which cooperate to assist consumers in need
regardless of which agency the consumer first contacts)
53. [FOR AAA DIRECTORS ONLY]: Do you identify your structure as any of the following:
Independent, non-profit
Part of city government
Part of COG or RPDA
Other
54. [FOR LOCAL LEVEL ADRC DIRECTORS ONLY]: What organizations comprise the core operating
organizations?
Core Operating Organization?

Organization

(Yes/No)

Page 25 of 170

Process Evaluation Survey
Interviewer Initials (or ID) _______

55.

Date_____________

With which organizations do [insert ID] have a partnership? What is the strength of the relationship, as well as the type of partnership agreement and
shared resources?
Shared Resources
Partnership Agreement
Functionality of
the partnership
(1=Dysfunctional
Partner*
Organization

(Check all
that apply)

2=Moderately
functional/
functional in some
areas
3=Highly
functional

Area Agency on Aging [row will not show for AAA
respondents]
State Unit on Aging
Veterans Organization
Alzheimer’s Association
Other Aging Services Organization
Centers for Independent Living [row will not show for
CIL respondents]
Vocational Rehabilitation Departments
Page 26 of 170

( Select from the following
list:
Funding relationship
Formal MOU
Contract
Cooperative Informal working
relationship
Other, please
specify)

Select from the following list:
Co-located staff
Shared monetary
resource
Information sharing
Joint training
Joint sponsorship of
programs
Shared non-monetary
resources (i.e. office
space)
Shared data
No shared resources

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________
Shared Resources
Partnership Agreement
Functionality of
the partnership
(1=Dysfunctional
Partner*

Organization

(Check all
that apply)

2=Moderately
functional/
functional in some
areas
3=Highly
functional

AIDS Coalition
American Council of the Blind
Schools for the blind
Deaf Service Centers
Schools for the Deaf
State Associations for the Deaf
Easter Seals (All Disabilities)
The ARC
National Autism Association state/regional chapter
Autism Society state/regional chapter
Epilepsy Foundation state/regional chapter
Page 27 of 170

( Select from the following
list:
Funding relationship
Formal MOU
Contract
Cooperative Informal working
relationship
Other, please
specify)

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________
Shared Resources
Partnership Agreement
Functionality of
the partnership
(1=Dysfunctional
Partner*

Organization

(Check all
that apply)

2=Moderately
functional/
functional in some
areas
3=Highly
functional

Easter Seals (All Disabilities)
United Cerebral Palsy (UCP)
National Multiple Sclerosis Society state/regional
chapter
National Association of Mental Illness (NAMI)
state/regional chapter
Brain Injury Association (BIA) state/regional chapter
Community Mental Health
County or Regional Council of Governments
County Government Office or Agency
Local Housing Authority
State or Local Medicaid Agency
Page 28 of 170

( Select from the following
list:
Funding relationship
Formal MOU
Contract
Cooperative Informal working
relationship
Other, please
specify)

Process Evaluation Survey
Interviewer Initials (or ID) _______

Date_____________
Shared Resources
Partnership Agreement
Functionality of
the partnership
(1=Dysfunctional
Partner*

Organization

(Check all
that apply)

2=Moderately
functional/
functional in some
areas
3=Highly
functional

211
Other Human Services of Social Service Provider
(please specify)
Hospital
Religious institutions (e.g., church, synagogue,
mosque, temple)
Library
Other, please specify

Page 29 of 170

( Select from the following
list:
Funding relationship
Formal MOU
Contract
Cooperative Informal working
relationship
Other, please
specify)

Process Evaluation Survey
Interviewer Initials (or ID) _______

56.

Date_____________

Approximately, how many FTEs (Full-time equivalents) perform each of the following
functions?
I&R/I&A
Options counseling/counseling to provide in-depth person centered decision
support
Benefits counseling/eligibility determination
Care transition services
Crisis intervention services
Independent Living services
Advocacy services
Providing administrative or other support for the above functions

57. [FOR STATE LEVEL ADRC DIRECTORS ONLY] At the State level, how many FTE are dedicated
to working with the ADRC(s) in your State?
_________

58. [FOR LOCAL LEVEL ADRC, CIL, AND AAA DIRECTORS ONLY]: How many front line staff are
Alliance of Information and Referral Systems (AIRS) certified?
Number of AIRS certified staff
Total number of front line staff
Section E. LTSS Environment
59.

Since this [insert ID] started serving consumers, has there been an impact on the LTSS or
Home and Community-Based (HCBS) system in your community?
There has been an increase in the number of LTSS providers.
There has been a decrease in the number of LTSS providers.
There has been an increase in the quality of LTSS services.
There has been a decrease in the quality of LTTS services.

Please add any final thoughts about [insert ID] and either its operations and/or its results (Open
response).

Page 30 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

PARTICIPANT EXPERIENCE SURVEY

INSTRUCTIONS TO ABT SRBI: PREPOPULATE (PP) INFORMATION FROM AGENCY ELIGIBILITY
SCREENING (ES) AND DATA COLLECTION (DC) TOOLS. THESE PREPOPULATED DATA WILL BE USED
THROUGHOUT THE SURVEY TO ORIENT THE RESPONDENT TO THEIR EXPERIENCE WITH THE
AGENCY AT THE TIME OF THE CONTACT IN WHICH THEY WERE SCREENED FOR ELIGIBILITY FOR THE
STUDY.
[ID Number – Footer ES/DC]
[Agency Type – ES 2]
□

ADRC

□

AAA

[Need Spanish interpreter – DC 6]
□

Yes

□

[Need TTY service - DC 7]
□

Yes

□

[Preferred call time – DC 5]

PP1. [Agency Name – ES 1] ______________________________
PP2. [Respondent Type – ES 3]
Self
Parent
Child
Other relative
Friend
Neighbor
Client/Patient
Other: ____
DK
Page 31 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

REF
PP3. [Study Type – ES 5/ES 6]
□

Older Adult (response to 5=≥60)

□

Disability (yes to any 6a-6f)

PP4. [Result of Contact – ES 7]
□

Options Counseling

□

Benefits Eligibility Determination

□

Information & Referral /Information & Assistance ___________________

□

Crisis intervention

□

Independent living services

□

Transition Assistance _________________________________

PP5. [Date of Contact – DC 1]
(month, date, year) _ _ /_ _ /_ _
PP6. [Reason for contacting the agency (client’s need at time of the time of contact) – DC 8]
________________________________________________________________________________
PP7. [Mode of Contact – DC 10]
□

In-person (visit)

□

Telephone (call)

PP8. [Respondent Name – DC 2]
PP9. [Respondent Age – ES 5]

Page 32 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Introduction

"Hello, may I speak to _________ [insert PP8]? (IF ASKED: I am calling on behalf of the United
States Administration on Aging about his/her satisfaction with a recent service experience.)
Hello, my name is [insert survey administrator name].
[IF INTRO TO AoA ABOVE IS READ, THEN READ]: I am calling to ask about the quality of your
experience with the [insert PP1] on [insert pp5] about [REASON FOR CONTACT PP6].
[IF INTRO TO AoA ABOVE IS NOT READ]: I am calling on behalf of the United States Administration
on Aging to ask about the quality of your experience with the [insert PP1] on [insert pp5].
During that [insert PP7] you talked to staff about service needs for [insert PP2]. (At that time you
said that you would be willing to participate in an interview about your experience). Can I ask you
some questions about that experience? It will only take 20 minutes. Is now a good time for the
interview about your experiences?
□

Yes [If yes, skip to Statement of Informed Consent]

□

No, this is a bad time

[Continue]

□

No, I don’t remember calling agency

[Terminate]

□

REF, no I don’t want to do an interview [Terminate]

When would be a better time to call back to do the interview?
Gives call back time __________________________________
If REF, can I ask why you are not interested in participating? _____________
Thank you for your time [end the call].

Page 33 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Participant Experience Survey

If you have any questions during the interview, please stop me and ask me. Also, please let me
know if you do not understand a question or if you would like me to repeat it.
Section A. Initial Contact

The first set of questions has to do with the experiences that you had when you [insert PP7] the
[insert PP1] on [insert PP5].
1. When you contacted the [insert PP1], you said that the main reason for your [insert PP7]
was [insert PP6]. Is that correct?
□

YES [If yes, skip to qA3, else continue to qA2]

□

REF

2. I’m sorry; please tell me, what was the main reason that you contacted the [insert PP1] on
[insert PP5]? [RECORD RESPONSE AND CHECK APPRORIATE RESPONSE BELOW]
_________________________________________________
□ Safe and affordable housing options
□ Peer support services/groups
□ HCBS Medicaid Waiver Programs
□ Caregiver Support (i.e. respite programs, support groups, or counseling)
□ Nutrition Programs
□ Employment services
□ Education services
□ Opportunities to develop advanced directives
□ Transportation services
□ Opportunities for socialization/recreation
□ Mental health services
□ Ombudsman services/Services related to abuse or neglect
□ Health prevention and screening services
□ Services for emergent cases/Crisis intervention
□ Transition programs (from hospitals, nursing homes etc.)
□ Nursing home (institutional) diversion programs
Page 34 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

□ Nursing home/residential beds
□ Income assistance
□ Energy assistance
□ Personal care services
□ Independent Living services (e.g., home modification, attendant care)
□ Independent Living Skills training
□ Other
3. From where did you first find out about the [insert PP1]? [CHECK MOST APPROPRIATE
RESPONSE]
□

Family member, friend or other acquaintance

□

Hospital/Clinic/Doctor

□

Nursing Home/Assisted Living

□

Phone Book

□

Brochure/Flyer

□

Referral from senior center

□

Referral from another agency/organization

□

Through work

□

Internet/Website

□

Media/Newspaper/TV/Radio

□

Other ______________________

4. Was [insert PP1] the first organization that you contacted about [insert PP6]?
□

Yes

□

REF

Section B. Agency Efficiency

These next questions are about your experience during your contact with [insert PP1].
1. [ASK ONLY IF PP7 = IN-PERSON (VISIT); ELSE SKIP TO Qb2] When you contacted the [insert
PP1], how long did you wait during the initial call to talk with someone who could help you
with [insert PP6]?[DO NOT READ RESPONSES, PLEASE CHECK APPROPRIATE RESPONSE]
□

Minimal wait (less than five minutes)

□

Five to 10 minutes
Page 35 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______
□

10 minutes to 20 minutes

□

Over 20

□

REF

Date_____________

[Following response, skip to qB4].
2. Were you able to talk to a representative during your first contact?
□

YES [If yes, skip to qB4, else continue to qB3]

□

REF

3. Do you recall how many additional contacts (including calls where you left a message on a
machine) you had to make before you were able to talk with a representative? [DO NOT
READ RESPONSES]
□

None

□

One

□

Two

□

Three

□

Four or more

4. Including the contact that you made (the first time you talked with someone) with the
[insert PP1] on [insert PP5], how many times have you had to describe your request for
services, or explain what you needed? [DO NOT READ RESPONSES]
□

One time

□

Two times

□

Three or four times

□

Five or more times

5. Throughout your contact with [insert PP1] did any of the following circumstances reduce or
prevent your ability to resolve your issue? [CHECK ALL THAT APPLY]
□

[insert PP1] hours of operations

□

Difficulty reaching [insert PP1] staff

□

Language issues

□

Staff professionalism

□

Staff knowledge

□

Staff follow through

Page 36 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Section C. Effectiveness of Agency Representative

1. Did you feel the representative at [insert PP1] paid close attention to what you were
saying?
□

YES

□

SOMEWHAT

□

REF

2. In your opinion, how knowledgeable was the representative at [insert PP1]? Were they…
□

Very knowledgeable

□

Somewhat knowledgeable

□

Not very knowledgeable

□

Not at all knowledgeable

□

REF

3. Was the information you received from the representative at [insert PP1] clear and
understandable?
□

Very clear and understandable

□

Somewhat clear and understandable

□

Not very clear or understandable

□

Not at all clear or understandable

□

REF

4. Based on your request for [insert PES A2 if answered; else insert PP6] when you contacted
[insert PP1], did the representative ask questions that made you feel that your needs were
being correctly assessed?
□

YES

□

REF

Page 37 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

5. If assistance was requested, did the representative at [insert PP1] work with you to develop
an action plan outlining your next steps in meeting your long terms care needs?
□

YES [if yes go to C6; otherwise skip to D1]

□

N/A

□

REF

6. Does the plan accurately reflect your needs and preferences?
□

Yes

□

Somewhat

□

N/A

□

REF

Section D. Institutional Diversion

1. When you contacted the [insert PP1], were you considering a move to a long-term care
setting, such as a nursing home, for [insert PP2]?
□

YES

□

REF

2. Did the representative you talked to at the [insert PP1] on [insert PP5] help you to
understand other choices in addition to a nursing home or other long-term care setting?
□

YES

□

N/A

□

REF

Page 38 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

3. On a scale from 0% to 100% [ASK IF PP9 IS < 65 YEARS OLD], what is the percent chance
that you, or the person for whom you contacted the agency will ever have to move into a
nursing home?
_______ % PROMPT 0 10 20 30 40 50 60 70 80 90 100%
OR
[ASK IF PP9 AGE IS EQUAL TO OR GREATER THAN 65], what is the percent chance that you or the
person for whom you contacted the agency will move into a nursing home in the next five years?
______ % PROMPT 0 10 20 30 40 50 60 70 80 90 100%
Section E. Assistance with Services

From the next set of questions, we would like to learn about your experiences in obtaining the
services for which you contacted the [insert PP1] on [insert PP5].
1. Did you receive the service that you needed directly from them or indirectly by a referral to
another agency?
□

Directly ([insert PP1] provided the service) [If selected, skip to Section E.1]

□

Indirectly (you were referred elsewhere)

□

Both/some services provided by [insert PP1] staff and some through referrals

□

REF

2. Did the representative of the [insert PP1] help you to connect with the services you
needed?
PROBE: TRANSFER YOUR CALL, PROVIDE A TELEPHONE NUMBER OR ADDRESS, OR SET UP
A CALL BACK FROM AN AGENCY/ORGANIZATION.
□

YES [If yes, continue to qE3; else skip to Section E1]

□

REF

3. Did the representative of the [insert PP1] transfer your call to an agency/organization that
provided you with your needed/requested services?
□

YES [If yes, skip to qE6; else, continue to qE4]

□

REF

Page 39 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

4. Did the representative give you contact information (telephone number, address, web
address) of an agency/organization that provided you with needed/requested services?
□

YES [If yes, skip to qE6; else continue to qE5]

□

REF

5. Did the representative contact the needed service provider and arrange for them to contact
you?
□

YES [If yes, continue to qE6; else, skip to Section E.1]

□

REF

6. When you contacted the needed service provider, did that provider already have the
information that you provided to [insert PP1] or did you have to start the process
again?[RECORD RESPONSE AND CHECK APPRORIATE RESPONSE BELOW]
□

Provider had the information

□

Provider had the information but it wasn’t correct or it was incomplete – had to start
the process again

□

Provider did not have the information – had to start the process again

□

REF

Page 40 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

7. To what supports and services were you transferred or referred?[RECORD RESPONSE AND
CHECK APPRORIATE RESPONSE BELOW]
_______________________________________
□ Safe and affordable housing options
□ Peer support services/groups
□ HCBS Medicaid Waiver Programs
□ Caregiver Support (i.e. respite programs, support groups, or counseling)
□ Nutrition Programs
□ Employment services
□ Education services
□ Opportunities to develop advanced directives
□ Transportation services
□ Opportunities for socialization/recreation
□ Mental health services
□ Ombudsman services/Services related to abuse or neglect
□ Health prevention and screening services
□ Services for emergent cases/Crisis intervention
□ Transition programs (from hospitals, nursing homes etc.)
□ Nursing home (institutional) diversion programs
□ Nursing home/residential beds
□ Income assistance
□ Energy assistance
□ Personal care services
□ Medicaid waiver assistance
□ Independent Living services (e.g., skills training, peer support)
□

Other _______________

□

None

□

REF

Page 41 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

8. What was the result of the referral?[READ FROM THE FOLLOWING LIST AND CHECK THE
MOST APPROPRIATE RESPONSE ]
□

[insert PP2] received services [If selected, skip to Section E.1]

□

[insert PP2] DID NOT receive services

□

It’s too soon to tell [If selected, skip to Section E.1]

9. You said that [insert PP2] did not receive the services through the referral, why do you think
that is? [RECORD RESPONSE AND CHECK APPRORIATE RESPONSE(S) BELOW]
___________________________
□

The services were not what [insert PP2] wanted/needed

□

The service/program is not accepting applications/there is a waitlist

□

It is too expensive

□

There is no transportation

□

The service or program is not available at times needed

□

[insert PP2] is not eligible

□

I tried to contact the service or program that was referred, but was busy/unavailable
□

Line was busy

□

Wait time too long

□

Other ___________________

□

Have not yet contacted, but plan to

□

Have no plans to contact the service or program
□

□

REF

Please Specify reason ____________________

Section E.1. Assistance with Medicaid Eligibility Determination

The next set of questions has to do with information and help that you may have received from the
[insert PP1] on whether or not you are eligible for [insert name of state Medicaid program].
[IF RESPONDENT SAYS THAT THEY ALREADY RECEIVE MEDICAID BENEFITS OR THAT THEY DID NOT
TALK ABOUT THIS WITH THE AGENCY REPRESENTATIVE, THEN SKIP TO SECTION E.2].
1. Did you receive specific information on applying for [insert name of state Medicaid
program]?
□

YES

□

NO [If no, skip E.1.5; else continue to E.1.2]

□

REF
Page 42 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

2. Did you complete a [insert name of state Medicaid program] application through the
[insert PP1]?
□

YES [If yes, continue to qE1.3; else skip to Section E1.4].

□

REF
If no, please explain why __________________

3. Were you provided with help by the agency in completing the [insert name of state
Medicaid program] application?
□

YES

□

REF

4. How long did you wait to find out if you qualified for [insert name of state Medicaid
program]? [DO NOT READ RESPONSES, CHECK APPRORIATE RESPONSE]
□

One day or less

□

Two to six days

□

One week

□

More than one week, but less than a month

□

Over a month

□

Still waiting

□

REF

5. Were you given information by the agency about other insurance resources besides [insert
name of state Medicaid program]?
□

YES

□

REF
If yes, please specify _____________________________

Page 43 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Section E.2. Assistance with One-on-One Options Counseling

1. Did you request, need, or accept a conversation with a counselor (e.g., one-on-one
counselor, case management), in other words, someone to talk with about understanding
and selecting the long-term services (beyond information and referral)?
□

YES

□

NO [If no, skip to Section E3; else continue to qE.2.2]

□

REF

2. Did the counselor (e.g., one-on-one counselor, case manager) visit you in your home?
□

YES

□

REF

3. Following the first meeting, did the counselor (e.g., one-on-one counselor, case manager)
follow-up with you either by phone calls and/or additional in-home visits?
□

YES

□

REF

4. Did the information and support that the counselor (e.g., one-on-one counselor, case
manager)gave you help you to:
Yes,

Yes,

No,

definitely

probably

probably not

definitely not

a. Better understand your long term
service and support options?
b. Make a decision about long-term
support services?
c. Access (i.e., streamline) public
programs?
d. Access private services including
services that you have to pay for
yourself?
e. Obtain long-term support
planning or services that fit within
your budget?

Page 44 of 170

n/a

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

5. How satisfied or dissatisfied are you with the service you received from the counselor (e.g.,
one-on-one counselor, case manager)?
□

Very satisfied

□

Somewhat satisfied

□

Somewhat dissatisfied

□

Very dissatisfied

Section E3. Care Transition Services

1. Did you receive services that helped you to transition from a hospital or other acute care
facility into the community?
□

YES

□

NO [If no, skip to Section F; else continue to qE3.2]

□

□ REF
2. Did you receive any of the following services?
□

A contact before discharge to assess your discharge needs

□

An explanation of your discharge instructions

□

Post discharge services such as transportation to the doctor, help filling prescriptions,
household help

□

Follow up within 48 hours of discharge

3. How satisfied or dissatisfied are you with the transition service you received?
□

Very satisfied

□

Somewhat satisfied

□

Somewhat dissatisfied

□

Very dissatisfied

Section F. Services Received from the [insert PP1]

Now I’d like to ask you some questions about the overall results of your contact with [insert PP1].

Page 45 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

1. Did you ever receive the service that you were seeking based on your contact with [insert
PP1]?
□

YES, within one week of contact

□

YES, after more than a week

□

NO [If no continue to qF2; else, skip to qF3]

□

REF

2. Why do you think you have not received the services?[READ FROM THE FOLLOWING LIST,
STOP AT THE FIRST YES RESPONSE AND CHECK THAT RESPONSE]
□

The services are not available.

□

[insert PP2] is on a waitlist.

□

I could not get to the services (e.g., hours of operation, transportation barriers)

□

The information/help received from [insert PP1] was not useful.

□

I did not follow-up on the information and/or referral.

□

I no longer need the services.

□

Other

3. Since contacting the [insert PP1] on [insert PP5], have you been in touch with any other
agencies similar to [insert PP1] to receive [insert PES A2 if answered; else insert PP6]?
□

YES [If yes, continue to qF4; else, skip to qF5]

□

REF

If yes, please specify name of agency/organization __________________
4. Were there any needs that this agency/organization [identified above in qF3] was able to
meet that the [insert PP1] was NOT able to meet?
□

YES [If yes, please specify need(s) __________________]

□

REF

Page 46 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

5. As a result of your conversations with [insert PP1] staff, did YOU realize that you had a need
or concern that you did not know that you had before contacting the [insert PP1]?
□

YES

□

REF

6. Did the [insert PP1] follow up with you to find out how useful the information was or how
the referral(s) turned out?
□

YES

□

REF

7. On the following scale, as a result of your contact with [insert PP1], how satisfied are you
with…
Very
satisfied
a. The services that you received directly from [insert
PP1]?
[If somewhat or very dissatisfied] please explain
why___________________________________
b. The services that you received from agencies you were
referred to by [insert PP1]?
If somewhat or very dissatisfied, please explain
why___________________________________
c. Comprehensiveness of the information or services
provided?
If somewhat or very dissatisfied, please explain
why___________________________________
d. The personalization/individualization of the services
offered?
If somewhat or very dissatisfied, please explain
why___________________________________
e. The accuracy of the information provided?
If somewhat or very dissatisfied, please explain
why___________________________________
f. The support you received related to decision-making?
If somewhat or very dissatisfied, please explain
why___________________________________
Page 47 of 170

Somewhat
satisfied

Somewhat
dissatisfied

Very
dissatisfied

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Very
satisfied

Somewhat
satisfied

Somewhat
dissatisfied

Very
dissatisfied

g. The professionalism of the organization/staff?
If somewhat or very dissatisfied, please explain
why___________________________________
h. How easy it was to work with [insert PP1] to resolve
my issue related to [insert PP6]?
If somewhat or very dissatisfied, please explain
why___________________________________

8. As a result of your contact with the [insert PP1], would you say that you are…..
□

Much better informed about your long term care options

□

A little better informed

□

About the same

□

A little more confused

□

Much more confused

□

REF

9. To what degree has the information you received from [insert PP1] been useful to you as
you select the long term care options that are best for you?
□

Very useful

□

Somewhat useful

□

Not useful

□

□ REF
10. Would you tell a friend or relative who needed help to contact the [insert PP1]?
□

YES

□

REF

11. How likely is it that you would contact the [insert PP1] for services in the future?
□

Very likely

□

Somewhat likely

□

Somewhat unlikely

□

Very unlikely
Page 48 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Section G. Heath and Demographic Information

In the next set of questions we would like to learn a little about your health and health insurance.
1. Do you have any of the following types of health insurance? [Record all that apply]
NO

YES

Don’t
Know

Medicare
[insert name of state Medicaid
agency]
Private Health Insurance
Other, please specify____________
Uninsured

2. At the present time, would you say your health is excellent, good, fair, or poor?
□

Excellent

□

Good

□

Fair

□

Poor

□

Refused to answer

□

Don’t know

3. Have you been admitted to a hospital in the past 6 months?
□

Yes

□

Refused to answer

□

Don’t know

4. As part of this study, we would like to follow up on your use of health care over the next few
years. To do this we would like to obtain the last four digits of your social security number.
We assure you that we will keep this number safe and confidential.
□

SS # ________________________________

Page 49 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

The last set of questions will tell us a little more about you. This information is to describe the group
of persons included in the study and will not be used to identify you as an individual. We will use
this information to determine whether not the [insert PP1] and other similar agencies are reaching
all members of the community.
5. [Ask only if PP2= SELF, else go to 6. What is your date of birth?
month/day/year [After response, go to qG7.
6. What is the date of birth of the person for whom you contacted the agency?
7. What is your gender?
□

Male

□

Female

□

REF

8. What is the highest grade or year of school you have completed?
□

No formal schooling

□

First through 7th grade

□

8th grade

□

Some high school

□

High school graduate

□

Some college

□

Associates degree

□

Four-year college graduate

□

Some graduate school

□

Graduate and professional degrees

□

(VOL) REF

Page 50 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

9. Which of the following racial categories describes you? You may select more than one.
READ LIST AND MULTIPLE RECORD
□

American Indian or Alaska Native

□

Asian

□

Black or African-American

□ Hispanic/Latino
□

Native Hawaiian or Other Pacific Islander

□

White

□

(VOL) Other (SPECIFY)

□

(VOL) Refused

10. What was your total household income before taxes in 2011? Your best estimate is fine.
[CHECK APPROPRIATE RESPONSE]
□

Less than $5,000

□

$5,000 to $14,999

□

$15,000 to $29,999

□

$30,000 to $49,999

□

$50,000 to $74,999

□

$75,000 to $99,999

□

$100,000 or more

□

(VOL) Not sure

□

(VOL) Refused

11. What is you marital status? Are you …..
□

Married

□

Widowed

□

Divorced

□

Separated

□

Single, never married

12. With whom, if anyone, do you live? [READ LIST; SELECT ONE]
□

Alone

□

With a spouse

□

With one or more other family members

□

With one or more friends/people who are not related to me
Page 51 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

13. Of the following choices, which one most closely describes your living situation? Do you live
in…… [READ LIST, COULD BE MORE THAN ONE RESPONSE]
□

My own house or apartment (e.g., free-standing, row house, town house, apartment,
etc.)

□

Non-medical custodial housing (e.g., group home, congregate house, half-way house,
safe-house, recovery house, board and care house, other residential non-medical adult
care facility)

□

In an assisted living setting [if yes, skip to qG15]

□

In a nursing home

□

In a continuing care retirement setting

□

Other [If other, please specify] ____________________________

14. Have you ever lived in an assisted living setting?
□

Yes

□

(VOL) DK

□

(VOL) REF

If yes, how long did you live there? __ _ /_ _ (months/years)
15. Have you ever lived in a nursing home?
□

Yes

□

(VOL) DK

□

(VOL) REF

If yes, how long did you live there?__ _ /_ _ (months/years)

THANK YOU VERY MUCH FOR TAKING THE TIME TO SHARE YOUR EXPERIENCES OF SEEKING
INFORMATION ABOUT SERVICES IN YOUR COMMUNITY. IT IS OUR HOPE THAT THE
INFORMATION THAT YOU PROVIDED WILL HELP IMPROVE THE ACCESSIBILITY AND QUALITY
OF SERVICES IN YOUR COMMUNITY.
I just want to confirm that you consent to our sharing your name, contact information, and
Social Security number (if provided) with the Administration on Aging for possible inclusion
in a future study about the health care usage of individuals seeking long term services or
support. Participation in that study would not involve further contact or any more of your
time.
□

Yes

□

[If no, assure participant that these data will not be provided to AoA.]
Page 52 of 170

PART 1. CLIENT SCEENING TOOL
COMPLETE THIS FORM AND BE SURE THAT IT IS ATTACHED TO PART 2 AND PART 3. RETURN PARTS 1, 2,
AND 3 TO RESEARCH TEAM IN PRE-PAID ENVELOPE. (NOTE – MAILING INSTRUCTIONS WILL BE INCUDED
ONLY ON THE PAPER COPY OF THESE DOCUMENTS).

CLIENT SCREENING TOOL
INSTRUCTIONS FOR COMPLETING THIS FORM:
THROUGHOUT THIS DOCUMENT, CLIENT REFERS TO THE PERSON WHO IS MAKING
CONTACT WITH YOUR AGENCY. CONSUMER IS THE PERSON FOR WHOM THE LTSS
ARE INTENDED.
SOME SCREENING QUESTIONS ARE PREPOPULATED, AND OTHERS MAY BE
ANSWERED DURING THE COURSE OF THE ROUTINE DISCUSSION WITH THE CLIENT.
QUESTIONS 1 AND 2 WILL BE PREPOPULATED BY THE RESEARCH TEAM.
QUESTIONS 3-7 SHOULD BE ASKED IF NOT ANSWERED DURING THE ROUTINE
CLIENT DISCUSSION.
QUESTIONS 8 AND 9 SHOULD BE FILLED IN BY THE AGENCY
1. Agency Name ____________________________________ [WILL BE
PREPOPULATED BY RESEARCH TEAM]
2. Agency Type [WILL BE PREPOPULATED BY RESEACH TEAM]
ADRC
AAA
CIL
3. ASK: “For whom did you contact the agency?”
Self
Parent
Child
Other relative
Friend
Neighbor
Client/Patient*
Other: ____
Page 53 of 170

DK
REF
IF DK OR REF, CLIENT IS INELIGIBLE FOR THE STUDY.
DISCONTINUE SCREENER.
*IF SELF ASK: “Do you have a legal guardian?”
Yes

IF YES TO LEGAL GUARDIAN, CLIENT IS INELIGIBLE FOR THE
STUDY. DISCONTINUE SCREENER.
*IF CLIENT/PATIENT ASK: “Are you a professional caregiver such as a physician,
hospital discharge planner, nursing home staff?”
Yes

IF YES TO PROFESSIONAL CAREGIVER, CLIENT IS INELIGIBLE FOR
THE STUDY. DISCONTINUE SCREENER.
[RESPONSE TO THE FOLLOWING QUESTION SHOULD BE MADE FOR THE PERSON
IDENTIFIED IN QUESTON 3 ABOVE]
4. Are you proficient in English or Spanish?
Yes
No

IF NO, DISCONTINUE SCREENER.
5. ASK,” What is your age (OR THE AGE OF THE PERSON FOR WHOM CONTACT WAS
MADE, IF NOT SELF)”?
______________ Years
PROBE IF UNABLE TO REMEMBER AGE: DO YOU RECALL THE YEAR OF BIRTH?
_______________
Page 54 of 170

[RESPONSE TO THE FOLLOWING QUESTION SHOULD BE MADE FOR THE PERSON
IDENTIFIED IN ITEM #3 ABOVE]
6. IF THE FOLLOWING INFORMATION IS NOT NORMALLY COLLECTED BY YOUR
AGENCY, PLEASE READ THE FOLLOWING TO THE CONSUMER: “I’d like to ask
you a few additional questions to see if you are eligible to participate in a
satisfaction survey. Is it okay if I ask these questions?”
Yes
No

IF NO, DISCONTINUE SCREENER.
7. ASK, “Do you (OR THE PERSON FOR WHOM CONTACT WAS MADE, IF
NOT SELF) have a disability….”
a. Are you deaf or do you have serious difficulty hearing?
□ Yes
□ No
□ DK
□ REF
b. Are you blind or do you have serious difficulty seeing, even when wearing
glasses?
□ Yes
□ No
□ DK
□ REF
c. Because of a physical, mental, or emotional condition, do you have serious
difficulty concentrating, remembering, or making decisions?
□ Yes
□ No
□ DK
□ REF
d. Do you have serious difficulty walking or climbing stairs?
□ Yes
□ No
□ DK
□ REF
e. Do you have difficulty dressing or bathing?
Page 55 of 170

□ Yes
□ No
□ DK
□ REF
f. Because of a physical, mental, or emotional condition, do you have
difficulty doing errands alone such as visiting a doctor’s office or
shopping?
□ Yes
□ No
□ DK
□ REF
g. Do you have a physical, mental, or emotional condition that otherwise
significantly disrupts your life?
□ Yes
□ No
□ DK
□ REF
IF AGE IS LESS THAN 60 AND NO TO ALL ITEMS IN QUESTION 5,
PARTICIPANT IS INELIGIBLE FOR THE STUDY. DISCONTINUE SCREENING.
INSTRUCTIONS: QUESTIONS 8 AND 9 SHOULD BE ANSWERED BY AGENCY BASED ON
OBSERVATIONS OF THE CLIENT.
8. As a result of this contact, did/will the client (OR THE RECIPIENT OF LTSS) receive
any of the following services?
Yes

Information Assistance and/or Referral(s) (not
including options counseling)

Options Counseling or Peer Support/Peer Counseling

Benefits Counseling or Eligibility Determination

Transition assistance

Crisis intervention

Life skills training or support

IF NO TO ALL RESPONSES IN 8 ABOVE, CLIENT IS INELIGIBLE FOR THE STUDY.
DISCONTINUE SCREENING.
Page 56 of 170

NOTE SERVICES RECEIVED OR CLIENT REQUEST
_________________________________
9. Based on your observation, does the client have any apparent physical,
cognitive, or mental conditions that would prevent him/her from making an
informed decision about taking part in this study and /or participating in a 15-20
minutes telephone survey?
Yes

IF YES TO ITEM 8, CLIENT IS INELIGIBLE FOR THE STUDY.
IF NO, CONTINUE TO SECTION 2. STUDY DESCRIPTION/AGREEMENT TO
PARTICIPATE.
For questions regarding how to use the screening tool or complete the form, please
contact the project Co-Principal Investigator, Rosanna Bertrand or team member, Louisa
Buatti:
Rosanna Bertrand, Ph.D.
Louisa Buatti
Abt Associates Inc.
Abt Associates Inc.
(617) 349-2556
(301) 634-1711
Rosanna_Bertrand@
Louisa_Buatti@abtassoc.com
abtassoc.com

Page 57 of 170

PART 2. STUDY DESCRIPTION/AGREEMENT TO PARTICIPATE
COMPLETE THIS FORM AND BE SURE THAT IT IS ATTACHED TO PART 2 AND PART 3. RETURN PARTS 1, 2, AND 3 TO ABT SRBI
IN PRE-PAID ENVELOPE. (NOTE – MAILING INSTRUCTIONS WILL BE INCUDED ONLY ON THE PAPER COPY OF THESE
DOCUMENTS).

STUDY DESCRIPTION/AGREEMENT TO PARTICIPATE
INSTRUCTIONS: READ THE FOLLOWING STATEMENT TO EACH PERSON WHO IS ELIGIBLE TO
PARTICIPATE IN THE STUDY.
The Administration on Aging has contracted with IMPAQ International and Abt Associates, to conduct a study
about the experiences of people like you in obtaining community-based support and services. Your opinion is
very important, which is why you are being invited to participate in a 15 to 20 minute survey which will ask
you about your experiences today. If you agree, someone from Abt SRBI, the company conducting the survey,
will contact you by telephone within the next month to tell you more about the study and confirm whether or
not you want to participate.
Right now, I am asking your permission to share some information about you with Abt SRBI so that they can
call you about participating in the survey. With your permission, I would like to share your name, phone
number, the reason you contacted us today, and a few other pieces of information such as information about
possible disabilities. Your name or other identifying information will be used only to contact you and will not
be stored in the same data file with your responses to the survey or used in any written materials generated in
this study. Your decision will not affect your relationship with this agency nor your eligibility to receive their
services.
May I share this information so that Abt SRBI can contact you for participation in the survey?”
Yes No
IF NO, SAY “Thank you for your consideration.”
IF YES, SAY “Thank you” AND CONTINUE TO PART 3. DATA COLLECTION TOOL

Page 58 of 170

3. DATA COLLECTION TOOL
COMPLETE THIS FORM AND BE SURE THAT IT IS ATTACHED TO PART 2 AND PART 3. RETURN PARTS 1, 2, AND 3 TO ABT SRBI
IN PRE-PAID ENVELOPE. (NOTE – MAILING INSTRUCTIONS WILL BE INCUDED ONLY ON THE PAPER COPY OF THESE
DOCUMENTS).

CONTACT INFORMATION DATA COLLECTION TOOL
INSTRUCTIONS:
COMPLETE THE INFORMATION BELOW FOR EACH PERSON WHO AGREED TO SHARE
CONTACT INFORMATION WITH THE RESEARCH TEAM IN ORDER TO RECEIVE A FOLLOWUP CALL TO PARTICIPATE IN A TELEPHONE SURVEY.
THROUGHOUT THIS DOCUMENT, THE CLIENT REFERS TO THE PERSON WHO CONTACTED
THE AGENCY.
1. Date of Contact with Agency (month, date, year) _ _ /_ _ /_ _
2. ASK: What is your name (First, Middle, Last) _____________, ________, __________________
3. ASK: “What is the best phone number where you can be reached by the research team?”
Client Phone number (_ _ _) _ _ _ - _ _ _ _
4. ASK: “What is the best time for someone to call you about participating in the study?”
Preferred time to call _ _: _ _
Preferred day to call?

5. ASK: “Would you like assistance from a Spanish interpreter when the research team calls you to
discuss the study?”
No
Yes
6. ASK: “Would you like to use TTY service for the study?”
No
Yes
[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

Page 59 of 170

ASK: “What was the main reason that you contacted us today?”
Income assistance
Energy assistance
Medicare questions
Medicaid questions (including about HCBC waivers)
Housing
Personal care
Transportation
Nutrition
Chronic health conditions
Employment
Support groups
Recreation opportunities
Caregiver/respite support
Home modification
Attendant care services
Advocacy
Education
Services for emergent cares/crisis intervention
Preventative health services
Ombudsman/abuse or neglect issues
Advanced directives
Mental health
Transition services
Other Independent living supports or services
Other, please specify
7.

ASK: “Is this the first time you contacted this agency?”
First time contact
Repeat contact

QUESTIONS 9-11 SHOULD BE ANSWERED BY THE AGENCY.
8.

Mode of Contact with Agency
Visited
Telephoned

IF THE CLIENT STOPPED THE QUESTIONNAIRE BEFORE COMPLETING IT, PLEASE
SELECT THE BEST/MOST LIKELY REASON FOR STOPPING:
Page 60 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

Client refused to answer
Client’s cognitive abilities prevented completion of questionnaire
Client’s physical condition prevented completion of the questionnaire
Client’s emotional condition prevented completion of the questionnaire
Other, please explain ________________________________________
10. The signature of the person who administered this questionnaire indicates that he/she has read the above
statement to the consumer/consumer representative and that the person has agreed to have his/her personal
information released to Abt SRBI for the purpose of the evaluation.
Name______________________ Date__________
For questions regarding how to use the screening tool or complete the data collection tool, please contact the
project Co-Principal Investigator, Rosanna Bertrand or team member, Louisa Buatti:
Rosanna Bertrand, Ph.D.
Abt Associates Inc.
(617) 349-2556
Rosanna_Bertrand@ abtassoc.com

[ID# _______ES (will be pre-filled)]

Louisa Buatti
Abt Associates Inc.
(301) 634-1711
Louisa_Buatti@abtassoc.com

[Agency Name ____________ (will be pre-filled)]

Page 61 of 170

PROCESS EVALUATION SURVEY STATEMENT OF INFORMED CONSENT

[The process evaluation survey is intended to be administered as an online survey and the statement of
informed consent will appear on page one. Respondents will have received an email invitation prior to
opening the survey that will describe the study and provide instructions and a link to the survey.]

Statement of Informed Consent

This online survey funded by the Administration on Aging is part of a larger evaluation project measuring the
effect of integrated systems on long-term care service delivery. It is designed to help the Administration on
Aging: (1) gain an understanding of long term care support and service programs from State and local
perspectives, (2) inform the analysis of consumer outcomes, and (3) collect information that will guide
recommendations for continuous quality improvement for the long term service and support field in general
and the Aging and Disability Resource Center initiative specifically. Program information collected through
this survey will be shared with AoA, however, no direct quotes or individual responses will be attributed to
particular respondents or organizations. Your participation in this survey is voluntary and you can refuse to
answer any question. No penalty or loss of program benefits or resources will result from refusal to
participate. We expect this survey to take approximately one hour to complete; however, it could take longer
if it is necessary to collect data from other sources.
If you have questions about this survey you may contact Daver Kahvecioglu, Project Director at IMPAQ
International, LLC at (443) 367-0088 ext. 2223, For questions about your rights as a participant in this study,
please call Teresa Doksum, Abt Associates Inc. Institutional Review Board Chair, at (617) 349-2896
By completing and submitting this online survey, you are agreeing to the terms stated in this informed
consent.

Page 62 of 170

PARTICIPANT EXPERIENCE SURVEY STATEMENT OF INFORMED CONSENT
I will read to you a statement of informed consent that will provide you with information about the survey and
inform you of your rights as a survey respondent. The Administration on Aging is sponsoring a national
evaluation of the accessibility of community long-term support services. You are receiving this call because
you contacted the [name of agency] on [insert date] and gave your permission for a research team to contact
you to participate in a brief telephone survey about your experience. The survey is being conducted by Abt
SRBI on behalf of the Administration on Aging. Your input about your experiences in obtaining communitybased support and services is important to us. Your participation in this 15 – 20 minute survey is completely
voluntary and you may choose to discontinue the interview at any time, for any reason.
We will combine the information that we gather from all participants (about 6000), and include the findings in
a report that will be prepared for the Administration on Aging for the purpose of improving its services. Your
name or any other identifying information will not be used in any report generated in this study. Your
confidentiality will be protected to the extent provided by law. There will be no direct benefit to you from
participating in the evaluation, nor will your or your family’s services be impacted in any way by your
responses to this survey. The information you provide will help the Administration on Aging improve its
services for both older Americans and individuals with disabilities.

Page 63 of 170

LETTER OF SUPPORT FROM THE ADMINISTRATION ON AGING FOR
ORGANIZATIONS PARTICIPATING IN THE PROCESS EVALUATION

Dear [RESPONDENT NAME],
The Administration on Aging (AoA) had contracted IMPAQ International LLC and Abt Associates Inc., to
evaluate the Aging and Disability Resource Center (ADRC) Grant Program. The overall purpose of the
evaluation is to gather a range of program and consumer information to help AoA better understand how to
best support the delivery of long-term services and supports (LTSS). The study will consider the effectiveness
of different approaches to the provision of long-term care services and supports from the organizational and
individual perspectives. We are writing to encourage you to participate in this study by completing an online
survey about the general operational processes of your [ADRC, AAA or CIL].
This online organizational-level survey is designed to (1) provide an understanding of long term care support
and service programs from State and local perspectives, (2) inform the analysis of consumer outcomes, and (3)
collect information that will guide recommendations for continuous quality improvement for the long term
service and support field in general, and the Aging and Disability Resource Center initiative specifically.
Program information collected through this survey will be shared with AoA, however, no direct quotes or
individual responses will be attributed to particular respondents or organizations. Your participation in this
survey is voluntary. [For respondents who also respond to the SART: In order to reduce the burden to you,
this data collection replaces part of your semi-annual Reporting Tool (SART) reporting requirement. There will
be several questions that ask you to confirm existing data from your organization, reported through previous
SART submissions.]
We ask that you participate in this survey and provide us with honest feedback about your program so that
we can better understand how services are actually provided and gain needed insight into the consumer
experience.
We expect this survey to take approximately one hour to complete; however, it could take longer if it is
necessary for you to consult with other staff or program records.
If you have any questions about your participation in this evaluation, please e-mail the AoA Project Officer for
this project Susan Jenkins at Susan.Jenkins@AoA.HHS.gov.
Thank you in advance for your support of this effort,
Page 64 of 170

PROCESS EVALUATION SURVEY INVITATION FOR SITE DIRECTORS/MANAGERS OR
OTHER STAFF

Your organization has been selected to participate in an online survey sponsored by the Administration on Aging as part
of a larger evaluation to help AoA better understand how to best support the delivery of long-term services and

supports (LTSS). The study considers the effectiveness of different approaches to the provision of long-term
care services and supports from the organizational and consumer perspectives.
This survey is designed to collect information about your program including program goals, daily operations,
partnerships, and the availability of services in your community. Your opinions and experiences are extremely
important. The information that you and others provide will be aggregated and used to make improvements to current
and future Administration on Aging grant programs. The data will be used to (1) provide an improved understanding

of long term care service and support programs from the State and local perspectives, (2) inform the analysis
of consumer-level outcomes, and (3) guide recommendations for continuous quality improvement for the long
term service and support field in general, and the Aging and Disability Resource Center initiative specifically.
Your responses will be held in confidence and will only be used in combination with those of other respondents; neither
you nor your organization or network will be individually identified when the data are shared with Administration on
Aging, staff within your organization, or any other agency except as required by law.

We expect this survey to take approximately one hour to complete; however, it could take longer if it is necessary to
collect data from other sources. Please click on this link to start the survey: http://xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Once you have accessed the survey, proceed through it by clicking on the navigation buttons. You will be able to exit
and return to the survey at any time between [month day, 2012] and [month day, 2012]. The program will automatically
bring you back to the last page on which you were working. Use the "Back" navigation button to review and/or edit
earlier responses.

Please note that the dial found in the lower left corner on each page of the survey is an indication of your progress
toward completion of the survey.

Thank you in advance for your support!
Susan Jenkins, PhD, Social Science Analyst
Office of Performance and Evaluation
US Administration on Aging,US Department of Health and Human Services
Washington, DC 20201
Telephone-202.357.3591; Fax-202.357.3549; E-mail- Susan.Jenkins@AoA.HHS.Gov
Page 65 of 170

LETTER OF SUPPORT FROM THE ADMINISTRATION ON AGING TO POTENTIAL
ORGANIZATIONS SELECTED FOR THE OUTCOME EVALUATION

Dear [DIRECTOR NAME],
The Administration on Aging (AoA) had contracted IMPAQ International, LLC and Abt Associates Inc., to
evaluate the Aging and Disability Resource Center (ADRC) Grant Program. The overall purpose of the
evaluation is to gather a range of program and consumer information to help AoA better understand how to
best support the delivery of long-term services and supports (LTSS). The study will consider the effectiveness
of different approaches to the provision of long-term care services and supports from the organizational and
individual perspectives. We are contacting your organization to ask you to participate in the consumer-level
data collection effort. The data supplied by your organization or network and its consumers will be combined
with data from other organizations or networks to determine which approaches to service provision work best
for different types of consumers and under what circumstances.
[ORGANIZATION NAME] has been selected to participate in the study based on its geographic location and
other community-level attributes. We are asking for assistance from the I&R / I&A specialists in your
organization or network to screen and recruit consumers to participate in a survey to be administered by the
research team. We expect that screening and recruiting participants will take less than five minutes and can
be done during the course of routine interaction with consumers. In fact, much of the needed information is
likely already collected by your staff. Training and ongoing support will be provided to I&R/ I&A specialists by
the researchers. To provide you with more information, we have included a one-page fact sheet about the
evaluation with this letter.
In approximately one week, you will receive a phone call from the evaluators at Abt Associates who will
provide you with more information concerning the study and formally request your organization’s
participation.
If you have any questions about your participation in this evaluation, please email Susan Jenkins at
Susan.Jenkins@AoA.HHS.GOV.
Thank you for your participation,

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ADRC EVALUTION FACT SHEET

[Will be sent with Letter of Support from the Administration on Aging to potential organizations selected for
the outcome evaluation]
Sponsor: This study is being sponsored by the Administration on Aging (AoA) an operating division of the US
Department of Health and Human Services
Purpose: To help AoA better understand how to support the delivery of long-term services and supports
(LTSS). The study will consider the effectiveness of different approaches to the provision of long-term care
services and supports from the organizational and consumer perspectives.
Benefits to your organization: While there are no direct benefits to your organization, the information that
you collect will provide important insight into the provision of long-term services and supports (LTSS). This will
help organizations, such as yours, and Agencies, such as AoA, improve LTSS policies and practices. The
ultimate benefit is for consumers.
Your role: If your organization is able to participate in this important research, your organization will be asked
to:
1. Provide contact information for the frontline staff (I&R/I&A) with whom consumers first come into
contact. Estimated time required: varies by organization
2. Allow the research team to contact these staff and provide them with training and technical support
regarding their role in the research study. Estimated time required: 30 minutes per staff member
3. Over a 3-6 month period, as I&R/I&A staff are contacted by consumers they will ask them a few
screening questions and gather contact information. Estimated time required: 5 minutes per
consumer.
4. Send the screening and contact information to the research team approximately monthly. Estimated
time required: 15 minutes per month.

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OUTCOMES EVALUATION RECRUITMENT TELEPHONE SCRIPT
Recruitment calls are made to the directors at local-ADRC, AAA, and CIL sites that have been
selected to participate in the outcome evaluation. This call is made approximately one week
following the expected date that the agency director receives the AoA letter of support.
Step 1: Describe main parts of study and informed consent, answer any questions

Hello/ Good morning/ Good afternoon. My name is [
]. I am calling from Abt Associates
about a study we are conducting for the Administration on Aging (AoA). You should have
received a letter from AoA alerting you to the study within the past week or two. Did you
receive the letter?
1. [If no, skip to # 2] If YES, Did you have a chance to look it over [if no, skip to #2]? To
remind you, the study involves a telephone survey that will be administered to some of
your consumers. It is designed to help AoA better understand the experiences of older
adults and persons with disabilities in obtaining community-based support and services through
organizations like yours. I am calling to answer any questions that you might have about
the study and to confirm your organization’s involvement. But, first let me tell you a bit
about the study. Participation in this study by your organization is voluntary so you may
choose not to join and will not be penalized for your decision. If you agree to
participate, we will ask that your key I&R/I&A specialists participate in a 40 minute
webinar training program, screen consumers who contact them over a 3-6 month period
for eligibility in the study, and collect and forward this information to the research team.
The eligibility screener gathers information about whether the consumer contacted you
for themselves or someone else (e.g., the primary consumer), the primary consumer’s
age, whether the primary consumer has any of a range of physical or mental disabilities,
and the type of services the consumer received or was referred to. The data collection
portion requests the consumer’s contact information (so that the research team can
contact them to conduct the interview); whether they need any accommodations for
the interview, such as a Spanish speaking interviewer or if they will be using a TTY
service; the main reason for their contact with your organization; and the mode of
contact (e.g., telephone, walk in). Because you likely already collect much of this is
information, it is expected that the eligibility screening and data collection will take less
than five additional minutes. I&R/I&A specialists will also be asked to forward the data
to the research team according to a schedule we jointly determine, most likely monthly.
Say, “Is your organization able to participate in the study?”
If NO, say “Can I ask why?” “Thank you for your time.”
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If YES, say “Great. You will be receiving follow-up email from the research team confirming your
participation, and asking for contact information for the organization’s I&R/I&A specialists.
With your permission, we will follow-up with them directly regarding their participation and to
provide information about the training. ”
2. If NO (did not receive the letter) or if did not have a chance to look over study
materials, let me tell you about the study.
The study involves a telephone survey that will be administered to some of your
consumers. It is designed to help AoA better understand the experiences of older adults
and persons with disabilities in obtaining community-based support and services through
organizations like yours. Your participation in this study is voluntary so you may choose
not to join and will not be penalized for your decision.
If you agree to participate, we will ask that your key I&R/I&A specialists participate in a
40 minute webinar training program, screen consumers who contact them over a 3-6
month period for eligibility in the study, and collect and forward this information to the
research team. The eligibility screener gathers information about whether the
consumer contacted you for themselves or someone else (e.g., the primary consumer),
the primary consumer’s age, whether the primary consumer has any of a range of
physical or mental disabilities, and the type of services the consumer received or was
referred to. The data collection portion requests the consumer’s contact information (so
that the research team can contact them to conduct the interview); whether they need
any accommodations for the interview, such as a Spanish speaking interviewer or if they
will be using a TTY service; the main reason for their contact with your organization; and
the mode of contact (e.g., telephone, walk in). Because you likely already collect much
of this is information, it is expected that the eligibility screening and data collection will
take less than five additional minutes. I&R/I&A specialists will also be asked to forward
the data to the research team according to a schedule we jointly determine, most likely
monthly.
Say, “Is your organization able to participate in the study?”
If NO, say “Thank you for your time.”
If YES, say “Great. You will be receiving follow-up email from the research team confirming
your participation, and asking for contact information for the organization’s I&R/I&A specialists.
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With your permission, we will follow-up with them directly regarding their participation and to
provide information about the training. ”

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SECTION 2: COMMENTS TO ORIGINAL 60-DAY NOTICE,
RESPONSES TO COMMENTS RECEIVED, AND REVISED DATA
COLLECTION TOOLS

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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
Aging and Disability Resource Center Grant Program Evaluation
Comments by the National Council on Independent Living (NCIL) ADRC Task
Force
Submitted to AoA (Now ACL2) on December 13, 2011
The National Council on Independent Living (NCIL) considers the Evaluation of Aging and
Disability Resource (ADRC) Grant Program participants to be an important opportunity to
measure and evaluate the impact of ADRCs. NCIL believes that the process of ADRC Grant
Program Evaluation is a chance to identify strategies to increase access to programs and longterm services and supports for seniors and people with disabilities. If the primary goal of the
ADRCs is to create a single, coordinated system of information and access for all persons
seeking long-term services and supports, regardless of age, disability or income, we do not
believe that this process and evaluation will result in those findings. NCIL suggests that the
following issues be addressed:
1) We find it problematic that Centers for Independent Living and the disability community
were not involved in the design of the ADRC evaluation from the beginning.
Response: Centers for Independent Living and members of the disability community
have been involved in the evaluation design in a meaningful way from the beginning of
the process. For example, several members of disability organizations are members of
the technical advisory group for this evaluation. These include:
a. K. Charlie Lakin, PhD Center on Community Living Director University of
Minnesota
b. Henry Claypool, Director of the Office on Disability, US Health and Human
Services
c. Melissa Hulbert, MA, Acting Director, Division of Community Systems
Transformation, CMS
d. Louis Frick, Executive Director, Access to Independence
e. Sue Swenson, Deputy Assistant Secretary, Office of Special Education and
Rehabilitative Services
In addition, the research team includes a disability services expert and made multiple
attempts via phone and email to collaborate with key NCIL staff throughout the design
phase. In June 2011, staff from seven Centers for Independent Living participated in a
discussion on the feasibility of Centers for Independent Living participating in the
evaluation as designed.

As of April 2012 the Administration on Aging, the Office on Disability and the Administration on Developmental
Disabilities were combined into a single agency, the Administration for Community Living (ACL) that supports
both cross-cutting initiatives and efforts focused on the unique needs of individual groups, such as children
with developmental disabilities or seniors with dementia. For more information see:
https://federalregister.gov/a/2012-9238 or http://hhs.gov/acl
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
2) NCIL is concerned with AoA’s evaluation of Options Counseling when AoA standards
for Options Counseling are not yet finalized.
Response: This evaluation is an evaluation of ADRCs which include Options Counseling.
To that end there are four questions in the Process Evaluation survey (numbers 32-35)
ask about whether Options Counseling or a similar service is provided and the
Participant Experience Survey asks respondents who have received one-on-one
counseling about their options (i.e., Options Counseling) to provide feedback on those
services through a series of five questions (section E.2.1-5). This is not an evaluation of
Options Counseling itself, but rather these questions are to determine the extent to
which one-on-one counseling regarding Long term service and support options is
provided (process evaluation survey) and whether consumers find it to be helpful
(Participant Experience Survey).
3) We find it counterproductive to compare services provided by CILs and AAAs when each
are designed drastically different, especially when many of the services that are being
measured are offered by other entities such as the State, Housing Authorities, Home
Health Agencies, etc.
Response: The evaluation design has been revised and Centers for Independent Living
will not be used to identify consumers for participation in the comparison group.
4) While we do understand the need to use an organization that reaches a more diverse age
group and a wider range of individuals with disabilities as a comparison group in the
evaluation, the mission of Centers for Independent Living is fundamentally different than
ADRCs. The current design, which involves use of CILS requesting participation of their
consumers in the areas of the country without ADRCs is not acceptable to us.
Response: The evaluation design has been revised and Centers for Independent Living
will not be used to identify consumers for participation in the comparison group.

5) The use of a comparison group is not necessarily needed to determine if the ADRCs are
indeed providing better access to long-term services and supports to people of all ages,
incomes and disabilities. Rather, the evaluation of ADRCs should only be asking the
existing ADRCs what they are doing to meet and the extent to which they are meeting the
definition and standards stated in the Older Americans Act.
Response: Title II Section 206 of the Older Americans Act of 1965 specifies that the
Assistant Secretary for Aging ―shall measure and evaluate the impact of all programs
authorized by this Act.‖ The ADRC program is authorized under Title II Section 202
Subsection b of the OLDER AMERICANS ACT AMENDMENTS OF 2006 (PUBLIC
LAW 109–365—OCT. 17, 2006 )3. In order to determine the impact of ADRCs a
comparison group is needed for this evaluation. But, the evaluation design has been
revised and Centers for Independent Living will not be used to identify consumers for
participation in the comparison group.

Downloaded from http://www.doleta.gov/reports/pdf/pl_109-365.pdf on 12-5-11
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
In addition, guidance from the Office of Management and Budget supports the use of a
comparison group in this case. According the Guidance from the Office of Management
and Budget released on October 7, 2009 ―Rigorous, independent program evaluations can
be a key resource in determining whether government programs are achieving their
intended outcomes as well as possible and at the lowest possible cost.‖4 This initiative
focuses on impact evaluations, or evaluations aimed at determining the causal effects of
programs.
Previous guidance from the Office and Management and Budget, also supports the use of
the most rigorous evaluation design possible. In their January 20, 2006 Memorandum for
the President’s Management Council5 they provided the following guidance regarding
evaluation methods:
―When agency research questions involve trying to determine whether
there is a causal relationship between two variables or whether a
program caused a change for participants, then agencies will need to
employ an experimental or quasi-experimental design or demonstrate
how their study design will allow them to determine causality. ― (page
20)
As an experimental design is not feasible, the next most rigorous evaluation
design is a quasi experimental design which compares outcomes from
program participants to outcomes for comparison groups that do not receive
program services. Therefore, a comparison group is required to determine if
the ADRC model is better than the alternatives.

6) Based on our observations NCIL has found that many problems with ADRCs do not lie at
the local level, but rather at the state level. Therefore, we believe that this evaluation
would yield more useful information if it were focused more towards the state level
organizations rather than local.
Response: State and local processes are being assessed through a process evaluation.
A representative from every state and local ADRC will be invited to participate in
the process evaluation. One of the unique aspects of the ADRC program is the
integration of the state and local levels. An evaluation of the program would be
incomplete if the local level processes and experiences were not included.
7) NCIL sees the importance for a more stringent evaluation on the state level to hold states
accountable for coordinating their efforts with CILs and AAAs. In addition, with only
57% of ADRCs reporting having active CIL involvement, NCIL is concerned with how
the other ADRCs will be evaluated.

http://www.whitehouse.gov/sites/default/files/omb/assets/memoranda_2010/m10-01.pdf

http://www.whitehouse.gov/sites/default/files/omb/inforeg/pmc_survey_guidance_2006.pdf
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
Response: All of the ADRCs will be evaluated using the same instruments and analyses.
ACL (formerly AoA) has information in its records regarding which ADRCs have
formal partnerships with CILs. Therefore, as designed, this evaluation will be able to
analyze whether, at the local level, ADRCs with CILs as partners are operate differently
from ADRCs without CIL partners as well as whether consumer outcomes are different
for ADRCs with CIL partners and those without CIL partners.

8) From our experience, it does not seem likely that many CILs will have the staff time or the
resources to complete such an extensive survey. Many CIL’s staff and budgets are
stretched, and currently there are not funding resources available to assist CILs with
staffing this process.
Response: The evaluation design has been revised and Centers for Independent Living
will not be used to identify consumers for participation in the comparison group.
9) It was our understanding that the purpose of this evaluation was to understand if ADRCs
are making a difference in how services are provided and if they are in fact meeting the
standards and definition as defined in the Older Americans Act which is to streamline
access to long-term care. However, the Support Letters and Fact Sheet at the end of the
evaluation tool states that the purpose it is to help AoA better understand how to support
the delivery of long-term services and supports (LTSS). The purpose of this evaluation
needs to be clarified.
Response: There is no contradiction between the goal of the evaluation as stated in the
justification and the Support Letters and the Fact Sheet. The text used in the Support
Letters and Fact Sheet was simplified to be more comprehensible to the recipients.
10) Some of our concerns on the tool itself:
a. Process Evaluation:
i. State IL Associations should be included in this evaluation. In many states
these organizations are involved, especially at the state level. Currently,
these organizations have been left out completely
Response: State Independent Living Associations have not been
included in the evaluation because this is not an evaluation of Centers
for Independent Living.
ii. CILs are required to complete a 704 report, a data collection tool defined by
RSA, each year. This evaluation’s statistical and demographic data
corresponds with SART data collection. SART and 704 reports do not
categorically correspond. Therefore, CILs will be unable to respond
accurately to statistical and demographic questions.
Response: The evaluation design has been revised and Centers for
Independent Living will not be used to identify consumers for
participation in the comparison group.

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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
iii. Some of the evaluation questions are requesting responses as to how
services were seven years ago, prior to the ADRC grants to present. The
responses to these questions will not be accurate if there has been staff
turnover at the state or local levels.
Response: In response to this comment, we have added a not applicable
option to questions that ask about services and community contact seven
years previous.
iv. According to the AoA website ADRCs were designed to streamline access
to long-term care. There are multiple items in the process evaluation that are
not necessary to evaluate the streamlining of access to long-term care.
A. Page 12 - #20. We do not find it necessary to ask about what topics
consumers most commonly ask about to evaluate streamlining of
access to LTC. For the purpose of this evaluation, the only topics
and services that should be covered should be related to LTC.
Response: The purpose of this question is to gain a sense of how
consumers that contact the different organizations (ADRCs and
AAAs) may differ in their service needs. The information will be
used to inform the interpretation of the data collected.
B. Page 14 – We do not find it necessary to as what entity at local
level does advocacy, nursing home/institution diversion, how it is
tracked, or if the entity provides transition services. Advocacy has
lots to do with LTC but not with the streamlining access. If you are
part of the ADRC or a partner of one, then you have agreed to
working on streamlining access to LTC, therefore advocacy should
not be necessary to streamline if the state and partners all agree.
Response: All questions in process and outcome evaluation map
directly to the functions, mission and goals of the two
organizations. More specifically, advocacy questions were added
to address long term services that were determined to be more
relevant for younger individuals with a disability. During the
process evaluation we are also trying to assess the availability of
different types of services. We would expect the outcome
evaluation results to vary based on the availability of adequate
resources in the community. The evaluation was designed to
identify where breakdowns exist amongst partners and which
could affect client/consumer outcomes.

C. Page 17 - #33. We find it irrelevant to know how many individuals
were referred for services unrelated to access to LTC.
Response: The skip pattern for this question has been changed so that it will only be
asked of local-level staff.
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
D. Page 19 - #36. CILs would not know the number of consumers
(questions use term clients) enrolled in Medicaid HCBS Waivers
outside of their own consumers if they are a HCBS provider. In
addition, not all CILs are HCBS providers. CILs would also not
know numbers of individuals enrolled in Medicaid residing in
institutions in their service area. Centers do not have access to
these numbers. This section is to be completed by sites that refer
consumers (clients) to public programs only. Because a site makes
a referral does not necessarily mean the individual is enrolled.
CILs do not have access to this type of data from other providers.
Response: The evaluation design has been revised and Centers for
Independent Living will not be used to identify consumers for
participation in the comparison group.
E. Page 22 - #48. How organizations use performance data is not
relevant to improve consumer access to long-term care. Many of
the options provided are also irrelevant to consumer access to longterm care.
Response: The purpose of this question (now #46) is to determine
the extent to which the program uses performance-based
management as a proxy for program quality and flexibility. The
data may be used as a control variable for the analyses of outcome
evaluation data.
F. Page 22 - Section D.
I.
#50. The total budget of a CIL is not relevant to this
evaluation. Similarly, #51 should only be concerned with
funding related to the ADRC for the purpose of this
evaluation.
RESPONSE: The evaluation design has been revised and Centers for Independent
Living will not be used to identify consumers for participation in the comparison group.

II.

#54. Language should be modified to clarify that the
evaluation is asking what organizations comprise the core
operating organizations of the ADRC.
Response: The organizations providing respondents for the comparison group will
not be part of an ADRC. The evaluation team believes that the diversity of
partnerships is an important control variable for the analyses of outcome evaluation
data.
III.

#55. This item should refer to partnerships within the
ADRC only. Any other partnerships are not relevant to this
evaluation.
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
Response: The organizations providing respondents for the comparison group will not
be part of an ADRC. The evaluation team believes that the diversity of partnerships is
an important control variable for the analyses of outcome evaluation data.
IV.

#56-58. It should be made clear that these items are in
regard to staff working on ADRC goal of streamlining
access to LTC, not all positions are relevant.
Response: These questions are now #64-66. The evaluation team believes that agency
capacity as measured through human resource levels is an important control variable
for the analyses of outcome evaluation data.
G. Page 8 & 9 - We find that the lists of services available are focused
around aging and that many are irrelevant to evaluate access to
LTC. We find it unnecessary to ask about other services such as
education, employment, housing, socialization/recreation, etc.
which have little to do with streamlining access to LTC. Many of
the services on the list are necessary for a consumer to become
more independent but are not related to streamlining access to
LTC.
Response: As ADRCs are tasked with providing access to the full-range of long term
care services, the research team wants to collect information about any services that
consumers may seek from an ADRC or AAA. In addition, services such as
education, employment, housing, and socialization/recreation are quite relevant to
younger audiences’ ability to remain in the community, which is an outcome of
streamlined LTSS. With regard to CILs, the evaluation design has been revised and
Centers for Independent Living will not be used to identify consumers for
participation in the comparison group.
I.

This list also includes attendant care in parentheses behind
Independent Living Services, HCBS Medicaid Waiver
Program, and Personal Care Services which seems to be
repetitive. Rather, we suggest listing the Medicaid waivers
and Personal Care services separately due to the fact that
not all individuals needing personal care services would
qualify for Medicaid waivers. We suggest listing the
Independent Living Services, but the examples given are
home modifications and attendant care, which do not
capture the goal of IL services. The four core services of IL
are I & R, Peer Support, Independent Living Skills
Training (budgeting, cooking, menu planning, cleaning,
etc.), and Advocacy (Individual and Systems). That being
said IL Services typically go much further than the four
core services usually based on consumer needs in the CIL’s
area. So other services could be housing, education,
employment, assistive technology, benefits counseling, etc.
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
Therefore we suggest modifying the examples of IL
services provided.
Response: The examples have been revised as suggested in the comment.
H. Page 16 - Question 29. CDSMP and DSMP should be defined.
Similarly, all acronyms and study related language should be
defined initially.
Response: The tools have been revised as suggested in the comment.
I. Page 16 - Question 30. This question needs to be clarified. Does
the CIL have a marketing plan in general or in regard to accessing
LTC? If used, the question should only be concerned with a
marketing plan in regard to accessing LTC.
11) Response: The evaluation design has been revised and Centers for Independent
Living will not be used to identify consumers for participation in the comparison
group.
a. Participant Survey:
i. If a consumer contacts a CIL about services not pertaining to community
based services/LTC then these individuals should not be passed on for the
evaluation. Again, they have nothing to do with evaluating the purpose of
the ADRC.
Response: The evaluation design has been revised and Centers for Independent
Living will not be used to identify consumers for participation in the comparison
group.
ii. Page 32 - If REF, can I ask why you are not interested in participating? The IL Philosophy is consumer controlled therefore it is the consumers
choice to participate and should not be questioned.
Response: The evaluation design has been revised and Centers for Independent
Living will not be used to identify consumers for participation in the comparison
group.
iii. The ADRC/CIL/AAA’s staff person that does I & R/I & A will go through a
training on Eligibility Screening to complete the Client Screening Tool.
Then in the next 3-6 months, they screen new consumers coming in for
eligibility to do the survey. Finally, the CIL would provide those names with
contact information to the surveyors. We have concerns about asking these
questions to new consumers who we have not yet built a relationship with.
RESPONSE: The evaluation design has been revised and Centers for Independent
Living will not be used to identify consumers for participation in the comparison group.

iv. Not all CILs have a designated person doing I & R/I & A. The CIL
partnering in a particular area may have a small staff or may be a satellite
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
office with a small number of staff. Many CIL’s staff and budgets are
stretched, and currently there are not funding resources available to assist
CILs with staffing this process.
RESPONSE: The evaluation design has been revised and Centers for Independent
Living will not be used to identify consumers for participation in the comparison group.

v. Again, there are many questions in the Participant Survey that are not
related to streamlining access to LTC.
A. What type of services, if they received services, what was
requested, where they found out about (CIL), etc. are all questions
that do not evaluate the ADRC purpose of streamlining services.
The questions more relevant to evaluating the purpose of ADRCs
are the items related to the process of how and the extent to which
they were served i.e. no wrong door, warm transfer, etc.
B. Again, the list of services provided goes beyond the scope of
streamlining access to LTC as stated above.
C. Page 36 - #5. This question along with Section C that follows it are
evaluating the CIL and/or staff not the process of the ADRC.
RESPONSE: The purpose of the questions referred to in v. A-C above is to
get a full picture of the consumer’s service experience. Streamlining access to
services is not the only charge of the ADRCs and therefore, these questions
ask about other important features of consumer service. The data related to
each question maps to the evaluation research questions. In addition, the
evaluation design has been revised and Centers for Independent Living will
not be used to identify consumers for participation in the comparison group.
D. Page 38 - #5. NCIL suggests adding “if assistance was requested.”
Obviously this would not be offered if they did not need an action
plan to meet LTC needs. CILs are required to offer each consumer
an Independent Living Plan or they may choose to sign a waiver to
not develop a plan. This question jumps quickly into whether the
agency/organization developed a plan for LTCSS. Not all customers
need LTCSS. It seems this would be better located further into the
survey under Options Counseling.
RESPONSE: The language of the question will be changed to add ―if
assistance was requested‖.

E. Page 38 - Section D - NCIL suggests changing the language of this
section and instead use “Institution Diversion”. The current
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
language, Long-term Care Diversion, conveys diverting LTC
services completely including community based.
RESPONSE: The title of this section will be changed to ―Institutional
Diversion‖

F. Page 41 - #7. This item asks what agency/organization the customer
was referred or transferred to. The options provided are all various
types of services, not the types of agencies/organizations. But, the
agency/organization list should only be relevant to the ADRC.
RESPONSE: The question will be changed to read ―To what supports and
services were you….‖

G. Page 42 - Section E.1. NCIL suggests a statement be added to make
sure the consumer understands the interviewer is talking about
Medicaid. The differences between Medicaid and Medicare are very
confusing to many consumers and people in general.
Response: Through programming in the CATI system the term ―Medicaid‖ will be
replaced with the name of the Medicaid program in the consumer’s state.
H. Page 47 - #7. The language of this chart (i.e. professionalism,
comprehensiveness, dissatisfied, etc.) tends to be complex and
should be worded to be more friendly for consumers. Additionally,
we suggest the use of “Not Satisfied” rather than “Dissatisfied” to
reduce the opportunity for misinterpretation by consumers. We
believe that many individuals with cognitive or intellectual
disabilities will have difficulty providing accurate responses with
the current language.
RESPONSE: This language was taken from a satisfaction survey currently
used by several ADRCs which serve individuals with cognitive and intellectual
disabilities. For continuity, the language will not be changed unless indicated
during the cognitive testing phase of this study.

I. Page 49 - Section G. We find this section, especially Questions 1-4,
to be extremely intrusive and irrelevant in a satisfaction survey to
evaluate the purpose of ADRCs. We would consider it irresponsible
for consumers to allow their insurance numbers and health care
information to be tracked for an undefined number of years. Centers
advise consumers not to give out personal information such as
insurance numbers. In addition, these items do not obtain any
information in regards to participant experience.
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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
RESPONSE: These data will inform the interpretation of the data and help
the research team to determine what types of consumers tend to contact each
type of organization and whether outcomes are dependent on a consumer’s
current assessment of their health status. With regard to the request for
Medicare/Medicaid numbers, these will no longer be requested through this
research. Rather, respondents will be asked to provide other information that
could be used by the Centers for Medicare and Medicaid Services to access
respondents’ health care utilization data. These are date of birth, zip code
and the last four digits of respondents’ social security numbers.

b. Page 42 - Section E.1. This section asks questions about eligibility for Medicaid,
Care transitions, etc. CILs have no control over eligibility; that is a state issue. We
do not believe obtaining this information will be beneficial to improve access to
such services, expedite eligibility, or to encourage “presumed eligibility
requirements.”
Response: Based on the existing skip patterns, these questions will only be asked
if they are relevant to a respondent. In addition, these questions are relevant for
understanding the range of services that clients are receiving. The services asked
about have been shown, through other research, to promote individuals’ ability
to live in the community
c. Client Screening Tool
i. While the Client Screening Tool refers to the person who is making contact
with a CIL, CILs still consider these individuals to be consumers. Therefore,
the language of this section should be modified to “Consumer Screening
Tool.”
Response: Different organizations refer to clients and consumers using
different terms. The term client applies to the largest number of
organizations included in this evaluation and, therefore, will be remain in
the title of the tool.
ii. Again, if a consumer contacts a CIL about services not pertaining to
community based services/LTC then these individuals should not be passed
on for the evaluation. These are also irrelevant to evaluating the purpose of
the ADRC.
Response: Question #7 on the Client Screening Tool asks if a consumer received any
of the types of services that are also offered by an ADRC. Only individuals who
received such services would be to be eligible for participation in the study.
iii. Page 57 - #7. Questions referring to specifics of an individual’s disability
are intrusive. The individual or the person for whom contact was made has a
disability or the CIL would not be providing them services and a referral
would not be taken.

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COMMENTS RECEIVED IN RESPONSE TO THE 60-DAY FEDERAL REGISTER NOTICE
AND RESPONSES
Response: These questions are pulled from the US Department of Health and Human
Services standards and are used by on the American Community Survey and other major
surveys to characterize functional disability is proposed as the standard for collecting
population survey data on disability. The question set was developed by a Federal
interagency committee and reflects how disability is conceptualized consistent with the
International Classification of Functioning, Disability, and Health. The question set went
through several rounds of cognitive and field testing and has been adopted in most major
federal data collection systems. OMB has encouraged the use of this question set when
Federal agencies conducting national population studies in order to promote a consistency
in measurement and continuity in the dialogue. Disability-specific questions are important
to measure variations in services and outcomes based on disability type.

iv. Page 59 - #9. The ability for a CIL consumer to participate in this study is
not a determination for staff to make. Rather, the consumer is given the
choice to participate and if they feel they need assistance they should be able
to make that request and their answers should be considered eligible for the
study.
Response: Based on staff expertise in working with their consumer populations,
they are asked to make a professional judgment regarding the ability of the
consumer to participate in a 20 minute survey. Detailed information about how this
judgment should be made will be included in the training materials provided to sites
participating in the evaluation.
v. Following item 9 reads “If yes to item 8, Client is ineligible for the study.”
Item 8 is a multipart question and therefore the statement does not make
sense.
Response: The questions were mis-numbered and this has now been fixed so that the
skip pattern refers to the correct question.
12) NCIL ADRC Task Force is concerned that this evaluation will not result in information to
assess the successes of ADRCs in increasing and streamlining access to information and
services and supports for people with disabilities and seniors.
RESPONSE: The IMPAQ/Abt team, which brings together many years of experience in
evaluation design, has spent significant time and effort designing an evaluation that can
yield the most informative results on the activities of the ADRC. We are confident that
this evaluation will provide meaningful insight into the capabilities of the ADRC,
consumer experiences, and where there is room for improvement.

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Attachment A: PROCESS EVALUATION: WEB-BASED SURVEY

PROCESS EVALUATION: LOCAL-LEVEL WEB-BASED SURVEY
INSTRUCTIONS TO WEB SURVEY PROGRAMMER: PREPOPULATE (PP) INFORMATION IN [ ] BASED ON SITE
DIRECTOR TYPE (DT) OR ID NUMBER (ID). THESE PROPOPULATED DATA WILL BE USED THROUGHOUT
THE SURVEY TO ORIENT THE RESPONDENT BASED ON TYPE OF SITE. EACH SITE WILL ALSO RECEIVE A
UNIQUE ID NUMBER WITH THE NAME OF THE SITE.

[ID Number - ID]
Name of Site
[Director Type - DT]
ADRC (Local-level)
AAA (Local-level)

Section A. Baseline Characteristics
[FOR LOCAL-LEVEL ADRC DIRECTORS]: The first set of questions focus on characteristics of your
organization PRIOR to receiving an ADRC grant and the influence on your organization of the
Administration on Aging (AoA) and/or CMS grant(s) (i.e., AoA Title IV grants, AoA title II grants, CMS Real
Choice System Change grants, CMS Person-centered hospital discharge planning grants, Patient
Protection and Affordable Care Act funds).
[FOR LOCAL-LEVEL AAA DIRECTORS]: We are interested in how your organization has changed over
time, therefore, the first set of questions deals with the characteristics of your organization
approximately 7 years ago (i.e., in 2004-2005).

1. Has your organization realized an improvement in ability to provide integrated, comprehensive
access to long-term care services and supports (e.g., provide one-stop or streamlined benefits
access, increase awareness of LTSS options, provide assistance to consumers such as counseling
regarding LTSS choices or transitions from institutions back into the community)? [if DT = ADRC
since the start of the ADRC grant; if DT=AAA over the past 7 years]
Yes
No [skip to question 3]
2. Which have had the most positive impact on your organization’s ability to provide integrated,
comprehensive access to long-term care services and supports (e.g., provide one-stop or
streamlined benefits access, increase awareness of LTSS options, provide assistance to
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consumers such as counseling regarding LTSS choices or transitions from institutions back into
the community)? (Select up to two)
Partnerships developed/expanded
Staffing changes
Shared data
Focus on providing person-centered, self-directed services
Other, please specify
3. Which of the following best describes the reason your site became an ADRC?
To better integrate service provision systems
To develop or strengthen agency/organizational partnerships
To improve data or IT infrastructure
To improve marketing or awareness efforts related to Long Term Care Services and
Supports (LTSS)
To expand services to additional populations
To expand services to additional geographic locations
Other, please specify
4. [FOR AAA DIRECTORS ONLY]: Is your site interested in becoming an ADRC or becoming part of an
ADRC in the future?
Yes; If yes, what is your current stage or status in becoming an ADRC? (Open
Response)
No; If no, please explain why you do not plan to become an ADRC? (Open Response)
Other, please specify

5. Please indicate the extent to which Federal (AoA/CMS) grants have enabled your ADRC to
realize any of the following outcomes… (Select all that apply)
Very much

Somewhat

Very little

… increase the skills of existing staff

… recruit or attract more experienced staff

… increase/expand populations served

… increase the number of consumers served

… increase the number of partnerships

…increase range of services offered

…make other changes (please specify)

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6. How has the ADRC grant(s) affected the resources or resource allocation at your organization or
within your state? [IF THERE IS MORE THAN ONE ADRC IN THE STATE CHECK THE BOX IF THE
ITEM IS TRUE OF AT LEAST ONE ADRC] (Check all that apply)
At the site or local level

At the State level

Helped us leverage other funds



Improved staff training opportunities



Increased service efficiency



Contributed to the development of a
statewide database of LTSS services and/or
consumers



Promoted the development of standard
operating procedures



Increased the level of coordination
between organizations serving older
individuals and individuals with disabilities



Improved awareness/marketing
campaigns/activities



Section B. Populations Served
This second set of questions asks about the populations in your service area as well as consumers that
your organization serves. For questions about consumers, please focus on those who received services
designed to enhance individual choice and support informed decision-making among consumers. This
includes empowering individuals to effectively navigate their health and other long-term support
options (e.g., Information, referral and awareness services; Consumer-focused decision support;
Assistance with planning for future LTSS Needs; Streamlined eligibility determination for public
programs; Person-centered transition support from institutional setting to community settings; and
Independent living skills.) Please answer these questions to the best of your knowledge. In questions
asking for percentages, please provide estimates if your organization does not collect the requested
data.

NOTE: The data will be used to group like organizations together to allow for more complex data
analyses. These data will not be used to evaluate the efforts of your specific organization.

For the following items, please indicate the demographic composition of your service area. (This
question applies to the community that [insert ID] serves)
7. Latino/Hispanic Origin
Yes %
No %
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Race
Caucasian/White %
Black or African American %
American Indian or Alaska Native %
Asian %
Nation Hawaiian or Other Pacific Islander %
8. If you have one or more significant racial/ethnic sub-populations in your service area please list
it here:___________________
9. What percentage of your service area is living at or below the poverty line?
At or below the poverty line %
Not sure, but a significant population lives under the poverty line
Not sure, but the population is small or negligible
10. What percentage of your service area is uninsured/does not have health insurance coverage?
Uninsured %
Not sure, but a significant population is uninsured
Not sure, but the population is small or negligible
12. Within the last 12 months, has a community LTSS needs assessment been conducted?
Yes
No, but we did complete a community needs assessment within the past three years
No, a community needs assessment was not completed within the past three years
13. This next set of questions is designed to gather information about the conditions in your service
area.
[BLANK RESPONSE BOXES WILL BE POPULATED BY DROP-DOWN BOXES SHOWING OPTIONS EXPLAINED
ABOVE ‘PRIOR’ AND ‘CURRENTLY’ COLUMNS+
Community Needs
Barriers to receiving Long Term Supports and Service services
To what extent is each of the following a barrier for individuals seeking Long Term Supports and Service
services both prior to receiving an ADRC grant [approximately 7 years ago or if you do not have
information that goes back that far, as far back as you do have information] and currently?
Please use dropdown menus to
select: not a barrier, sometimes
a barrier, often a barrier
Prior
Lack of Long Term Supports and Services-Needed services are not
offered
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Currently

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Community Needs
Barriers to receiving Long Term Supports and Service services
To what extent is each of the following a barrier for individuals seeking Long Term Supports and Service
services both prior to receiving an ADRC grant [approximately 7 years ago or if you do not have
information that goes back that far, as far back as you do have information] and currently?
Please use dropdown menus to
select: not a barrier, sometimes
a barrier, often a barrier
Prior

Currently

Lack of available Long Term Supports and Service slots-(e.g., There
are long waitlists)
Poor service quality
Lack of health insurance
Providers not accepting consumers with Medicaid
Barriers based on consumer disabilities
Language barriers
Cultural barriers
Religious barriers
Sexual orientation barriers
People needing services do not have a permanent address
Consumers lack transportation
Stigma, discrimination and prejudice against older adults
Stigma, discrimination and prejudice against persons with disabilities
Providers have high staff turnover
Providers lack appropriately trained staff
Service provider hours/locations are hard to access
Other Please specify:

[BLANK RESPONSE BOXES WILL BE POPULATED BY DROP-DOWN BOXES SHOWING OPTIONS EXPLAINED
ABOVE ‘PRIOR’ AND ‘CURRENTLY’ COLUMNS+
Service Availability/Choice

Please indicate the Current
availability of the following
services within your service
area
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For the following services, to what
extent is there provider choice?
Service has (no; limited; adequate)
provider choice

Process Evaluation Survey: Local-Level
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Date_____________
Prior

Safe and affordable housing
options

Adequate
availability/Available but
inadequate to meet
need/Not available

Peer support services/groups

Adequate
availability/Available but
inadequate to meet
need/Not available

HCBS Medicaid Waiver Programs

Adequate
availability/Available but
inadequate to meet
need/Not available

Caregiver Support (i.e. respite
programs, support groups, or
counseling)

Adequate
availability/Available but
inadequate to meet
need/Not available

Nutrition Programs

Adequate
availability/Available but
inadequate to meet
need/Not available

Employment services

Adequate
availability/Available but
inadequate to meet
need/Not available

Education services

Adequate
availability/Available but
inadequate to meet
need/Not available

Opportunities to develop advanced
directives

Adequate
availability/Available but
inadequate to meet
need/Not available

Transportation services

Adequate
availability/Available but
inadequate to meet
need/Not available

Opportunities for
socialization/recreation

Adequate
availability/Available but
inadequate to meet
need/Not available
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Currently

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Service Availability/Choice

Date_____________
Please indicate the Current
availability of the following
services within your service
area

For the following services, to what
extent is there provider choice?
Service has (no; limited; adequate)
provider choice
Prior

Mental health services

Adequate
availability/Available but
inadequate to meet
need/Not available

Ombudsman services

Adequate
availability/Available but
inadequate to meet
need/Not available

Health prevention and screening
services

Adequate
availability/Available but
inadequate to meet
need/Not available

Services for emergent cases/Crisis
intervention

Adequate
availability/Available but
inadequate to meet
need/Not available

Transition programs (from
hospitals, nursing homes etc.)

Adequate
availability/Available but
inadequate to meet
need/Not available

Nursing home (institutional)
diversion programs

Adequate
availability/Available but
inadequate to meet
need/Not available

Nursing home/residential beds

Adequate
availability/Available but
inadequate to meet
need/Not available

Income assistance

Adequate
availability/Available but
inadequate to meet
need/Not available

Energy assistance

Adequate
availability/Available but
inadequate to meet
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Currently

Process Evaluation Survey: Local-Level
Interviewer Initials (or ID) _______

Date_____________
Please indicate the Current
availability of the following
services within your service
area

Service Availability/Choice

For the following services, to what
extent is there provider choice?
Service has (no; limited; adequate)
provider choice
Prior

Currently

need/Not available
Personal care services

Adequate
availability/Available but
inadequate to meet
need/Not available

Medicaid waivers

Adequate
availability/Available but
inadequate to meet
need/Not available

Independent Living services (e.g.,
skills training, peer support)

Adequate
availability/Available but
inadequate to meet
need/Not available

Other, please specify

Adequate
availability/Available but
inadequate to meet
need/Not available

14. How many consumers of each type were served in the most recent 6 month period (October
2011-March 2012) NOTE: This question is specific to the consumers who access [insert ID]
services such as I&R/I&A, benefits or options counseling, Information and referral services,
services to support transitions from residential or institutional facilities to the community.
Characteristics

Currently
Consumers
under 60

Older Adults (60+)

Individuals with Disabilities
Physical disabilities
Cognitive impairment
Intellectual disabilities
Developmental disabilities
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Consumers
over 60

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Characteristics

Currently

Mental Illness
Multiple disabilities
Caregivers
Informal/family caregiver
Paid Caregiver
Health & Human Service Professional (e.g., physician,
hospital discharge planner, nursing home staff)
Special Subpopulations
Traumatic Brain Injury (TBI)
Emergent/Emergency Cases
Low income
Limited English proficiency
Is the [insert ID] making any special efforts to target a
particular population not listed above? If yes, please specify.
Other (Please specify)
Other (Please specify)

14a. Since the start of the ADRC grant, the number of clients under 60 served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
14b. [FOR AAA DIRECTORS ONLY]: Over the past 7 years, the number of clients under 60 served by
[insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
15a. Since the start of the ADRC grant, the number of consumers over 60 served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
15b. [FOR AAA DIRECTORS ONLY]: Over the past 7 years the number of consumers over 60 served by
[insert ID] has:
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Significantly increased
Significantly decreased
Stayed the same
16a. Since the start of the ADRC grant, the number of consumers with physical disabilities served by
[insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
16b. [FOR AAA DIRECTORS ONLY]: Over the past 7 years, the number of consumers with physical
disabilities served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
17a. Since the start of the ADRC grant, the number of consumers with mental/emotional disabilities
served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
17b. [FOR AAA DIRECTORS ONLY]: Over the past 7 years, the number of consumers with
mental/emotional disabilities served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
18a. Since the start of the ADRC grant, the number of consumers with multiple disabilities served by
[insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
18b. [FOR AAA DIRECTORS ONLY]: Over the last 7 years, the number of consumers with multiple
disabilities served by [insert ID] has:
Significantly increased
Significantly decreased
Stayed the same
19a. Since the start of the ADRC grant, the number of caregivers served by [insert ID] has:
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Significantly increased
Significantly decreased
Stayed the same
19b. [FOR AAA DIRECTORS ONLY]: Over the past 7 years, the number of caregivers served by [insert
ID] has:
Significantly increased
Significantly decreased
Stayed the same

Section C. Service Provision
These questions are about the services provided by your organization/network
20. How frequently do consumers ask about the following? For each, indicate “frequently,”
“sometimes,” "infrequently”, or “never.” Advanced directives
Topic

Frequency of consumer inquiry:
There will be a drop down menu in each cell with
the
options:
“frequently,”
“sometimes,”
"infrequently”, or “never.”

Advanced directives
Advocacy
Caregiver support
Respite services
Chronic health conditions
Education
Employment
Energy assistance
Home modification
Affordable housing
Income assistance
Medicaid eligibility and services
Medicare eligibility and services
Mental/behavioral health services
Nutrition services
Ombudsman/abuse or neglect issues
Independent living services
Personal care/attendant care services
Preventative health services
Recreation opportunities
Services for emergent care/crisis intervention
Support groups
Transition services
Transportation
Other, please specify
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21. Does [insert ID] engage in advocacy activities for older adults?
Yes
No
22. Does [insert ID] engage in advocacy activities for persons with disabilities?
Yes
No
23a. Is diversion form nursing homes or other institutional residential facilities an outcome sought
to be achieved? Specific goal…
Yes
No [Skip to question 24]

23b. How is [insert ID] measuring and tracking this?
Staff track using a standard electronic system
Staff track using a standard hardcopy/paper system
An external group (e.g., an evaluator, auditor) tracks using a standard system
Staff track using an informal system
Other, please specify
CARE COORDINATION/TRANSITION ASSISTANCE PROGRAMS
24. Does your organization provide transition services to consumers discharged from an acute
care setting?
Yes
No [If no skip to question 30]

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25. Care Coordination/Transition Assistance
[insert ID] Clients Provided Care Coordination/Transition Assistance
No. individuals assisted with transition from hospital ONLY through formal
care transitions program (evidence-based CT intervention or innovative
model)
Number of participants carried over from last reporting period (started
program in last reporting period and continued with the intervention into
this reporting period)
Number of participants whose cases were closed during this period (i.e.,
participants whose transition services were ended either bacause of a
readmission or new admission to a care facility or because the transition
period ended)
# of participants that readmitted within 30 days of discharge
# of participants that readmitted within 30 days and re-entered the care
transition program

26. What is the number of individuals who were assisted with transition from hospital through
formal care transitions intervention in this [INSERT ID] program service area this reporting period
by participating hospital?
Name of Hospital 1
No. of Individuals for Hospital 1
Name of Hospital 2
No. of Individuals for Hospital 2
Name of Hospital 3
No. of Individuals for Hospital 3
27. What is the number of individuals who were assisted with transition from hospital through
formal care transitions intervention across all participating hospitals in this [INSERT ID] program
service area this reporting period by age group?
Aged 60 and Over
Under Age 60
Age Unknown
28. What is the number of individuals who were assisted with transition from hospital through formal
care transitions intervention across all participating hospitals in this [INSERT ID] program service
area this reporting period by health insurance source?
_____Medicare
_____Medicaid
_____Dual-Eligible
_____ No insurance
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_____Private insurance
_____Veterans Administration Services
_____Other Unknown
29. What is the number of individuals who were assisted with transition from hospital through formal
care transitions intervention across all participating hospitals in this [INSERT ID] program service
area in this reporting period who were referred to one or more health/prevention programs?
_____Chronic Disease Self Management Program
_____Diabetes Self Management Program
_____Exercise Program
_____Mental Health and Substance Misuse
_____Falls Management and Prevention
_____Alzheimer’s Programs
_____Medication Management
_____Home Injury/Risk Screenings
_____Other
30a.What is the number of individuals who were assisted with transition from hospital through formal
care transitions intervention across all participating hospitals in this [INSERT ID] program service area in
this reporting period that were referred to one or more of the following long term services or supports?
_____ Additional Options Counseling
_____ Home delivered meals
_____Nutrition services or nutrition counseling
_____ Care giver support
_____Personal care/homemaker/choremaker services
_____Transportation
31a. Do you have a marketing plan?
Yes, our marketing plan is operational
Yes, we have a plan but it is not yet operational
No, we do not have a plan at this time
31b. Does [insert ID] utilize a standard operating procedure to assess consumer need?
Always
Sometimes
Never
32. Is the consumer assessment tool and/or basic consumer needs assessment process common
across partner organizations?
Yes, common across all partners
Yes, common across some partners
No, each partner organization uses their own assessment tool/process
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OPTIONS COUNSELING OR OTHER ONE ON ONE COUNSELING

33. Does your organization/network provide “Options Counseling” or other one-on-one counseling
designed to support consumers’ ability to make informed decisions about their long-term care?
Yes
No [If no skip to question 36]
34. Referrals to Public and Private Services this Reporting Period
Referrals to Public and Private Services this Reporting Period
What is the number of [insert ID] clients referred to or given an application for a
public program, including Older Americans Act; Medicare; Medicaid; Food Stamps;
TANF; Social Security (SSI or SSDI); LI-HEAP; VDHCBS; Other State-funded and countyfunded programs for Medicaid; Other?

What is the number of [insert ID] clients referred to some other type of service (nonpublic services, resources or program)?

What is the number of [insert ID] clients that were not referred to any type of service?

What is the number of [insert ID] Unknown Clients (remainder of all Clients)?

Total

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[FOR SITES WITH OPTIONS COUNSELING OR OTHER ONE ON ONE COUNSELING ONLY]
35. Clients Provided Options Counseling this Reporting Period
[insert ID] Clients Provided Options Counseling By Age
[insert ID] Clients Aged 60 and
Over

[insert ID] Clients Under Age 60

[insert ID] Clients Age Unknown

Total

[insert ID] Clients Provided Options Counseling by Method
In person
By phone
Electronic Communication (e.g.
email or website chat)
Total

[insert ID] Clients Provided Options Counseling by Setting
[insert ID]
Hospital
Nursing facility/Institution
At the client's community residence
Other
Total
Client Feedback About Options Counseling
What is the number of [insert ID]
Clients who report that options
counseling enabled them to make
well informed decisions about their
long term support services?

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What is the number of [insert ID]
Clients surveyed this reporting
period?

36. Does [insert ID] or network have a standardized tool or process to provide options counseling?
Yes
No
Don’t know
Not applicable
PUBLIC PROGRAMS
37. Average Monthly Public LTSS Program Enrollment in WHOLE [INSERT ID] SERVICE AREA
This set of questions is asking about all current enrollment levels in these programs in the [INSERT ID]
service area. Enrollment fluctuates from month to month, so please calculate the average enrollment per
month during the reporting period.

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[FOR SITES THAT REFER CLIENTS TO PUBLIC PROGRAMS ONLY]:
38. Total New Enrollment among [INSERT ID] CLIENTS ONLY in Public LTSS Programs
This set of questions is asking about the absolute number of [INSERT ID] clients who were newly enrolled
into these programs during the last six months.

39. For data collected on consumers, are staff required to follow the Alliance of Information and
Referral Systems (AIRS) standards6?
Yes with all consumers
Yes, with specific groups of consumers –Please specify:
Never
40. Does [insert ID] have a database/MIS that does any of the following (Select all that apply)?:
Track consumer requests for information and referrals
Track referrals made to consumers
Maintain records on individual consumers
Maintain a list of services/service providers
Links to other databases (e.g., Medicaid waiver tracking systems, Money Follows the
Person tracking system). If yes, specify: _______________
Other, please specify
We do not have an electronic records/tracking system [skip to question 41]
6

Standard 13: Inquirer Data Collection
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Date_____________

41. Do operational partners have access to data they need for their operations such as data about
your consumers/services? If yes, for what purpose? (review client information, input client
demographic information, input referrals, input service utilization information, review client
service utilization, obtain summary reports on clients and/or services)
Yes (specify _____________________________________)
No, but there are plans to develop that capacity
No, and there are no current plans to do this
42. Do service providers have access to data about our consumers? If yes, for what purpose? (see
above)
Yes (Specify___________________________________)
No, but there are plans to develop that capacity
No, and there are no current plans to do this

42a. Do staff follow up with consumers after their initial contact with your organization?
Always
Sometimes-Under what circumstances: ___________________
Never [skip to question 45]
42b. How many times does staff follow up with consumers after their initial contact with your
organization?
Once
Multiple times
42c. What is the approximate timing of the first follow up with consumers after their initial contact
with your organization?
One to weeks after service
Three weeks after service
One to two months after service
Three to five months after service
Six months after service
One year or longer after service
42d. What is the approximate timing of the last follow up with consumers after their initial contact
with your organization?
One week after service
Two weeks after service
Three weeks after service
One to two months after service
Three to five months after service
Six months after service
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One year or longer after service
43. When consumers are referred to other agencies or organizations, are those providers contacted
as part of the follow up procedure?
Always
Sometimes-Under what circumstances:____________________
Never
44. Approximately what percentage of consumers who are referred to other organizations receive a
“warm transfer” (e.g., Simultaneous transfer of a telephone call and its associated data from
one agent to another agent or supervisor)? ______%
45. Does your organization routinely collect quantitative performance data about its services and
consumers?
Yes
No [skip to question 49]
46.
Indicate any of the ways that your organization uses performance data: [check all that
apply]
To justify funding requests
To improve consumer service
To administer service provider contracts
To provide information to stakeholders (governing board, advocacy organizations,
local government, etc.)
For program planning
Do not use performance data
47. On which topics, if any, would you like to receive additional assistance from the technical
assistance provider? (Open Response)
Eligibility Screening Module: Initial Screening of ADRC Clients
48. When a client contacts the ADRC about long-term services and supports (LTSS), do ADRC staff
administer a screening questionnaire to make a preliminary determination of eligibility and need
for publicly-funded LTSS?
Yes
No
Other, please describe ________________
49a. If yes, to which of the following populations is the eligibility screening instrument
administered ? Check all that apply.
 Aged 65 and older
 Physical disability
 Intellectual Disability/Developmental Disability
 Brain injury
 HIV/AIDS
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




Date_____________

Medically fragile
Autism
Mental illness
Other (specify _________)

49b. What kind of information is collected? Check all that apply.
 Demographic information (i.e., age, gender, ethnicity, marital status)
 Living arrangements
 Caregivers
 Health status
 Activities of daily living (ADL)
 Instrumental activities of daily living(IADL)
 Cognitive functions
 Troublesome behaviors
 LTSS currently received
 Income
 Assets
 Other, please list __________________
Eligibility Screening Module: Financial Eligibility Determination

50. How do clients in your state/site complete and file applications for financial eligibility for
Medicaid or publicly-funded LTSS? Check all that apply.
Applications are accessed on-line, printed, completed by hand, and returned to a state
or county office.
Applications are accessed on-line, completed on-line, printed, and returned to a state or
county office.
Applications are accessed on-line, completed on-line, and submitted to the state or
county electronically.
Paper copy applications are obtained at various locations including _____ [INSERT
LOCATIONS], completed by hand, and returned either in person or by mail to a state or
county office.
Other ______________________
51. In what ways do ADRC staff assist clients with financial eligibility applications for Medicaid LTSS
Programs? Check all that apply.
We do not assist clients with financial eligibility applications
Advise the client where s/he can obtain an application
Assist the client in completing the application
Assist the client in collecting the required financial documentation
Check on the status of the client’s application
Notify the client when the application has been approved/disapproved
Manage appeals by clients whose applications were not approved
Other ____________________________
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52. In what ways do ADRC staff assist clients with financial eligibility applications for publicly-funded
LTSS* other than Medicaid LTSS? Check all that apply.
We do not assist clients with financial eligibility applications
Advise the client where s/he can obtain an application
Assist the client in completing the application
Assist the client in collecting the required financial documentation
Check on the status of the client’s application
Notify the client when the application has been approved/disapproved
Manage appeals by clients whose applications were not approved
Other ____________________________
*Please describe the publicly funded LTSS services in your state. This includes LTSS
programs funded solely by state or county _________________________
53. Does your state/site permit presumptive financial eligibility in order to expedite the provision of
LTSS to clients while their financial eligibility applications are being processed?
Yes
No
In Progress

Eligibility Screening Module: Functional Assessment
54. Does your state/site use a universal, comprehensive assessment instrument for functional (level
of care) eligibility determinations for LTSS?
Yes
No
No, but in development
55a. If yes, what best describes the kind of instrument your state/site is using? Check one.





A custom-designed instrument developed by state staff
A custom-designed instrument developed by a vendor specifically for our state
An instrument developed by a vendor that is also used by other states
Other, please list: ____________________

55b. What best describes the process for how the assessor completes the instrument? Check all
that apply.
 The assessor completes a paper form while interviewing the client; there is no electronic
data entry.
 The assessor completes a paper form while interviewing the client and later inputs the
data on an electronic form at the office.
 The assessor completes an electronic form while interviewing the client, which is later
downloaded into an electronic database.
 The assessor completes a web-based form while interviewing the client and the client’s
data is entered “real time” into an electronic database.
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Date_____________

 Our state/site uses multiple processes, including ________ [SELECT FROM A-D ABOVE]
55c.Do you work with consumers to develop a care plan?
 Yes, with all consumers
 Yes under certain circumstances (Please specify________)
 No, that is not part of this service
55d.For which of the following populations is the functional assessment used? Check all that
apply.
 Aged 65 and older

Physical disability

ID/DD

Brain injury

HIV/AIDS

Medically fragile

Autism

Mental illness
56. The Affordable Care Act requires states to implement Health Insurance Exchanges effective
January 1, 2014. States are required to provide a single electronic portal for “real time” financial
eligibility determinations for Medicaid and Qualified Health Plans offered through the Exchange.
56aIs your organization involved in planning for your state’s Exchange?
 Yes
 No [skip to question57]
 Not Sure.
If Yes, please describe your organization’s role role: __________________________________

56b.Is your state/site examining ways to align functional eligibility determination for publiclyfunded LTSS with Medicaid financial eligibility determination carried out through the Exchange
website?
 Yes
 No
 Not Sure.
If Yes, please describe: _______________________________________________________

57. Are any of your organization’s functions reimbursed under Federal financial participation (FFP)
or Federal medical assistance percentage (FMAP)? If so please specify the functions.
 No, none of our functions are reimbursed under FFP or FMAP
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 Yes, the following functions are reimbursed under FFP
____________________________________________________
 Yes, the following functions are reimbursed under FMAP
____________________________________________________

Section D. Organizational Characteristics
These questions are about your organization budget, partnerships, and structure.

58.

For the current Fiscal Year, what is the approximate amount of funding from each of the
following sources? (In $ amounts)

Check if you
have received
funding in prior
Fiscal Years

Amount of
funding
during the
current Fiscal
Year

Funding source



Administration on Aging Title IV ADRC Grant



Administration of Aging Title II Grant



CMS Real Choice Systems Change Grants



CMS Person-Centered Hospital Discharge Planning Grant



Patient protection and Affordable Care Act Grant



Veteran’s Administration



Money Follows the Person Demonstration



State Transformation Grant



Alzheimer’s Disease Demonstration Grant



Evidence-Based Disease Prevention Grant



Program of All-Inclusive Care for the Elderly (PACE)



Medicare Improvement for Patients and Providers Act (MIPPA)



Respite Care Act funds



Rehabilitation Services Administration (RSA)



Substance Abuse and Mental Health Services Administration
(SAMHSA) - Mental Health Transformation Grant



Agency for Health Care Research and Policy - Chronic Disease
Self-Management Grant



Administration for Children and Families, Office of Community
Page 107 of 170

Process Evaluation Survey: Local-Level
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Check if you
have received
funding in prior
Fiscal Years

Date_____________

Amount of
funding
during the
current Fiscal
Year

Funding source

Services - Low Income Home Energy Assistance Program
(LIHEAP)


Health Resources and Services Administration HIV/AIDS
Bureau - Ryan White Fund



State Unit on Aging



State General Revenue



County of local government



Private entities/grants - Hospitals or other businesses



Medicaid for Direct Services (state and federal)



Medicaid for Federal Financial Participation
Care Transitions Income



Consumer Fees or Cost Sharing



Charitable Donations



Other, please specify



Total Budget for FY 2013

59. What best characterizes the operation of your agency?
Single-point of entry: one agency maintains a knowledgebase on LTSS options and
assists consumers in making decisions about the best and most feasible options for
LTSS
No wrong door: multiple agencies are knowledgeable about LTSS options and
cooperate to assist consumers regardless of which agency the consumer first
contacts.
60. Do you identify your structure as any of the following:
Independent, non-profit
Part of city government
Part of county government
Part of COG or RPDA
Other. Specify: _____________
61. [ADRCs only] What organizations comprise the core operating organizations?
RESPONSE BOXES WILL BE POPULATED BY DROP-DOWN BOXES SHOWING YES/NO]
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[BLANK

Process Evaluation Survey: Local-Level
Interviewer Initials (or ID) _______

Date_____________

Core Operating Organization?

Organization

(Yes/No)

AAA
State Unit on Aging
Veterans Organization
Alzheimer’s Association
Other Aging Services Organization
Centers for Independent Living
Vocational Rehabilitation Departments
Other Disability Services Organization
Community Mental Health
County or Regional Council of Governments
County Government Office or Agency
Local Housing Authority
State or Local Medicaid Agency
211
Other Human Services of Social Service Provider (please
specify)
62. [FOR EACH OF THE CORE OPERATING ORGANIZATIONS]: Please describe your relationship with
other core operating organizations at your site and the functionality of the site in meeting the
objective of improving and streamlining access to information, assistance, and long-term
services and supports for older adults, persons with disabilities, and their families. Would you
describe the current status as having a solid working relationship? Please provide as much detail
as possible. _____________________________________________

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63.

Date_____________

With which organizations do [insert ID] have a partnership? What is the strength of the relationship, as well as the type of partnership agreement and
shared resources? [BLANK RESPONSE BOXES WILL BE POPULATED BY DROP-DOWN BOXES SHOWING OPTIONS EXPLAINED IN EACH COLUMN]

Partnership
Agreement

Partner
(Check all
the apply)

Functionality
of Partnership

Select from the
following list:

(1=Weak
functionality;
2=Moderately
functional/
functional in
some areas;
3=Highly
functional)

•Funding relationship
•Formal MOU
•Contract
•Cooperative
•Informal working
relationship
• Other, please
specify

State Departments (with cabinet-level
secretaries):
Health
Human Services
Aging
Other (specify):
State Agencies (located within state
departments):
Aging
Developmental Disabilities
Acquired or Late-Onset Disabilities
Mental Health
Medicaid
Housing
Education
Other (specify):
Page 110 of 170

Shared Resources
Select from the following list:
Co-located staff
Shared monetary resource
Information sharing
Joint training
Joint sponsorship of programs
Shared non-monetary
resources (i.e. office space)
Shared data
No shared resources

Process Evaluation Survey: Local-Level
Interviewer Initials (or ID) _______

Date_____________

Local Government Agencies
Area Agency on Aging
County Health Department
County Medicaid office
County Department on Aging
County Department on Disability
County Housing Office
Library
Other (specify):
Federal Agencies:
Local Veterans Administration
Local Indian Health Service
Other (specify):
Organizations Providing Direct Services:
211 or other call center
Community Health Clinic
Community Mental Health Clinic
Deaf Service Center
Hospital/Medical Center
School for the Blind
School for the Deaf
The ARC
United Way
Vocational/Rehabilitation Services
Other (specify):
Advocacy/Referral Organizations:
AIDS Coalition
Alzheimer’s Association
American Council of the Blind
Autism Society state/regional chapter
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Date_____________

Brain Injury Association state/regional chapter
Centers for Independent Living
Easter Seals
Epilepsy Foundation state/regional chapter
National Association of Mental Illness
state/regional chapter
National Autism Association state/regional
chapter
National Multiple Sclerosis Society
state/regional chapter
State Association for the Deaf
United Cerebral Palsy
Other (specify):

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Process Evaluation Survey: Local-Level
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64.

Date_____________

Approximately how many FTEs (Full-time equivalents) perform each of the following
functions?
I&R/I&A
Options counseling/counseling to provide in-depth person centered decision
support
Benefits counseling/eligibility determination
Care transition services
Crisis intervention services
Independent Living services
Advocacy services
Providing administrative or other support for the above functions

65. How many front line staff are Alliance of Information and Referral Systems (AIRS) certified?
Number of AIRS certified staff
Total number of front line staff
66. Is your organization paid on a fee-for-service or per-unit basis for performing any of the
following services for a client? (Please check all that apply)
 Information/referral
 Options counseling
 Screening
 Assessment
 Application assistance
 Transition support
 Other, please specify
67. [if any of the boxes are checked in previous question] What is the source of the fee-forservice or per-unit payments?
 Medicare
 Medicaid waiver
 Medicaid state plan
 Medicaid managed care organization
 State-funded program other than Medicaid
 Private health plan
 Provider
 Other, please specify

Section E. LTSS Environment
68. Since this [insert ID] started serving consumers, has there been an impact on the LTSS or
Home and Community-Based (HCBS) system in your community?
There has been an increase in the number of LTSS providers.
There has been a decrease in the number of LTSS providers.
There has been an increase in the quality of LTSS services.
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There has been a decrease in the quality of LTTS services.
69. Please add any final thoughts about [insert ID] and either its operations and/or its results
(Open response). _____________________

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Process Evaluation Survey: State-Level
Interviewer Initials (or ID) _______

Date_____________

PROCESS EVALUATION — STATE-LEVEL WEB-BASED SURVEY
INSTRUCTIONS TO WEB SURVEY PROGRAMMER: PREPOPULATE (PP) INFORMATION IN [ ] BASED ON SITE DIRECTOR TYPE
(DT) OR ID NUMBER (ID). THESE PREPOPULATED DATA WILL BE USED THROUGHOUT THE SURVEY TO ORIENT THE
RESPONDENT BASED ON NAME OF SITE. EACH SITE WILL ALSO RECEIVE A UNIQUE ID NUMBER WITH THE NAME OF THE
SITE.

[ID Number - ID]
Name of State-level Site
[Director Type - DT]
ADRC (State-level)

Section A. Baseline Characteristics
The first set of questions focus on characteristics of your aging and disability network PRIOR to receiving an ADRC grant
and the influence on your aging and disability network. .
1. Click here to review federal funding received by your state since [ENTER YEAR OF RECEIPT OF ADRC GRANT] for
the development of ADRCs. On a scale of 1 to 5, how would you rate your state’s progress since *YEAR+ in
improving access to the following services, with 1 being “Poor” and 5 being “Excellent?”
Poor

Excellent

Information, referral, and
awareness of LTSS options
Options counseling and
assistance
Streamlined eligibility
determination for public
programs
Person-centered transition
support
2. States used federal grant funding in a variety of ways to develop their aging and disability networks. On a scale
of 1 to 5, indicate the importance of each of the following in improving access to LTSS in your state since YEAR,
with 1 being “not important at all” and 5 being “very important.”
Not important
at all

Very
important

Development of
new partnerships
Staffing
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Date_____________

Advisory council
Development of
shared data
systems
Web-based
information and
referral
Other

3. When your state applied for its first ADRC grant in YEAR, what were your goals for the project? Check all that
apply.
To better integrate the delivery of LTSS for the aging and disability populations
To develop or strengthen agency/organizational partnerships
To improve data or IT infrastructure
To improve marketing or awareness efforts related to Long Term Care Services and Supports (LTSS)
To expand services to additional populations
To expand services to additional geographic locations
Other, please specify _____________________
4. Please indicate how your State initially selected local sites to receive ADRC funds.
Selected sites that were already integrated to help them maintain or expand their efforts
Selected sites that were partially integrated to support further integration
Selected sites that were fragmented to encourage integration
Selected AAAs already in operation
Selected organizations that were currently serving the aging community (e.g., senior centers)
Selected sites that were currently serving the disability community (e.g., CILS)
Selected county offices because existing infrastructure was available
Other, please specify

Indicate the extent to which the grants your state received for ADRC development contributed to the following:
Somewhat
Very little
Very much
… increase the skills of existing staff

… recruit or attract more experienced staff

… increase/expand populations served

… increase the number of consumers served

… increase the number of partnerships

…increase range of services offered

…make other changes (please specify)

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Date_____________

5. How has the ADRC grant(s) affected the resources or resource allocation at your organization/network or within
your state? If there is more than one ADRC in your state, select the box if the item is true for at least one ADRC.
(Select all that apply)
At the Site or Local Level
At the State Level
Helped us leverage other funds (including
reimbursement for specific functions)



Improved staff training opportunities



Increased service efficiency



Contributed to the development of a
statewide database of Long Term Supports
and Service and/or consumers



Promoted the development of standard
operating procedures



Increased the level of coordination
between organizations serving older
individuals and individuals with disabilities



Improved awareness/marketing
campaigns/activities



6. Within the last 12 months, has the state conducted a community long-term service and support needs
assessment?
Yes , we assessed the needs in all [ADRC communities in our State
Yes, we assessed the needs in some of the [ADRC or communities in our State
No, but we did complete a community needs assessment, for at least some of the [ADRC or
communities in our State within the past three years
No, a community needs assessment was not completed within the past three years
This next set of questions is designed to gather information about the conditions in the service network for your state.
Please think about the status of your state as a whole.
7. Community Needs
Barriers to receiving Long Term Supports and Service services
What barriers do individuals in your state encounter in accessing LTSS? For each barrier listed below,
indicate the extent to which this was a barrier in YEAR when the state first began developing its ADRC
network and the extent to which it is currently a barrier.
Use drop-down menu to select
“not a barrier,” “sometimes a
barrier,” or “often a barrier”
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Date_____________
YEAR

2012

Non-availability of needed services and supports
Limits on Medicaid HCBS waiver enrollment
Limits on enrollment in state-only funded LTSS
Quality of available LTSS
Lack of health insurance
Providers not accepting consumers with Medicaid
Lack of accommodations for consumers with disabilities
Language barriers
Cultural barriers
Religious barriers
Sexual orientation barriers
People needing services do not have a permanent address
Consumers lack transportation
Stigma, discrimination and prejudice against older adults
Stigma, discrimination and prejudice against persons with disabilities
Providers have high staff turnover
Providers lack appropriately trained staff
Service provider hours/locations are hard to access
Other, Please specify:

8. Service Availability/Choice

Please indicate the Current
availability of the following
services within your service
area

For the following services, to what
extent is there provider choice?
Service has (no; limited; adequate)
provider choice
Prior to first
ADRC grant

Currently

Safe and affordable housing
options

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Peer support services/groups

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

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8. Service Availability/Choice

Date_____________

Please indicate the Current
availability of the following
services within your service
area

For the following services, to what
extent is there provider choice?
Service has (no; limited; adequate)
provider choice
Prior to first
ADRC grant

Currently

HCBS Medicaid Waiver Programs

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Caregiver Support (i.e. respite
programs, support groups, or
counseling)

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Nutrition Programs

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Employment services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Education services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Legal services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Transportation services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Socialization/recreation programs

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Mental/behavioral health services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Ombudsman services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Health prevention and screening
services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Emergency services/crisis
intervention

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Nursing home transition programs

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

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Process Evaluation Survey: State-Level
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8. Service Availability/Choice

Date_____________

Please indicate the Current
availability of the following
services within your service
area

For the following services, to what
extent is there provider choice?
Service has (no; limited; adequate)
provider choice
Prior to first
ADRC grant

Currently

Hospital transition programs
Nursing home (institutional)
diversion programs

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Nursing home services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Income assistance

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Energy assistance

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Personal care/attendant services

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Medicaid HCBS waiver programs

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Independent Living supports (e.g.,
skills training, vocational programs,
peer support)

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Other, please specify

Adequate availability/Available
but inadequate to meet
need/Not available

No/Limited/Adequate

Assisted living services
Shared living programs
Adult day care
Consumer-directed LTSS

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Process Evaluation Survey: State-Level
Interviewer Initials (or ID) _______

Date_____________

Section B. Organizational Characteristics
These questions are about your organization or network budget, partnerships, and structure.
9.

For the current Fiscal Year, what is the approximate amount of funding from each of the following sources? (In
$ amounts)
Check if you
have received
funding in prior
Fiscal Years

Amount of
funding
during the
current Fiscal
Year

Funding source



Administration on Aging Title IV ADRC Grant



Administration of Aging Title II Grant



CMS Real Choice Systems Change Grants



CMS Person-Centered Hospital Discharge Planning Grant



Patient protection and Affordable Care Act Grant



Veteran’s Administration



Money Follows the Person Demonstration



State Transformation Grant



Alzheimer’s Disease Demonstration Grant



Evidence-Based Disease Prevention Grant



Program of All-Inclusive Care for the Elderly (PACE)



Medicare Improvement for Patients and Providers Act (MIPPA)



Respite Care Act funds



Rehabilitation Services Administration (RSA)



Substance Abuse and Mental Health Services Administration
(SAMHSA) - Mental Health Transformation Grant



Agency for Health Care Research and Policy - Chronic Disease
Self-Management Grant



Administration for Children and Families, Office of Community
Services - Low Income Home Energy Assistance Program
(LIHEAP)



Health Resources and Services Administration HIV/AIDS
Bureau - Ryan White Fund



State Unit on Aging
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Check if you
have received
funding in prior
Fiscal Years

Date_____________

Amount of
funding
during the
current Fiscal
Year

Funding source



State General Revenue



County of local government



Private entities/grants - Hospitals or other businesses



Medicaid for Direct Services (state and federal)



Medicaid for Federal Financial Participation
Care Transitions Income



Consumer Fees or Cost Sharing



Charitable Donations



Other, please specify
Total Budget for FY 2013

Page 122 of 170

Process Evaluation Survey: State-Level
Interviewer Initials (or ID) _______

10.

Date_____________

Partnership
Agreement
Select from
the following
list:
Functionality
of
Partnership

Partner
(Check
all the
apply)

State Departments (with cabinet-level
secretaries):
Health
Human Services
Aging
Other (specify):
State Agencies (located within state
departments):
Aging
Page 123 of 170

(1=Weak
functionality;
2=Moderately
functional/
functional in
some areas;
3=Highly
functional)

•Funding
relationship
•Formal
MOU
•Contract
•Cooperative
•Informal
working
relationship
• Other,
please
specify

Select from
the
following
list:
Co-located staff
Shared
monetary
resource
Information
sharing
Joint training
Joint
sponsorship of
programs
Shared nonmonetary
resources (i.e.
office space)
Shared data
No shared
resources

Process Evaluation Survey: State-Level
Interviewer Initials (or ID) _______

Date_____________

Developmental Disabilities
Acquired or Late-Onset Disabilities
Mental Health
Medicaid
Housing
Education
Other (specify):
Local Government Agencies
Area Agency on Aging
County Health Department
County Medicaid office
County Department on Aging
County Department on Disability
County Housing Office
Library
Other (specify):
Federal Agencies:
Local Veterans Administration
Local Indian Health Service
Other (specify):
Organizations Providing Direct Services:
211 or other call center
Community Health Clinic
Community Mental Health Clinic
Deaf Service Center
Hospital/Medical Center
School for the Blind
School for the Deaf
The ARC
United Way
Page 124 of 170

Process Evaluation Survey: State-Level
Interviewer Initials (or ID) _______

Date_____________

Vocational/Rehabilitation Services
Other (specify):
Advocacy/Referral Organizations:
AIDS Coalition
Alzheimer’s Association
American Council of the Blind
Autism Society state/regional chapter
Brain Injury Association state/regional
chapter
Centers for Independent Living
Easter Seals
Epilepsy Foundation state/regional
chapter
National Association of Mental Illness
state/regional chapter
National Autism Association
state/regional chapter
National Multiple Sclerosis Society
state/regional chapter
State Association for the Deaf
United Cerebral Palsy
Other (specify):

Page 125 of 170

Process Evaluation Survey: State-Level
Interviewer Initials (or ID) _______

11.

Date_____________

Approximately, how many FTEs (Full-time equivalents) at the state level perform each of
the following functions?
Information & Referral /Information & Assistance (I&R/I&A)
Options counseling/counseling to provide in-depth person centered decision
support
Benefits counseling/eligibility determination
Care transition services
Crisis intervention services
Independent Living services
Advocacy services
Providing administrative or other support for the above functions

12. At the State level, how many FTE (Full-time equivalents) are dedicated to working with the
ADRC(s) in your State?
_________
13. Is your organization paid on a fee-for-service or per-unit basis for performing any of the
following services for a client? (Please check all that apply)
 Information/referral
 Options counseling
 Screening
 Assessment
 Application assistance
 Transition support
 Other, please specify
14. . [if any of the boxes are checked in previous question] What is the source of the fee-forservice or per-unit payments?
 Medicare
 Medicaid waiver
 Medicaid state plan
 Medicaid managed care organization
 State-funded program other than Medicaid
 Private health plan
 Provider
 Other, please specify

Section D. Long-Term Service and Support Environment
15. Please add any final thoughts about [insert ID] and either its operations and/or its results
(Open response) ____________________________

Page 126 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Attachment B: PARTICIPANT EXPERIENCE SURVEY

INSTRUCTIONS TO ABT SRBI: PREPOPULATE (PP) INFORMATION IN [ ] FROM CLIENT SCREENING
TOOL (ES) AND DATA COLLECTION (DC) TOOLS. THESE PREPOPULATED DATA WILL BE USED
THROUGHOUT THE SURVEY TO ORIENT THE RESPONDENT TO THEIR EXPERIENCE WITH THE
AGENCY AT THE TIME OF THE CONTACT IN WHICH THEY WERE SCREENED FOR ELIGIBILITY FOR THE
STUDY.
[ID Number – Footer ES/DC]
[Agency Type – ES 2]
□

ADRC

□

AAA

[Need Spanish interpreter – DC 6]
□

Yes

□

[Need TTY service - DC 7]
□

Yes

□

[Preferred call time – DC 5]

PP1. [Agency Name – ES 1] ______________________________
PP2. [Respondent Type – ES 3]
Self
Parent
Child
Other relative
Friend
Neighbor
Client/Patient
Other: ____
DK
Page 127 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

REF
PP3. [Study Type – ES 5/ES 6]
□

Older Adult (response to 5=≥60)

□

Disability (yes to any 6a-6f)

PP4. [Result of Contact – ES 7]
□

Options Counseling

□

Public benefits counseling /eligibility determination

□

Information & Referral /Information & Assistance ___________________

□

Crisis intervention

□

Independent living services

□

Transition Assistance _________________________________

PP5. [Date of Contact – DC 1]
(month, date, year) _ _ /_ _ /_ _
PP6. *Reason for contacting the agency (client’s need at time of the time of contact) – DC 8]
________________________________________________________________________________
PP7. [Mode of Contact – DC 10]
□

In-person (visit)

□

Telephone (call)

PP8. [Respondent Name – DC 2]
PP9. [Respondent Age – ES 5]

Page 128 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Introduction

Yes [If yes, skip to Statement of Informed Consent]

□

No, this is a bad time

[Continue]

□

No, I don’t remember calling agency

[Terminate]

□

REF, no I don’t want to do an interview [Terminate]

Page 129 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Participant Experience Survey

YES [If yes, skip to qA3, else continue to qA2]

□

REF

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Family member, friend or other acquaintance

□

Hospital/Clinic/Doctor

□

Nursing Home/Assisted Living

□

Phone Book

□

Brochure/Flyer

□

Referral from senior center

□

Referral from another agency/organization

□

Through work

□

Internet/Website

□

Media/Newspaper/TV/Radio

□

Other ______________________

4. Was [insert PP1] the first organization that you contacted about [insert PP6]?
□

Yes

□

REF

Section B. Agency Efficiency

Minimal wait (less than five minutes)

□

Five to 10 minutes
Page 131 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______
□

10 minutes to 20 minutes

□

Over 20

□

REF

Date_____________

[Following response, skip to qB4].
2. Were you able to talk to a representative during your first contact?
□

YES [If yes, skip to qB4, else continue to qB3]

□

REF

3. Do you recall how many additional contacts (including calls where you left a message on a
machine) you had to make before you were able to talk with a representative? [DO NOT
READ RESPONSES]
□

None

□

One

□

Two

□

Three

□

Four or more

One time

□

Two times

□

Three or four times

□

Five or more times

5. Throughout your contact with [insert PP1] did any of the following circumstances reduce or
prevent your ability to resolve your issue? [CHECK ALL THAT APPLY]
□

[insert PP1] inconvenient hours of operations

□

Difficulty reaching [insert PP1] staff

□

Language or communication problems

□

Lack of Staff professionalism

□

Lack of Staff knowledge

□

Lack of Staff follow through

Page 132 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Section C. Effectiveness of Agency Representative

1. Did you feel the representative at [insert PP1] paid close attention to what you were
saying?
□

YES

□

SOMEWHAT

□

REF

2. In your opinion, how knowledgeable was the representative at [insert PP1]? Were they…
□

Very knowledgeable

□

Somewhat knowledgeable

□

Not very knowledgeable

□

Not at all knowledgeable

□

REF

3. Was the information you received from the representative at [insert PP1] clear and
understandable?
□

Very clear and understandable

□

Somewhat clear and understandable

□

Not very clear or understandable

□

Not at all clear or understandable

□

REF

YES

□

REF

Page 133 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

5. If assistance was requested, did the representative at [insert PP1] work with you to develop
an action plan outlining your next steps in meeting your long terms care needs?
□

YES [if yes go to C6; otherwise skip to D1]

□

N/A

□

REF

6. Does the plan accurately reflect your needs and preferences?
□

Yes

□

Somewhat

□

N/A

□

REF

Section D. Institutional Diversion

1. When you contacted the [insert PP1], were you considering a move to a long-term care
setting, such as a nursing home, for [insert PP2]?
□

YES

□

REF

2. Did the representative you talked to at the [insert PP1] on [insert PP5] help you to
understand other choices in addition to a nursing home or other long-term care setting?
□

YES

□

N/A

□

REF

Page 134 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

3. On a scale from 0% to 100% what is the percent chance that you, or the person for whom
you contacted the agency will have to move into a nursing home within the next five years?
_______ % PROMPT 0 10 20 30 40 50 60 70 80 90 100%
OR
Section E. Assistance with Services

Directly ([insert PP1] provided the service) [If selected, skip to Section E.1]

□

Indirectly (you were referred elsewhere)

□

Both/some services provided by [insert PP1] staff and some through referrals

□

REF

YES [If yes, continue to qE3; else skip to Section E1]

□

REF

3. Did the representative of the [insert PP1] transfer your call to an agency/organization that
provided you with your needed/requested services?
□

YES [If yes, skip to qE6; else, continue to qE4]

□

REF

Page 135 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

4. Did the representative give you contact information (telephone number, address, web
address) of an agency/organization that provided you with needed/requested services?
□

YES [If yes, skip to qE6; else continue to qE5]

□

REF

5. Did the representative contact the needed service provider and arrange for them to contact
you?
□

YES [If yes, continue to qE6; else, skip to Section E.1]

□

REF

Provider had the information

□

Provider had the information but it wasn’t correct or it was incomplete – had to start
the process again

□

Provider did not have the information – had to start the process again

□

REF

Page 136 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Other _______________

□

None

□

REF

Page 137 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

8. What was the result of the referral?[READ FROM THE FOLLOWING LIST AND CHECK THE
MOST APPROPRIATE RESPONSE ]
□

[insert PP2] received services [If selected, skip to Section E.1]

□

[insert PP2] DID NOT receive services

□

It’s too soon to tell [If selected, skip to Section E.1]

9. You said that [insert PP2] did not receive the services through the referral, why do you think
that is? [RECORD RESPONSE AND CHECK APPRORIATE RESPONSE(S) BELOW]
___________________________
□

The services were not what [insert PP2] wanted/needed

□

The service/program is not accepting applications/there is a waitlist

□

It is too expensive

□

There is no transportation

□

The service or program is not available at times needed

□

[insert PP2] is not eligible

□

I tried to contact the service or program that was referred, but was busy/unavailable
□

Line was busy

□

Wait time too long

□

Other ___________________

□

Have not yet contacted, but plan to

□

Have no plans to contact the service or program
□

□

REF

Please Specify reason ____________________

Section E.1. Assistance with Medicaid Eligibility Determination

YES

□

NO [If no, skip E.1.5; else continue to E.1.2]

□

REF
Page 138 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

2. Did you complete a [insert name of state Medicaid program] application through the
[insert PP1]?
□

YES [If yes, continue to qE1.3; else skip to Section E1.4].

□

REF
If no, please explain why __________________

3. Were you provided with help by the agency in completing the [insert name of state
Medicaid program] application?
□

YES

□

REF

4. How long did you wait to find out if you qualified for [insert name of state Medicaid
program]? [DO NOT READ RESPONSES, CHECK APPRORIATE RESPONSE]
□

One day or less

□

Two to six days

□

One week

□

More than one week, but less than a month

□

Over a month

□

Still waiting

□

REF

5. Were you given information by the agency about other insurance resources besides [insert
name of state Medicaid program]?
□

YES

□

REF
If yes, please specify _____________________________

Page 139 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Section E.2. Assistance with One-on-One Options Counseling

6. Did you request, need, or accept a conversation with a counselor (e.g., one-on-one
counselor, case management), in other words, someone to talk with about understanding
and selecting the long-term services (beyond information and referral)?
□

YES

□

NO [If no, skip to Section E3; else continue to qE.2.2]

□

REF

7. Did the counselor (e.g., one-on-one counselor, case manager) visit you in your home?
□

YES

□

REF

8. Following the first meeting, did the counselor (e.g., one-on-one counselor, case manager)
follow-up with you either by phone calls and/or additional in-home visits?
□

YES

□

REF

9. Did the information and support that the counselor (e.g., one-on-one counselor, case
manager)gave you help you to:
Yes,

Yes,

No,

definitely

probably

probably not

definitely not

Page 140 of 170

n/a

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

10. How satisfied or dissatisfied are you with the service you received from the counselor (e.g.,
one-on-one counselor, case manager)?
□

Very satisfied

□

Somewhat satisfied

□

Somewhat dissatisfied

□

Very dissatisfied

Section E3. Care Transition Services

1. Did you receive services that helped you to transition from a hospital or other acute care
facility into the community?
□

YES

□

NO [If no, skip to Section F; else continue to qE3.2]

□

□ REF
2. Did you receive any of the following services?
□

A contact before discharge to assess your discharge needs

□

An explanation of your discharge instructions

□

Post discharge services such as transportation to the doctor, help filling prescriptions,
household help

□

Follow up within 48 hours of discharge

3. How satisfied or dissatisfied are you with the transition service you received?
□

Very satisfied

□

Somewhat satisfied

□

Somewhat dissatisfied

□

Very dissatisfied

Section F. Services Received from the [insert PP1]

Now I’d like to ask you some questions about the overall results of your contact with [insert PP1].

Page 141 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

1. Did you ever receive the service that you were seeking based on your contact with [insert
PP1]?
□

YES, within one week of contact

□

YES, after more than a week

□

NO [If no continue to qF2; else, skip to qF3]

□

REF

2. Why do you think you have not received the services?[READ FROM THE FOLLOWING LIST,
STOP AT THE FIRST YES RESPONSE AND CHECK THAT RESPONSE]
□

The services are not available.

□

[insert PP2] is on a waitlist.

□

I could not get to the services (e.g., hours of operation, transportation barriers)

□

The information/help received from [insert PP1] was not useful.

□

I did not follow-up on the information and/or referral.

□

I no longer need the services.

□

Other

3. Since contacting the [insert PP1] on [insert PP5], have you been in touch with any other
agencies similar to [insert PP1] to receive [insert PES A2 if answered; else insert PP6]?
□

YES [If yes, continue to qF4; else, skip to qF5]

□

REF

YES [If yes, please specify need(s) __________________]

□

REF

Page 142 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

5. As a result of your conversations with [insert PP1] staff, did YOU realize that you had a need
or concern that you did not know that you had before contacting the [insert PP1]?
□

YES

□

REF

6. Did the [insert PP1] follow up with you to find out how useful the information was or how
the referral(s) turned out?
□

YES

□

REF

7. On the following scale, as a result of your contact with [insert PP1], how satisfied are you
with…
Very
satisfied

Somewhat
satisfied

b. The services that you received directly from
[insert PP1]?
[If somewhat or very dissatisfied] please
explain
why___________________________________
b. The services that you received from agencies
you were referred to by [insert PP1]?
If somewhat or very dissatisfied, please explain
why___________________________________
c. Comprehensiveness of the information or
services provided?
If somewhat or very dissatisfied, please explain
why___________________________________
d. The personalization/individualization of the
services offered?
If somewhat or very dissatisfied, please explain
why___________________________________
e. The accuracy of the information provided?
If somewhat or very dissatisfied, please explain
why___________________________________
f. The support you received related to decisionmaking?
Page 143 of 170

Somewhat
dissatisfied

Very
dissatisfied

Not
applicable

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Very
satisfied

Somewhat
satisfied

Somewhat
dissatisfied

Very
dissatisfied

Not
applicable

If somewhat or very dissatisfied, please explain
why___________________________________
g. The professionalism of the
organization/staff?
If somewhat or very dissatisfied, please explain
why___________________________________
h. How easy it was to work with [insert PP1] to
resolve my issue related to [insert PP6]?
If somewhat or very dissatisfied, please explain
why___________________________________

8. As a result of your contact with the [insert PP1], would you say that you are…..
□

Much better informed about your long term care options

□

A little better informed

□

About the same

□

A little more confused

□

Much more confused

□

REF

9. To what degree has the information you received from [insert PP1] been useful to you as
you select the long term care options that are best for you?
□

Very useful

□

Somewhat useful

□

Not useful

□

□ REF
10. Would you tell a friend or relative who needed help to contact the [insert PP1]?
□

YES

□

REF

11. How likely is it that you would contact the [insert PP1] for services in the future?
□

Very likely

□

Somewhat likely
Page 144 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______
□

Somewhat unlikely

□

Very unlikely

Date_____________

Section G. Heath and Demographic Information

In the next set of questions we would like to learn a little about your health and health insurance.
1. Do you have any of the following types of health insurance? [Record all that apply]
NO

YES

Don’t
Know

Medicare
[insert name of state Medicaid
agency]
Private Health Insurance
Other, please specify____________
Uninsured

2. At the present time, would you say your health is excellent, good, fair, or poor?
□

Excellent

□

Good

□

Fair

□

Poor

□

Refused to answer

□

Don’t know

3. Have you been admitted to a hospital in the past 6 months?
□

Yes

□

Refused to answer

□

Don’t know

SS # ________________________________

Page 145 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

Male

□

Female

□

REF

8. What is the highest grade or year of school you have completed?
□

No formal schooling

□

First through 7th grade

□

8th grade

□

Some high school

□

High school graduate

□

Some college

□

Associates degree

□

Four-year college graduate

□

Some graduate school

□

Graduate and professional degrees

□

(VOL) REF

9. Which of the following racial categories describes you? You may select more than one.
READ LIST AND MULTIPLE RECORD
□

American Indian or Alaska Native

□

Asian

□

Black or African-American

□ Hispanic/Latino
□

Native Hawaiian or Other Pacific Islander

□

White

□

(VOL) Other (SPECIFY)

□

(VOL) Refused
Page 146 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

10. What was your total household income before taxes in 2011? Your best estimate is fine.
[CHECK APPROPRIATE RESPONSE]
□

Less than $5,000

□

$5,000 to $14,999

□

$15,000 to $29,999

□

$30,000 to $49,999

□

$50,000 to $74,999

□

$75,000 to $99,999

□

$100,000 or more

□

(VOL) Not sure

□

(VOL) Refused

11. What is you marital status? Are you …..
□

Married

□

Widowed

□

Divorced

□

Separated

□

Single, never married

12. With whom, if anyone, do you live? [READ LIST; SELECT ONE]
□

Alone

□

With a spouse

□

With one or more other family members

□

With one or more friends/people who are not related to me

Page 147 of 170

PARTICIPANT EXPERIENCE SURVEY
Interviewer Initials (or ID) _______

Date_____________

13. Of the following choices, which one most closely describes your living situation? Do you live
in…… [READ LIST, COULD BE MORE THAN ONE RESPONSE]
□

My own house or apartment (e.g., free-standing, row house, town house, apartment,
etc.)

□

Non-medical custodial housing (e.g., group home, congregate house, half-way house,
safe-house, recovery house, board and care house, other residential non-medical adult
care facility)

□

In an assisted living setting [if yes, skip to qG15]

□

In a nursing home

□

In a continuing care retirement setting

□

Other [If other, please specify] ____________________________

14. Have you ever lived in an assisted living setting?
□

Yes

□

(VOL) DK

□

(VOL) REF

If yes, how long did you live there? __ _ /_ _ (months/years)
15. Have you ever lived in a nursing home?
□

Yes

□

(VOL) DK

□

(VOL) REF

If yes, how long did you live there?__ _ /_ _ (months/years)

THANK YOU VERY MUCH FOR TAKING THE TIME TO SHARE YOUR EXPERIENCES OF SEEKING
INFORMATION ABOUT SERVICES IN YOUR COMMUNITY. IT IS OUR HOPE THAT THE
INFORMATION THAT YOU PROVIDED WILL HELP IMPROVE THE ACCESSIBILITY AND QUALITY
OF SERVICES IN YOUR COMMUNITY.
I just want to confirm that you consent to our sharing your name, contact information, and
the last four digits of your Social Security number (if provided) with the Administration on
Aging for possible inclusion in a future study about the health care usage of individuals
seeking long term services or support. Participation in that study would not involve further
contact or any more of your time.
□

Yes

□

[If no, assure participant that these data will not be provided to AoA.]
Page 148 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

Attachment C: CLIENT SCREENING TOOL
INSTRUCTIONS FOR COMPLETING THIS FORM:
THROUGHOUT THIS DOCUMENT, CLIENT REFERS TO THE PERSON WHO IS MAKING
CONTACT WITH YOUR AGENCY. CONSUMER IS THE PERSON FOR WHOM THE LONG
TERM SUPPORTS AND SERVICE ARE INTENDED.
SOME SCREENING QUESTIONS ARE PREPOPULATED, AND OTHERS MAY BE
ANSWERED DURING THE COURSE OF THE ROUTINE DISCUSSION WITH THE CLIENT.
QUESTIONS 1 AND 2 WILL BE PREPOPULATED BY THE RESEARCH TEAM.
QUESTIONS 3-6 SHOULD BE ASKED IF NOT ANSWERED DURING THE ROUTINE
CLIENT DISCUSSION.
QUESTIONS 7 AND 8 SHOULD BE FILLED IN BY THE AGENCY
1. Agency Name ____________________________________ [WILL BE
PREPOPULATED BY RESEARCH TEAM]
2. Agency Type [WILL BE PREPOPULATED BY RESEARCH TEAM]
ADRC
AAA
3. ASK: “For whom did you contact the agency?”
Self*
Parent
Child
Other relative
Friend
Neighbor
Client/Patient*
Page 149 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

Other: ____
DK
REF

IF DK OR REF, CLIENT IS INELIGIBLE FOR THE STUDY.
DISCONTINUE SCREENER.
*IF SELF ASK: “Do you have a legal guardian? That is someone appointed by the
court to handle your affairs.”
Yes

IF YES, CLIENT HAS A LEGAL GUARDIAN, CLIENT IS INELIGIBLE FOR
THE STUDY. DISCONTINUE SCREENER.
*IF CLIENT, ASK: “Are you a professional caregiver such as a physician, hospital
discharge planner, or nursing home staff?”
Yes

IF NO, DISCONTINUE SCREENER.
5. ASK,” What is the age of the consumer (i.e., the person for whom contact was
made)?
______________ Years
Page 150 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

PROBE IF UNABLE TO REMEMBER AGE: DO YOU RECALL THE YEAR OF BIRTH?
_______________
[RESPONSE TO THE FOLLOWING QUESTION SHOULD BE MADE FOR THE PERSON
IDENTIFIED IN QUESTION 3 ABOVE]
IF THE FOLLOWING INFORMATION IS NOT NORMALLY COLLECTED BY YOUR
AGENCY, PLEASE READ THE FOLLOWING TO THE CLIENT: “I’d like to ask you a few
additional questions to see if you are eligible to participate in a satisfaction survey.
Is it okay if I ask these questions?”
Yes
No

IF NO, DISCONTINUE SCREENER.
6. ASK, “Do you (OR THE PERSON FOR WHOM CONTACT WAS MADE, IF
NOT SELF) have a disability….”
a. Are you deaf or do you have serious difficulty hearing?
□ Yes
□ No
□ DK
□ REF
b. Are you blind or do you have serious difficulty seeing, even when wearing
glasses?
□ Yes
□ No
□ DK
□ REF
c. Because of a physical, mental, or emotional condition, do you have serious
difficulty concentrating, remembering, or making decisions?
□
□
□
□

Yes
No
DK
REF
Page 151 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

d. Do you have serious difficulty walking or climbing stairs?

□ Yes
□ No
□ DK
□ REF
Do you have serious difficulty dressing or bathing?

□ Yes
□ No
□ DK
□ REF
f. Because of a physical, mental, or emotional condition, do you have serious
difficulty doing errands alone such as visiting a doctor’s office or shopping?
□ Yes
□ No
□ DK
□ REF
IF AGE IS LESS THAN 60 AND NONE OF THE ITEMS IN QUESTION 6 HAD A
―YES‖ RESPONSE, PARTICIPANT IS INELIGIBLE FOR THE STUDY.
DISCONTINUE SCREENING.
INSTRUCTIONS: QUESTIONS 7 AND 8 SHOULD BE ANSWERED BY AGENCY BASED ON OBSERVATIONS OF THE
CLIENT.

7. As a result of this contact, did/will the client (OR THE RECIPIENT OF LTSS) receive
any of the following services?
Yes

Information Assistance and/or Referral(s) (not including
options counseling)

Options Counseling or Peer Support/Peer Counseling

Benefits Counseling or Eligibility Determination

Transition assistance

Crisis intervention
Page 152 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

Life skills training or support

IF NO TO ALL RESPONSES IN 7 ABOVE, CLIENT IS INELIGIBLE FOR THE STUDY.
DISCONTINUE SCREENING.
NOTE SERVICES RECEIVED OR CLIENT REQUEST
_________________________________
8. Based on your observation, does the client have any apparent physical,
cognitive, or mental conditions that would prevent him/her from making an
informed decision about taking part in this study and /or participating in a 15-20
minute telephone survey?
Yes

IF YES TO ITEM 8, CLIENT IS INELIGIBLE FOR THE STUDY.
IF NO, CONTINUE TO SECTION 2. STUDY DESCRIPTION/AGREEMENT TO
PARTICIPATE.
For questions regarding how to use the screening tool or complete the form, please
contact the project Co-Principal Investigator, Rosanna Bertrand or team member, Louisa
Buatti:
Rosanna Bertrand, Ph.D.
Abt Associates Inc.
(617) 349-2556
ADRC_Mailbox@abtassoc.com

Page 153 of 170

Louisa Buatti
Abt Associates Inc.
(301) 634-1711

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

Attachment D: STUDY DESCRIPTION/AGREEMENT TO PARTICIPATE
INSTRUCTIONS: READ THE FOLLOWING STATEMENT TO EACH PERSON WHO IS ELIGIBLE TO
PARTICIPATE IN THE STUDY.
“The Administration on Aging has contracted with IMPAQ International and Abt Associates to conduct a study
about the experiences of people like you in obtaining community-based supports and services. Your opinion is
very important, which is why you are being invited to participate in a 15 to 20 minute survey which will ask
you about your experiences today. If you agree, your name will be added to a list of possible participants, and
if randomly selected from the list, someone from Abt SRBI, the company conducting the survey, will contact
you by telephone within the next month to tell you more about the study and confirm whether or not you
want to participate.
Right now, I am asking your permission to share some information about you with Abt SRBI so that they will be
able to call you about participating in the survey. With your permission, I would like to share your name,
phone number, the reason you contacted us today, and a few other pieces of information such as information
about possible disabilities. Your name or other identifying information will be used only to contact you and
will not be stored in the same data file with your responses to the survey or used in any written materials
generated in this study. Your decision will not affect your relationship with this agency nor your eligibility to
receive their services.

May I share this information so that Abt SRBI can contact you for participation in the survey?”
Yes No

IF NO, SAY “Thank you for your consideration.”

Page 154 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

ATTACHMENT E: CONTACT INFORMATION DATA COLLECTION TOOL
INSTRUCTIONS:
COMPLETE THE INFORMATION BELOW FOR EACH PERSON WHO AGREED TO SHARE
CONTACT INFORMATION WITH THE RESEARCH TEAM IN ORDER TO RECEIVE A FOLLOWUP CALL TO PARTICIPATE IN A TELEPHONE SURVEY.
THROUGHOUT THIS DOCUMENT, THE CLIENT REFERS TO THE PERSON WHO CONTACTED
THE AGENCY.
1. Date of Contact with Agency (month, date, year) _ _ /_ _ /_ _
2. ASK: What is your name (First, Middle Initial, Last) _____________, ________,
__________________
3. ASK: What is your home zip code? _ _ _ _ _
4. ASK: “What is the best phone number where you can be reached by the research team?”
Client Phone number (_ _ _) _ _ _ - _ _ _ _
5. ASK: “What is the best time for someone to call you about participating in the study?”
Preferred time to call _ _: _ _
Preferred day to call? _______

6. ASK: “Would you like assistance from a Spanish interpreter when the research team calls you to
discuss the study?”
No
Yes
Page 155 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

7. ASK: “Would you like to use TTY service for the study?”
No
Yes
8.

ASK: “What was the main reason that you contacted us today?”
Income assistance
Energy assistance
Medicare questions
Medicaid questions (including questions about HCBC waivers)
Housing
Personal care
Transportation
Nutrition
Chronic health conditions
Employment
Support groups
Recreation opportunities
Caregiver/respite support
Home modification
Attendant care services
Advocacy
Education
Services for emergent care/crisis intervention
Preventative health services
Ombudsman/abuse or neglect issues
Advanced directives
Mental health
Transition services
Other Independent living supports or services
Other, please specify

Page 156 of 170

[ID# _______ES (will be pre-filled)]

[Agency Name ____________ (will be pre-filled)]

9. ASK: “Is this the first time you contacted this agency?”
First time contact
Repeat contact
QUESTIONS 10-11 SHOULD BE ANSWERED BY THE AGENCY.
10. Mode of Contact with Agency
Visited
Telephoned
11.

IF THE CLIENT STOPPED THE QUESTIONNAIRE BEFORE COMPLETING IT, PLEASE
SELECT THE BEST/MOST LIKELY REASON FOR STOPPING:
Client refused to answer
Client’s cognitive abilities prevented completion of questionnaire
Client’s physical condition prevented completion of the questionnaire
Client’s emotional condition prevented completion of the questionnaire
Other, please explain ________________________________________

12. The signature of the person who administered this questionnaire indicates that he/she has read the above
statement to the consumer/consumer representative and that the person has agreed to have his/her
personal information released to Abt SRBI for the purpose of the evaluation.
Name______________________ Date__________
For questions regarding how to use the screening tool or complete the data collection tool, please contact the
project Co-Principal Investigator, Rosanna Bertrand or team member, Louisa Buatti:
Rosanna Bertrand, Ph.D.
Abt Associates Inc.
(617) 349-2556
Rosanna_Bertrand@ abtassoc.com

Louisa Buatti
Abt Associates Inc.
(301) 634-1711
Louisa_Buatti@abtassoc.com

Page 157 of 170

ATTACHMENT F: PROCESS EVALUATION SURVEY STATEMENT OF INFORMED
CONSENT

Statement of Informed Consent

Page 158 of 170

Attachment G: PARTICIPANT EXPERIENCE SURVEY STATEMENT OF INFORMED
CONSENT
I will read to you a statement of informed consent that will provide you with information about the survey and
inform you of your rights as a survey respondent. The Administration on Aging is sponsoring a national
evaluation of the accessibility of community long-term supports and services. You are receiving this call
because you contacted the [name of agency] on [insert date] and gave your permission for a research team to
contact you to participate in a brief telephone survey about your experience. The survey is being conducted
by Abt SRBI on behalf of the Administration on Aging. Your input about your experiences in obtaining
community-based supports and services is important to us. Your participation in this 15 – 20 minute survey is
completely voluntary and you may choose to discontinue the interview at any time, for any reason.
We will combine the information that we gather from all participants (about 3,400), and include the findings in
a report that will be prepared for the Administration on Aging for the purpose of improving its services. Your
name or any other identifying information will not be used in any report generated in this study. Your
confidentiality will be protected to the extent provided by law. There will be no direct benefit to you from
participating in the evaluation, nor will your or your family’s services be impacted in any way by your
responses to this survey. The information you provide will help the Administration on Aging improve its
services for both older Americans and individuals with disabilities.

Page 159 of 170

Attachment H: LETTER OF SUPPORT FROM THE ADMINISTRATION ON AGING FOR
ORGANIZATIONS PARTICIPATING IN THE PROCESS EVALUATION

Dear [RESPONDENT NAME],

Dear [RESPONDENT NAME],
The Administration on Aging (AoA) had contracted IMPAQ International LLC and their partner, Abt Associates
Inc., to evaluate the Aging and Disability Resource Center (ADRC) Program and how the ADRC approach
compares to how non-ADRC organizations function. We are writing to urge you to participate in an online
survey that is designed to help us better understand the operational processes of your agency.
This online survey is designed to: (1) gain an understanding of LTSS programs from State and local
perspectives, (2) inform the analysis of an outcomes evaluation by exploring potential factors that may be
controlled in the analyses, and (3) collect information that will guide recommendations for continuous quality
improvement in the LTSS program. This study consider the effectiveness of the ADRC program as it relates to
both ADRC staff and ADRC consumers, how other organizations provide LTSS to similar clients, and will
influence the direction of the ADRC Program in the future. We ask that you participate in this survey and
provide us with honest feedback about how LTSS are provided to clients.
We expect this survey to take approximately one hour to complete; however, it could take longer if it is
necessary to collect data from other sources.
If you have any questions
Susan.Jenkins@aoa.hhs.gov.

about

your

participation

Thank you for your participation,
[Insert signature here]

Page 160 of 170

this

evaluation,

please

ATTACHMENT I: PROCESS EVALUATION SURVEY INVITATION FOR SITE
DIRECTORS/MANAGERS OR OTHER STAFF

You have been selected to participate in an online survey sponsored by the Administration on Aging.

The survey is designed to collect information about your program including program goals, daily operations, and
partnerships. Your opinions and experiences are extremely important. The information that you and others provide will
be aggregated and used to make improvements to current and future Administration on Aging grant programs.

Your responses will be held in confidence and will only be used in combination with those of other agency directors; you
will not be personally identified when shared with Administration on Aging, staff within your organization, or any other
agency except as required by law.

This online survey is designed to: (1) gain an understanding of [ADRC or AAA] programs from State and local
perspectives, (2) inform the analysis of an outcomes evaluation by exploring potential factors that may be controlled in
the analyses, and (3) collect information that will guide recommendations for continuous quality improvement in the
[ADRC or AAA] program.

We expect this survey to take approximately one hour to complete; however, it could take longer if it is necessary to
collect data from other sources. Please visit the technical assistance exchange website www.adrc-tae.org with your login to start the survey:

Susan, Jenkins, PhD
Social Science Analyst
Center for Disability and Aging Policy
Administration for Community Living
US Department of Health and Human Services
1 Massachusetts Avenue, NW Washington, DC 20201
Telephone-202.357.3591 Fax-202.357.3549 E-mail- Susan.Jenkins@AoA.HHS.Gov

Page 161 of 170

Attachment J: LETTER OF SUPPORT FROM THE ADMINISTRATION ON AGING TO
POTENTIAL ORGANIZATIONS SELECTED FOR THE OUTCOME EVALUATION

Dear [DIRECTOR NAME],
The Administration on Aging (AoA) has contracted with IMPAQ International, LLC and Abt Associates Inc. to
evaluate the Aging and Disability Resource Center (ADRC) Grant Program. The overall purpose of the
evaluation is to gather a range of program and consumer information to help AoA better understand how to best
support the delivery of long-term services and supports (LTSS). The study will consider the effectiveness of
different approaches to the provision of long-term care services and supports from the organizational and
individual perspectives. We are contacting your organization to ask you to participate in the consumer-level
data collection effort. The data supplied by your organization or network and its consumers will be combined
with data from other organizations or networks to determine which approaches to service provision work best
for different types of consumers and under what circumstances.
[ORGANIZATION NAME] has been selected to participate in the study based on its geographic location and
other community-level attributes. We are asking for assistance from the I&R / I&A specialists in your
organization or network to screen and recruit consumers to participate in a survey to be administered by the
research team. We expect that screening and recruiting participants will take less than five minutes and can be
done during the course of routine interaction with consumers. In fact, much of the needed information is likely
already collected by your staff. Training and ongoing support will be provided to I&R/ I&A specialists by the
researchers. To provide you with more information, we have included a one-page fact sheet about the
evaluation with this letter.
In approximately one week, you will receive a phone call from the evaluators at Abt Associates who will
provide you with more information concerning the study and formally request your organization’s participation.
If you have any questions about your participation in this evaluation, please email Susan Jenkins at
Susan.Jenkins@AoA.HHS.GOV.
Thank you for your participation,

Page 162 of 170

ADRC EVALUTION FACT SHEET
[Will be sent with Letter of Support from the Administration on Aging to potential organizations selected for
the outcome evaluation]
Sponsor: This study is being sponsored by the Administration on Aging (AoA), an operating division of the US
Department of Health and Human Services
Purpose: To help AoA better understand how to support the delivery of long-term services and supports
(LTSS). The study will consider the effectiveness of different approaches to the provision of long-term care
services and supports from the organizational and consumer perspectives.
Benefits to your organization: While there are no direct benefits to your organization, the information that you
collect will provide important insight into the provision of long-term services and supports (LTSS). This will
help organizations, such as yours, and Agencies, such as AoA, improve LTSS policies and practices. The
ultimate benefit is for consumers.
Your role: If your organization is able to participate in this important research, your organization will be asked
to:
1. Provide contact information for the frontline staff (I&R/I&A) with whom consumers first come into
contact. Estimated time required: varies by organization
2. Allow the research team to contact these staff and provide them with training and technical support
regarding their role in the research study. Estimated time required: 30 minutes per staff member
3. Over a 3-6 month period, as I&R/I&A staff are contacted by consumers they will ask them a few
screening questions and gather contact information. Estimated time required: 5 minutes per consumer.
4. Send the screening and contact information to the research team approximately monthly. Estimated time
required: 15 minutes per month.

Page 163 of 170

Attachment K: OUTCOME EVALUATION RECRUITMENT TELEPHONE SCRIPT
Recruitment calls are made to the directors at local-ADRC, AAA, and CIL sites that have been selected to
participate in the outcome evaluation. This call is made approximately one week following the expected date
that the agency director receives the AoA letter of support.
Step 1: Describe main parts of study and informed consent, answer any questions

Hello/ Good morning/ Good afternoon. My name is [
]. I am calling from Abt Associates about a study we
are conducting for the Administration on Aging (AoA). You should have received a letter from AoA alerting
you to the study within the past week or two. Did you receive the letter?
3. [If no, skip to # 2] If YES, Did you have a chance to look it over [if no, skip to #2]? To remind you, the
study involves a telephone survey that will be administered to some of your consumers. It is designed
to help AoA better understand the experiences of older adults and persons with disabilities in obtaining
community-based support and services through organizations like yours. I am calling to answer any
questions that you might have about the study and to confirm your organization’s involvement. But,
first let me tell you a bit about the study. Participation in this study by your organization is voluntary so
you may choose not to join and will not be penalized for your decision. If you agree to participate, we
will ask that your key I&R/I&A specialists participate in a 40 minute webinar training program, screen
consumers who contact them over a 3-6 month period for eligibility in the study, and collect and
forward this information to the research team. The eligibility screener gathers information about
whether the consumer contacted you for themselves or someone else (e.g., the primary consumer),
the primary consumer’s age, whether the primary consumer has any of a range of physical or mental
disabilities, and the type of services the consumer received or was referred to. The data collection
portion requests the consumer’s contact information (so that the research team can contact them to
conduct the interview); whether they need any accommodations for the interview, such as a Spanish
speaking interviewer or if they will be using a TTY service; the main reason for their contact with your
organization; and the mode of contact (e.g., telephone, walk in). Because you likely already collect
much of this is information, it is expected that the eligibility screening and data collection will take less
than five additional minutes. I&R/I&A specialists will also be asked to forward the data to the
research team according to a schedule we jointly determine, most likely monthly.
Say, “Is your organization able to participate in the study?”
If NO, say “Can I ask why?” “Thank you for your time.”
If YES, say “Great. You will be receiving follow-up email from the research team confirming your participation,
and asking for contact information for the organization’s I&R/I&A specialists. With your permission, we will
follow-up with them directly regarding their participation and to provide information about the training. ”
Page 164 of 170

4. If NO (did not receive the letter) or if did not have a chance to look over study materials, let me tell
you about the study.
The study involves a telephone survey that will be administered to some of your consumers. It is
designed to help AoA better understand the experiences of older adults and persons with disabilities in
obtaining community-based support and services through organizations like yours. Your participation in
this study is voluntary so you may choose not to join and will not be penalized for your decision.
If you agree to participate, we will ask that your key I&R/I&A specialists participate in a 40 minute
webinar training program, screen consumers who contact them over a 3-6 month period for eligibility
in the study, and collect and forward this information to the research team. The eligibility screener
gathers information about whether the consumer contacted you for themselves or someone else (e.g.,
the primary consumer), the primary consumer’s age, whether the primary consumer has any of a range
of physical or mental disabilities, and the type of services the consumer received or was referred to.
The data collection portion requests the consumer’s contact information (so that the research team
can contact them to conduct the interview); whether they need any accommodations for the
interview, such as a Spanish speaking interviewer or if they will be using a TTY service; the main reason
for their contact with your organization; and the mode of contact (e.g., telephone, walk in). Because
you likely already collect much of this is information, it is expected that the eligibility screening and
data collection will take less than five additional minutes. I&R/I&A specialists will also be asked to
forward the data to the research team according to a schedule we jointly determine, most likely
monthly.
Say, “Is your organization able to participate in the study?”
If NO, say “Thank you for your time.”
If YES, say “Great. You will be receiving follow-up email from the research team confirming your participation,
and asking for contact information for the organization’s I&R/I&A specialists. With your permission, we will
follow-up with them directly regarding their participation and to provide information about the training. ”

Page 165 of 170

SECTION 3: Additional Material

Page 166 of 170

60-Day Federal Register Notice

Attachment L: 60-DAY FEDERAL REGISTER NOTICE

Federal Register, Volume 76 Issue 199 (Friday, October 14, 2011)[Federal Register Volume 76, Number 199
(Friday, October 14, 2011)]
[Notices]
[Page 63924]
From the Federal Register Online via the Government Printing Office [www.gpo.gov]
[FR Doc No: 2011-26552]

=======================================================================
----------------------------------------------------------------------DEPARTMENT OF HEALTH AND HUMAN SERVICES
Administration on Aging

Agency Information Collection Activities; Proposed Collection;
Comment Request; the Evaluation of the Aging and Disability Resource
Center Program
AGENCY: Administration on Aging, HHS.
ACTION: Notice.
----------------------------------------------------------------------Page 167 of 170

60-Day Federal Register Notice

SUMMARY: The Administration on Aging (AoA) is announcing an opportunity for public comment on the
proposed collection of certain information by the agency. Under the Paperwork Reduction Act of 1995 (the
PRA), Federal agencies are required to publish notice in the Federal Register concerning each proposed
collection of information, including each proposed extension of an existing collection of information, and to
allow 60 days for public comment in response to the notice. This notice solicits comments on the information
collection requirements relating to the Evaluation of the Aging and Disability Resource Center Program.
DATES: Submit written or electronic comments on the collection of information by December 13, 2011.
ADDRESSES: Submit electronic comments on the collection of information to: Susan Jenkins at
Susan.Jenkins@aoa.hhs.gov. Submit written comments on the collection of information to
Administration on Aging, Washington, DC 20201, Attn. Susan Jenkins.
FOR FURTHER INFORMATION CONTACT: Susan Jenkins at 202.357.3591.
SUPPLEMENTARY INFORMATION: Under the PRA (44 U.S.C. 3501-3520), Federal agencies must obtain
approval from the Office of Management and Budget (OMB) for each collection of information they conduct or
sponsor. ``Collection of information'' is defined in 44 U.S.C. 3502(3) and 5 CFR 1320.3(c) and includes agency
request or requirements that members of the public submit reports, keep records, or provide information to a
third party. Section 3506(c)(2)(A) of the PRA (44 U.S.C. 3506(c)(2)(A)) requires Federal agencies to provide a
60-day notice in the Federal Register concerning each proposed collection of information, including each
proposed extension of an existing collection of information, before submitting the collection to OMB for
approval. To comply with this requirement, AoA is publishing notice of the proposed collection of information
set forth in this document. With respect to the following collection of information, AoA invites comments on:
(1) Whether the proposed collection of information is necessary for the proper performance of AoA's functions,
including whether the information will have practical utility; (2) the accuracy of AoA's estimate of the burden
of the proposed collection of information, including the validity of the methodology and assumptions used; (3)
ways to enhance the quality, utility, and clarity of the information to be collected; and (4) ways to minimize the
burden of the collection of information on respondents, including through the use of automated collection
techniques when appropriate, and other forms of information technology. The Aging and Disability Resource
Center (ADRC) Program is a collaborative effort of the Administration on Aging (AoA) and the Centers for
Medicare & Medicaid Services (CMS). ADRCs target services to the elderly and individuals with physical
disabilities, serious mental illness, and/or developmental/intellectual disabilities. The ultimate goal of the
ADRCs is to serve all individuals with long-term care needs regardless of their age or disability. The statutory
authority for the ADRC grant program is contained in Titles II and IV of the Older Americans Act (OAA) (42
U.S.C. 3032), as amended by the Older Americans Act Amendments of 2006, Public Law 109-365. (Catalog of
Federal Domestic Assistance 93.048, Title IV Discretionary Projects). 42 U.S.C. 3017 specifies that the
Assistant Secretary for Aging ``shall measure and evaluate the impact of all programs authorized by this
Page 168 of 170

60-Day Federal Register Notice
chapter “ Evaluations shall be conducted by persons not immediately involved in the administration of the
program or project evaluated.'' This new collection of information is necessary to determine the overall effect of
ADRCs on both long term support and service systems and individuals. AoA will gather information about how
ADRCs provide services and whether consumers, who access ADRCs, as compared to consumers who access
other systems, report that the experience is more personalized, consumer-friendly, streamlined, and efficient.
Staff of the Administration on Aging's Office of Program Innovation and Demonstration will use the
information to both determine the value of the ADRC model and to improve program operations. The
evaluation will include both process and outcome components. The Agency Data Collection Tool requests
respondents' names and contact information to allow the research team to contact potential respondents. The
Personal Experience Survey will collect information about consumers' level and type of disability, and
demographic characteristics including race and living status. Respondents will be asked to provide their
Medicare and/or Medicaid identification numbers to allow for analysis of the effect of the ADRC program on
heath care utilization and nursing home diversion. The proposed data collection tools may be found on the AoA
Web site: [INSERT WEB ADDRESS WHEN DETERMINED]. AoA estimates the burden of this collection at
1,732 hours for individuals and 1,294 hours for organizations--Total Burden for Study 3,026.
Dated: October 7, 2011.
Kathy Greenlee,
Assistant Secretary for Aging.
[FR Doc. 2011-26552 Filed 10-13-11; 8:45 am]
BILLING CODE 4154-01-P

Page 169 of 170

IRB Approval of the data collection tools

Attachment M: IRB APPROVAL OF THE DATA COLLECTION TOOLS

Page 170 of 170

File Type	application/pdf
File Title	ADRC Evaluation Data Collection Materials
Subject	Proposed ADRC evaluation data collection materials to accompany OMB PRA clearance request
Author	Susan Jenkins,Administration on Aging
File Modified	2012-05-11
File Created	2012-05-11