Supporting Statement A V2

Supporting Statement A

Family-to-Family Health Information Center Feedback Surveys

New- OMB Control No. 0906-XXXX

Terms of Clearance: None

A. Justification

1. Circumstances Making the Collection of Information Necessary

The Health Resources and Services Administration (HRSA) requests Office of Management and Budget (OMB) approval for a new information collection request for Family-to-Family Health Information Center (F2F HIC) Feedback Surveys.

HRSA is the primary Federal agency for improving access to health care by strengthening the health care workforce, building healthy communities, and achieving health equity. The mission of HRSA’s Maternal and Child Health Bureau (MCHB) is to improve the health of American’s mothers, children and families. MCHB achieves this mission by providing national leadership, in partnership with key stakeholders, to reduce disparities, assure availability of quality care, and strengthen the nation’s maternal and child health (MCH)/public health infrastructure in order to improve the physical and mental health, safety and well-being of the MCH population. MCHB service grants have provided a foundation for ensuring the health of our nation’s mothers and children. In particular, MCHB manages the F2F HIC program, which funds grants to organizations that provide information, education, technical assistance, and peer support to families of children and youth with special health care needs (CYSHCN) and professionals who serve such families.

The F2F HIC program is authorized under the Social Security Act, Title V, § 501(c), (42 U.S.C. 701(c)), as amended by the as amended by § 216 of the Medicare Access and Children’s Health Insurance Program (CHIP) Reauthorization Act of 2015 (P.L. 114-10), and § 50501 of the Bipartisan Budget Act of 2018 (P.L. 115-123). The goal of the program is to promote optimal health for CYSHCN by facilitating their access to an effective health delivery system and by meeting the health information and support needs of families of CYSHCN and the professionals who serve them. For FY 2018, and as specified in the authorizing statute, the F2F HIC program supports centers in each of the 50 United States and the District of Columbia, each of the five Territories (American Samoa, Guam, Puerto Rico, Northern Mariana Islands and U.S. Virgin Islands), and for American Indian Tribes to:

1. Assist families of CYSHCN to make informed choices about health care in order to promote good treatment decisions, cost effectiveness and improved health outcomes;

2. Provide information regarding the health care needs of and resources available for CYSHCN;

3. Identify successful health delivery models;

4. Develop with representatives of health care providers, managed care organizations, health care purchasers, and appropriate State agencies, a model for collaboration between families of CYSHCN and health professionals;

5. Provide training and guidance regarding the care of CYSHCN;

6. Conduct outreach activities to families, health professionals, schools and other appropriate entities; and

7. Be staffed by such families who have expertise in Federal and State public and private health care systems, and by health professionals.

F2F HICs are staffed by families of CYSHCN who have first-hand knowledge using health care services and programs. With this experience, these staff are uniquely positioned to provide support to other CYSHCN families and help other families like theirs navigate a complex and confusing health care and social service system. They also serve as mentors and a reliable source of health care information.

From FY 2003 – 2017, HRSA’s MCHB awarded approximately $4.9 million per fiscal year (FY) in grants to support 51 F2F HICs in each of the 50 United States and the District of Columbia. In reporting year 2016 – 2017, 49 centers that reported data served and trained over 184,000 families and approximately 85,500 health professionals.¹ For FYs 2018 and 2019, HRSA MCHB will award approximately $6 million per FY to support 59 F2F HICs: One each in the 50 United States and the District of Columbia, one each in the five Territories, and up to three to serve American Indians/Alaska Natives.

2. Purpose and Use of Information Collection

HRSA is requesting approval for F2F HIC grant recipients to conduct feedback surveys with families and professionals served. The purpose of the surveys is to measure the impact of the work of the F2F HIC grantees. These surveys are designed to determine the extent to which F2F HICs provide service to families of CYSHCN and professionals who serve such families. Each F2F HIC will administer the surveys and report the data to HRSA. Survey respondents will be asked to answer questions about how useful they found the information, assistance, or resources received from the F2F HICs. The surveys will evaluate the impact in three areas: (1) families who receive one-to-one service, (2) professionals who receive one-to-one service, and (3) individuals who attend trainings. Individually, the three different surveys allow HRSA to exclusively evaluate the components that make up the primary functions of the F2F HIC. Trainings provided by the F2F HIC are tailored for the intended audience(s). The individual surveys take into consideration these variances and as a result, the data collected is more streamlined and confined to the type of service provided. Collectively, the surveys provide a thorough evaluation of how well F2F HICs are achieving the Congressional requirements that govern the grant. They surveys also provides both qualitative and quantitative illustrations of the program across all functions and help demonstrate national impact.

Data from the surveys will support the HHS Secretary's priorities of engagement and performance and will provide mechanisms to capture consistent, performance data from F2F HIC grant recipients. The data will also allow F2F HICs to evaluate the impact of their

interventions and improve services provided to families and the professionals who serve CYSHCN.

The information collected will also help HRSA demonstrate the reach of the F2F HIC program and respond to requests from Congress related to the F2F HIC program and program data. Not collecting this information would affect HRSA’s ability to monitor the program and appropriately respond to Congressional and other stakeholder requests related to the program’s effectiveness, including providing data to support measures cited in HHS budget/Congressional justification reports.

This data collection effort builds upon a previous customer satisfaction protocol that HRSA had approved under its customer satisfaction survey generic clearance (OMB No. 0915-0212). The previous protocol expired in August 31, 2012. The decision was made to seek OMB approval for a new non-generic information collection request as there is interest in sharing the information gathered outside of the agency.

3. Use of Improved Information Technology/Burden Reduction

This request includes plans to capitalize on the use of technology to improve collection of this information. Up to 100% of information collected through the F2F HIC feedback surveys can be automated. Over time, technology has facilitated F2F HICs in communicating with clients through a variety of methods such as electronic surveys, email, text messaging, and social media. F2F HICs will be encouraged to use technology-based methods to gather feedback.

Families and professionals who receive service on a one-to-one basis (e.g., in-person, over the phone, and /or via social media) and training² from the F2F HICs will be randomly selected and contacted to answer questions (approximately 9 minutes). Specifically, feedback will be gathered on how well the F2F HIC met their needs, the utility of service and information received, and whether the center is a reliable resource that is worth sharing with other families and professionals.

Current F2F HIC grant recipients have databases that contain client contact information and list the type of assistance provided. For purposes of the feedback surveys, F2F HICs will be asked to use their respective data systems to identify the following individuals:

1. Total number of families served on a one-to-one basis;

2. Total number of professionals served on a one-to-one basis; and

3. Total number of families and professionals trained.

Each F2F HIC will then survey a randomly selected sample of families and professionals. See Supporting Statement B for more information.

Efforts to Identify Duplication and Use of Similar Information

Several measures were taken to minimize duplication and use of similar information, to include the following:

• Literature reviews;

• Database searches;

• Attendance at national stakeholder meetings (e.g., Family Voices, Inc. and Association of Maternal and Child Health Programs national meetings); and

• Consultation with other federal agencies and programs to include the Statewide Family Network program (funded by HHS Substance Abuse and Mental Health Services Administration [SAMHSA]) and the Parent Training Information Center program (funded by the U.S. Department of Education, Office of Special Education Programs).

After conducting these activities, it was determined that information to be collected through the F2F HIC feedback surveys is not duplicative of or available from other sources. The proposed surveys request information that is unique to clients who receive health information, mentoring, and support from F2F HICs.

4. Impact on Small Businesses or Other Small Entities

The information collected will not have a significant impact on small entities. Surveying should take place throughout the course of the grant year and families/professionals are to be selected randomly to be surveyed. These survey results will be submitted to HRSA annually. As outlined in the “Grant Recipient Instructions” no person or business is to be surveyed more than once. Grant recipients are encouraged to contact families and professionals within one month of the service date. It is the responsibility of the grantee to ensure that there is no duplication in surveying families and/or professionals. Additionally, a screener question is included in the training survey in an effort to avoid duplication. For pediatric medical providers, burden will be kept to a minimum by ensuring no single provider is surveyed more than once per year. In addition, providers will be given the option to submit electronic feedback, at their convenience.

5. Consequences of Collecting the Information Less Frequently

Collecting this information less frequently would limit HRSA’s ability to assess program performance and appropriately respond to Congressional and other stakeholder inquiries related to program effectiveness, the annual OMB budget justification, and performance (e.g., GPRA) reporting.

There are no legal obstacles to reduce the burden.

6. Special Circumstances Relating to the Guidelines of 5 CFR 1320.5

The request fully complies with the regulation.

7. Comments in Response to the Federal Register Notice/Outside Consultation

Section 8A:

A 60-day Federal Register Notice was published in the Federal Register on February 21, 2018, Vol. 83, No. 35; pp. 7482-7483. Public comments are provided and responses to comments are provided as attachments to this supporting statement.

Section 8B:

Throughout the course of working with the F2F HICs, HRSA received feedback from grant recipients regarding the survey methodology, feasibility of collecting data elements, and challenges with collecting data via telephone and random emails. In addition, from January 2015 – July 2017, HRSA consulted with F2F HICs who will report the feedback data and federal and non-federal staff to inform the methodology and development of the survey.

Tami Allen

Families Together, Inc.

1518 Taylor Plaza - Garden City, KS 67846-4055

(620) 276-6364; tami@familiestogetherinc.org

Diana Autin

Statewide Parent Advocacy Network (SPAN) of NJ

35 Halsey Street

Newark, NJ 07102

(973) 642-8100, Ext. 105; Diana.autin@spanadvocacy.org

Beverly Baker

Family Voices, Inc.

PO Box 18

Lincolnville, ME 04849

(207) 458-1009; BBaker@familyvoices.org

Alma Ellis

University of Southern Mississippi, Institute for Disability Studies

3825 Ridgewood Road, Room 721

Jackson, MS 39211

(601) 432-6975; aellis@ihl.state.ms.us

Debi Gilbert

Health and Family Services, Kentucky Cabinet for CSHCN

310 Whittington Parkway

Louisville, KY 40222

(502) 429-4430 Ext. 2069; DebbieA.Gilbert@ky.gov

Sondra Gilbert

Health and Family Services, Kentucky Cabinet for CSHCN

310 Whittington Parkway

Louisville, KY 40222

(270) 687-7038 ext.2123; Sondra.Gilbert@ky.gov

Pip Marks

Support for Families of Children with Disabilities

1663 Mission St. 7th floor

San Francisco, CA 94103

(415) 282-7494; pmarks@familyvoicesofca.org

Michael McCarthy

Children’s Hospital of Ohio

MailStop Code: MLC4002, Division Line: DDBP UC UCEDD
3333 Burnet Ave
Cincinnati, OH 45229

(513) 803-3620; mccarml@ucmail.uc.edu

Jeanne McMahon

SPAN of NJ

35 Halsey Street

Newark, NJ 07102

(973) 642-8100; jmcmahon@spanadvocacy.org

Susan Murdock

Virginia Commonwealth University, Partnership for People with Disabilities

700 E. Franklin Street, 1st Floor

Richmond, VA 23219

(804) 828-0352; murdocksj@vcu.edu

Nithya Narayan

Children’s Hospital of Ohio

Mail Stop Code: MLC4002, Division Line: DDBP UC UCEDD

3333 Burnet Ave

Cincinnati, OH 45229

513-803-3846; Nithya.narayan@cchmc.org

Fanny Ochoa

SPAN of NJ

35 Halsey Street

Newark, NJ 07102

(973) 642-8100; fochoa@spanadvocacy.org

Ilka Riddle

Children’s Hospital of Ohio

Mail Stop Code: MLC4002, Division Line: DDBP UC UCEDD
3333 Burnet Ave
Cincinnati, OH 45229

(513) 803-3620; ilka.riddle@cchmc.org

Carmen Sanchez

U.S. Department of Education, Office of Special Education and Rehabilitation Programs

550 12th St. SW

Washington, DC 20202

(202) 245-6595; Carmen.Sanchez@ed.gov

LaShawn Smith

University of Southern Mississippi, Institute for Disability Studies

3825 Ridgewood Road, Room 721

Jackson, MS 39211

(601) 432-6975; ksmith@ihl.state.ms.us

Elizabeth Sweet

HHS, SAMHSA, Center for Mental Health

Services

5600 Fishers Lane, Room 14-N10C

Rockville, MD 20857

(240) 276-1925; Elizabeth.Sweet@samhsa.hhs.gov

Laura Warren

Texas Parent to Parent

3710 Cedar Street, Box 12

Austin, TX 78705-1449

(512) 458-8600; Laura@txp2p.org

Nora Wells

Family Voices, Inc.

3701 San Mateo Blvd. NE Suite 103

Albuquerque, NM 87110

(781) 879-6209; NWells@familyvoices.org

Dana Yarbrough

Virginia Commonwealth University, Partnership for People with Disabilities

700 E. Franklin Street, 1st Floor

Richmond, VA 23219

(804) 828-0352; dvyarbrough@vcu.edu

8. Explanation of any Payment/Gift to Respondents

HRSA will not utilize incentives for this project.

9. Assurance of Confidentiality Provided to Respondents

Personal, identifiable information will not be reported to the federal government. Each survey instrument includes the following introductory statement: “Data from this survey will be kept private to the extent allowed by law.”

10. Justification for Sensitive Questions

No sensitive information is being requested within the proposed instruments. F2F HICs collect race and ethnicity data from respondents at the time of service, prior to the request for feedback. Therefore, collecting race and ethnicity data would be duplicative and pose additional burden to the F2F HICs.

12. Estimates of Annualized Hour and Cost Burden

On average, F2F HICs collectively provide one-to one service to approximately 96,000 families of CYSHCN and approximately 35,000 health professionals each year.³ In addition, they collectively train approximately 121,000 families and professionals each year. Approximately 1,147 survey responses will be obtained (383 from families who received one-to-one services, 381 from professionals who received one-to-one services, and 383 from families and/or professionals who received training) per year. ⁴ The Table at 12A provides a summary of estimated burden. Burden hours are shown as the number of minutes over 60. F2F HICs are estimated to serve an additional 5% of individuals each year.

12A – Estimated Annualized Burden Hours

Burden Estimate:

Type of Respondent	Form Name	No. of Respondents	No. Responses per Respondent	Total Responses	Average Burden per Response (in hours)	Total Burden Hours
What F2F HIC Grant Recipients	F2F HIC Data Submission	59	1	59	89	5,251
Survey Respondents	F2F HIC Feedback Surveys	1,147	1	1,147	.15	172.05
Total		1,206	--	1,206	--	5,423.05

Burden estimates were derived from a pilot test conducted with eight, current F2F HICs.

The estimated number of burden hours derived from the pilot group was averaged by eight to determine the average burden per response (in hours).

Based on the pilot activity data, the burden on F2F HIC grant recipients ranged from 37.29 -206.08 hours per year, and the burden on survey respondents ranged from .04 – 0.33 hours. From this data, the approximate burden for respondents to complete the survey is an average of 9 minutes (0.15 hours), or an annual burden of 172.05 hours for 1,147 respondents. It is anticipated that each of 59 F2F HICs will require an average of 89 hours per year (5,251 hours total) to conduct any language translations, administer the survey, conduct follow-up survey actions due to non-response, input data, and submit final data. The combined burden for F2F HICs and survey respondents totals 5,423.05 hours per year.

12B – Estimated Annualized Burden Costs

Estimated Annualized Burden Costs:

Health professionals who may respond to the F2F HIC feedback surveys include pediatricians, nurse practitioners, registered nurses, social workers, early intervention therapists/specialists, occupational therapists, physical therapists, speech language pathologists and audiologists.⁵ The average hourly wage rate for these health professionals is $41.37. Approximately 523 health professionals (381 served one-to-one and 142 trained) are expected to respond to the survey each year. Completing the feedback survey will require approximately nine minutes (0.15 hours) per respondent. Therefore, the expected burden for health professionals is 57 hours per year. This burden is captured in the total provided in section 12A of this statement.

Type of Respondent	Total Burden Hours	Hourly Wage Rate	Total Respondent Costs
Health Professionals	78.45	$41.37	$ 3,245.48

13. Estimates of other Total Annual Cost Burden to Respondents or Record-keepers/Capital Costs

Other than their time, there is no cost to respondents.

13. Annualized Cost to Federal Government

The average annual costs to the government for implementing the F2F HIC feedback survey are as follows:

Federal Employee Costs:

The cost is estimated to include approximately 10 percent of one GS-13 project officer’s time; 5 percent of four additional (GS-13 and GS-12) project officers’ time. The total estimate is $47,700.

Staff function	GS-Level/Base Pay Rate	Overhead costs charged per FTE	Total Base Pay and overhead costs	Project Time per FTE	Number of FTEs	Total Annual Cost
F2F HIC Program Lead	GS-13/$145,000	$27,000	$172,000	10%	1	$17,200
F2F HIC Project Officer	GS-13/$135,000	$27,000	$162,000	5%	1	$8,100
F2F HIC Project Officer	GS-13/$125,000	$27,000	$152,000	5%	1	$7,600
F2F HIC Project Officer	GS-13/$123,000	$27,000	$150,000	5%	1	$7,500
F2F HIC Project Officer	GS-12/$119,000	$27,000	$146,000	5%	1	$7,300
Total						$47,700

Cooperative Agreement costs:

HRSA funds one cooperative agreement for the National Center for Family/Professional Partnerships Program. As a term of this cooperative agreement, the recipient provides leadership, in collaboration with HRSA, in data collection; analysis of evidence-based data; review of impact and quality improvement data; and monitoring of relevant Healthy People 2020 data and other data trends. The total cooperative agreement award is $600,000 per year. Each year, approximately 3.5% (or $21,000) of the HRSA award is dedicated to supporting data collection, which will be used to provide technical assistance to F2F HIC recipients around the new feedback survey.

It is estimated that the total annual cost to the Federal government is $52,578 ($21,000 + $31,578).

13. Explanation for Program Changes or Adjustments

This is a new information collection

13. Plans for Tabulation, Publication, and Project Time Schedule

Information from the F2F HIC feedback surveys will be used to support responses to Congressional and other stakeholder inquiries related to program effectiveness, the annual OMB budget justification, and performance (e.g., GPRA) reporting. Aggregated data may be published on the HRSA website and the MCHB Discretionary Grant Information System at https://mchb.hrsa.gov.

This request is for recurring data collection, for a period of three (3) years from June 1, 2019 through May 31, 2022.

13. Reason(s) Display of OMB Expiration Date is Inappropriate

No exemption is being requested. The OMB number and expiration date will be displayed on every page of every form/instrument.

13. Exceptions to Certification for Paperwork Reduction Act Submissions

There are no exceptions to the certification.

1 Data sources are the MCHB Discretionary Grants Information System (OMB control number 0915-0298) and the Family Voices, Inc. data collection system.

2 For the purposes of this survey, training events are those that are hosted/co-hosted by the F2F HIC with identified learning objectives.

3 This total does not include baseline data for the five Territories and three Tribal F2F HICs, which is to be determined.

4 These estimates represent a sampling of the average number of families and professionals served/trained, using a 95% confidence interval and 5% margin of error.

5 Wage rates were calculated based on the mean hourly wage rates for the primary care and specialty provider types that are supported by the F2F HIC program, as indicated on the U.S. Department of Labor website (http://www.bls.gov/bls/blswage.htm). Wages are as follows: pediatricians ($88.58/hour), nurse practitioners ($50.30/hour), registered nurses ($34.70/hour), social workers ($22.70/hour), early intervention/therapists ($18.13/hour), occupational therapists ($40.25/hour), physical therapists ($41.93/hour), speech language pathologists ($37.60/hour) and audiologists ($38.12/hour).

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