Supporting Statement B Final

Supporting Statement B

Family-to-Family Health Information Center Feedback Surveys

OMB Control No. 0906-0040

Extension

2. Collection of Information Employing Statistical Methods

The Health Resources and Services Administration will require each of the 59 Family-to-Family Health Information Centers (F2F HIC) to randomly select families and professionals who have received one-to-one service or training from their center and ask them to respond to one of three survey instruments. The three separate surveys (see Appendix A) are for (1) families who receive one-to-one service, (2) professionals who receive one-to-one service, and (3) individuals who attend trainings. Survey responses may be collected in-person or via telephone, e-mail, text message, social media, or other technology-based platform. Under randomized sampling, the F2F HICs will not influence the survey findings by collecting feedback from regular, satisfied customers. The method should be consistent and the centers should use the same system every year to identify a random sample of individuals to be surveyed. Responses from the same family or professional should not exceed more than once a year.

1. Respondent Universe and Sampling Methods

The respondent universe includes families and professionals of Children and Youth with Special Health Care Needs (CYSHCN) as well as training participants. Separate surveys have been developed for each type of respondent (i.e., family, professional, or training participant). The first question in each survey is considered a screener question. The survey instruments are provided in Appendix A. Answers from the feedback surveys can be logged in a spreadsheet or form similar to the Sample F2F HIC Survey Data Log found in Appendix B. Responses to the survey questions range from “strongly agree” to “strongly disagree,” and have a corresponding numeric value.

2. Procedures for the Collection of Information

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 training 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.

F2F HICs are encouraged to use the most cost-effective and practical means for contacting individuals. Training participants can add survey data questions to an existing post-training evaluation form. When conducting follow-up phone calls, in particular, the evaluator should follow the script provided on the “F2F HIC Feedback Survey Script” (see Appendix C).

The evaluator should read the question, and follow up each question with the response options provided (i.e., 1 if you strongly disagree, 2 if you disagree, etc.).

Volunteers or student interns can administer surveys, if practical. Some F2F HICs have part-time evaluators and thus, it is up to the organization to select the most appropriate approach. HRSA requires all F2F HIC grant recipients to submit the feedback survey data annually to the HRSA-funded Leadership in Family Professional Partnerships (LFPP). The LFPP will clean, aggregate, and report the data to HRSA.

Each year, HRSA will determine and provide the number of survey responses the F2F HICs must submit. HRSA has chosen to use a sample of families and professionals served/trained by all F2F HICs. This sample size is calculated using the total number of families and professionals served/trained for all F2F HICs in the previous reporting year (totals from data provided in the EHB). The sample size is calculated with a 95% confidence level and 5% margin of error. Below is a sample calculation using 2019-2020 actual data.

Sample calculations based on 2019-2020 data:

Total sample Surveys

Total served by needed to achieve required for

Survey Type All F2F HICs (N) 95% confidence (n) each F2F HIC

Families (one-to-one) 207,530 384 6

Professionals (one-to-one) 97,655 383 6

Training Participants 305,185 384 6

Total Surveys Required for each F2F HIC = 18

3. Methods to Maximize Response Rates and Deal with Nonresponse

F2F HICs may provide incentives to survey respondents in the form of payments, gifts or family support stipends utilizing program funds. Payments or gifts are not to exceed $25 per respondent.

3. Tests of Procedures or Methods to be Undertaken

F2F HICs will be encouraged to use technology-based methods to gather feedback.

Majority of F2F HICs have a system in place to record and track services provided to families on a monthly basis. The idea is to build upon the preexisting data collection system. Those that do not have an electronic system to collect survey data can use a paper log to record calls from families each month.

5. Individuals Consulted on Statistical Aspects and Individuals Collecting and/or Analyzing Data

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.

The following are individuals who provided consultation on the statistical aspect of the design and or involved in data collection and analysis of the survey.

Tami Allen

Families Together, Inc.

1518 Taylor Plaza - Garden City, KS 67846-4055

(620) 276-6364; [email protected]

Diana Autin

Statewide Parent Advocacy Network (SPAN) of NJ

35 Halsey Street

Newark, NJ 07102

(973) 642-8100, Ext. 105; [email protected]

Beverly Baker

Family Voices, Inc.

PO Box 18

Lincolnville, ME 04849

(207) 458-1009; [email protected]

Alma Ellis

University of Southern Mississippi, Institute for Disability Studies

3825 Ridgewood Road, Room 721

Jackson, MS 39211

(601) 432-6975; [email protected]

Debi Gilbert

Health and Family Services, Kentucky Cabinet for CSHCN

310 Whittington Parkway

Louisville, KY 40222

(502) 429-4430 Ext. 2069; [email protected]

Sondra Gilbert

Health and Family Services, Kentucky Cabinet for CSHCN

310 Whittington Parkway

Louisville, KY 40222

(270) 687-7038 ext.2123; [email protected]

Pip Marks

Support for Families of Children with Disabilities

1663 Mission St. 7th floor

San Francisco, CA 94103

(415) 282-7494; [email protected]

Michael McCarthy

Children’s Hospital of Ohio

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

(513) 803-3620; [email protected]

Jeanne McMahon

SPAN of NJ

35 Halsey Street

Newark, NJ 07102

(973) 642-8100; [email protected]

Susan Murdock

Virginia Commonwealth University, Partnership for People with Disabilities

700 E. Franklin Street, 1st Floor

Richmond, VA 23219

(804) 828-0352; [email protected]

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; [email protected]

Fanny Ochoa

SPAN of NJ

35 Halsey Street

Newark, NJ 07102

(973) 642-8100; [email protected]

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; [email protected]

Carmen Sanchez

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

550 12th St. SW

Washington, DC 20202

(202) 245-6595; [email protected]

LaShawn Smith

University of Southern Mississippi, Institute for Disability Studies

3825 Ridgewood Road, Room 721

Jackson, MS 39211

(601) 432-6975; [email protected]

Elizabeth Sweet

HHS, SAMHSA, Center for Mental Health

Services

5600 Fishers Lane, Room 14-N10C

Rockville, MD 20857

(240) 276-1925; [email protected]

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