Attachment J_Definitions of Key Terms Used in Grantee Survey

Attachment J.

Definitions of Key Terms Used in the Grantee Survey

Definitions of Key Terms Used in the Grantee Survey

Terms	Definition
Medically underserved areas/populations 1,2,3	Medically underserved area/populations are defined as locations or federally designated population groups that have a shortage of health professionals or personal health services; these are often defined as places or groups that face economic, cultural, or linguistic barriers to health care, and limited access to services—for example, having too few primary care providers, high infant mortality, high poverty, and/or a large elderly population.
Geographically isolated4	Geographic isolation (i.e., rural communities, frontiers) refers to there being a limited number of clinic and hospital choices within an accessible radius, as well as a lack of secondary and tertiary facilities with more sophisticated treatment capabilities.
Economically vulnerable5,6	Economically vulnerable (also called “economically disadvantaged”) is defined as an individual from a family with an annual income below a level based on low-income thresholds, according to family size standards established by the U.S. Census Bureau. These thresholds are adjusted annually according to changes in the Consumer Price Index and by the Secretary of the U.S. Department of Health and Human Services.
Medically vulnerable7,8	Medically vulnerable includes the economically disadvantaged, the elderly, racial and ethnic minorities, the unemployed, uninsured and underinsured people, children of low-income families, LGBTQ and gender non-conforming people, people with HIV, people with severe mental and behavioral health disorders, the homeless, refugees, and many others. These groups are especially susceptible to poor health, chronic disease, disability, and early mortality.
Systems of care9	Systems of care, if effective, assure that families are partners in care; screening occurs early and continuously; families can easily use community-based services; children and youth have access to an accessible, family-centered, comprehensive medical home; there is adequate insurance and funding to cover services; and families and providers plan for transition to adult care and services or for services across the lifespan.
Quality of care10	Quality of care describes the level of health care received. High quality of care can be described as health care that is safe, effective, patient-centered, timely, efficient, and equitable to avoid injury, harmful delays, waste, and disparities.
Family navigation11,12	Family navigation is an innovative mechanism to improve care coordination and care integration for children who have or are at risk for autism spectrum disorders and other developmental disabilities (ASD/DD). It aims to perform time-limited case management focused on reducing patient-specific barriers (i.e., medical, community, and educational) to care in a complex system. Family navigators also coordinate services, assist with appointments, and facilitate communication among families and providers.
Telehealth13	Telehealth is defined as the use of electronic information and telecommunication technologies (such as videoconferencing, phone text, audioconferencing) to support long-distance clinical health care, patient and professional health, public health, and health administration.
Tele-education or e-learning14	Tele-education or e-learning is defined as the use of electronic information and telecommunication technologies (such as videoconferencing or audioconferencing) to support long-distance learning. Tele-education is a subset of telehealth.
Technical assistance15,16	Technical assistance (TA) is defined as support provided that can help overcome general and targeted obstacles to successfully meet goals or objectives. For example, TA may include developing, enhancing, implementing, and evaluating programs to promote positive outcomes.
Underserved children and youth with ASD/DD17	Underserved children and youth with ASD/DD is defined as group(s) of children and youth who have historically received few or no services to address ASD/DD. These children and youth and their families may receive fewer ASD/DD services, encounter barriers to accessing ASD/DD services, may lack familiarity with available ASD/DD services, and/or may encounter a shortage of trained ASD/DD providers.
Individualized technical assistance18	Individualized technical assistance is defined as capacity building that provides specific, need-based support to programs or organizations. This support might include training, professional development, coaching, and mentoring to promote success.
Peer technical assistance 19	Peer technical assistance is defined as the sharing of information between and among similar types of organizations to bridge gaps between research and practice, highlight promising practices, drive innovations, and foster strong peer-to-peer relationships.
Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities (ITAC) 20	ITAC is a center that provides technical assistance to interdisciplinary training programs (i.e., LEND and DBP) to better train professionals to utilize valid and reliable screening tools that diagnose or rule out and provide evidence-based interventions for children with ASD and other developmental disabilities.
Association of University Centers on Disabilities (AUCD)21	AUCD is a network of interdisciplinary centers advancing policy and practice for and with individuals who have developmental and other disabilities, their families, and communities. HRSA funds AUCD to support the Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities (ITAC) as part of the training efforts.
State Public Health Autism Resource Center (SPHARC)22	SPHARC is a comprehensive web-based resource center intended to provide ongoing technical assistance and facilitate cross-state learning to increase the capacity of states, particularly Title V programs, in developing and implementing systems of care for children and youth with autism spectrum disorders and other developmental disabilities (ASD/DD) through resource development, technical assistance and peer learning.
Association of Maternal and Child Health Programs (AMCHP)23	The Association of Maternal & Child Health Programs is a national resource, partner, and advocate for state public health leaders and others working to improve the health of women, children, youth, and families, including those with special health care needs. HRSA funds AMCHP to serve as a State Public Health Autism Resource Center (SPHARC) as part of the State Systems efforts.
Family to Family Health Information Center (F2F HIC)24	Family-to-Family Health Information Centers (F2F HICs) program provides information, technical assistance, and peer support to families of children and youth with special health care needs and the professionals who serve them.

References

1. Autism CARES Act of 2019, S. 427, 116 Cong., 1^st Session. (2019).

2. Health Resources & Services Administration. (2019). Innovation in Care Integration for Children and Youth with Autism Spectrum Disorders and Other Developmental Disabilities Program. Retrieved from https://www.hrsa.gov/grants/fundingopportunities/default.aspx?id=7e770aa8-93a7-4ff5-b515-7cb534d05021

3. Health Resources & Services Administration. (2019). What is a shortage designation? Retrieved from https://bhw.hrsa.gov/shortage-designation/what-is-shortage-designation

4. Rural Health Information Hub. (2019). Barriers to accessing care for rural people with disabilities. Retrieved from https://www.ruralhealthinfo.org/toolkits/disabilities/1/barriers

5. Health Resources & Services Administration. (October 2019). Shortage areas. Retrieved from https://data.hrsa.gov/topics/health-workforce/shortage-areas

6. Health Resources & Services Administration. (2019). Health workforce: Glossary. Retrieved from https://bhw.hrsa.gov/grants/resourcecenter/glossary

7. School of Nursing and Health Studies, University of Miami. (2019). Vulnerable populations and health disparities. Retrieved from https://www.sonhs.miami.edu/research/vulnerable-populations/index.html

8. Shi, L., & Stevens, G. D. (2005). Vulnerability and unmet health care needs: The influence of multiple risk factors. Journal of General Internal Medicine, 20(2), 148–154. doi:10.1111/j.1525-1497.2005.40136.x. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1490048/

9. Health Resources & Services Administration. (2019). Children with special health care needs. Retrieved from https://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs

10. Health Resources & Services Administration, Office of Epidemiology and Research, Division of Research. (n.d.). Strategic research definitions. Retrieved from https://mchb.hrsa.gov/research/strategic_definitions.asp

11. Health Resources & Services Administration. (2019). Innovations in Care Coordination for Children and Youth with Autism Spectrum Disorders and Other Developmental Disabilities Program. Retrieved from https://mchb.hrsa.gov/fundingopportunities/?id=d0554e57-62c8-4f70-85ff-56bf218cd241

12. Health Resources & Services Administration. (2019). Innovation in Care Integration for Children and Youth with Autism Spectrum Disorders and Other Developmental Disabilities Program. Retrieved from https://www.hrsa.gov/grants/fundingopportunities/default.aspx?id=7e770aa8-93a7-4ff5-b515-7cb534d05021

13. Health Resources & Services Administration. (2019). Telehealth programs. Retrieved from https://www.hrsa.gov/rural-health/telehealth/index.html

14. American Academy of Pediatrics. (2019). What is telehealth? Retrieved from https://www.aap.org/en-us/professional-resources/practice-transformation/telehealth/Pages/What-is-Telehealth.aspx

15. Centers for Disease Control and Prevention. (2015). ELR/electronic laboratory reporting: Technical assistance. Retrieved from https://www.cdc.gov/elr/technical-assistance.html

16. Centers for Medicare & Medicaid Services. (n.d.). Technical assistance: Medicaid managed care – Individualized technical assistance for states. Retrieved from https://www.medicaid.gov/medicaid/managed-care/technical-assistance/index.html

17. Centers for Medicaid & Medicare Services. (n.d.). Populations serving vulnerable and underserved populations. Retrieved from https://marketplace.cms.gov/technical-assistance-resources/training-materials/vulnerable-and-underserved-populations.pdf  

18. Dunst, C. J., Annas, K., Wilkie, K., & Hamby, D. W. (2019). Review of the effects of technical assistance on program, organization and system change. International Journal of Evaluation and Research in Education (IJERE), 8(2) 330–343. ISSN: 2252-8822, DOI: 10.11591/ijere.v8i2.17978

19. Administration for Children & Families. (n.d.). Welfare peer technical assistance network. Retrieved from https://peerta.acf.hhs.gov/sites/default/files/public/uploaded_files/Welfare%20Peer%20Technical%20Assistance%20Network%5B1%5D.pdf

19. Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities (ITAC). (n.d.). ITAC home. Retrieved from https://www.aucd.org/itac/template/index.cfm

20. Association of University Centers on Disabilities. (n.d.) About us. Retrieved from https://www.aucd.org/template/page.cfm?id=1

21. Association of Maternal & Child Health Programs. (n.d.). State public health autism resource center. Retrieved from http://www.amchp.org/programsandtopics/CYSHCN/projects/spharc/Pages/default.aspx

22. Association of Maternal & Child Health Programs. (n.d.). About AMCHP. Retrieved from http://www.amchp.org/AboutAMCHP/Pages/default.aspx

23. Health Resources & Services Administration. (2018). Expansion of the Family-to-Family Health Information Centers. Retrieved from https://mchb.hrsa.gov/fundingopportunities/?id=642c8b40-933e-44ec-9991-c021a719080a