1. Maternal and Child Health Bureau “Partnering to Sustain the System of Care Across the Life Span” From Pediatrics to Geriatrics Family-To-Family Health Information Centers Diana Denboba, Branch Chief U.S. Department of Health and Human Services (HHS) Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB) Division of Services for Children with Special Health Needs (DSCSHN)

2. Maternal and Child Health Bureau Purpose of the Call To better ensure a continuum of care in communities across the life span of people with special health care needs and disabilities. What is our common agenda To maximize resources and information sharing between state programs funded by collaborating federal agencies.

3. Maternal and Child Health Bureau Purpose of the Call To learn more about F2F HICs, their networks and services and how the ADRCs can partner with them. To look at the benefits of collaboration: what the ADRCs and the F2F HICs can do to help each other.

4. Maternal and Child Health Bureau Who We Are! The mission of the MCHB is to: provide national leadership in partnership with key stakeholders, reduce disparities, assure the availability of quality care, and strengthen the nation’s Maternal and Child Health (MCH) infrastructure in order to improve the physical and mental health, safety, and well-being of the MCH population – all women, infants, children, adolescents and their families, including fathers and CSHCN. The Bureau will be providing these services within the context of the life course/life span, social determinants and health equity

5. Maternal and Child Health Bureau Who We Are! CSHCN are defined as “those children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” Youth/young adults are included

6. Maternal and Child Health Bureau What Are the F2F HICs? FOA/ACA funded Assist families of CSHCN to make informed health choices Provide information on the health care needs of and resources available Identify successful health delivery models Develop a model for collaboration between families of CSHCN and health professionals Provide training and guidance regarding the care of CSHCN Conduct outreach activities to families health professionals, schools and others Staffed by trained family leaders and professionals

7. Maternal and Child Health Bureau Click here to continue What Is A Community System? Source: Champions for Progress National Center/EIRI

8. Maternal and Child Health Bureau Why Partner With F2F HICs? Provide training, materials on: –Medical Home –Family/Patient Centered Care & Family/Professional Partnerships –Cultural/Linguistic Competence and Health Literacy –Community Engagement –Care Coordination –Special Needs Increased partnerships across the lifespan –Parent leaders and advocates –Providers, state and local agencies –Stronger alliances/connections/resources between community based approaches

9. Maternal and Child Health Bureau Why Partner With ADRCs? Commonalities Seamless system from consumer perspective –No Wrong Door/ACA Integration of/coordination across systems Task Forces, coalitions, planning groups for individuals with disabilities/special needs Web based tools Decision and options support Long term sustainability

10. Maternal and Child Health Bureau Family TIES of Nevada & Rebuilding All Goals Efficiently (RAGE) Family TIES of Nevada is the Statewide Family to Family Health Information Center RAGE is the Southern Nevada Aging and Disability Resource Center

11. Maternal and Child Health Bureau Nevada Example Family TIES of Nevada Services  Information, Support and Assistance  Training for Families and Professionals  Community Outreach and Education RAGE Services (a non- exhaustive listing)  One point of service/resources  Independent Living - Home & Vehicle Modification and Assistive Technology  Peer Mentoring  Low Income Subsidy Benefits & Counseling

12. Maternal and Child Health Bureau F2F: Family TIES of Nevada ADRC: Rebuilding All Goals Efficiently Referral from the Family-to-Family Health Information Center (Family TIES of Nevada) The F2F responds to a request for assistance and the Family Coordinator does an assessment of the family’s and/or individual’s needs. The Family Coordinator identifies a range of community services to help meet their health and wellness needs and offers emotional support. Referrals are made to various public and private agencies to help the family and/or individual navigate their way through the system of care. The Family Coordinator makes a determination that a referral to the ADRC is necessary due to the individual’s age. The Family Coordinator sends a completed Referral Form to the ADRC to begin the official Referral Process. The Family Coordinator follows-up by phone immediately to ensure that the Referral is received.

13. Maternal and Child Health Bureau F2F: Family TIES of Nevada ADRC: Rebuilding All Goals Efficiently Referral to the Aging and Disability Resource Center (RAGE) F2F’s referral goes through our intake/assessment process to identify specific consumer needs Once the consumer’s needs are indentified, the consumer will be scheduled with a coordinator who will evaluate the identified needs in conjunction with their eligibility for services The service-appropriate application(s) will be completed and/or submitted on client’s behalf pending receipt of required backup documentation for processing/approval 3 and 6 month follow-up after the client’s primary need(s) has been addressed and services are established with the specific services provider. The ADRC client’s case file does not close out after services are provided as the client’s needs may change during the course of the 3 and 6 month follow-up. The open case file status prevents delays in additional services delivery that could be premised on procedural filing requirements under the programs or services used to supply and address the client’s needs.

14. Maternal and Child Health Bureau Technical Assistance National Center for Family/Professional Partnerships (NCFPP) provides leadership in helping families and professionals partner together in decision-making by: –Providing field based technical assistance to support a Community of Family Leaders: Family-to-Family Health Information Centers (F2F HICs), Family Voices State Affiliate Organizations (SAOs) and other family leaders in the states;field based technical assistance Family-to-Family Health Information Centers (F2F HICs)Family Voices State Affiliate Organizations (SAOs) –Partnering with National Centers and other key stakeholders with whom we work to improve family/professional partnership opportunities; andNational Centers and other key stakeholders –Documenting the support F2F HICs provide to families and professionals in every statesupport

15. Maternal and Child Health Bureau NCFPP Website/Video http://www.fv-ncfpp.org/

16. Maternal and Child Health Bureau To locate additional helpful resources and materials, we invite you to: Visit these project websites YOUTH KASA: Kids As Self Advocates http://www.fvkasa.org http://www.fvkasa.org Health and Wellness Project IMPACT http://www.familyvoices.org/projects?id=0001 (includes Bright Futures for Families http://www.brightfuturesforfamilies.org/home.shtml ) http://www.familyvoices.org/projects?id=0001 http://www.brightfuturesforfamilies.org/home.shtml Sign up for Family Voices’ three free on line newsletters to help keep you informed about issues important to you http://www.familyvoices.org/action/keep_informedhttp://www.familyvoices.org/action/keep_informed Friday’s Child Bright Futures Family Matters KASA E-News

17. Maternal and Child Health Bureau Resources, continued F2F pamphlet http://www.fv-ncfpp.org/files/2013/1194/2003/F2FBrochure.pdf F2F Funding Opportunity Announcement for FY12 https://grants.hrsa.gov/webExternal/SFO.asp?ID=5E049722- 39C8-4834-8C6E-6F59E4851921 Data Resource Center – National Survey of Children with Special Health Care Needs http://www.childhealthdata.org/learn/NS-CSHCN

18. Maternal and Child Health Bureau Contacts MCHB: –Diana Denboba, (301) 443-9332 –LaQuanta Smalley, (301) 443-2372 –Sylvia Sosa, (301) 443-2259 NCFPP: –Nora Wells, (781) 674-7207 –Karen Anzola, (704) 947-5437 –Trish Thomas, (505) 872-4774 –Peggy Curran, (781) 592-3935