Sharing the Care

1. Sharing the Care September 23, 2009 Rockford, Illinois The Arc of Boone, Ogle and Winnebago Counties

2. The Arc of Illinois Family to Family Health Information and Education Center • We are here to help you! • Serving families of children and youth with special health care needs • Entire state of Illinois • Up to age 21

3. Who are CYSHCN? • A federal definition • Children/youth up to age 21 • Any disability • Any chronic illness

4. What is the definition of Children and Youth with Special Health Care Needs? The American Academy of Pediatrics defines "children with special health care needs" as those children who have, or are at an increased risk for having, a chronic physical, developmental, behavioral, or emotional condition and who also requires health and related services of a type or amount beyond that required by children generally. Pediatrics, July 98;102 (1 Pt 1):117-123).

5. What is F2F HIC? • Funded by federal government • Part of Family Opportunity Act • Health Services and Resources Administration, Maternal and Child Health Bureau (HRSA MCHB) • F2F HICs now in all 50 states • Funded through May 2010

6. Why is there a Family to Family Health Information & Education Center in Illinois? • To enable and support families raising their children with special needs to live successfully at home in their own communities. • This concept comes from the President’s New Freedom Initiative. • We are part of the Social Security Act & the Family Opportunity Act

7. What are families asking us? • How can I get health insurance for my child? • How can my child receive respite care? • What’s a waiver and does my child need one? • What are my options if my health insurance denies claims for my child?

8. Feedback from families about F2F • Thank you so much for the information you have given me. You will never know how much this means to me to know there is someone out there that cares. May God bless you and keep up the good work. Once again THANKS. Thank goodness for the F2F resource center. It helped me with the information I needed to help my daughter."

9. More family feedback • "I find the F2F a very useful resource, especially the knowledgeable Faye. She is my "go to" person because of all her knowledge and understanding.“ • Faye, thanks so much for the resources. I will share them…. • I am very grateful to have you as a colleague and fellow helping professional.

10. Who are CYSHCN in Illinois? • How many children in Illinois have special health care needs? • 44,997 children under 18 received SSI as of 12/07 • 23,418 children were served by DSCC in 2007 • 18,467 children with IFSPs received Early Intervention services as of June 2008. • 326,539 children had IEPs during the 2006-7 school year • 451,776 or 13.9% of all children in Illinois have special health care needs, according to the 2005/06 SLAITS survey

11. CYSHCN on waivers in IL • 1,912 children participated in child-specific Home and Community-Based 1915(c) Medicaid waivers: • 637 were enrolled in the waiver for children who are medically fragile and technology dependent (Waiver year 2006) • 1,100 children were enrolled in a new waiver for children with developmental disabilities (waiver year 2008) • 175 children participated in the Children’s Residential Waiver for children with DD (waiver year 2008):

12. What “Sharing the Care” means • Readily available • Community-level • Family-centered • Statewide • Resources and supports • Ideas and options

13. Support Pyramid • Most children = lowest cost supports • Fewest children= highest cost • Generic vs. specialized • Based on MCH Pyramid • Focus on inclusive, natural supports common to all children

14. Inclusion in life • What works for your family • A balancing act • You can do it too! • Ask questions • Change is part of life

15. Our partners today • The Arc of Boone, Winnebago and Ogle Counties • The Arc of Illinois • Illinois Life Span Project

16. Today’s topics • Stress reduction • Child care • Microboards and cooperatives • Respite options • Recreation and leisure

17. Your child has options • Look in your community • Partner to make it work • Value volunteers • Remember to have fun • Explore choices • Remember “inclusion in life”

18. Life goes on while you’re “waiting” • Key ingredients • Common sense and willingness • Beyond the medical model • Family survival • Be the “squeaky wheel”

19. Questions? • Give us a call • Toll free 866-931-1110 • Email familytofamily@thearcofil.org • www.thearcofil.org/familytofamily • 708-560-6703 • Tell families about us

20. Contact informationFamily to Family Health Information and Education Center The Arc of Illinois • 20901 South LaGrange RoadFrankfort, IL 60423 • 815-464-8247708-560-6703 (voice)815-464-5292 (fax) Illinois Relay: Dial 711E-mail: familytofamily@thearcofil.org Website: www.thearcofil.org/familytofamily

21. Share your resources! • Stay in touch • Add to our database • Illinois Life Span Project • http://www.illinoislifespan.org/providers/index.asp • Send resources our way

22. We’re going to learn a lot today! • Stay in touch • We welcome your questions • Great speakers • Check out resource tables • Thank you for coming!