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Sharing the Care


Sharing the Care October 15,2009 Springfield, Illinois The Autism Program – PowerPoint PPT presentation

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Title: Sharing the Care

Sharing the Care
  • October 15,2009
  • Springfield, Illinois
  • The Autism Program

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

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

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 98102 (1
    Pt 1)117-123

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

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 Presidents New
    Freedom Initiative.
  • We are part of the Social Security Act the
    Family Opportunity Act

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

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."

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.

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

CYSHCN on waivers in IL
  • 1,912 children participated in child-specific
    Home and Community-Based 1915(c) Medicaid
  • 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 Childrens
    Residential Waiver for children with DD (waiver
    year 2008)

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

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

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

Our partners today
  • The Arc of Illinois
  • Illinois Life Span Project
  • The Autism Project/Hope Institute

Todays topics
  • Stress reduction
  • Child care
  • Microboards and cooperatives
  • Respite options
  • Recreation and leisure

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

Life goes on while youre waiting
  • Key ingredients
  • Common sense and willingness
  • Beyond the medical model
  • Family survival
  • Be the squeaky wheel

  • Give us a call
  • Toll free 866-931-1110
  • Email
  • 708-560-6703
  • Tell families about us

F2F Contact Information
  • The Arc of Illinois
  • 20901 South LaGrange RoadFrankfort, IL 60423
  • 815-464-8247708-560-6703 (voice)815-464-5292
  • Illinois Relay Dial 711E-mail
  • Website

Share your resources!
  • Stay in touch
  • Add to our database
  • Illinois Life Span Project
  • http//
  • Send resources our way

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