Sharing the Care

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Sharing the Care

• October 15,2009
• Springfield, Illinois
• The Autism Program

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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

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Who are CYSHCN?

• A federal definition
• Children/youth up to age 21
• Any disability
• Any chronic illness

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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

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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

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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

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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?

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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."

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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.

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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

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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 Childrens
  Residential Waiver for children with DD (waiver
  year 2008)

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What Sharing the Care means

• Readily available
• Community-level
• Family-centered
• Statewide
• Resources and supports
• Ideas and options

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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

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Inclusion in life

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

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Our partners today

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

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Todays topics

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

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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

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Life goes on while youre waiting

• Key ingredients
• Common sense and willingness
• Beyond the medical model
• Family survival
• Be the squeaky wheel

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Questions?

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

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F2F Contact Information

• 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_at_thearcofil.org
• Website www.thearcofil.org/familytofamily

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Share your resources!

• Stay in touch
• Add to our database
• Illinois Life Span Project
• http//www.illinoislifespan.org/providers/index.as
  p
• Send resources our way

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Were going to learn a lot today!

• Stay in touch
• We welcome your questions
• Great speakers
• Check out resource tables
• Thank you for coming!