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Medicaid is a vital program for children and youth with special health care needs (CYSHCN) – children who have any of a broad range of chronic illnesses and/or disabilities (e.g., cerebral palsy, epilepsy, diabetes, autism).  Approximately 15 million, nearly 20 percent, of all U.S. children have special health care needs.  Over 44 percent of these children rely in whole or part on Medicaid or CHIP to cover the costs of their care.

Over 11 million CYSHCN – 35.9 percent — rely completely on public insurance to get the services they need.  Another 8.2 percent have a combination of private and public insurance.  In those cases, Medicaid helps families pay for out-of-pocket costs, and may serve as “wrap-around” coverage to supply services or devices not covered by their private plans.  For example, some medical equipment and assistive devices (such as hearing aids) may not be covered under traditional insurance plans but are available through Medicaid.

Accordingly, Medicaid can save families from bankruptcy that might otherwise result from high medical bills.  In many cases, it also allows parents to continue working by supplying caretaking services for their children.

In addition, Medicaid helps to prevent or ameliorate disabilities, since children on Medicaid have access to Early and Periodic Screening, Diagnosis and Treatment (EPSDT).  Early screening and diagnosis means that developmental or health problems can be identified early in a child’s life, and necessary treatment can be provided before a condition develops or becomes more severe.  As a result, some children can avoid the need for special education services.

If not for Medicaid —

  • Santina – a teen from Pennsylvania with Rett Syndrome and epilepsy – could lose access to her medication. And, her single mother would probably have to quit her two jobs if Medicaid’s safety net were not there to provide a caretaker for her daughter.
  • The family of Joshua – whose life-saving liver transplant was paid for by Oregon Medicaid — would not have the means to pay for the 22 medications he must take every day.
  • Jason, from Ohio – who has developmental delays that leave him unable to speak, walk, or use his hands in a coordinated fashion – would lose the early intervention, speech, occupational, and physical therapies that will one day allow him to walk, speak and use his hands.

In short, millions of vulnerable children and their families rely on Medicaid to help them obtain and pay for critical medical care and related services.

Please send me your stories about how Medicaid or CHIP has helped your family.

Best Regards,

Tom Rose


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Family Voices Colorado believes that parents of children with special health care needs should not be alone when they face the scary and confusing task of securing care for their children. Every day we give parents the information and strength they need to navigate complex health care systems in order to get things like wheelchairs, oxygen, or surgery for their children. With our help, parents are able to be the heroes their children are counting on.

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