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Children and young adults with special health care needs are those who require higher-than-average use of the health care system due to a health condition such as diabetes, epilepsy, cerebral palsy, autism, cancer, sickle cell disease, traumatic brain injury, or other illness or disabilities.  The Affordable Care Act (ACA) includes a number of provisions that are extremely important to CYSHCN and their families.  Among the most important of these are:

  • A prohibition on refusing to insure or charging more for coverage of children with pre-existing conditions, or excluding coverage for services related to that condition. Before the ACA, children could be denied insurance, charged more for insurance, or denied coverage for the services they needed most because they had a pre-existing condition such as a congenital heart defect, cerebral palsy or asthma. Without insurance for their children, many families could not afford the expensive medications, medical care, and hospitalizations their children needed, forcing them into medical bankruptcy.
  • Elimination of annual and lifetime benefit caps. Before the ACA, a very sick premature infant might reach on his or her lifetime cap on coverage before even leaving the hospital, sometimes leading to the family’s bankruptcy. Children with chronic conditions who needed expensive medications or frequent therapies might reach their annual cap every year.
  • Habilitation services and devices, other critical health benefits. Before the ACA, many insurance plans did not cover “habilitation” services – therapies needed by many children with developmental disabilities to acquire and maintain skills (e.g, physical therapy for those with cerebral palsy so they can learn to walk, speech therapy for those with hearing impairments).  The ACA also ensures that children get critical oral and vision care and behavioral health services.
  • Allowing young adults to stay on their parents’ insurance policies until age 26, and providing Medicaid to former foster children until age 26. These provisions help many young adults with chronic illnesses or disabilities who do not have access to employer-sponsored insurance but are not eligible for Medicaid, and provide a parallel benefit to former foster children, including those with special health care needs.
  • No-cost preventive care for children based on the “Bright Futures” recommendations of the Maternal and Child Health Bureau and the American Academy of Pediatrics. No-cost check-ups and screenings help to ensure that health or developmental problems are detected and addressed early in a child’s life, helping to avoid more expensive treatment or special education later on.
  • Medicaid expansion to all individuals with incomes up to 138% of the federal poverty level. This provision helps young adults and others with chronic illnesses or disabilities who do not have access to employer-sponsored insurance and are not otherwise eligible for Medicaid.

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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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