Medicaid, thought of by many as “health care for the needy,” is also essential to people with disabilities and their families. For children with autism, Medicaid provides services that may enable them to speak to their parents for the first time, learn from their teachers or even use the bathroom. For adults with disabilities, supports can enable them to live in their own homes, hold jobs and participate in their communities.
Without Medicaid, costs for vital treatments and supports could shift to individuals or their family members, possibly putting those services out of reach. In North Carolina, the CDC estimates that as many as 1 in 59 children may be diagnosed with Autism Spectrum Disorder, meaning thousands of families in our state have loved ones with autism who need the supports provided by Medicaid.
Children and adults with developmental disabilities such as autism may apply for a slot in a North Carolina Medicaid Home and Community-Based, or Innovations, waiver. However, a limited number of Innovations waiver slots are available; caps on or cuts to Medicaid would only lengthen the already 7- to 8-year wait for services for thousands of individuals.
Under Early Periodic Screening Diagnosis and Treatment, the federal government requires states to cover intensive behavioral services – as well as other interventions – for autism for children on Medicaid who are under 21. EPSDT enables families to get a diagnosis and start their child’s treatment as soon as possible. Early intervention with research-based treatments has been shown to improve outcomes for individuals with autism, increasing their potential to reach their goals and lead fulfilling lives as contributing members of society. Early intervention also reduces costs of care across their lifespans by approximately $1 million per child, according to Dr. Geraldine Dawson, head of the Duke Autism Program.
Behavioral treatments are making a real difference in families’ lives every day. One Triangle family enlisted the Autism Society of North Carolina to help with their nonverbal teen son who had never used the toilet. His mother believed he was not able to discern when he needed to use the bathroom, and so the family had been using diapers throughout his life. The parents and our clinical team mapped out a treatment plan, set aside a weekend and succeeded together. This huge step for this child and his family would not have been possible without Medicaid’s support.
Another family had spent years trying different communication tools for their nonverbal teen son, but nothing took hold, and he sometimes used aggressive behavior to communicate his wants and needs. ASNC’s clinical team worked with him for a while and then introduced Picture Exchange Communication System, which has been proven through research studies. After just a couple of months, the teen was using the system to pull a picture and hand it to someone to let them know what he wanted. He was empowered to make choices for himself, as well as reducing his challenging behaviors, with the help of Medicaid funding.
Medicaid also provides access to physical and mental health-care services for individuals with autism, including diagnostic assessments, physical therapy, occupational therapy, speech therapy, outpatient and inpatient mental health/psychiatric services, preventative and physical health care and medications. All of these services are vital to some of our most vulnerable neighbors.
Proposed changes to Medicaid, including block grants and significant cuts to funding, would likely end access to these therapeutic and health services for people with autism.
Our fellow North Carolinians with autism deserve a fulfilling life. Their families deserve our support. Our communities are a better place when everyone is included, when everyone is lifted. Medicaid is an important avenue for that support, and we must keep that in mind as changes to health care are debated.
Tracey Sheriff is CEO of the Autism Society of North Carolina.