Accessing comprehensive health care

Health care outcomes are poorer for children and adults with autism. Adults with autism face difficulties in accessing the health care services they need, and people with autism experience premature mortality.

Children with autism have disproportionately poorer health outcomes than their disabled and non-disabled peers. Children with ASD have nearly four times higher odds of having unmet health care needs compared to children without disabilities, whereas children with other disabilities have nearly two times higher odds of having unmet health care needs compared to children without disabilities.

Access, affordability and quality of health care services are crucial factors influencing health outcomes for people with autism.

Access to behavioral health care and therapies (e.g., applied behavior analysis or ABA), other important habilitative therapies (e.g., occupational therapy, physical therapy and speech therapy) and other medically necessary care (e.g., psychological and psychiatric services as well as pharmacy care) varies widely across payor and age.

Coverage and provider limitations exist in both public and private sectors. As a result, individuals with autism are not always able to receive the necessary health care they need to address their acute and long-term developmental, social and behavioral health care needs across their life span.

Autism Speaks believes that a multi-prong approach must be taken to address the health care needs of our community, including:

Protecting and Strengthening Medicaid

Medicaid is the single most important insurer for people with autism. It covers autism treatments for nearly half of all children with autism and pays for most residential and day programs serving adults with developmental disabilities. Autism Speaks strongly opposes any changes that would limit federal Medicaid payments to states, making it more difficult for children and adults with autism to receive needed care and supports.

The Early Periodic Screening, Diagnostic and Treatment benefit of Medicaid requires that all enrolled beneficiaries, age 0-21 years old, receive coverage for all medically necessary services to treat a condition.

Autism coverage has been ensured under Medicaid through litigation and administrative action as well as advocacy for the appropriation of state funds to cover required benefits. Since 2014, many states have implemented coverage for behavioral interventions (including applied behavior analysis) by amending their state Medicaid plan or adopting state regulations. However, children enrolled in Medicaid still have difficulty accessing the health care they need.

Adults enrolled in Medicaid face similar difficulties - access to acute, psychiatric and intensive health services for adults is severely lacking. Access to dental and vision care is also difficult for adults enrolled in Medicaid and working adults with autism may not have access at all to Medicaid if their state has chosen to limit enrollment. These disparities contribute to poorer health outcomes for adults and are why we strongly believe that Medicaid must be protected, strengthened and expanded so that all people with autism enrolled in the program can access the medically necessary treatment they need.

Closing Existing Gaps

Gaps in coverage for autism treatment exist across insurance markets. Some state laws mandate coverage of autism treatment only for young children, while some health plans continue to institute dollar caps on coverage. Self-insured plans and certain insurance markets are not covered by existing insurance mandates. Many adults with autism lose access to health care where coverage is limited to people under the age of 26.

Autism Speaks supports enforcement of existing state and federal law (e.g., The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008). Similarly, we strongly support expanding existing requirements in order to remove any caps on coverage - whether they are dollar amount or age caps, no one with autism should be denied the medically necessary health care they need.

Expanding Benefits

For many people with autism, the types of services they need to achieve the best possible outcomes do not exist. Programs like 24-hour community-based intensive psychiatric care do not exist in many communities. Provider shortages in many specialties are a reality across the country, causing people with autism to go without care. Access to tele-medicine and digital health can help improve outcomes, but many people with autism do not have access to these benefits. Existing programs must be expanded, and new programs must be created to ensure all people with autism have access to the types of health care they need wherever they live.

Autism Speaks believes that benefits must be expanded to ensure that children and adults with autism are able to access all necessary health care services whether they be behavioral, medical or other, including new and evolving treatments irrespective of whether they receive health care from private insurers or public programs (such as Medicaid, CHIP and others).

Autism Speaks is committed to ensuring that every individual has early and frequent access to evidence-based treatments for autism. Barriers to health care must be removed where they exist, and we are opposed to any efforts to weaken existing protections or damage existing health care programs relied upon by our community.

Training of Health Care Practitioners

Currently most health care practitioners in the U.S. (e.g., physicians, nurses) receive little to no training specific to autism while receiving their medical education. In contrast, emerging research indicates that the life expectancy for individuals diagnosed with autism is far below average. Autism Speaks supports the development and implementation of curriculum in state and federally funded medical education programs that provides essential information regarding appropriate care of patients who are diagnosed with autism across the life span.

Autism Speaks has developed a number of resources to help improve health care outcomes for children and adults with autism. Learn more about our medical, behavioral and wellness resources.