In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
The U.S. Centers for Disease Control and Prevention released results of a study regarding adolescents who transition from childhood to adult health providers. It found that most adolescents are not receiving the recommended support and guidance to transition to adult health care providers, and those with autism and other developmental disabilities were least likely to receive necessary supports. With this report, the Autism Society of America will continue to advocate for more supports through adulthood transitions in health care, and better training for health care professionals.
The report goes on to state that without improved supports, adolescents with mental, behavioral, and other developmental disabilities are likely to disengage and experience gaps in health care as they approach adulthood which is ultimately bad for their health and longevity.
The implications from the report are that our public health institutions must improve access to comprehensive and coordinated programs and services. In addition, they must increase provider training concerning adolescents’ unique mental and physical health care needs. These changes could help increase the number of adolescents benefiting from successful health care transitions. Primary Care Providers should work with families to better address the transition needs of these adolescents. More must be done to train all types of adult health care professionals to meet the complex needs of those with autism and behavioral health issues.
“I often hear from parents in our network that they do not have access to adult health care providers trained to meet the needs of adolescents with autism,” stated Christopher Banks, President and CEO of the Autism Society of America. “The Autism Society hopes this report results in real action from those who have the ability to change our approach to better serve and support the autism community.”
Adolescents with autism are particularly vulnerable due to co-morbidities, challenges with communication, need for routine, and changes to medications when entering adulthood. Through the Autism Society’s nationwide network of affiliates, a grassroots approach towards engaging health care professionals with comprehensive training is possible.