For many families of children with disabilities, healthcare involves years of building relationships with pediatricians, specialists and therapists who understand their child. But what happens when that child becomes an adult?
A new report from First Place Global examines why the transition to adult healthcare can be so difficult for people with autism and intellectual and/or developmental disabilities (I/DD), and what could make the system work better.
Rethinking Systems: Effective Healthcare for Adults with Autism and/or Intellectual/Developmental Disabilities (I/DD) is a new public policy white paper authored by Laurel O. Tomlinson, MPA, a 2025–2026 ASU Morrison Institute for Public Policy Fellow and Daniel Jordan Fiddle Foundation Adult Autism Public Policy Fellow. The research was sponsored by First Place AZ and The Daniel Jordan Fiddle Foundation Adult Autism Public Policy Fellowship in collaboration with Arizona State University’s Morrison Institute for Public Policy.
The “Care Cliff” Doesn’t End at School
Families may be familiar with the transition planning that occurs as students prepare to leave the public education system. The report highlights a related problem in healthcare: a “care cliff” that can occur as young people move from pediatric providers and school-based supports into adult systems.
Adult healthcare systems often have fewer coordinated supports, leaving individuals, families, caregivers and others to take on more responsibility for finding providers, coordinating appointments, managing medications and navigating insurance.
The research also identifies broader barriers that can make healthcare difficult to access, including:
- Shortages of healthcare providers trained to serve adults with autism and I/DD
- Limited coordination among medical, behavioral health and disability service systems
- Insurance and reimbursement challenges
- Transportation barriers
- Communication difficulties and healthcare environments that may not accommodate sensory or other disability-related needs
- Medical symptoms being mistakenly attributed to a person’s disability rather than investigated as a possible health condition
The last issue, sometimes called “diagnostic overshadowing,” can have serious consequences. A change in behavior, for example, might be interpreted as part of someone’s disability when it could actually be a sign of pain or an underlying medical condition.
Why This Matters for Families
One of the study’s most important messages is that difficulty accessing appropriate healthcare is not simply a matter of families needing to find the “right” doctor.
The findings describe a healthcare system that is often fragmented and inconsistently prepared to meet the needs of adults with autism and I/DD. When appropriate preventive and community-based care is difficult to access, families may be left relying on emergency departments, crisis services or first responders.
The research also highlights something families know well: family and community support can make an enormous difference. Adults interviewed for the study described parents, advocates and other trusted people helping them understand medical information, ask questions, get to appointments and make their own informed healthcare decisions.
At the same time, not every adult has that support. The authors note that people without strong family or community advocacy may face even greater challenges accessing appropriate care.
Looking Toward Better Adult Healthcare
The publication offers a range of recommendations for improving the system. Among them are integrated healthcare models where multiple needs can be addressed in one place, better coordination among healthcare, behavioral health and public safety systems, sensory-friendly healthcare environments, improved insurance coverage, formal standards of care for adults with autism and I/DD, and increased disability-specific education and training for healthcare and public safety professionals.
The authors also recommend dedicated care coordinators who could help navigate complex healthcare and insurance systems.
For families preparing a young person for adulthood, the findings are an important reminder that transition planning involves more than education, employment and independent living. Planning for adult healthcare, including who will provide care, how information will be communicated and what supports an individual may need to participate in healthcare decisions, deserves a place in the conversation, too.
The full report provides a deeper look at the experiences of adults with autism and I/DD and healthcare professionals, along with recommendations for building a healthcare system that is better prepared to serve adults with disabilities.
