Who We Are
Most Pennsylvanians with disabilities want to live in their communities—not in institutions or nursing homes—with the supports and services that make independence possible. With the right services, people can live safely at home, work, participate in community life, and thrive.
Since the passage of the Mental Health and Mental Retardation Act of 1966 (now the MH/ID Act), Pennsylvania has provided a wide range of services for individuals with intellectual disabilities and their families. However, people with physical developmental disabilities—such as cerebral palsy—have largely been excluded from these supports until adulthood.
Project Beyond Diagnosis was created to address these gaps by examining how the current MH/IDD framework leaves out individuals with developmental disabilities. We document the impact on individuals and their families and develop actionable recommendations for change.
Our Goals
- Ensure equitable access to inclusive health and human services for all people with developmental disabilities in Pennsylvania.
- Conduct research and data analysis to identify how current systems create inequities and where change is needed.
- Amplify the voices of people with lived experience—individuals with cerebral palsy and other developmental disabilities, and their families—in shaping solutions.
- Provide policy recommendations that will strengthen and expand Pennsylvania’s disability service system.
Services should be based on people’s needs—not just their diagnosis. The Beyond Diagnosis Project lifts up the voices of Pennsylvanians with developmental disabilities and their families, showing why change is urgently needed. Watch this short video to learn why equitable access to supports and services matters for thousands of people across the state.
Our Projects
The Beyond Diagnosis team:
- Analyzes services provided to this population from across the country
- Works alongside a stakeholder advisory committee—made up primarily of people with developmental disabilities and their family members—to review data and guide recommendations.
- Shares findings and stories through blog posts, personal narratives, research briefs, videos, and legislative updates.
House Resolution 134
In recognition of the importance of equitable disability services, Beyond Diagnosis has collaborated with the Pennsylvania House of Representatives on House Resolution 134. This resolution highlights the need to examine and reform how developmental disability services are provided in the state.
When passed, this study will:
- Document the real-life impact of service gaps.
- Bring forward the perspectives of individuals and families.
- Provide research-based recommendations to lawmakers and policymakers.
Research Study: How States Support People with Developmental Disabilities
About the Report
In June 2025, the Beyond Diagnosis Project, in partnership with the Pennsylvania Health Law Project (PHLP), released a groundbreaking study: How Various States Provide Supports for People with Developmental Disabilities Other than Intellectual Disability and Autism.
This report examines how other states’ Home and Community-Based Services (HCBS) waivers serve individuals with developmental disabilities such as cerebral palsy, spina bifida, epilepsy, muscular dystrophy, and spinal muscular atrophy—populations who are often excluded from Pennsylvania’s current system.