In a new report, a state advocate documents wide disparities in the level of care New Jerseyans with intellectual and developmental disabilities (IDD) experience.
In July, the New Jersey Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families issued his 2024 Annual Report, the final report under Governor Phil Murphy’s administration.
The Ombudsman serves as a trusted, impartial advocate and guide – helping individuals with intellectual or developmental disabilities and their families access services, resolve disputes, understand their rights, and contribute to improvements in how those services are delivered across the state. State laws require the Ombudsman to publish an annual report summarizing the services provided and offer policy recommendations related to state implementation of services for individuals with IDD and their families.
The annual report is informed by direct casework with individuals and families, outreach efforts, ongoing dialogues with state agencies, as well as consultations with legislators, providers, and advocacy organizations.
The theme for this year’s report is “A Tale of Two Systems,” highlighting the wide range of experiences that individuals and families encounter within New Jersey’s IDD provider landscape. While many providers exemplify professionalism and dedication, others face challenges that can result in inconsistent or inadequate care. These disparities between well-intentioned policies and real-world implementation can leave families without the support they need, underscoring the urgent need for systemic improvement and accountability.
For some families, the experience of navigating this system is often described as exhausting and deeply discouraging. As the report states, “individuals and family members often feel as though they must be prepared to fight, while recognizing that their weakened position means that they must also prepare to lose.”
One family member poignantly shared, “unlike other parents, we want to outlive our children.” This heartbreaking sentiment underscores the devastating reality that many families are faced with.
These are not isolated remarks, but the kinds of realities the Ombudsman and his office hear and confront each day, giving weight to the report’s findings and recommendations.
Some of the recommendations outlined in the report that coincide with Autism New Jersey’s priorities include addressing:
- Abuse and neglect: Enhancing safeguards for individuals in residential settings
- Complex medical needs: Ensuring the healthcare system can comprehensively treat individuals with co-occurring disorders
- Housing: Improving access to safe and appropriate community-based housing options for youth and adults
- Severe challenging behavior (SCB): Expanding treatment options for individuals exhibiting SCB throughout the lifespan
The report also highlighted some of Autism New Jersey’s work including the:
- Law Enforcement Initiative: Encouraging law enforcement agencies to adopt practices that are more accommodating to individuals with autism
- Advancing Healthcare Initiative: Reducing healthcare barriers for individuals with autism to ensure easier access to services
- Emerging and Severe Challenging Behavior Consultation Programs: Working with care managers to help families access timely and effective treatment for both young children with autism and emerging challenging behavior as well as children with autism and severe challenging behavior of all ages
Autism New Jersey remains committed to working with the Ombudsman and his office to advance the rights, safety, and quality of life for individuals with autism and their families in New Jersey. As outlined in the annual report, the systemic challenges facing the autism community, particularly those with profound needs and severe challenging behavior, require persistent, coordinated, and transparent advocacy.