NJ's Disability Watchdog Is Leaving Unfinished Business
After seven years as New Jersey’s government advocate for individuals with developmental disabilities, Paul Aronsohn is still struck by the indifference.
Year after year, Aronsohn brings attention to heartbreaking stories of disabled individuals abused in group homes and neglected on buses; families desperate to keep their violent children with severe autism from hitting them and themselves; parents struggling to access services in a state that has plenty of them.
Despite countless recommendations to improve the system for disabled New Jerseyans, Aronsohn’s powers are limited and many of his proposals remain unaddressed. With a new governor taking office next year, Aronsohn will step down as New Jersey’s first Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families, requiring a replacement to be appointed.
“I’m emotionally spent,” Aronsohn, 59, said during a recent interview. “I need to move on.”
Aronsohn’s frustrations are evident in his mandated annual reports. In his latest and last report, he repeats calls for change he has made year after year. He urges government policymakers to spend more time with people with disabilities and their families, and to put those people in policy-making positions. He calls for universal autism screening of all New Jersey children; expanded support for police responding to mental health crises; and a multi-agency approach to autism. He also urges the next administration to give the office more resources and authority.
“He is in an important position; it should have more power in decision-making,” said Patricia Miller, New Jersey chair of the National Council on Severe Autism.
In New Jersey, 1 in 29 children have been identified with autism spectrum disorder, or 3.5% of 8-year-old children – one of the highest rates in the nation, according to Autism New Jersey. About 67,000 children and adults in the state have severe autism, which may include no or minimal language, unsafe behaviors and the need for lifelong support and supervision.
The ombudsman’s office was established by legislation to make it easier for families to access services. Every day, frantic parents email Aronsohn and his staff photos of their children’s bruises and injuries, and frequently text his personal phone in hopes of updates on their pleas for help.
“Before the office existed, some families felt like our state government was just a bureaucratic maze,” said Suzanne Buchanan, executive director of Autism New Jersey. “Now there’s a visible, trusted advocate who helps surface problems and push for solutions.”
When Governor Phil Murphy appointed Aronsohn in April 2018, Aronsohn said he had to look up the definition of “ombudsman” -- an official who investigates complaints, advocates for rights and recommends solutions. New Jersey also has an ombudsman for corrections, long-term care, mental health and special education.
At first, Aronsohn had no budget or physical office, but he did have a state vehicle. He racked up 140,000 miles visiting families in crisis, attending their meetings with schools and government agencies, and regularly meeting with lawmakers and disability organizations across the state.
His Trenton office now has five employees and an annual budget of $573,000 to support thousands of children and adults with disabilities and their families. Aronsohn and his staff had more than 1,300 meetings and phone calls with individuals and families in 2024, more than triple the number from 2020.
His recent travels include visiting the Somerset County home of a 19-year-old man with severe autism who bangs his head against the wall. Aronsohn is trying to help the family get the man emergency placement in a program focused on treating such behaviors. Another day, Aronsohn met with a state lawmaker and a mother in Essex County to discuss legislation to mandate extra training and equipment for bus drivers and aides that transport students with disabilities. The measure, introduced in November 2024, still awaits approval from the Assembly and the governor.
Miller, of the Council on Severe Autism, recalled Aronsohn’s response after she asked him to help with a family in crisis; a son with violent autism whose mother and daughter locked themselves in their rooms for safety. “He met with me and her and her whole team, week after week for months, until the kid got a residential placement,” Miller said.
Aronsohn's dedication is rooted in his own family’s experiences. His three older siblings had medical challenges, including sister Patti, who had a developmental disability and later became a quadriplegic. Their mom, Patti’s caregiver, died in 2017. Paul said there were family discussions about bringing Patti to New Jersey so he could care for her. In a sad but “somewhat poetic” twist of fate, Patti died three days after their mother, at age 54.
New Jersey is often ranked among the top states for autism services, drawing families to move there. Early intervention services for toddlers are free, specialized schools are plentiful, and insurance coverage is required for certain autism therapies. Most of Aronsohn’s work involves people and families “falling through the cracks in our system,” he wrote in his report.
"Paul encourages all of us – government, professionals, advocates, and families – to talk about the hard stuff in a constructive way," said Buchanan of Autism New Jersey. "The systemic gaps he exposed are heartbreaking and uncomfortable to face. Still, we’re having those difficult conversations and doing what we can to operationalize some of his recommendations."
Miller called Aronsohn “the lifeline” for families in crisis in New Jersey. She and other disability advocates were devastated by the news of Aronsohn’s departure. “All of us are worried,” Miller said. “We’ve all taken our turns calling his office and begging him not to leave.”
But Aronsohn said it’s time.
“We are often met with indifference and a lack of sense of urgency," Aronsohn said. "We feel it. We see what the challenge is. The system needs to respond in kind. That lack of understanding, that lack of urgency, it just adds to the toll.”
In recent weeks, Aronsohn’s office has devoted time to preparing for its transition to a new administration. There is a whiteboard in Aronsohn’s office full of to-do items, including outlining the processes they have created for intake and updating the database that holds information on all the people the office has encountered.
Over the years, Aronsohn has been met with a mix of reactions. While the state’s disability community has cheered his office's work, others say it has painted an unfair picture of service providers and highlights the negative too much. Aronsohn admits that his reports focus on what needs to be done rather than on what has been accomplished. But he insists he is fair, and said that the transparency has helped elevate the conversation in New Jersey about disabilities.
“Creating that safe space has been important," Aronsohn said. “We have given individuals and families a place that they can go.”
Source: NJ's Disability Watchdog Is Leaving Unfinished Business
