ISELIN, N.J. — Paul Aronsohn had just submitted his first annual report as the new ombudsman for people with developmental disabilities when he was summoned to a meeting with a senior member of Gov. Phil Murphy’s administration in early 2019.
The report described New Jersey as a ‘tale of two systems, one that is good and one that is not good,’ that is ‘in need of fixing because lives, frankly, depend upon it.’”
Aronsohn said it was immediately clear the Murphy administration was not pleased with his candid report.
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“Paul, what are you doing? You’re not supposed to be an advocate,” he said the senior official told him. After a moment of stunned silence, Aronsohn quickly recovered, remembering Murphy had described him as “the administration’s lead advocate” for people with disabilities in the press release announcing his appointment in April 2018.
Aronsohn would not publicly say which Murphy adviser had chastised him because he won’t burn bridges. The tussle over the annual report would happen again throughout his nearly eight years on the job.
He tells this story because it offers a glimpse into what the job required. He had to be the fervent voice on behalf of thousands of people with disabilities who deserved more than they were getting from the state. And, he would have to be the rational arbiter needed to establish a rapport with state officials and members of multibillion-dollar industry that provides housing, supervision, employment and other vital services to people with disabilities.
Parents often got mad at him because he didn’t have the power to fix their crisis. Lobbyists for group home operators and state officials frequently complained he was unfairly critical and “histrionic” — especially when he described abuse and neglect inside group home and daily programs as “rampant.”
In an interview with NJ Advance Media, Aronsohn looked back on his tenure as New Jersey’s first “Ombudsman for Individuals with Intellectual and Developmental Disabilities and Their Families,” and said it was hard to leave. But he is exhausted.
“We work very closely with families who come to us. We get emotionally invested. In that sense, it has been the best job,” Aronsohn said. “On the other hand the indifference we encountered on a regular basis — it was infuriating and heartbreaking.”
He also offered specific advice for Gov. Mikie Sherrill’s administration, which will appoint his successor:
Tear down the “wall around state government” that keeps officials far from the daily reality of how stressful it is to care for people with disabilities and the frustration of navigating an enormous bureaucracy.
Appoint people to the state Departments of Human Services and Children and Families who know what it’s like to live with autism, cerebral palsy and other disabilities.
Require these officials to speak directly with clients and their families.
“We encounter people inside and outside of state government who don’t have that sense of mission or that sense of urgency that should be a prerequisite for any of these jobs,” Aronsohn said.
Aronsohn and his office logged more than 6,000 phone calls, virtual meetings and home visits since he took the job in April 2018, according to his final annual report. His state car clocked in at 148,000 miles when he turned it earlier this year.
“I’m on the phone one-on-one with individuals and families in video meetings and whenever possible, sitting in their living room for coffee, really benefiting from that personal connection. It’s good for them and it’s good for us. It keeps it real,” Aronsohn said.
N.J. Rep Tom Kean Jr., R-7th, said Aronsohn handled the job just as he hoped he would when Kean introduced the legislation creating the Ombudsman’s office a decade ago when he was a state Senator.
“For the past seven years, Paul and his staff have traveled the state personally, they’ve met with individuals and families and not just offering good counsel and guidance on navigating the maze of government services. They truly are people of action and inspiration,” Kean said at a December meeting of the Legislative Disability Caucus, which paid tribute to Aronsohn’s work.
Aronsohn was the right pick because he understood the challenges of living with a disability on a personal level, Kean added.
Aronsohn said two of his siblings lived with disabilities. His mother became his role model for what it means to be a caregiver, he said.
His sister Patti was born with developmental delays but went to college and worked until she became a quadriplegic. Both Patti, who was 54, and his mother Margot died within days of each other in June 2017. His brother Bob Zuckerman, a renowned photographer, developed a late-onset disability and became a paraplegic. He died from COVID three years ago in a Florida nursing home at age 67, eerily on the same day Patti died, June 23.
“In life and in death, they’ve been my teachers,” he said.
Aronsohn landed on Murphy’s radar after developing services for people with disabilities as mayor of Ridgewood in Bergen County and serving on several nonprofit boards.
“I still remember getting the voicemail that I was being appointed to be this ombudsman position,” Aronsohn said. “My first thought was, what’s an ombudsman?”
(The Merriam- Webster dictionary defines it as “a person who investigates, reports on, and helps settle complaints” and “an individual usually affiliated with an organization or business who serves as an advocate for patients, consumers, employees.”)
Since then, the office of one has grown to five people. They are called to help people with disabilities and their families navigate “the most serious, most difficult circumstances imaginable,” Aronsohn’s annual report said. “Unmet medical and behavioral needs. Unchecked abuse and neglect. Untimely death.”
In his soft-spoken, diplomatic manner, Aronsohn always credits the many well-intentioned and passionate professionals he and his staff have encountered as they run interference with families. But he won’t smooth over any of the glaring problems his work has uncovered and hopes Gov. Mikie Sherrill is getting up to speed on what needs to be done.
Here’s his partial to-do list.
Recognize that severe autism is a crisis in New Jersey.
Nearly one in three children diagnosed with autism falls into the severe category. They have trouble communicating and often do so by hurting themselves or others. Some often suffer with anxiety or another mental disorder. Even with New Jersey’s high autism rate of 1 in 29, Aronsohn said the public doesn’t see this segment of the population often.
“Families with children with severe autism don’t go out in public,” Aronsohn said. “We need to go to them.”
Rutgers and Rowan universities are doing important research to help those who are severely impaired, he said, but “we have been working with individuals and their families who do not seem to be benefiting from much of this.”
With federal Medicaid spending cuts looming, spend public money more carefully.
The average direct support worker, doing the bathing, feeding and supervising of clients in family homes or group homes, earns only about $21 an hour. But in the last eight years, as New Jersey qualified for more federal Medicaid funding for people with developmental disabilities, for-profit and nonprofit companies that operate group homes are paid as much as $520,000 a year per person. Executive pay has skyrocketed, an NJ Advance Media analysis found.
History has shown abuse and neglect is more likely to occur when the workforce is poorly paid and prone to quit, Aronsohn said. But aside from New Jersey raising the minimum wage for all workers, employers haven’t done much to raise the wages of this vital workforce.
“We know that we have a direct care workforce shortage, but what are we doing to address it?” he said. “We know what we’ve been doing isn’t working.”
Abuse and neglect are, indeed, rampant. There are viable solutions.
“Not a single day goes by without someone contacting us about an allegation of abuse and neglect,” Aronsohn said.
“It’s a dirty little secret that everybody knows. Good providers know it — they get people transitioning into their programs from abusive ones,” he said. “I don’t know how we can be silent. We have a moral, if not a legal obligation to call it out and do something about it.”
Some group home providers voluntarily install cameras in common areas and thoroughly investigate when there are allegations of mistreatment, he said.
“Other provider agencies, however, are not as vigilant or serious, and frankly, our state government does not do enough to prevent or stop the abuse and neglect,” he said.
Aronsohn left on the heels of a victory. On Jan. 18, Murphy signed legislation the Ombudsman had recommended that would give the state the authority to impose fines on bad group home operators. Aronsohn’s call for fines was in response to a report by NJ Advance Media in 2024 examining the severe medical neglect and abuse of a young woman at a group home in Lakewood.
Aronsohn called the law a “good start,” but he knows that state investigators too infrequently confirm abuse and neglect have occurred.
There is a package of bills sponsored by state Assemblyman Alex Sauickie, R-Ocean, that would require cameras to be installed in group homes. They would also create an independent Justice Center in New Jersey, modeled after an entity in New York that is responsible for all abuse and neglect cases involving victims with disabilities.
In New Jersey, the state Department of Human Services and the state Department of Children and Families lets the group home investigate a complaint first before the state does its own examination.
“Without credible investigations, no agency will ever be fined,” he said.
The success of getting the fines law enacted, even while pushing for more thorough investigations, demonstrates how long progress can take.
“I feel good about the work we’ve done and about the people we’ve been able to help. Clearly, I wish we could do more. We would get frustrated on at least a daily basis that we’re not able to help more people.”
Aronsohn and his team are more appreciated than they know, said Patricia Miller, chairwoman of the New Jersey chapter of the National Council on Severe Autism.
“I continually hear from thousands of families about the crucial impact of the Ombudsman’s office and Paul’s dedication. For many families it is the only place for them to turn to for help,” Miller said.
Yana Mermel, the mother of the young woman with autism who doctors said suffered severe medical neglect in the Lakewood group home, said “families remain grateful for all he has done, yet apprehensive for the future.”
“Everyone recognizes that it will be a challenge to find someone exactly like Paul because his drive and ability to help are truly unique,” she said.
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