Jamie Trabbold is use to going to bat for her family. At just 9 years old, her son Ronnie has seen more doctors and specialists than most adults will in a lifetime. But it took a crisis situation last June for Trabbold to realize the state is ill-equipped to meet her son’s needs.
“There are not many doctors who are comfortable with children with autism and co-morbidity with so many different other special needs. So we have paid out of pocket to get him seen, to be turned around and told, ‘Sorry your case is too complicated,'” said Trabbold.
Ronnie has what’s called dual diagnosis. The term is frequently used to describe people with mental illness and substance use disorder, but it’s also a major problem for a less recognized population — those with developmental disabilities and a mental illness. Advocates estimate 150,000 New Jersey residents have intellectual or developmental disabilities. Despite no official numbers, they also believe one-third have a mental illness, too.
Trabbold became part of the population when her autistic son turned suicidal.
“Not all the nurses knew, or understood, how to help him or to communicate with him because he is special needs. So they treated him as if he was a neuro-typical child with the same questions. However, with wording for him you need to phrase it differently to get an answer. They were kind of sidelined and they didn’t quite know what to do, or how to do, and again, it was a different experience than we’ve ever had before with him and we needed their help,” she said.
Despite reservations, Trabbold saw little choice but to call 911 for help. What she got instead, as she describes, was seven days in an emergency room, four white walls and a traumatized child.
“We had an amazing doctor, but unfortunately he said, ‘I’m really sorry, I don’t know what to do for you.’ And that was hard as a parent because we are in the emergency room, we are in the hospital, we expect to have somebody be able to take care of a child who’s in need,” Trabbold said.
“I’ve heard stories of people being in the emergency room with the dual diagnosis for up to three weeks, up to a month in one case. And what happens is they come out medicated, more so than they were before. We need to wrap our head around this. We need to figure it out,” said Paul Aronsohn, state ombudsman for Individuals with Intellectual and Developmental Disabilities and Their Families.
Aronsohn says the story is tragic, and also not uncommon. The New Jersey Hospital Association says while it doesn’t track the number of developmentally disabled patients seeking psychiatric help in emergency rooms, anecdotally, the numbers are way up.
At the Boggs Center on Developmentally Disabilities, Deborah Spitalnik agrees.
“I think we’re at, from a service delivery level, a fairly primitive level of development. And historically, the way that we’ve described people as having mental health needs or having disabilities, we need to break down those silos,” Spitalnik said.
In 2008 the state’s Department of Human Services convened the first-ever task force on dual diagnosis with a mission to create a plan for developing services and supports for individuals with co-occurring diagnosis. The commission’s first, and only, report recommended, among other things: developing county-based planning for individuals with dual diagnosis; creating crisis-response services and increase prevention; and developing outpatient service centers for comprehensive care.
A decade later, a spokesperson for the Department of Human Services confirms that task force is defunct and funding for priorities like the crisis response system never materialized. Meanwhile, advocates say the need for those services has only grown. It’s particularly worse for aging adults with a dual diagnosis.
“One of the things that we feel very strongly about is that in addition to looking at services for crises, we have to look at, at the same time or even before, what is it that people will return to?” asked Spitalnik.
“Clients call and say, ‘I tried to take my child to a therapist’ — and when they say their child, they’re adults — ‘and I walked in and they didn’t even know what Aspergers meant or what autism means,'” said Sherry Sucucci-Hamilton, a clinical supervisor at JESPY House, a nonprofit that helps adults with intellectual and developmental disabilities.
Scucci-Hamilton says the agency has seen an uptick in the problem because the state hasn’t built systems fast enough to keep up with the need.
“It is a population of people who don’t have enough people there to support them,” she said.
But the Department of Human Services disagrees. While acknowledging the issue as a long-standing challenge, they provided a list of initiatives either in the works or being deployed. That includes $10 million in incentives over the next two years to create residential settings for vulnerable populations, including those with dual diagnosis; $3.5 million allocated in the most recent budget for short-term emergency capacity housing, and enhancing autism benefits under Medicaid, to name a few.
It added in a statement, “ … The Department is strongly committed to strengthening and improving services for individuals with dual diagnosis. Providing the best services possible to everyone served by the Department is paramount.”
“One of the things we’re looking, a bunch of folks looking at, is telemedicine where you would have the ability, like in a group home that if there was a potential crisis you could call up the doctor on a video screen and get some treatment right there. It might be for something where you might not need to go to the emergency room, so you save not only the expense and all that entails, but the trauma that goes along with it,” Aronsohn said.
Trabbold has another idea. It’s called the Treehouse Project.
“These kids, these grown-ups with special needs, need a place specifically that is catered to them so they can feel that they’re welcomed, or that people understand them, and a place for them to be themselves,” Trabbold said.
She’s lobbying for mandated medical staff training, and designated special needs spaces for anyone with developmental disabilities, young and old. Trabbold is asking other parents and families to send video testimonials with their medical emergency stories. She says the problem seems to be exacerbated when the person is no longer a minor.
“There’s been a struggle for this, there’s been a struggle to get more acceptance for the special needs community and realize that they’re children and they’re adults just like everyone else and they need specialized care,” Trabbold said.
For her part, Trabbold isn’t going anywhere. She’s determined to fill the gaps so many others have fallen through.
“Aging and the Unknown: Adults with Developmental Disabilities” is a four-part series that dives into the complexities and challenges for those aging with intellectual and developmental disabilities.