At age 57, Ellen Warshaw is finally living her dream. She’s preparing to move into a new home for aging adults called the Michael Och House at JESPY, a South Orange-based nonprofit dedicated to individuals with developmental and intellectual disabilities.
“There’s going to be eight other people plus me. And I get to pick out my room, and I’m excited because I have my own bathroom and I don’t have to share,” Warshaw said.
But research shows that Warshaw’s welcomed situation is the exception.
“There has to be more choice. There’s this idea in some people’s head that there’s one size fits all with folks with disabilities. It’s just not the case,” said Paul Aronsohn, ombudsman for the New Jersey office of Individuals with Intellectual or Developmental Disabilities and Their Families.
It’s estimated that over the next decade, more than 1 million intellectually and developmentally disabled adults will live into their senior years. Aronsohn says that’s good news, but it presents a new slate of challenges for a state already struggling to offer support.
“You’re talking about housing, you’re talking about employment, you’re talking about any of the service supports. We need to make options available. Integration into the community is a wonderful goal for most people, but it’s not for everybody in all situations,” he said.
For decades there’s been a push to mainstream social, medical and behavioral care for the intellectually and developmentally disabled. The New Jersey Department of Human Services says it’s continually reaching more people in need, but roughly 2,500 are on a waiting list for the state’s community care program which provides funding, housing and other supports for the mentally disabled. Still, the majority are cared for at home by family members, who are themselves aging. Aronsohn says there’s a common phrase used among families when their loved one turns 21: falling off the cliff.
“Family members lose everything, every support their child ever had. They’re done. Twenty-one, and it’s sort of like a slap in the face for some families. They don’t realize what’s happening,” said Sherry Scucci-Hamilton, clinical supervisor for JESPY House.
At 21, special needs students age out of the school system. They also reach a crossroads in care, shifting from the Department of Children and Families to the Division of Developmental Disabilities. In New Jersey, those without private insurance can get help from Medicaid, which comes with its own set of hurdles — extensive applications and limited choices of medical professionals who accept it. Clinicians at the JESPY House focus on easing the transition to adulthood by providing day programs, job coaches, clinical and behavioral support.
“We are outnumbered. There’s not enough people who are in the field, it’s not even enough people to teach in the field,” Scucci-Hamilton said.
But Scucci-Hamilton says she sees inequities in the medical world: staff ill-equipped to treat their client’s needs.
“I don’t think in medical school they’re taught a lot about any population with a disability. And they lean, and some of the doctors are good and they will try. And then you get others who say, ‘You know what, I can’t see this person. I can’t help them,’” Scucci-Hamilton said.
“There is so little information in regard to the population that we’re working with,” said Rosalie Cespedas, a clinical supervisor at JESPY House. “And the fact that most of them don’t have that particular specialist to go to, they end up going to their primary care physicians who may not be 100 percent educated or may not have all the resources necessary to deal with them and treat them accordingly, so they’re being treated as a normal, mainstream individuals who may not necessarily be presenting with the same symptoms or clinical synopses that we’re looking at with our adults.”
For families trying to navigate through the relative darkness in search of care for adults with developmental disabilities, the ARC Mercer is considered a lighthouse.
“When it comes to health care, we are the only comprehensive health care center specializing in folks with special needs and developmental disabilities in the Central Jersey region,” said Steve Cook, executive director of the ARC Mercer.
Inside it’s health care program, you’ll find psychiatrists, podiatrists and nurses. All have adapted ways to work with this population.
“One of the key diagnostics for having effective medical care is the ability to have a blood draw. And we have to make this as comfortable for people with special needs, so we have a massage chair, aromatherapy and music,” Cook said. “We actually have patients coming from as far as Cape May, traveling here for mental health supports and psychiatric care. That’s an indicator that there really aren’t enough services out there.”
Cook says New Jersey actually has one of the better infrastructures for aging adults in the nation. There’s just not enough of it and funding is an issue. Patient appointments take longer for the developmentally disabled, and that can be costly. The state’s new fee-for-service model with Medicaid is causing rising fears about regulatory burdens. Mercer ARC’s health care program operates with a $200,000 annual deficit. Even still, they’ve been able to cut hospitalizations by 550 percent since opening in 2011.
“Medicaid doesn’t have the highest reimbursement rates, as I think everyone knows in this industry, and that’s a primary mode of funding health care for individuals with developmental disabilities. So having a limited amount of money, but a need for an expanded amount of time for appointments and the care management has just increased the cost of delivering what we call quality care.”
But is the state equipped and prepared to provide the services this aging population needs?
“I think we’re in a good place but we need to get in a better place,” Aronsohn said. “For every parents of an adult child with disability, the fear of what’s going to happen when I’m gone, it’s so real, it’s ever present. But the good news is a lot of smart, thoughtful people throughout the community, whether they be in government, whether they be in the nonprofit sector, are looking at these issues.”
“What happens is you’re getting a minimal amount of money, but they’re still spending that amount of time. So I’ve talked to other people in the area that closed or aren’t working and it’s because financially it isn’t substantial,” said ARC Mercer Practice Manager Debra Anders.
Until then, families will have to rely on the few — though standout facilities — that exist. For the lucky few, like Dan Kanner who is a JESPY client, it’s meant a fulfilling life. He has a wife and a full-time job.
“I was happy that they helped me find it, and now I’m secure with it. I don’t have to worry about losing it because they know they depend on me every day for what I do,” he said. “To know that you’re needed? Yeah, that is a good feeling.”
Because at any age, that’s really all anyone wants.
“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.