Health care falls short for the developmentally disabled population

“These are all of his medications he takes every single day,” said Joann Davis while methodically dropping pills into small containers. The regimen is for her 42-year-old son, Scott, who has Down Syndrome. And this daily cocktail has become their lifeline. He’s been battling depression and post-traumatic stress since February, after a series of unexpected family emergencies.

“It just kept escalating to where we were at the emergency room in local hospitals four times, and every time they could provide no help. They said he was not appropriate for their mental health units, and that they had no one on call with expertise in the field, so they’d give him a shot of Ativan and send him home,” said Davis.

They experienced what Davis says has been an increasing problem: access to proper medical and behavioral care for the developmentally and intellectually disabled. She says they’ve battled it Scott’s entire life, but the issue is worsening as he gets older, and she says it grew more pronounced after the Christie administration last fall separated and transferred control of all mental health and addiction services out of the Department of Human Services and to the Department of Health.

“It’s not just mental health, it’s regular medical health issues,” Davis said. “There are no doctors that are qualified, we don’t have any clinics for our people.”

Davis says her son was bounced between several medical facilities across the state and far from their Burlington County home, most of which are on an official government list of dedicated systems to treat the developmentally disabled population.

“There is definitely a shortage of providers out there, trained quality providers,” said Tom Baffuto, who heads the Arc of New Jersey. “We find the shortage more acute in South Jersey, and while there are pockets of programs, like the Arc of Mercer and Arc of Monmouth, they are difficult to access, difficult to find, and we clearly know it’s an advocacy issue to increase the number of trained providers for this population.”

The Arc of New Jersey is the state’s largest organization advocating for and serving kids and adults with intellectual and developmental disabilities. Last year alone, the Arc served over 5,000 families in need of connection to support services. Baffuto says that number shot up from recent years. And the Arc currently has 4,000 families and individuals on a waiting list for the Community Care Waiver — the program that helps pay for community-based services for the developmentally and intellectually disabled population. For non-emergent cases, that’s about a two to four year wait at minimum.

“Our folks are living longer than ever before, which is wonderful, but along with that comes an additional need for both physical health services, mental health services in some situations, and the other thing is, many years ago, a long time ago, folks were in institutions and so, that’s where doctor said, ‘put your child in an institution, forget about them, have more children go on with your life.’ And those were the bad old days,”  said Beverly Roberts, director of mainstreaming medical care at The Arc of New Jersey.

“The desire is for everyone to access generic services out in the community, and while that sounds good in theory, the fact is, our population has special needs. They need specially trained individuals and we believe we need more programs like the Arc of Mercer, like the Arc of Monmouth in the community, and we have to look at creative ways of funding them,” Baffuto said.

With Davis’s help, we placed a post within a Facebook group called ‘New Jersey Parents of Developmentally Disabled Adults,’ asking if they’ve experienced a lack of supports, medical and mental health care challenges and if they’d be willing to share publicly for our story. Within an hour, we had dozens of responses and met Sue Gazzara.

“My daughter had a behavioral crisis two years ago. We ended up at Our Lady of Lourdes emergency room because they were supposedly trained to deal with her. We were there for seven hours with her screaming in the emergency room. We were told by one of the nurses that we were not going to see a psychiatrist for a day,” said Gazzara, mother and co-founder of Futures4All, an advocacy group for the developmentally disabled population.

Gazzara’s 30-year-old daughter Stephanie is on the severe end of the spectrum.

“Every place you look, you have urgent care centers that are popping up,” she continued. “Why can’t we have an urgent care center for the developmentally disabled? Virtua Hospital is opening up a new hospital. Why can’t these hospitals have a dedicated facility for people that have special needs that really aren’t being served elsewhere? It’s a crisis.”

The Arc of New Jersey does have a dedicated special needs medical clinic, though leadership there readily admit it’s not nearly enough to provide services for the entire state. New Jersey also has a mobile response team for the developmentally disabled, called CARES, available during a mental health crisis. But families say they encounter doctors who haven’t been trained to deal with behavioral issues. And the state’s new fee-for-service model has made it harder and harder to find quality providers.

“I think the people who come up with these lists need to visit these sites and think, if it were my son or daughter would I put them there? Because I wouldn’t recommend it to anyone,” Davis said. “My son is not mentally ill. He has Down Syndrome. It’s a big difference.”

The Department of Human Services declined our invitation for an interview, but they did provide this statement: “Access to mental health services for individuals with co-occurring intellectual/developmental disabilities and mental health issues has been a longstanding challenge in New Jersey. The new leadership at the Department of Human Services is committed to working with stakeholders to help these New Jerseyans have the same access to mental health care as anyone else in our State. We look forward to working with families and stakeholders to make positive changes.”

The Department of Health also declined our interview request, saying in a statement, “All patients within the state psychiatric hospitals receive individualized treatment to meet their unique needs. There are psychiatrists with gero-psychiatric board certifications employed in the state hospitals. DMHAS [The Department of Mental Health and Addiction Services] continues to work closely with DDD to serve individuals who are dually diagnosed. We have specialized housing that is jointly funded, DDD has staff who are assigned to work within the state hospitals to help facilitate the discharge of individuals to appropriate services and settings.”

The parents we spoke with, many sole caretakers and aging themselves, say they want change and better advocacy on behalf of the state. Because they fear for when they’re not around to provide it.