by Dana DiFilippo, New Jersey Monitor
Alex Guedes has complex neurodevelopmental disabilities and medical problems that require 24-hour skilled nursing care.
The 21-year-old Atlantic County man has autism, Down syndrome, and Ehlers-Danlos syndrome, a genetic condition that makes him susceptible to infections and injuries that can require surgery to fix. He’s on a feeding tube and frequently gulps air, a disability-related behavior that can cause a potentially fatal obstruction in his bowels.
After more than two decades of taking care of him, his mother Susan Coll-Guedes knows his needs as intimately as she knows herself.
But recently, state officials made her get drug tested and fingerprinted to her prove her safety as a caretaker. Alex lives at home, but a law meant to protect group home residents requires direct-care workers to be drug tested and fingerprinted.
“I’m his freaking mom!” she said. “You can’t even argue with them, because they’re like, ‘We’re just doing this for his protection, because bad things happen to people.’ And I get that, I get it. But it’s so messed up.”
Coll-Guedes’ experience is just one example of the “glaring disconnect” between people with complex health needs and the officials who set policies that affect their lives, according to a new annual report from New Jersey’s disability ombudsman.
In the report, Ombudsman Paul Aronsohn highlights several shortcomings that shut people out of services intended to protect them: the inflexibility of policies, the complexity of the system, and a “maddening lack of urgency” by those working in the system.
Those hurdles especially hurt young people when they age out of the children’s system of school-based entitlements, Aronsohn said.
“Some folks fall through the gaps. The system can be very complex and overwhelming for families and individuals, so what I am really trying to do is make sure their voice is heard,” Aronsohn told the New Jersey Monitor. “We have a full-fledged crisis on our hands.”
About 24,500 adults get non-residential services through the New Jersey Department of Human Services’ Division of Developmental Disabilities, and another 1,100 live in five state-run developmental centers, state data shows.
But Aronsohn suspects countless more are struggling outside of the system without vital supports, after they “fall off the grid” when they age out of the youth system at 21 and their families face navigating the dense, disconnected patchwork of adult services.
Because there’s no central entry point into the adult system of care, individuals must repeatedly reaffirm their lifelong disabilities to various health care providers, insurers, public assistance programs, and other entities — and risk losing services if any entity along the way denies their stated need, Aronsohn said.
Losing in-home supports can force families to institutionalize a loved one in out-of-home residential placements like a hospital, nursing home, or group home, he said.
Yet there’s an “alarming shortage” of residential options for children and adults with serious developmental disabilities who also need medical support, he said.
The Christie administration began closing state-run developmental centers about a decade ago in favor of privately run group homes, a controversial shift in care that was intended to save money but sparked protest. The state has not been allowing new admissions to its remaining developmental centers, with a few exceptions, Aronsohn said.
“Despite all the talk about ‘home- and community-based’ services and supports, many people with complex medical needs and their families do not have access to the tools to make living in the community a safe, sustainable reality,” Aronsohn wrote in his report.
While state officials have talked about the merits of de-institutionalization, their actions instead have “fostered a re-institutionalization by effectively forcing many people with complex medical needs — children as well as adults — into hospitals and nursing homes,” Aronsohn added.
Families like the Guedeses who want to keep their loved ones at home have trouble finding nurses and aides to work, because low salaries and increasing regulations have contributed to a labor shortage, Coll-Guedes and Aronsohn agreed.
The salary for direct-support professionals who care for people with intellectual or developmental disabilities typically ranges from $13 to $16 an hour, while the Medicaid salary rate for private-duty nurses in New Jersey — about $28 an hour — hasn’t increased in more than a decade, according to Aronsohn’s report.
“There is a dangerous disconnect here,” Aronsohn wrote. “We expect professionals to provide first-rate care and support to people with significant medical, physical, and/or behavioral needs, yet we often pay them at substandard rates and often give them minimal training. In so doing, we are effectively setting the system up for failure.”
That disconnect is more disturbing considering how much money the state pays to providers per individual — up to $1,275 a day for home health agencies and $1,000 a day for residential providers, according to the report.
Such trends especially are concerning in a state with one of the highest rates of autism in the country, Aronsohn added. One in every 35 children has autism, and about 122,000 New Jerseyans live with autism, including about 20,000 children and adults with severe autism, according to Autism New Jersey.
“Severe autism is not new, nor is it going away,” Aronsohn wrote in his report. “If anything, the challenge seems to be getting larger, more complex, and more dire. Yet despite all we know about severe autism — the high prevalence and the devastating consequences — we have yet to ‘sound the alarms’ and put in place the infrastructure needed to mitigate this human crisis.”
Aronsohn highlighted several other problems in his report:
- People with intellectual or developmental disabilities tend to have few opportunities for meaningful employment, with only low-paying, low-skilled jobs available to them.
- New Jersey doesn’t have enough day programs to provide them meaningful activities and enrichment.
- Too few medical doctors and dentists accept Medicaid and are trained to treat people with intellectual or developmental disabilities.
Aronsohn’s report isn’t all bad news.
It applauds the state for taking steps to prevent abuse and neglect in residential and day programs by implementing the Stephen Komninos’ Law.
That 2017 law was named after a developmentally disabled man who died in 2007 after choking on a bagel while living in a Cherry Hill group home. It requires unannounced site visits to inspect for abuse, neglect, or exploitation, drug testing of direct-care staff, and timely notification to parents or guardians when incidents occur.
Since the law took effect in May 2018, authorities have added 177 abusive caregivers to a state registry of offenders banned from working with people with intellectual and developmental disabilities, Department of Human Services spokesman Tom Hester said.
Under the law, officials also have made more than 12,000 unannounced site inspections, with almost 46,000 face-to-face visits with residents resulting in 829 reports for follow-up and/or investigation, Hester added.
Coll-Guedes is well-aware of the Komninos law — it’s why she got fingerprinted and drug-tested, even though she’s Alex’s mother and he lives at home.
She supports the spirit of the law, although she wants lawmakers to know it has unintended consequences that hurt her family. Besides requiring her to prove her suitability as a caretaker, the law also requires that nurses get additional training and drug testing to work with adults who are intellectually or developmentally disabled.
Because of a nursing shortage, Coll-Guedes has struggled to find nurses willing to commit to her son’s round-the-clock nursing needs. She’s an art instructor and professor who has worked at Temple University, the Moore College of Art and Design, and elementary schools but has had to cut her hours and give up jobs to care for her son when she couldn’t secure sufficient skilled nursing care.
“The nurses don’t want to take on that extra burden of additional training and drug testing when they can just go work with a baby or teenager or someone who’s not a developmentally disabled adult with all these extra rules,” she said.
“If you’re living in the community in your own house, you shouldn’t be subjected to this law, which makes your life worse,” she added.
Coll-Guedes knows Aronsohn, who she’s reached out to for help. She read his report and saw her own family’s struggles reflected there. They haven’t gotten enough support to hire 24-hour nursing care through an agency, make needed home modifications, or replace their 2011 handicapped van.
“No one planned for Alex’s adult life or care. They just assumed we would put him away,” she said. “The system steers people with the most complex care into group settings, even if they don’t want to live in a group home or nursing home.”
She hopes the report will wake policymakers up to the need for expanded supports for people with intellectual or developmental disabilities.
“My son doesn’t ask for a lot. He just wants to be with the people who care about him in his home. But his needs are more than I can handle,” she said. “We’re so reliant on the state, but the state just sees us as problems.”