22-year-old Alex Guedes has been a patient at the Children’s Hospital of Philadelphia for eight months. He is scheduled to return to his family’s home in New Jersey next month. The house is equipped with ramps and other equipment to meet Alex’s needs.
Alex has Down syndrome and other complex medical conditions. He uses a wheelchair for mobility. The family will receive funding from the state to provide in home nursing care. A national nursing shortage is making this difficult.
Many families in New Jersey are struggling to find services for their loved ones. Group homes are struggling to retain staff and there are waitlists. Other families like the Guedes’s can’t find nursing care.
Tim Strubble, 21, spent three months in a New Brunswick hospital before returning to his mother Deborah’s Sussex County home in June. On some days, the single mother receives help from a home health nurse for up to 15 hours. Other days, she has no help. This leaves her alone to clean, feed, and care for Tim, who weighs 200 pounds and requires a wheelchair, feeding tube, and ventilator to breathe. According to her, the state is working to find him an appropriate group home.
65-year-old Bill Noll has cerebral palsy. His mother Sheila is hoping to find another group home for him. The one where he lived previously is no longer an option for him.
“I don’t expect him to dance in the street, but he had a life,” according to his mother Sheila. She recalled how Bill enjoyed the books and programs at his previous group home and made friends. “He had what for him was a life she told NJ Spotlight News.
Medicaid, the state and federally funded public health insurance plan, covers much of the care. Some families have supplemental private insurance policies. parents describe a laundry list of sacrifices, including lost time with other family members and friends, a lack of career advancement, and limited options for self-care.
Deborah Strubble said she slept downstairs on the couch beside Tim’s hospital bed for eight years. She was afraid she wouldn’t hear alarms from his medical equipment if she slept upstairs. When he was in the hospital in New Brunswick, a 90-minute trip from her house, she spent roughly $1,000 per month on parking, gas, and meals.
According to the government, Medicaid supports approximately 25,000 adults with disabilities in New Jersey, including more than 8,000 in group homes or supervised apartments and 14,000 in private homes.
The state also runs five institutions for people with severe disabilities, which house a little more than 1,000 people. These are a last resort if other placements don’t meet someone’s needs.
Despite these efforts to increase capacity, Paul Aronsohn said he meets families in difficulty every day. Since his appointment in 2018, Paul Aronsohn who is the state’s ombudsman for disabled people and their families has regularly lobbied for additional group homes. In particular ones that can serve people with complex medical needs as well as case managers for all families and greater collaboration among government agencies.
Dawn Moeller’s sons all have cerebral palsy. They receive much less nursing care than they are entitled to. Two of them live at home while the other lives on his own. She’s lucky if she has nursing care twice a week for one of them.
She worries about what will happen when they turn 21. The services and supports they currently receive will end. Tyler and Zakary will no longer be eligible to receive care at Nemours Children’s Hospital, in Delaware.
Access to these programs, regardless of availability, remains an issue, according to families. Susan Coll-Guedes fought Human Services officials for months for additional funding to care for Alex at home. During the process, she rejected three group homes recommended by the state as choices for her son, saying they were unclean, chaotic, and completely inappropriate for her son, who needed a ventilator to breathe and a feeding tube for nutrition.
Coll-Guedes, who has assisted other families in navigating the state’s care system, said the continual battle for services, on top of everyday caring tasks, can be daunting. She is currently working on Finally HOME, a multi-partner initiative to raise awareness about the need for more community-based services for persons with disabilities.
Medicaid’s home and community-based services enable disabled people to live at home rather than in an institution. Without access to these services, people can be forced into unsafe environments, which can have devastating consequences.
Stanton, Lilo H. “Thousands of NJ Families Frustrated by Long Wait for Disability Services.” NJ Spotlight News, PBS, 21 Aug. 2023, http://www.njspotlightnews.org/2023/08/thousands-nj-families-frustrated-with-long-wait-for-adequate-disability-services/.