In New Jersey, the state’s disability ombudsman released a report on Tuesday that highlighted more losses than accomplishments in the way the state assists people with disabilities.
The ombudsman’s annual report dubbed state programs for people with disabilities “a tale of two systems.” On the one hand, committed individuals have recently secured a number of victories.
such as getting supplementary schooling and therapy for students with disabilities pushed off course by the pandemic. They also were successful in passing legislation that eliminated Medicaid benefit-related restrictions on the employment of those who are disabled based on their age and income.
However, while the governor’s office’s increased interest in disability issues has resulted in some progress, including an additional $1 billion in funding for community and care programs, a lot of work has to be done, according to Ombudsman Paul Aronsohn.
The report is filled with examples of the toll a rigid system plagued by inadequate policies can take on people’s lives.
The report focused on four areas where the state keeps getting it wrong, said Aronsohn. Among those issues is a labor shortage among those who care for some of the state’s most medically fragile residents.
Sam, a 4-year-old boy with a rare neurological disease who is ventilator dependant and has epilepsy, is cared for by his mother, Sarin Morris, in Clifton, New Jersey. He is supposed to receive 20 hours of nursing care daily, but he has never had enough nurses.
Unfortunately due to the shortages, some residents face abuse and neglect in their homes. Aidan Burke came to school in May 2022 with scabbed-over scratches on his chest, grayish bruises on his back, and a deep, strawberry-red abrasion line circling his neck. The 19-year-old young man with autism cannot speak, leaving the origin of his injuries a mystery. All Aidan’s mother knows is that he must have been injured at his Oaks Integrated Care group home in Sicklerville NJ, and she is determined to find out who is responsible.
The report also highlights the critical need for better services for autistic people. According to a Rutgers study, documented cases of autism spectrum disorder (ASD) increased by up to 500 percent in the New York-New Jersey metro region between 2000 and 2016. The greatest increase was found to be among children without intellectual disabilities.
The last issue discussed in the report is the state’s shortcomings in caring for those with complex medical needs.
Abi Insley suffers from a life-threatening seizure disorder, legal blindness, kidney disease, severe respiratory problems and limited mobility after she was abused as an infant, according to her adoptive mother Dana Insley. She sees 13 specialists.
Abi is approved for 112 hours of private-duty care per week under a federal benefit managed by Medicaid. Her mother says she only receives about 55 hours each week due to a staffing shortage.
Not having a nurse means that Abi can’t go to school, and also misses therapy sessions.
Michael Fiore has Cerebral Palsy and epilepsy. Fiore has lost two nurses between April of 2021 and October of 2022. Last year one of his nurses left her job. She had been caring for the now 20-year-old for more than a decade.
Disabled people need services and support. Their lives depend on it. Care can’t wait, because people’s lives are at risk.
Sources
Alcorn, Ted. “To Keep Their Son Alive, They Sleep in Shifts. and Hope a Nurse Shows up.” The New York Times, Alcorn, Ted. “To Keep Their Son Alive, They Sleep in Shifts. and Hope a Nurse Shows up.” The New York Times, 4 June 2021, https://www.nytimes.com/2021/06/04/health/nursing-shortage-disabled-children.html.
Bruno, Gregory. “Study Logs Five-Fold Increase in Autism in New York-New Jersey Region.” Rutgers University, 26 Jan. 2023, http://www.rutgers.edu/news/study-logs-five-fold-increase-autism-new-york-new-jersey-region.
Llorente, Elizabeth. “Inside N.J.’s in-Home Nursing Shortage. A Crisis Intensifies as Families Beg for Lifelines.” NJ.com, 14 Oct. 2022, http://www.nj.com/healthfit/2022/10/inside-njs-in-home-nursing-shortage-a-crisis-intensifies-as-families-beg-for-lifelines.html.
Livio, Susan K. “Abuse of Disabled People in N.J. Group Homes Persists as Accountability Lags, Watchdog Says.” NJ.com, 25 May 2022, https://www.nj.com/news/2022/05/abuse-of-disabled-people-in-nj-group-homes-persists-as-accountability-lags-watchdog-says.html.
Myers, Gene. “NJ Makes Strides but State Still Failing in Care of People with Disabilities, Report Says.” NorthJersey.Com, 1 June 2023, http://www.northjersey.com/story/news/new-jersey/2023/06/01/nj-residents-with-disabilities-in-crisis-report-finds/70274230007/.