People With IDD Wrongly Forced Into Nursing Homes, Scathing Report Says
ISELIN, N.J. — At least 2,000 people with developmental disabilities in New Jersey are housed in nursing homes “contrary to their wishes” and in violation of their constitutional rights because the state does not properly evaluate their needs or give them the option of living more independently in a group home, a new report has found.
The New Jersey Department of Human Services has allowed this problem to fester partly because it doesn’t keep track of how many people with developmental and intellectual disabilities actually live in nursing homes, the legal advocacy group Disability Rights New Jersey wrote. Its critical 101-page report, released last week, is based on interviews with hundreds of residents from 70 nursing homes and their guardians.
Human Services reported to Disability Rights New Jersey last year that 587 people with developmental disabilities resided in nursing homes, the report said. Based on its own research, Disability Rights New Jersey said the figure is much higher, with 2,000 a “conservative estimate,” Executive Director Gwen Orlowski said.
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Far too many people with developmental disabilities — such as autism, Down syndrome and cerebral palsy — are housed in nursing homes, partly because of New Jersey’s “irrevocably broken” evaluation system, which fails to do what it should: “divert people with developmental disabilities from nursing homes whenever possible,” according to the report.
The shortage of community housing is another factor in the stubbornly high number of people with disabilities in nursing homes, and the decision to close two institutions for people with developmental disabilities a decade ago exacerbated this shortage. Gov. Chris Christie’s administration closed the state-run North Jersey Developmental Center in Totowa and the Woodbridge Developmental Center in Woodbridge in response to a lawsuit Disability Rights New Jersey filed to force the state to reduce the number of people with disabilities it institutionalized and to provide more community housing.
The settlement required 600 people from developmental centers to be placed into community housing, like supervised apartments and group homes, which the state accomplished years ahead of schedule. But since then, nursing homes gradually became the default housing option, the report said.
“People with intellectual and developmental disabilities are forced into nursing homes and are thus denied interactions with non-disabled people. A choice of one — a nursing home — is not a choice,” the report said.
And for those who choose to live in nursing homes, the report said, they are often denied the specialized services they are entitled to that would make their lives more comfortable and more meaningful.
“New Jersey’s facilities evoke a hospital-like environment with traditional staffing models that are not conducive to a person-centered planning or a delivery model for all residents, including people with intellectual and developmental disabilities,” according to the report. “And until the model is substantially redesigned, many nursing homes are dismal places for anyone to live.”
Disability Rights New Jersey named only one nursing home as an example of this dismal existence: the Woodland Behavioral and Nursing Center in Andover, Sussex County, which the Murphy administration closed last year after a litany of complaints emerged during the pandemic, including mismanagement, infection control deficiencies and numerous violations residents’ civil rights. State data says 47 people with developmental disabilities lived at Woodland, according to the report.
“Disability Rights NJ saw the importance of having an already existing supply of housing available for nursing home transitions through our investigation at Woodlands. Nearly all residents were transferred to other nursing homes rather than home and community based settings, simply because there were no choices in the community,” according to the report.
Disability Rights New Jersey suggested ways to make the system “truly individualized and person-centered.” These recommendations include “radically” changing Human Services’ evaluation system for housing and other important services and maintaining a database tracking how many people with disabilities live in nursing homes. It suggests state Health Department surveyors be trained on how to properly evaluate the needs of residents with developmental disabilities so they can identify civil rights violations during inspections.
Human Services spokeswoman Eva Loyaza-McBride said the department “welcomes Disability Rights New Jersey’s advocacy, appreciate their work in serving as a resource for individuals and families, and are reviewing this report.” But some improvements efforts are underway, she said.
The state budget this year includes more than $13 million to develop more housing for people with developmental disabilities who live in nursing homes. The department is consulting with federal regulators on how to refine the evaluation process, formally called the Pre-admission Screening Resident Review.
“We’re strengthening and prioritizing independence, community options and person-centered care, and are steadfast in that commitment,” Loyaza-McBride said.
Orlowski credited the department for being “100% cooperative with this report” and the findings “we brought to their attention. We need the input of people with disabilities, families — everyone’s voice to be part of solving this problem.”
Mercedes Witowsky, executive director for the New Jersey Council on Developmental Disabilities, which funded the study, said the research should serve as a blueprint as to how to fix the system.
“We now have the data and recommendations to improve services and supports for people living in nursing homes and prevent unnecessary placement into nursing homes,” Witowsky said. The council’s “focus on advocacy, capacity building and systems change has taken a very large step today and we will do our part to bring forth sustainable improvements that will benefit people with disabilities and their families.”
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