Governor Phil Murphy
125 W State St
Trenton, NJ 08608
cc: Shereef Elnahal, M.D., M.B.A.
Commissioner
Department of Health
P. O. Box 360
Trenton, NJ 08625-0360
cc: Carole Johnson, Commissioner
New Jersey Department of Human Services
222 S Warren St,
Trenton, NJ 08608
Dear Governor Murphy,
We are writing you regarding the state of New Jersey’s response to the deaths of eleven children following an outbreak of severe adenovirus at the Wanaque Center for Nursing and Rehabilitation last fall. After reading CMS’ Statement of Deficiencies issued in March, many of the undersigned organizations issued a joint statement calling on the state to investigate and criminally prosecute the neglect which led to the children’s deaths; to implement policies that enable families to care for disabled and medically fragile children at home; and to ensure that survivors of the Wanaque outbreak receive the support they need to live safely in their communities. Now, after viewing the first policy recommendations emerging from the state administration as a response to the tragedy at Wanaque, we write to express our alarm and reiterate our call for meaningful policy change. Only a real and significant expansion of community living services can prevent another such tragedy.
The proposed regulatory and statutory changes are common sense and should of course be implemented. But on their own, they are a shockingly insufficient response to the deaths of eleven children. The undersigned organizations are gravely concerned that this is the only state policy change we have thus far seen proposed. In addition, we note that although statutory and regulatory changes are proposed, no plan is made to implement them – or even to meaningfully enforce existing regulations. In the years before the outbreak, multiple state and federal reports documented the Wanaque Center’s numerous alarming failures, yet the state failed to ensure that these failures were corrected. As a result, eleven children with disabilities are now dead.
These recommendations do not demonstrate an understanding of the systemic policy choices that killed these children, and they do not tackle the root causes of their deaths. No matter the level of disability or medical need, long-established best practices indicate that children do best when they live with loved ones, receive needed care in the home, and are included in their communities. Yet hundreds of children are still warehoused in nursing homes in New Jersey. While they remain there, these children will continue to be at risk, not only of disease – as last week’s report notes, contagious outbreaks are endemic to congregate care – but of being neglected, mistreated, and kept in unsafe conditions, as the residents at Wanaque were for years before the outbreak. If New Jersey wishes to avoid this ever happening again, it must do better.
The Department of Health’s report takes as a given that children with disabilities will be institutionalized and that potentially-fatal outbreaks will continue to threaten them, but the state of New Jersey has other options. As a society, we know how to provide quality support to people with all kinds of disabilities in their homes – including those who are medically fragile, ventilator-dependent, or require daily nursing care. The undersigned organizations offer our significant expertise in state and national policy to assist the state in developing new policies that align with best practices. We know what services and supports are needed in order for children to live with their families at home. Deaths which result from a knowing failure to provide these services and supports are not inevitable – they are policy choices. We call on the state of New Jersey not to make those choices again.
Sincerely,
Autistic Self Advocacy Network
National Council on Independent Living
Little Lobbyists
Center for Public Representation
Disability Rights Education & Defense Fund
American Association of People with Disabilities
Not Dead Yet
Association of Programs for Rural Independent Living
Autistic Women & Nonbinary Network
TASH
Justice in Aging
National Disability Leadership Alliance
National Association of the Deaf
National Coalition for Mental Health Recovery
National Organization of Nurses with Disabilities
Partnership for Inclusive Disaster Strategies
National Down Syndrome Congress
SPAN Parent Advocacy Network
United Spinal Association