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Disability Rights Statement On The Deaths At Wanaque Center for Nursing and Rehabilitation

As people with disabilities and loved ones of people with disabilities, as disability rights advocates, and as human beings, we are horrified by the deliberate neglect which led to the deaths of eleven children last fall at the Wanaque Center for Nursing and Rehabilitation, an institution for medically fragile children. As new reports continue to emerge, we are disturbed by a lack of action to bring justice to the victims, ensure the safety of the survivors, and correct state and federal policies which directly led to these deaths. We call for action to ensure that no more vulnerable children are left to die because of our society’s broken health care system and devaluation of the lives of people with disabilities.

The outbreak of severe adenovirus, which began on September 26, infected 36 children, eleven of whom died. Wanaque had for years been an overcrowded institution where children were routinely left uncared-for, rooms were unsanitary and infested with insects, medical equipment was allowed to rust, and staff did not wash their hands between attending to patients.1Livio, Susan. “Death Stalked the Wanaque Center. Still, They Delayed Sending Kids to the Hospital, Workers Allege.” NJ.com, 8 Nov. 2018, www.nj.com/news/2018/11/kids_died_while_facility_delayed_sending_them_to_h.html;  Sherman, Kent. “Sick Children Were Kept in Bug-Infested Rooms amid N.J. Viral Outbreak, Mom Says.” NJ.com, 24 Oct. 2018, www.nj.com/news/2018/10/sick_children_were_kept_in_bug_infested_rooms_amid.html; Washburn, Lindy. “Adenovirus Outbreak in Wanaque Is over, but State Oversight Remains.” North Jersey Record, 12 Dec. 2018, www.northjersey.com/story/news/health/2018/12/11/adenovirus-outbreak-wanaque-over-but-state-oversight-remains/2276347002/; Washburn, Lindy. “Wanaque Virus Outbreak Report: Dirty Conditions, Empty Rooms and Urine-Soaked Diapers.” North Jersey Record, 19 Dec. 2018, www.northjersey.com/story/news/watchdog/2018/12/18/wanaque-virus-outbreak-inspection-report-describes-dirty-conditions/2339301002/. Wanaque had been investigated in 2016 and 2017 and found to have multiple critical failures in infection control measures —  but these failures were allowed to go unaddressed, ultimately leading to the fall outbreak.2Ducharme, Jamie. “Federal Report Slams Wanaque Center for Adenovirus Outbreak.” Time, 4 Mar. 2019, time.com/5540986/wanaque-adenovirus-federal-report/

The medical director, whose approval was required in order to dispense medications or hospitalize an ill child, was absent and disengaged. In four years as medical director, he had never once met with the institution’s administrator to discuss the residents’ health concerns. He told investigators that he initially dismissed concerns about the outbreak, but that “I knew we had a problem after the fourth death.”3Washburn, Lindy. “’I Knew We Had a Problem after the 4th Death’: Failures Led to 11 Wanaque Center Deaths.” North Jersey Record, 2 Mar. 2019, www.northjersey.com/story/news/watchdog/2019/02/27/wanaque-center-for-nursing-and–rehabilitation-failures-contributed-adenovirus-deaths/2952837002/ .

Once children began to get sick, Wanaque delayed contacting the state Department of Health and the children’s families. Wanaque took no action to separate sick and well children, or to ensure that different equipment and staff were used, until well into the outbreak, when the state ordered them to take these measures.4Washburn, Lindy. “Adenovirus Outbreak in Wanaque Is over, but State Oversight Remains.” Staff refused to bring dying children to the hospital, even after multiple days of high fevers or shock symptoms. Multiple workers at Wanaque told reporters that these delays were due to the management’s determination to keep beds filled and maximize Medicaid revenue.5Livio, Susan. “Death Stalked the Wanaque Center. Still, They Delayed Sending Kids to the Hospital, Workers Allege.”.

In spite of these widely-reported failures, the Wanaque Center now claims that the outbreak and its fatalities were “unavoidable.” After completing a report detailing the Wanaque Center’s negligence, CMS fined the institution $600,000. The fine represents less than $55,000 per dead child. Wanaque contests the report, admits no wrongdoing, and intends to appeal the fine. No criminal charges have been brought, nor are we aware of any criminal investigation into the life-threatening, well-known, and sustained systemic failures which killed eleven children. For the time being, the Wanaque Center is not allowed to admit new pediatric patients – but many of the survivors of the outbreak still live there. They have been left in the care of the same people who demonstrated such complete disregard for their lives during the outbreak. The Wanaque Center’s administrator, medical director, and director of nursing have all kept their jobs.

The state of New Jersey and the federal Medicaid system knew for years that the conditions at Wanaque, where nearly one hundred medically fragile children lived, were dangerous and could easily lead to a fatal viral outbreak, yet they did not intervene until children had died. Medicaid is a crucial support for people with disabilities, but New Jersey has the country’s lowest Medicaid rate, and its extremely restrictive Medicaid program leaves families with few or no options for in-home nursing. Many families are not made aware of options to receive long-term care at home, and families without resources to fight extended appeals are often unable to access services to which they are legally entitled. The state of New Jersey is culpable for allowing the system failure that led to the institutionalization of nearly 100 children at Wanaque in the first place, and for enabling years of child neglect and endangerment which was ultimately fatal. The deaths of these eleven children were a policy choice. New Jersey and CMS must choose differently going forward.

The undersigned organizations call for action in the wake of these cruel and preventable deaths. Those in power at the Wanaque Center must be fired. Their long-term neglect of the children in their care, their decision to continue to allow cross-contamination during a fatal outbreak, and their refusal to bring dying toddlers to the emergency room must all be criminally investigated and prosecuted. The survivors and other residents of the Wanaque Center should receive the support that they need to live safely in their communities.

As advocates for people with disabilities, we refuse to accept as an inevitability our country’s practice of warehousing vulnerable children in places where those in power do not care whether they live or die. 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. The outbreak at Wanaque was uniquely deadly, but the neglect and lack of care that the residents faced is endemic to congregate settings. When we fail to give people with disabilities and their families necessary supports, we are leaving people to die. Enough.

Signed,

Autistic Self Advocacy Network
National Council on Independent Living
The Arc
Little Lobbyists
Center for Public Representation
Disability Rights Education and Defense Fund
American Association of People with Disabilities
Not Dead Yet
Association of Programs for Rural Independent Living
Autistic Women & Nonbinary Network

TASH
National Academy of Elder Law Attorneys
Justice In Aging

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