Disability rights activists file suit against OPWDD over long standing residential placement issues

Individuals with disabilities who live in institutional settings and advocacy group Disability Rights New York have filed a class action suit against the state Department of Health, Office for People with Developmental Disabilities and their commissioners.

Currently, people with disabilities who are Medicaid recipients can apply through OPWDD for Home and Community Based Services waivers, which allow Medicaid to pay for services it doesn’t normally, such as residential services. People with waivers have the opportunity to live in hundreds of group homes that OPWDD either owns or licenses throughout the state. Such homes are run by the state or private agencies. When someone is looking to be placed into a home, OPWDD will share their information with agencies who choose who to admit future residents based on their needs.

According to advocates, there are typically no vacancies in group homes. The waiting list to get into a group home is thousands of people long; some never make it off.

The suit, filed June 16, alleges that the offices are violating the plaintiffs’ rights to live within their communities by denying them waivers and residential opportunities despite their eligibility being approved; failing to provide fair hearings; and violating the Medicaid Act, the Americans with Disabilities Act and the Rehabilitation Act.

OPWDD and the state Department of Health declined to speak with Crain’s on the pending litigation.

All of the plaintiffs, and thousands of others in the state, according to records, are living in institutional environments such as nursing homes or hospitals they’re ready to leave. According to reports, people get “stuck” in institutions when they arrive for emergencies or because family members have decided there are no other safe options. Because the individuals don’t have a safe place to go after discharge, they stay in the hospital or institution.

Plaintiffs say such environments are inappropriate: There are often no behavioral supports or therapies that people need and no access to wider communities, all of which help people lead fulfilling lives.

One plaintiff who has been diagnosed with bipolar disorder, autism spectrum disorder and other disabilities has been in the isolated Sunmount Developmental Center in Tupper Lake for more than six years waiting for services.

Individuals are often placed into institutional settings with no knowledge of how they work or how long they’ll be there, said Julie Keegan, the Protection and Advocacy for Persons with Developmental Disabilities program director at DRNY.

“[People] are left without any of the comforts of home or familiar foods, without any opportunity at all to engage in their preferred activities or even feel fresh air or sunshine,” she added.

Hospitals and other groups have been raising broad warning flags about this issue for years, a potential indication that OPWDD’s practice of not providing adequate resources and services for those who depend on it has been long standing. Ellis Hospital in Schenectady sent a letter to then-OPWDD commissioner Theodore Kastner in 2020. In 2021, University of Rochester released a report about conditions at its Strong Memorial Hospital, saying people with disabilities had been getting stuck in the facility and other institutions for years.

In April 2021, the Healthcare Association of New York State published a white paper on the issue.

“[People] often need more advanced care upon discharge than when they arrived. Complex case patients with behavioral health disorders and/or intellectual and developmental disabilities are especially vulnerable because their conditions are also often poorly understood,” the report said.

Having patients with disabilities in beds for too long causes issues for hospitals in terms of care delivery, patient safety and staff well-being–and cost. The costs associated with caring for these patients are “extraordinary” according to the paper, because of added specialty care, staff injuries or overtime, legal fees, advanced discharge planning and loss of revenue due to substandard patient turnover. Reimbursement rates for patients who need behavioral health services, such as people with disabilities, continue to be low.

It is substantially more expensive to have people with disabilities staying in hospitals or institutions for too long. The paper states that one New York hospital system estimates that caring for complex patients costs $5,000 per day, and stays for complex care patients “often exceed” 100 days.

In another report example, a 15-year-old arrived at an emergency department after their parents had searched for a safe residential placement for over a year. Their 3+ month stay cost the hospital nearly $200,000, not including $16,000 in legal fees. The hospital was reimbursed only $74,000.

The plaintiffs want OPWDD to provide all named individuals with HCBS waiver services and certified residential opportunities within 60 days; ensure the way the office provides services better prevents institutionalization; give fair hearing rights to any class member who is not given a waiver or opportunities promptly; and more. They also demand a jury trial.

Keegan said DRNY chose to file now because “OPWDD and DOH refuse to take any meaningful action” on the crisis, and because the state’s recently released 5.07 plan “makes vague promises to ‘explore opportunities’ and ‘consider reforms’ but fails to specifically address –or even acknowledge–the thousands of people languishing unnecessarily in institutional settings.”

“State operations should never be permitted to decline to serve an individual in the community after voluntary agencies refuse to provide a community home for the individual,” David J. Abrams, a partner and chair of the pro bono committee at Kasowitz Benson Torres LLP which is also involved in the case, added.

Disability Rights New York, the Protection & Advocacy System and Client Assistance Program for New York which provides people with disabilities and their families free legal help, has the Congress-granted ability to represent people with disabilities in lawsuits. In this case, it is both a plaintiff and representing plaintiffs.

More than 38,000 people currently live in OPWDD residential settings, OPWDD reports. According to Niagara Falls-based services provider Empower, nearly 200,000 people in New York have intellectual or developmental disabilities.—Jacqueline Neber

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