In a proposed class-action lawsuit, the New York Department of Health (DOH) and the New York State Office for People with Developmental Disabilities (OPWDD) are both accused of withholding services and statutory rights by leaving disabled individuals to “languish” in institutions.

The complaint argues that New York has “failed to develop an adequate method to administer certified community-based residential opportunities,” leaving eligible and willing individuals “wrongly and illegally institutionalized.” The state, allegedly, gives providers a voluntary opportunity to provide individuals with Home and Community Based Waiver (HCBS) services “rather than incentivizing or compelling providers to do so.” These care providers are mostly run by non-profits.

The HCBS Waiver program was created by Congress through a 1981 addition of Section 1915(c) to the Social Security Act. It was added to the Act to waive certain Medicaid requirements to enable the development of specialized community-based programs and services for people with intellectual and developmental disabilities and therefore prevent unnecessary institutionalizations. An individual must be enrolled in Medicaid and must reside in a supportive, eligible community residence, which does not include hospitalization or certain nursing homes.

States may choose whether they want to participate in the Medicaid program which provides certain health benefits to low-income individuals in a joint federal-state system. The law requires states, if they participate, to provide “medical assistance” with “reasonable promptness to all eligible individuals” and to provide “an administrative fair hearing” to those appealing any denial decisions.

In New York, “OPWDD maintains the successful day-to-day operation of the HCBS Waiver, while DOH, as the oversight agency, is responsible for evaluating OPWDD’s performance.” HCBS Waiver services include case management assistance, habilitation services, pre-vocational services, and certain pathways to employment.

The plaintiffs named in the lawsuit, claim that not only were they not provided HCBS Waiver services, but they were also denied a fair trial to prove their eligibility. This denial of services and the right to request those services in a fair hearing is a denial of their “federal statutory right to reside in less-restrictive community-based residential settings.”

The lawsuit was filed by the Disability Rights New York (DRNY), a legal not-for-profit corporation that was originally incorporated under the name Disability Advocates, Inc. in 1989. Their sole mission is to provide “Protection and Advocacy services.” DNRY was formally designated as New York State’s Protection and Advocacy and Client Assistance Program in 2013.

DNRY Executive Director Timothy Clune commented that “People who are approved for community-based services languish in hospitals, nursing homes, and intermediate care facilities” as a result of the DOH and OPWDD’s handling of these programs and benefits.

Under the federal Rehabilitation Act and Americans with Disabilities Act, public entities must administer the services and benefits available to integrate people with disabilities into the community. This lawsuit is claiming that the state has withheld these services and benefits from those with disabilities, keeping them even farther away from assistance.

Title II of the Americans with Disabilities Act states that “no qualified individual with a disability shall, because of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity.”

Individuals are also protected from discrimination based on their disability under Section 504 of the Rehabilitation Act of 1973. This law applies to employers and organizations including, hospitals, nursing homes, mental health centers, and human service programs. The law mandates that individuals with disabilities receive an equal opportunity to receive program benefits and services for agencies that receive federal financial assistance.

T.C., one of the eight plaintiffs in the case, is a 21-year-old man who is “autistic and has a moderate intellectual disability.” He was hospitalized on December 10, 2021, after an episode of unsafe behavior. Prior to being institutionalized, he had lived with his mother. The treatment team at the hospital determined he was ready for discharge a few weeks after he was admitted. However, OPWDD “did not make its first referral for potential placement for T.C. until on or about February 7, 2022.” T.C. still remains in the hospital and because of this is prevented from receiving any HCBS Waiver benefits.