Kelly Darr, Disability Rights Pennsylvania Kelly Darr, Disability Rights Pennsylvania

This summer marks the 30th anniversary of the passage of the Americans with Disabilities Act. On July 26, 1990, President George H.W. Bush signed the ADA—a comprehensive civil rights statute that prohibits discrimination against people with disabilities in employment and in access to government services and public accommodations—into law. In his signing statement that day, the president described the ADA as signaling "the end to the unjustified segregation and exclusion of persons with disabilities from the mainstream of American life."

Like many celebrations in recent months, the ADA's birthday party will not proceed as many had planned. As states have imposed restrictions to mitigate the impact of COVID-19, disability advocates and organizations scrapped plans for large conferences, parades and rallies to commemorate the anniversary. Nonetheless, the importance of the ADA and disability rights has been center stage in 2020. The worldwide pandemic has brought into sharp focus the myriad ways people with disabilities still encounter significant discrimination in many facets of life.

One persistent area of discrimination is institutionalization. Segregation and congregation of people with disabilities in institutions began nearly 200 years ago. Individuals were warehoused in large institutions, isolated from the rest of society, stripped of their independence and autonomy, and routinely subjected to abuse and neglect.

In 1999, the U.S. Supreme Court ruled in Olmstead v. L.C., 527 U.S. 581 (1999), that Title II of the ADA prohibits the unnecessary institutionalization of people with disabilities. The Supreme Court explained that "institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life." Further, "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment." For these reasons, the court decided that unjustified institutionalization of people with disabilities is discrimination under the ADA.

Although integration of people with disabilities into community life has gained traction, congregate and segregated facilities still exist. In fact, a staggering number of Pennsylvanians with disabilities spend years of their life in institutional settings:

  • More than 45,000 Pennsylvanians live in approximately 1,200 personal care homes, which serve individuals who need assistance with activities of daily living due to age, mental illness, intellectual disability or physical disability.
  • More than 80,000 Pennsylvanians live in approximately 700 skilled nursing facilities. Approximately 15% of those residents are under age 65.
  • More than 2,300 Pennsylvanians live in approximately 170 intermediate care facilities, which serve individuals with intellectual disability and other developmental disabilities.
  • Approximately 1,500 Pennsylvanians live in six state psychiatric hospitals.
  • Approximately 8,000 Pennsylvanians spend their days in sheltered workshops making subminimum wage.

The news of the last few months has been filled with reports of the grave impact that COVID-19 has had on congregate settings, particularly long-term care facilities like nursing and personal care homes. The data is shocking. Nationwide, residents of long-term care facilities account for approximately 10% of COVID-19 cases and over one third of the deaths. In June, the U.S. count of COVID-19 deaths of long-term care residents and staff topped 43,000. In Pennsylvania, residents of long-term care facilities account for nearly 68% of COVID-19 deaths.

Although not as widely reported nor tracked, the impact of COVID-19 in other institutional settings is equally devastating. Intermediate care facilities in Pennsylvania vary in size, with some facilities exceeding 100 residents. Cases and deaths of residents and staff in intermediate care facilities are not publicly reported. Pennsylvania did recently report, however, that people with intellectual disabilities and autism who test positive for COVID-19 die at twice the rate compared to other residents who test positive.

As areas of the state move to yellow and green under the governor's plan, restrictions remain in place in congregate settings. Residents are under restrictions on leaving the facility and having visitors. Some facilities do not have sufficient technology to allow needed communication between residents and their families, advocates and service providers. These restrictions are likely to be in place for a long time, and inevitably will hinder the ability of individuals to move out of these settings into community living.

In addition to the severe diminishment of everyday activities recognized by the Olmstead court, the harm caused by institutionalization in a pandemic world includes heightened risk of death and further curtailment of personal liberty. The cruel irony is that people with disabilities in congregate facilities are some of the most susceptible and vulnerable to COVID-19, and at the same time, the risk they face of contracting the virus is heightened by the congregate nature of the facility itself. To address this, advocates across the country and in Pennsylvania are seeking "emergency deinstitutionalization" of people with disabilities from a wide range of facilities.

As the pandemic wears on, public discussion has turned to the return to a "new normal." Commentators predict we will never fully return to the pre-pandemic way of doing things. Not all change need be a loss. History teaches us that significant societal reformations have followed pandemics of the past. COVID-19 is teaching us that the coming change must include the elimination of segregation and congregation of people with disabilities.

Kelly Darr, legal director at Disability Rights Pennsylvania (DRP), has represented clients in special education, Medicaid, and disability discrimination cases. Prior to joining DRP in 2009, she represented children with disabilities at the Education Law Center.