CW: Ableism & Institutional Bias
34 years after The Americans With Disabilities Act was passed, disabled people are still fighting for the right to live in the community. Although there has been great progress made, many disabled people still struggle to live in their communities.
In June 1999, the Supreme Court handed down the historic Olmstead v. L.C. decision, which required all states to end the unnecessary segregation of disabled people and ensure that they receive services in the most integrated environment possible. Two disabled women living in nursing homes in Georgia, the late Lois Curtis and Elaine Wilson, were involved in this case. Curtis and Wilson asked state officials to allow them to live in the community in their own homes.
Susan Jamieson of Atlanta Legal Aid filed a lawsuit on their behalf when the state denied their request. The Supreme Court heard the case after several appeals. Services for disabled people must be offered “in the most integrated setting possible,” according to the Supreme Court ruling.
The number of disabled people living in community settings has greatly increased due to this decision. However, many disabled people still reside unnecessarily in nursing homes, hospitals, and institutions. More than 16,000 people with intellectual and developmental disabilities (IDD) live in institutions in the United States as of 2019.
Garret Frey has been paralyzed from the neck down since childhood. He is now 42-years-old. Frey is no stranger to dealing with bureaucratic policies that affect millions of disabled people.
Garret needed assistance with bladder catheterization and tracheal suctioning while in school. In kindergarten, he went to school with his 18-year-old aunt. The family then utilized the accident insurance settlement and other resources to employ a nurse to help him get through fourth grade.
Garret’s mother petitioned the Cedar Rapids Community School administration to pay for his nursing care in 1993. The administration declined, arguing such services were not part of school healthcare but rather “medical services”.
Lower courts disagreed with the district’s position. In its appeal to the judges, the school district said that it should be free to balance its ability to offer the requested service against its expenses, among other considerations.
In 1999, he went before the United States Supreme Court. “No one argues that these children need services,” Ray Bryant, special education director of Montgomery County told The Washington Post at the time. “But extending services to education like maintaining ventilators and . . . skilled nursing really seems to go beyond what education does.”
Supreme Court Justice John Paul Stevens rejected that appeal. Instead, he relied on the 1984 case Irving Independent School District v. Tatro
which established a two-part approach for determining what “related services” are and what treatment is prohibited.
Parents had to demonstrate that the care was necessary for their child’s ability to attend class. The care had to be provided at school by a nurse or other qualified employee, but not a physician. Stevens said Garret passed both tests.
By a vote of 7 to 2, The Supreme Court ruled that the school district was required to provide Frey with skilled nursing care during school hours. “Congress intended to open the door of public education to all qualified children,” Justice John Paul Stevens wrote for the court at the time. Justice John Paul Stevens also noted that states are “to educate handicapped children with non-handicapped children whenever possible.”
Recently, he was successful when he filed a complaint with federal officials. Frey’s complaint meant the state of Iowa increased Medicaid funding for caregivers to remain overnight with Frey. Otherwise, he may have been forced into a nursing home.
Frey was disabled in an accident at the age of four. He drives his wheelchair with sip-and-puff controls into courtrooms and through the halls of the Iowa Statehouse and the United States Capitol. He then advocates for policy changes that allow disabled people to live full lives. “We’ll get there. It takes time, but I’m not going to just let things go or let things slide,” he said in an interview. His activism has sparked widespread admiration.
“People like Garret are critically important, because they are trailblazers,” said Melanie Fontes Rainer, director of the Office for Civil Rights at the US Department of Health and Human Services. In June, Fontes Rainer’s office reached an agreement with the state of Iowa to resolve Frey’s complaint that Medicaid pay rates were insufficient to hire and retain nighttime caregivers at his home.
Frey said he filed his federal complaint after being turned down by state officials. The final agreement increased his employees’ pay from $15.50 to $22 per hour, according to the federal agency. It also allowed other modifications that would let Frey to stay in the house where he lives with his mother and brother.
Iowa’s agreement to raise Medicaid reimbursement for Frey’s caregivers has allowed him to hire additional overnight staffing. However, he still doesn’t have a caregiver some nights. When no outside help is available, his mother takes care of him. Even though she can be paid , she no longer wishes to do so. “She should be able to just be my mom,” he told KFF Health News.
At a recent board meeting of The Arc of Iowa, a disability rights organization, Frey informed his friends that he is considering applying for a civil rights position with the federal government or running for public office. “I’m ready to rumble,” he remarked.
Disabled people have the right to live in their communities. Disabled people should be able to make decisions and live their lives like nondisabled people do. It shouldn’t take legal action to allow disabled people to live their lives.
Sources:
Biskupic, Joan. “Disabled Pupils Win Right to Medical Aid.” The Washington Post, WP Company, 4 Mar. 1999, http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/stories/court030499.htm.
Katsiyannis, Antonis. ‘Education and the Law: School Health Services: Cedar Rapids Community School District v. Garret F’. Preventing School Failure, vol. 44, no. 1, Taylor & Francis Inc., 1999, p. 37.
Leys, Tony. “Disability Rights Activist Pushes Government to Let Him Participate in Society.” KFF Health News, KFF , 23 Aug. 2024, kffhealthnews.org/news/article/disability-rights-activist-iowa-federal-policy-caregiver-pay/.
Larson, Sheryl A., et al. Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2019. The Institute on Community Integration , The University of Minnesota 2022.
Roberts, Sam. “Amber Tatro, Whose Suit Gave Rights to Disabled Students, Dies at 42.” The New York Times, The New York Times, 14 Aug. 2018, http://www.nytimes.com/2018/08/14/obituaries/amber-tatro-whose-suit-gave-rights-to-disabled-students-dies-at-46.html.
Shapiro, Joseph. “Lois Curtis, Who Won a Landmark Civil Rights Case for People with Disabilities, Died.” NPR, NPR, 5 Nov. 2022, https://www.npr.org/2022/11/05/1134426128/lois-curtis-who-won-a-landmark-civil-rights-case-for-people-with-disabilities-di.
Shapiro, Joseph. “A Hospital Is Suing to Move a Quadriplegic 18-Year-Old to a Nursing Home. She Says No.” NPR, NPR, 22 Feb. 2024, http://www.npr.org/2024/02/22/1232463580/teen-hospital-lawsuit-disability-rights.
Vitello, Stanley J. ‘The Tatro Case: Who Gets What and Why’. Exceptional Children, vol. 52, no. 4, SAGE Publications Sage CA: Los Angeles, CA, 1986, pp. 353–356.