Frontline Initiative: Advocacy and Voting
"To Go Where Everyone Else Has Gone Before"
Holly Riddle
The role of direct support professionals in making the promise of Olmstead v. L.C. a reality for the people they support
Have you ever watched those shows on TV about how big the universe is and how infinitesimally small you are? Have you ever felt like you were doing something good at work but could not shake a nagging feeling that, beyond that one person or one assignment, you were a grain of sand blown by winds and tossed by waves? Have you ever felt adrift, unmoored, and plain disconnected from your profession? I know I have.
That changed, though, when I got involved with a statewide plan about a United States Supreme Court decision. The decision is Olmstead v. L.C.(Olmstead).[1] As I started to work on this assignment, I began to realize that Olmstead was transforming the way that I saw my work. It reinvigorated and anchored the deep convictions that had first drawn me to the field of disability. I was seeing what I did clearly, through a distinct and sharper lens, an “Olmstead lens.”
Seeing your role as a direct support professional (DSP) through an “Olmstead lens” can ignite professional passions and may even spark a calling to be part of a movement that is strengthening the quality of our work and urging us toward whole community.
As an attorney, I spent years reading landmark legal decisions. But Olmstead was different. It was the most important civil rights decision for people with disabilities of our lifetime. Olmstead probed the depths of what mattered most to me: the human and legal rights of people with disabilities; communities inclusive of us all; the distinct and critical importance of the direct support workforce; the respect and dignity that everyone deserves; and the mutual interdependence that makes each of us part of community, state, and nation. Olmstead was pulling our field toward a common and profoundly important goal: community integration for everyone. I was doing something that mattered after all. The Olmstead decision alters the viewpoint of those who come into contact with it. Seeing your role as a direct support professional (DSP) through an “Olmstead lens” can ignite professional passions and may even spark a calling to be part of a movement that is strengthening the quality of our work and urging us toward whole community.
What is Olmstead?
Under the Americans with Disabilities Act (ADA), publicly funded programs are required to carry out services, programs, and activities in “the most integrated setting appropriate to the needs of qualified individuals with disabilities.” On June 22, 1999, in Olmstead v. L.C., the U.S. Supreme Court ruled that the ADA’s “integration mandate” had a particular and powerful meaning.[2] Justice Ruth Bader Ginsburg wrote that the “unjustified segregation” of people with disabilities is a form of unlawful discrimination.[3] Under Olmstead, people with disabilities who are residing, receiving their education, or working in a publicly funded, congregate setting have the right to live their lives alongside everybody else in the community.
The “law of the land” in Olmstead is transformative, but not without precedent. There’s another U.S. Supreme Court case that many of us lived through: Brown v. Board of Education. It too is a beacon for inclusion. In a 1954 decision that surged through American society, Brown decreed that racial segregation of children in the country’s public schools must end. A year later, Chief Justice Earl Warren instructed states to implement desegregation plans “with all deliberate speed.”[4] Years later, we still feel Brown’s mighty ebb and flow, and have been deeply altered as a society. In June 1999, the Supreme Court again considered segregation, but the context differed from Brown. But Olmstead v. L.C., like Brown v. Board of Education, will change us forever. No longer would people be forced to go into an institution or other setting segregated from mainstream society to receive the services and supports they need to live an ordinary life. Olmstead empowers people with disabilities to assert, without apology, their civil right to be a full part of the community.
The story behind Olmstead
At the center of the Olmstead decision were two women from Georgia: Lois Curtis and Elaine Wilson. Both had multiple disabilities. Both lived in institutions. And both wanted out. Life in an institution had cut the women off from family, friends, and community, a situation that many people with disabilities know all too well. As Elaine put it, “When I was in the institution, I felt like I was in a little box and there was no way out.”[5] Lois lived in a psychiatric hospital far from home and would call Atlanta Legal Aid’s Sue Jamieson, asking over and over, “When can I get out of here?”[6] Notably, professionals agreed that Lois and Elaine could live in the community if they had the right services. That assertion, the women’s determination, the ADA’s integration mandate, and legal developments in other states led Sue and others to file a lawsuit with Lois Curtis (L.C.) as the plaintiff. The Atlanta Legal Aid Society later added Elaine. The case was against the Georgia Department of Human Resources, naming the department’s Commissioner Tommy Olmstead as the defendant. Eventually, the State of Georgia appealed to the U.S. Supreme Court. But it was Lois and Elaine who prevailed.
In the Court’s decision, Justice Ginsburg detailed a three-part test that would change the lives of people with disabilities, defining when a person has the right[7] to receive services in the most integrated setting appropriate to their needs.[8] The Olmstead ruling altered the course of Lois’ life. In 2007, Lois received the Harriet Tubman Act of Courage Award. In 2011, she met President Obama, presenting him with one of her paintings. Today, Olmstead v. L.C. continues to reshape disability policy, practices, and services. Olmstead’s impact on us is every bit as dramatic as that of Brown v. Board of Education.[9]
In the years that have followed the Olmstead decision, the United States Department of Justice and the U.S. Department of State’s Office of Civil Rights have made preventing discrimination against people with disabilities and protecting the right to community integration central to their work.[10] As a result of lawsuits, leadership, and grassroots advocacy, thousands of people across the country have transitioned from institutions to the community. Many others who were at risk of institutionalization have avoided entering a congregate setting in the first place.
What does Olmstead mean for direct support professionals?
Olmstead is a big story. But perhaps you are asking, “What does this have to do with me and other direct support professionals?” The answer is, “A lot.”
In the quarter-century since Olmstead was decided, states have strived to ensure that disability service delivery systems align with the Court’s mandate. Many have developed Olmstead plans as roadmaps to the community. These plans, particularly post-pandemic,[11] highlight the vital importance of direct support professionals. States are advancing strategies for creating a 21st century frontline workforce to help remedy discrimination against people with disabilities.
John F. Kennedy, Jr. (1960–1999) anticipated the era of Olmstead in 1996 when he wrote, “Quality is defined at the point of interaction between the staff member and the individual with a disability.”[12] His words inaugurated a vibrant, national conversation that is still underway. At its heart is this question: What policies and practices will recruit, train, and retain an adequate supply of DSPs ready to deliver high-quality services and supports? The answer begins with professionalizing the field of direct support. Olmstead’s emphasis on community settings changed things for DSPs. New settings in a new era demand a new sort of DSP.
Let me give you an example. When you work in an institution and need to know how to do “this or that,” but you can always turn to a colleague or supervisor. Not so in someone’s home. When it is just you—the DSP—and the person you are supporting, you have to have a certain “know-how” and skills. Employers get this. They have had to find effective ways to secure high-caliber training on those core competencies necessary for DSPs to support people with diverse needs in a variety of settings. When your employer is a family or a person with a disability, the stakes are even higher. You may be the first DSP, or among the few, they’ve ever hired. DSPs need to get it right. Quality has become, as JFK, Jr. envisioned, the touchstone of frontline service delivery in the Olmstead era.
The premium on quality has elevated the direct support profession. With Olmstead favoring services in the community over institutions, many DSPs are already accessing competency-based, online education tailored to community settings and often delivered, conveniently, to a DSP’s smartphone. In 2007, the National Alliance for Direct Support Professionals (NADSP) began to award DSPs a nationally recognized credential to distinguish this new level of professionalism.[13][14] If you’ve been certified as DSP-I, DSP-II, or DSP-III, employers and the people you support know what they are getting, wherever you go. The 21st century DSP is a highly trained, credentialed professional who has mastered ethical, effective skills and approaches. This professional advances the human and civil rights of people with disabilities.[15] Collectively, this professionalized workforce opens the door to quality services and community and is Olmstead in action.
No secret to you: Our field is in crisis. There’s a severe, nationwide shortage of DSPs. States are adopting, out of necessity, practices that strongly favor this crucial workforce. Realizing that experience matters, states have begun to compensate DSPs and supervisors who have mastered work-related competencies. Standards and expectations for DSP apprenticeship, along with frontline supervisor training, emerged.[16] These and other changes in business practices will lead us out of this crisis by creating a viable career ladder and a living wage for the profession. This is also Olmstead in action.
Olmstead depends on competent, committed direct support professionals
Not everyone chooses to live in a community. Many remain in institutions, with the staff employed there. States are obligated to tell people in congregate settings that, under Olmstead, they have the right to return to the community. In many places, though, waiting lists for services are long. DSPs are scarce, services are limited, and accessible housing is hard to find. People with disabilities, including those re-entering community from the justice system, face these and other challenges. Families who have members with a disability living at home often experience long waits for services. For aging parents and older adults, it becomes harder, if not impossible, to manage without DSPs. Those at risk of entering an institution are also part of the Olmstead population. Whether people are in an institution or at risk of going into one, thoughtful conversations must take place. Informed DSPs can assist people to explore options and direct the course of their own lives.[17] Seeing what you do through an “Olmstead lens” is critical if people are to have a real chance at being part of a community.
Years ago, at a disability rights conference, I saw a t-shirt with this slogan on it: “To go where everyone else has gone before.” The idea was so ordinary and yet so powerful. As we approach the 25th anniversary of the Olmstead decision, people who were in institutions for decades are living “every day,” even enviable,[18] lives in their own homes and communities. Others are growing up and growing old, never having been separated from friends and family. Making Olmstead’s promise real is not possible without competent, committed DSPs. So, the next time you feel a twinge of doubt about your importance, remember, you are the frontline of justice, inclusion, and full community participation. You are Olmstead in action.
References
[1] Rights, O. F. C. (2023, July 31). Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead. HHS.gov. https://www.hhs.gov/civil-rights/for-individuals/special-topics/community-living-and-olmstead/index.html . The legal citation is Olmstead v. L. C., 527 U.S. 581 (1999). (n.d.). Justia Law. https://supreme.justia.com/cases/federal/us/527/581/#
[2] Questions and Answers on the Application of the ADA’s Integration Mandate and Olmstead v. L.C. to Employment and Day Services for People With Disabilities; Notice of Availability. (2023, November 13). Federal Register. https://www.federalregister.gov/documents/2023/11/13/2023-24989/questions-and-answers-on-the-application-of-the-adas-integration-mandate-and-olmstead-v-lc-to
The Department of Justice interprets “the most integrated setting appropriate” to mean one that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible.” Guidance on ADA Regulation on Nondiscrimination on the Basis of Disability in State and Local Government Services, https://www.law.cornell.edu/cfr/text/28/appendix-B_to_part_35 (addressing 28 C.F.R. § 35.130; 28 CFR 35.130 General prohibitions against discrimination. (n.d.). https://www.ecfr.gov/current/title-28/chapter-I/part-35/subpart-B/section-35.130 ).
[3] Rights, O. F. C. (2023b, July 31). Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead. HHS.gov. https://www.hhs.gov/civil-rights/for-individuals/special-topics/community-living-and-olmstead/index.html
[4] Brown v. Board of Education (1954). (2021, November 22). National Archives. https://www.archives.gov/milestone-documents/brown-v-board-of-education
[5] See Elaine Wilson’s obituary at https://www.legacy.com/us/obituaries/atlanta/name/elaine-wilson-obituary?id=51064723 . For more about Lois’ life and death, see the New York Times article of November 10, 2022 at https://www.nytimes.com/2022/11/10/us/lois-curtis-dead.html
[6] Sue, Lois, and Elaine - Olmstead Rights. (n.d.). https://www.olmsteadrights.org/iamolmstead/history/item.5403-Lois_Curtiss_Story_Continued
[7] The right to receive state-funded services in the community instead of an institution requires that a three-part test is met: People with disabilities have a “qualified right” to receive state-funded supports and services in the community rather than institutions when: 1) the person's treatment professionals determine that community supports are appropriate; 2) the person does not object to living in the community; and 3) the provision of services in the community would be a reasonable accommodation when balanced with other similarly situated individuals with disabilities. Olmstead decision. (n.d.). https://www.olmsteadrights.org/about-olmstead/
[8] Rights, O. F. C. (2023c, July 31). Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead. HHS.gov. https://www.hhs.gov/civil-rights/for-individuals/special-topics/community-living-and-olmstead/index.html
[9] Ibid.
[10] Rights, O. F. C. (2021, November 1). OCR Olmstead Enforcement success Stories. HHS.gov. https://www.hhs.gov/civil-rights/for-providers/compliance-enforcement/examples/olmstead/index.html
[11] See Providing Support During the COVID-10 Pandemic at https://ici-s.umn.edu/files/_9-neK-xR6/national_dsp-covid-6-month
[12] John F. Kennedy, Jr. has been called the ideological founder of the National Alliance for Direct Support Professionals.
[13] NADSP. (2021, December 10). Our history - NADSP. NADSP - Making a World of Difference in People’s Lives. https://nadsp.org/about-us/our-history/#:~:text=1996,City%20University%20of%20New%20York
[14] NADSP. (2023, March 10). Certification - NADSP. NADSP - Making a World of Difference in People’s Lives. https://nadsp.org/services/certification/
[15] NADSP. (2022, May 24). The NADSP Code of Ethics - NADSP. NADSP - Making a World of Difference in People’s Lives. https://nadsp.org/resources/the-nadsp-code-of-ethics/
[16] NADSP. (2021, December 10). Our history - NADSP. NADSP - Making a World of Difference in People’s Lives. https://nadsp.org/about-us/our-history/#:~:text=1996,City%20University%20of%20New%20York
[17] Ibid. See also Dama, N. (2023, November 9). Virtual Training: Understanding Informed Decision Making for Direct Support professionals. NADSP - Making a World of Difference in People’s Lives. https://nadsp.org/virtual-training-understanding-informed-decision-making-for-direct-support-professionals/
[18] I first heard the phrase “an enviable life” from Ann and Rud Turnbull, describing the life of their son, Jay, a man with significant disabilities. The Turnbulls’ vision of lives of self-determination and joy, enriched by friends and family quality of life, has long stood for me as “the promise of Olmstead.” See The Exceptional Life of Jay Turnbull: Disability and Dignity in America 1967-2009: H. Rutherford Turnbull: 9780966260298: Amazon.com: Books. (n.d.). https://www.amazon.com/Exceptional-Life-Jay-Turnbull-Disability/dp/B005FFUED8/ref=sr_1_2?s=books&ie=UTF8&qid=1344450049&sr=1-2&keywords=The+Exceptional+Life+of+Jay+Turnbull%2C+Disability+and+Dignity+in+America+1967-2009