Written by: Christina Mills, Sr. Director of Inclusive Policy & Advocacy
When Dorothy repeatedly tapped her heels and said, “There’s no place like home, there’s no place like home,” and then woke up surrounded by her family in her comfy bed back at home I can’t help but think of all my peers, people with disabilities, regardless of age, who wish they could do the same. Wake up in their own homes in the community they choose to live in.
I’m sure it was no easy win for advocates across the country, Centers for Independent Living (CIL) or specifically the plaintiff’s, Lois Curtis, Elaine Wilson and the disability rights lawyers that represented them, to win the landmark 1999 United States Supreme Court Olmstead Decision. The Decision that furthered the 1990 Americans with Disabilities Act (ADA) and is intended to give people with disabilities the opportunity to live in the community and in our own homes, yet 22 years post Olmstead and nearly 3 years into the COVID-19 pandemic, where we’ve lost, (as of May 2022) 153,054 lives in institutions such as nursing facilities, I have to wonder how many people would still be with us if we were truly implementing the Olmstead Decision.
I bet there have been many people, over these last few years especially, that wished they could tap their heels and wake up living in their own home.
Money Follows the Person (MFP) and Home and Community Based Services (HCBS) are the bread and butter of Olmstead implementation and independent living for many people with disabilities regardless of age. Without MFP and HCBS, living in the community can be impossible. That is why the Olmstead Decision is such a big deal. When the Supreme Court ruled that living in the community needed to be an option for everyone, regardless of disability, it also meant that even if you don’t have the resources to do it on your own, the state would step in and offer an alternative to placing you in a facility, such as a nursing home. Of course, there’s always a catch and in this case, it’s about having enough resources for everyone to live in the community. States don’t have endless funding for people to access community-based living options, but they do have programs that are most often referred to as waivers to help cover HCBS for individuals that need them. Unfortunately, most of the time it takes having an emergency that leaves in you in the hospital to learn about what options exist in your state.
It is rare for individuals or families to know that after breaking a hip, having a stroke, being involved in a life changing car accident or any other type of major life changing situation, going home from the hospital can be an option that includes services and supports to continue living life on your terms. Of course, there are qualification requirements, and some states do a better job than others in making sure that people are informed about what options are available. Fortunately, there are also CIL around the country that not only assist people with disabilities across the lifespan in understanding what programs and services are available to live independently but are also led by people with disabilities who might also be utilizing the services themselves. That type of peer support and leadership is what uniquely positions CILs as advocates to continuously increase and expand what programs and services are needed and should be offered. Like all things, change is inevitable and advocating to keep up with the needs of people with disabilities as we age and live longer is an important part of implementing Olmstead.
During the 10th anniversary of Olmstead I had the honor of inviting one of the Olmstead Plaintiff’s, Lois Curtis, to be a part of Disability Capitol Action Day in California. It was one of the highlights of my career.
Lois identifies as a black woman with multiple disabilities from Georgia. Her Personal Assistant, Hollis, who assists Lois with daily living activities including communication, personal care and meal preparation came with her to California. When I picked them up at the airport, I felt like I was meeting a true VIP. Someone like Elon Musk, but less techy and more civil rightsy. I took Lois and Hollis out to lunch and talked their ears off. I wanted to know everything! When I began asking Lois what life had been like for her over the last ten years she shared that things were good and that she enjoyed being able to do her art anytime she wanted. In fact, she told me she brought a writing pad and would draw my picture for $2.00 if I wanted. She told everyone she met that same thing. In fact, I’m pretty sure that Lois had earned well over $100 by the time she left California.
After a few days with Lois I realized how invaluable the Olmstead Decision really was and is to people like Lois, people like my aging grandmother who I’m constantly convincing doctors after another hip fracture that she’ll be fine at home. That we have services and supports in place. People like me or anyone else with a disability or who is aging into disability. Olmstead is the cornerstone of freedom and choice. Lois didn’t have the choice to do art when she wanted while living in an institution. She had to live by the facilities rules and do what they wanted when they wanted. She was stripped of her freedom to live life the way she wanted. The way everyone should be able to live.
On this 22nd anniversary of the Olmstead Decision I am thankful for Lois, her Co-Plantiff, Elaine Wilson, the lawyers and all the advocates that worked tirelessly to ensure that we can live in the community. There is so much more work to do, but after meeting Lois and Hollis I felt excited and motivated knowing that the Olmstead Decision could make what is often considered the impossible, possible for many. Community-based living, choice and support can happen and you don’t have to wear those hard to find sparkly red high-heels to make it happen.
Implementing the Olmstead Decision will take all of us. Voters, people with disabilities, older adults, family members, allies, other advocates, government, health insurance, providers, etc. For over 23 years I’ve been on the advocate side. As a disabled person, parent, family care provider and paid Independent Living advocate. Last month, I decided it was time to take Olmstead on from another angle. The health care side. There is no wrong place to be when working towards inclusive policy and advocating for “Our Homes, Not Nursing Homes.”
I’m looking forward to moving Olmstead and many other policies forward from a health care position, Senior Director of Inclusive Policy and Advocacy, at Anthem and will keep you posted in other blog posts I contribute along the way.