Someone once said, you can tell how a state values her people by how she supports those with disabilities.
Every state has designated supports or assistance for people with developmental disabilities. Historically those “supports” were provided through isolation and segregation at state run institutions. About half a century ago, states realized that housing people away from their families in isolated institutions and removed from their community was costly, inhumane, and just plain wrong. The Supreme Court agreed in the famous Olmstead decision.
The Olmstead decision said that if a person living in a state funded institution wanted to receive state support/assistance in the community, and it costs equal to or less than the state funded institution, the state must honor that desire and help them live in the community. The Supreme Court instructed states that waiting list are acceptable for people who wanted assistance who wanted to live outside an institution. But the waiting list are required to move at a “reasonable” rate, according to the court’s decision.
Prior to this decision, my home state, Oklahoma, had already created a waiting list for community-based services.
There are many ways to tell the story of the impact of waiting lists on individuals and families: I will share Oklahoma’s story in two: first, through data about the individuals and families affected, and second, through the lived experience of one Oklahoma family. While the data and family story are from Oklahoma, I challenge you to look inside your state and speak to families. You will see this is more than one state and one family situation. In too many states, the lack of support for people with developmental disabilities and their families is widespread and alarming.
DATA: In July of 2009, Oklahoma had 4,885 people on the Developmental Disability Services (DDS) waiver waiting list, with about 37% of those waiting more than three years. At that same time, was serving 5,248 people on their home and community based waiver services. Fast forward to July 2019– Oklahoma had 5,569 people on their waiting list, with 85% waiting more than three years. In 2019, DDS was serving 5,242 people on their home and community based waiver services. That is a decrease of four people receiving waiver services and an increase of 684 people waiting.
Between July 2009 and July 2019, Oklahoma’s state legislature appropriated $5,000,000 specifically to serve those on the DDS waiting list by adding them to DDS waiver services. In addition to the added $5M, the state closed the last two state funded ICF/IID institutions. There were more than 300 people living in both of these institutions. Most of the residents were moved into the DDS home and community based wavier system. Those numbers should have increased the number of people receiving DDS waivers. But the numbers just don’t add up.
LIVED EXPERIENCE: I first met the Smith* family in 2011 at the DDS Wait List meeting, a long-running public meeting coordinated by a family member with support from the Director of the Department of Human Services. The Wait List meeting allows the Director to hear from the families affected. DHS is the state agency in Oklahoma that operates and administers the developmental disability waiver.
At the meeting in 2011, Mr. and Mrs. Smith told their story. Their child, Micah,* had just graduated from high school. Before graduation, the Smiths contacted the school, asking what other supports were available for their child after graduation, since they needed care during the day while both parents worked. The school connected them to the DDS waiver program, which, they quickly learned, had more than a seven year wait for services. The Smiths completed the application anyway. Mrs. Smith had to quit working at her professional job to care for her child, since there was no program available for Micah during the day. This two-income family instantly turned into a one-income family at graduation.
A few years later, I heard from Mrs. Smith that her husband had passed away after a heart attack. This family was devastated. It was now 2015, and Mrs. Smith and her adult child, Micah attended another DDS Wait List meeting to see what progress has been made. At this meeting she shared her family’s heartbreaking story. Several staff members reached out to her and her family to see if there is anything outside of the waiver that could help. There was nothing. It was at this meeting Mrs. Smith learned that people were approaching a 10-year wait for the Waiver. In the summer of 2019, Mrs. Smith and Micah attended another Wait List meeting, where she heard that despite the state legislature’s appropriation of $4 million to work the waiting list, the wait had grown to more than 11 years. Micah continues to wait.
Our state does have a policy for emergency services. The policy requires that the caregiver either be abusing the person with disabilities, or that the caregiver must be dead or dying. The current interpretation of the policy is that if you have two parent/caregivers, and one passes away, you still have one caregiver, so you do not qualify under the emergency criteria.
The story of the Smith family is not an isolated situation. It is global. Change the name, change the city, and it is still the same. This is not only in Oklahoma: these situations and family challenges are in any state that has a waiting list.
I challenge you to look around in your state, and ask: how does your state value people with developmental disabilities and their families? My home state is considered very conservative, a state that values human life, family values, and honors the principle of taking care of those who can’t take care of themselves. But looking at the history of the Wait List, I question those values. I love my state, but I know we can do better for people with disabilities.