Erin Taylor, PhD is a disability advocate and mom to five young adults, including Henry who has been on the Waiting List since 2010.
There is a certain amount of hustle commonly involved in raising a child with a developmental disability. As parents, we’re managing special education plans, medical appointments, and specialty therapies. We become familiar with Social Security long before our own retirements.
But there is one experience where endurance, and not hustle, is called for: The Waiting List. The Waiting List is the ODKHS-managed queue of individuals and families waiting for access to needed services. These services, provided by the Home and Community Based Services (HCBS) waiver, allow Oklahomans with developmental disabilities to live in homes of their choosing rather than state-funded institutions. Those institutions, for the most part, shut down in 2014 as both less humane and more costly settings for persons who needed significant daily living supports.
As a mom to a young man with an intellectual disability, I’m relieved. Admittedly, I’m often uncertain what his independence and adulthood will look like. But I never once accepted institutionalization as a reasonable option. My son, as a consumer and taxpayer, and as a community volunteer, enriches our community. Due to his disability diagnosis, he is eligible for an HCBS. Yet for all intents and purposes, he might as well be eligible to live in a pineapple under the sea.
HCBS are Medicaid supports funded by the federal government at between 60 and 70 percent, depending on the annual federal matching rate. Then, the remaining costs are funded by the state Legislature with OKDHS prioritizing in their budget that they will address HCBS requests. Here is where the interminable and infuriating Waiting List was born: The Legislature consistently chose not to earmark sufficient funds to allow OKDHS to serve all those applying for waiver services. In turn, OKDHS, imploding under multiple care obligations, did not direct significant budget dollars to reducing the wait.
Given the current rate of funding, the wait for a HCBS in Oklahoma is over twelve years. At the Legislature’s January 30th OKDHS budget hearing, Director Ed Lake reported the average wait was 7.3 years. This offers false hope to our families whose loved ones are waiting for HCBS services. The mean time is 7.3 years if you average all 5,872 families — those who have been waiting over 12 years years with those who joined as recently as last month. It doesn’t change the fact that each family should plan for at least a decade-long wait unless HCBS receives significantly more state dollars.
What other state-sponsored service expects individuals to wait more than a decade? And who are we as a state when we ask this very thing of our most vulnerable citizens?
Last year, Waiting List families were well aware that OKDHS didn’t have any pennies to spare. In droves, we spoke to their legislators about how the chronic lack of disability supports eroded our financial and familial stability. Imagine our disheartened surprise when we discovered OKDHS had requested zero dollars in dedicated funding for removing families from the Waiting List. Instead, the agency explored how the Waiting List might be restructured with new criteria for prioritizing those waiting. It was as if they were drawing up home remodeling plans while the house was on fire. In the meantime, families were asked to be patient and trusting. Again.
Ultimately, the newly formed Waiting List Caucus, led by Representatives Jon Echols and Cyndi Munson, along with other legislative champions, secured $2 million in funding to begin moving individuals off the Waiting List and on to waiver services. It was the largest appropriation increase in Waiting List history.
This year, the bipartisan Waiting List caucus will proceed with nearly twenty House and Senate members. Their sole task is to increase funding so as to remove people from the Waiting List in order of their application date. At the January budget hearing, OKDHS reported they have requested $3M for the Waiting List but this includes reprioritization efforts — whatever those may cost. By their own calculations. reported in numerous public settings, every $1M removes 80 to 100 people from the Waiting List and onto services. This means OKDHS must have $59M to $74M to eliminate the Waiting List. It will also require another $90M to hire approximately 500 workers to manage these 5,872 cases, according to figures cited at a stakeholders meeting last fall.
The truth is that over 1,500 families currently on the list have waited ten years or longer. They represent 25 percent of the entire Waiting List. My son will join this group this year — a milestone we hardy consider grounds for celebration.