Take a number: Oklahomans with disabilities face devastating delays

Earlier this month, Missouri Governor Jay Nixon announced he would pledge $24 million to move people with developmental disabilities off the waiting list to receive home- and community-based services. Governor Nixon’s pledge will bring specialized medical equipment, therapy, job preparation, respite care and independent living skills to over 900 of Missouri’s most vulnerable citizens – about two-thirds of the children and adults in the queue.

“Our friends and neighbors will now get the life-changing services they need, when they need them,” Nixon said.

If only that were true in Oklahoma.

At a December 2013 meeting, the Developmentally Disabled Services Division (DDSD) of the Oklahoma Department of Human Services reported that the list of individuals with developmental disabilities in Oklahoma waiting for assistance was at 6,998. The applications of people who’d gotten in line in 2005 were finally being processed.

There are approximately 60,000 people with developmental disorders in Oklahoma. Individuals need to demonstrate an IQ of 70 or lower to qualify for assistance – a standard that is bumped to 75 if combined with other disabilities, such as blindness or a seizure disorder – as well as an inability to carry out basic life skills, such as feeding oneself, bathing, and mobility.

The care they need is often costly and exhausting, well beyond what most families can provide. However, families are sometimes eligible for help purchasing approved services, from physical therapy to in-home nursing. Because those services frequently go beyond what basic Medicaid will cover, they require a waiver from the state. But as funds are inadequate to the need, the waiting list has grown. Today about one in ten Oklahomans with a developmental disability is on the waiting list.

In addition to physical and occupational therapy, medical supplies, and in-home nursing support, waiver funds can be applied to respite care. When a caretaker watches individuals with developmental disabilities for a few hours a week, families can handle other tasks – doctor’s appointments, grocery shopping, even taking other children to a park – that can be vastly more complicated with a family member with developmental disabilities.

Both children and adults are eligible for the waivers. Indeed, some children become adults while waiting; individuals whose applications are being processed now have been on the list for eight years. Although DDSD serves only those ages three and up, parents are often urged to place newborns on the waiting list as soon as possible, according to Wanda Felty, an advocate for the people with developmental disabilities and their families; with existing funding, there is virtually no chance that their child will make it to the front of a list before turning three. In some especially unfortunate cases, those on the waiting list die before ever making it onto the waiver, as David Blatt discussed in a recent column. 

There are 3,045 children under the age of eighteen on the DDSD waiting list. Four hundred and forty-six are between the ages of four and six.

Oklahoma isn’t the only state to struggle with providing assistance for individuals with developmental disabilities. In Washington, about 5,000 people with developmental disabilities are on the waiting list and have requested services. However, Washington has accepted federal funds to expand coverage, and a bill filed this year proposes using expansion funds to virtually eliminate the waiting list. Advocates estimate that the bill, if enacted, could save Washington State about $40 million a year.

Despite the fact that accepting funds would provide a net savings to the state, Governor Fallin has so far refused Medicaid expansion in Oklahoma, arguing that Medicaid expansion is “unaffordable and unworkable.” We’ve show that that’s not true. Meanwhile, nearly 7,000 individuals with developmental disabilities go without assistance.

DDSD requested an additional $5.6 million this year, estimating that it would help 500 people get off the list. The Governor’s proposed FY 2015 budget offered an additional $1 million. In a budget that cut most state agencies, allocating $1 million to the waiting list is a nice gesture. But for the thousands of Oklahoma’s most vulnerable on the waiting list, it simply isn’t enough.