The DHS/DDS Waiting List – We must do better.
I went to a meeting of the DHS/DDS Waiting List group recently. That is the Developmental Disabilities Services (DDS) division of the Oklahoma Department of Human Services (DHS). Crowded into a room in the Sequoyah office building near the capitol were parents of children and adults with developmental disabilities, a few of those children and adults, some state employees who work with the programs serving, or not yet serving, the children and adults, and a few legislators and legislative candidates. And me. Erin Taylor, family advocate and mom, invited me. Wanda Felty, a mom and advocate, chaired the meeting.
This is a “waiting list meeting” because there are 7,669 children and adults who have signed up for services available from DDS/DHS who have not yet been evaluated or served by the Medicaid waiver funds designated for them. More than half the people have been waiting for five years or longer. Almost 2,000 have been waiting more than 10 years.
Why? Because funding is lacking. DHS has had to allocate its general appropriations to higher priority services. Since 2008, responding to increased advocacy efforts from this group, the legislature has directed funding to “work the list” five times, most recently two million dollars this spring. As a result of this money, DHS is evaluating people who went on the list on the first six months of 2006, twelve years ago. Twelve years.
Some of the kids and young adults who were with their parents at the meeting did their best to sit through the long session. One stared wordlessly at the floor, another played on a phone, one lost her temper with her mom and hurried out of the room. Another asked some questions about the math on the waiting list chart. Parents were polite, eager, questioning, resigned, weary, frustrated, and in one case, ready to block Oklahoma City highways until more action is taken.
Answers from state employees were direct, sometimes encouraging, sometimes uncertain, but never hostile or condescending. Acronyms were in practically every sentence: DHS, DDS, CMS, ICF/IDD, TEFRA, BCBA. As a social worker I’ve worked with these issues for decades but I was still having a hard time deciphering all that was said.
We have a revenue problem in state government. I don’t know how we could ignore the waiting list or somehow make it more efficient in the name of fiscal responsibility. The names on the list are real people, whose caregivers need help with things like job training, job coaches, occupational, speech, and physical therapy, transportation, special equipment, home nursing care, and for some, 24-hour living support.
As children become young adults and continue into middle age, their caregivers age too. You know those parents worry daily about what will happen to their child if something happens to them. Most kids grow into independent adults who can manage on their own. The people with developmental disabilities on this waiting list will never be able to take that step without long-term support
We have to do better. These are people – not statistics – and 12 years is just too long to wait.