State in denial over disability waiting list

When my daughter Analise was diagnosed with microcephaly, a birth defect resulting in a small brain and intellectual disability, I was in denial about the kind of life she would lead. I know I am not alone. Many families of the 5,800 Oklahomans currently on the developmental disability services waiting list likely went through this same denial phase. That is why parents are often not in a rush to add their children to the 13 year wait list to receive Medicaid home and community based services that will help them to live a more independent life.

After a recent government report about the Department of Human Services’ (DHS) management of the waiting list, it is clear that families of those with developmental disabilities are not the only ones in denial. The report, requested by legislators, revealed that little progress has been made to serve those waiting even with the state’s $9 million investment over the last eight years to do just that.

That spells trouble for Analise and thousands more who are waiting for daily living supports that help them get out of bed, bathe, get dressed, eat meals and take medications. My 13-year-old daughter is five years into the wait now. If the pace remains the same, she will be 21 by the time she receives services that she will need for the rest of her life. 

The wait for support is a struggle for most families. Analise has required constant care since birth.  Without the support services when needed, our family, like many others, fills in the gap as best we can, but it comes at a cost.  At times, I have worked two jobs in order to privately pay for Analise’s special needs and her afterschool care, which has caused me to go into debt.

I am a single working mother who understands the caregiver role and the burnout that sadly comes with it.  As an Executive Director in healthcare and a nurse for the last 30 years, I have assisted many families with their elderly parents and adults with disabilities. But now it is my daughter’s turn to get some help and I am calling on our legislature to prioritize the developmental disabilities waiting list.

I know my daughter may never be able to financially contribute to society the way most Oklahomans can, but that should not mean that I have to stop contributing too.  However, leaving the workforce and early retirement is the reality many parents face in order to care for their child, because developmental disability services are not readily available. I have often considered leaving my home in Oklahoma to relocate to another state that offers a shorter timeline for support, because the cost to privately pay for services over a lifetime is more than most families can afford.

Moving out of state, ending careers and emptying savings accounts may seem like a lot to give up until you consider the alternative.  Analise would be forced to live in an institutional setting if I could not provide care for her while she waits for services.  It is not the lifestyle anyone wants for their loved one at any age, but certainly not for a lifetime.  It seems that our state is in denial about what will happen to these Oklahomans with developmental disabilities if we do not find a way to properly fund the waiting list.

DHS has hired a third party to conduct an assessment of all those waiting in an effort to provide the legislature with an estimate of what it would take to fully serve the waiting list.  It is a step in the right direction, but given this recent report, families have good reason to question whether this is an attempt to shortchange Oklahomans with disabilities who have been waiting years for services to help them live at home in the community.

As parents of children with disabilities, we have had to work through our own denial and now it is time for Oklahoma to do the same with the waiting list.  Whether our children stay with us in the family home or go to live in group homes or independently in the community, parents will continue to be a part of their lives and we should be a part of the process in solving the waiting list too.