A Quiet Crisis
A quiet crisis that has been growing for years demands attention, and help may finally be on the way. More than 15,000 children and adults with developmental disabilities and their families are stuck on a State list waiting for community services while their situations get worse.
A quiet crisis that has been growing for years demands attention, and help may finally be on the way. More than 15,000 children and adults with developmental disabilities and their families are stuck on a State list waiting for community services while their situations get worse. This so-called “waiting list” is essentially nothing more than a database of names and numbers because so few people ever come off the list.
This may be about to change, at least for those in greatest need. Governor Ehrlich has submitted a budget to the legislature that includes funding to provide community supports to approximately 1200 people with developmental disabilities throughout Maryland on the Waiting List.
The Governor’s initiative is the first significant infusion of new funds in four years to address the growing waiting list – a welcome first step in what must be a multi-year effort to address these needs. The fate of 1200 children and adults with disabilities and their families now rests with the legislature.
Each person is different but they essentially need support to engage in everyday activities. Some people with developmental disabilities require around-the-clock care; others need help finding and keeping a job or assistance with typical tasks of daily living. Families may need help with after school care for a teenager so both parents can work or assistance with the cost of making their home wheelchair accessible. They need, and deserve, access to supports that will allow them to live more ordinary lives. No more, no less.
Parents frequently find themselves trying to manage a job and the support of a family member with developmental disabilities. It is more than daunting; sometimes it is nearly impossible. Often the greatest concern parents of children with developmental disabilities have is that they will die, and their children will be left without the support they need. Some families call the State’s waiting list the “Dead or Dying List” because it seems like a parent has to die or be dying before their loved one with a disability is deemed a top priority for services.
According to the Developmental Disabilities Administration, which maintains the waiting list, 17 % of the people waiting for services receive their care primarily from a parent over the age of 60. A friend and colleague who has cerebral palsy and is waiting for services put it this way, “I depend on my elderly mother to assist me with my basic care and needs. Because of this responsibility, I feel like she can’t have a life of her own.” He explains that it is difficult for her to lift him and she can’t give him a shower because their bathroom is not accessible. He appreciates all of his mother’s support but because he relies on her to get into bed, he must go to bed when she does. He asks us to consider what it is like to be 40 and have a bedtime. And what it is like to only be able to shower once a week.
And then there is the mother in Salisbury who misses work every few weeks to take her daughter to Baltimore for appointments with specialists and has had extraordinary expenses related to her child’s care that most families don’t have. And the family that feels like they are at the mercy of the government to get assistance with even their most basic needs. They are among thousands of other families throughout Maryland in similar situations.
The 15,000 people on the State’s waiting list for services are from every county and the city and they have requested over 27,000 services. Over 43% of the services requested are in a “crisis” priority category. With a need this great and growing, the Governor’s waiting list initiative must be fully funded.
If any hesitancy remains about making this investment after considering the number of people waiting for essential services and the compelling stories they share, one need onlyconsider a very revealing statistic: Maryland is the third wealthiest state in the country, but it ranks 44th in spending on services for people with developmental disabilities, according to the Coleman Institute for Cognitive Disabilities at the University of Colorado.
We live in an inclusive society where everyone – including people with disabilities – belongs. That means ending the wait for community services for people with developmental disabilities and their families. The personal crises that many individuals with developmental disabilities and their families quietly endure day in and day out must now be addressed. It will make an incredible difference.
Originally published in the Capital Gazzette, 2006.
Brian Cox is the Executive Director of the Maryland Developmental Disabilities Council, based in Baltimore.
Cristine Marchand is the Executive Director of The Arc of Maryland, based in Annapolis.