Over my morning coffee, I think about what we hear.
In our work at ao, we are on the inside walls of leadership in disability agencies. We hear the concerns. The troubles, the threats and challenges. You’d be surprised at how different things are across the country and yet how similar the issues are.
“There’s no more money coming into the system.”
“We are uncertain of the impact that the HCBS Final Rule will have on our organization.”
“Everything is in transition.”
New proposed legislation, such as increasing the minimum wage in states, will have tremendous impact on how disability service providers act in this new space and time. This math is stunning in terms of potential change in the footprint of service providers and you can see one State’s issues here. I heard recently, a worry than unless a provider is at or above the $25 million dollar mark, that nothing is safe with new HCBS Final Rule implications. Others say the overall effect may be slight. Some disability system administrators tell one professional audience that sheltered workshops must go, and the next audience of family members that not to worry, sheltered workshops are not going anywhere, perhaps to quell the growing concerns of family members that are just beginning to have glimmers of awareness of the potential change in the air. Somewhere in the middle lies the truth.
Here in Illinois where I live, all is lost with the Governor’s radical and reckless cuts to the human services systems. Recovery is possible but raising things from the dead brings to life something different that what it was. It will never be the same.
Another sip. I wonder what this new world order will bring to our field.
We are continuously impressed with the level of complexity that disability agency leaders are managing aligned with their social mission to do good for people with intellectual and developmental disabilities. Quite frankly, I don’t know if I have the courage to be an executive director or CEO of a provider organization. The terrain is that tough.
If I had to bet my morning coffee, I think that significant change to our field has already begun. I believe that in the future, disability providers will still be serving people with intellectual and developmental disabilities. Perhaps they will be serving a different profile of people, with different methods and approaches. Perhaps the footprint of the size and role of providers will be different than it is today. I believe that it is once again time for families to take back their primary responsibilities of finding real, local, community-based solutions for their family member with disabilities after the bus stops coming, if this is at all possible. It may be a new primary role for disability providers to help them do just that.
Because of all the things we hear, its the “There’s no more money coming into the system” comment that has us most concerned. And if there is truly no more money being infused into the closed circle of our service systems, and if more people are in the systems due to population increases, improvements to health care that lead to longer lives, and the growing population of aging parents that will at some point need to relinquish their daily care giving responsibilities, then something’s gotta give. Families have always been and will always be the bedrock of foundation and support for people with intellectual and developmental disabilities and it is the natural assumption that they will need to take on more. Advocates have long been crying for lives that have the same opportunity and same risks as everyone else. For many people with intellectual and developmental disabilities, we might be closer to that reality than we think.
Coffee’s cold now. Time for another cup.