It's Time to Start Having the Hard Conversations
The following is the third installment of the GCDD First Thursdays blog series, a monthly blog that will share the thoughts and ideas of GCDD staff members.
It's Time to Start Having the Hard Conversations
In my trips across the country to discuss with other DD Councils the ideas behind our Real Communities approach, I always ask two questions first: How many of you think your DD System is working well? How many of you think your Medicaid system is working well? So far, I have a handful of people raise their hands. There are no states that we can point to and say "they are the best at everything." Sure there are pockets of excellence, but it is not across the board. Everywhere there are people on waiting lists for services, issues about the quality of providers and services, concerns about closing institutions and the conditions inside those institutions and a lack of vision and leadership about where we are going.
Some of these issues were addressed recently at a gathering in Washington DC to celebrate the 50th anniversary of passage of the Developmental Disabilities Bill of Rights and Assistance Act – more commonly called the DD Act. It was the result of parents and others coming together to create a vision of what could be created to pressure the state and federal government to support people with developmental disabilities to have meaningful lives and be part of their community. Developmental Disability Councils (Georgia Council on Developmental Disabilities (GCDD)), Protection and Advocacy (Georgia Advocacy Office) and the University Centers for Excellence in Developmental Disabilities (the Institute on Human Development and Disabilities at UGA and the Center for Leadership and Disability at GSU) all have their beginnings in the DD Act.
The DD Act lays out a vision that these agencies should create system changes that result in people with developmental disabilities being more independent, economically self-sufficient, included and integrated in their communities and self-determined in their lives. Want to know why GCDD pushes the issues they do? Look at this statement of vision and outcomes. It is what we are supposed to be about. It is our job within state government to support an effort that creates change and sees people with developmental disabilities in Real Homes, Real Careers, Real Learning experiences and have Real Supports and Influence in their daily lives.
We believe this is the case for all people with developmental disabilities – not just a few with certain kinds or levels of disability – but for all. We believe that everyone who wants to can live in their own home and have the keys to their front door. We believe that everyone who wants to can go to work and earn a living. We believe that kids should be in class with their peers and have an opportunity to go to college. If organizations like the DD Council, working with individuals with developmental disabilities and their families, don't hold this vision for people – who will? The DD System? Providers? Elected Officials?
One of the conversations that took place at the event in Washington DC is about the future of Medicaid waivers. There are hundreds of thousands of people across the country on waiting lists and nowhere in the near future can I foresee the billions of dollars required floating down from Washington or the state capitols to meet these needs. In addition, and this may not be popular, but there are lots of people with waivers who get more than they may need and even more who might need a little bit and get nothing. Even after funding programs like Partners in Policymaking for years, there are not enough advocates out there to convince legislatures that more money must be allocated and it must be enough so that people can get $25,000, $50,000 or $100,000 a year for the rest of their lives.
We have to start having the hard conversations about what it means to have a waiver and how can we address the waiting lists and make sure that people in need get support. I don't have the answer. GCDD will be advocating for new money in supported employment and housing during the upcoming legislative session. Maybe it's about all of us saying we will take less so others can have some. Maybe it's prioritizing the kinds of services we should be funding and should not be funding. Maybe it's all of the above.
If we are to achieve the promises of the DD Act that disability is a part of the natural human experience and that people should be independent, productive, included and integrated and self-determined in their lives, we must be honest with ourselves and agree to have these very difficult discussions together.
Eric Jacobson
GCDD Executive Director
