It was a really interesting meeting and they have done a lot of work. Probably the best part was this website (go check it out, I will wait!) where they take a Learn-See-Do approach for teaching medical personnel, parents and young adults with DD how to transition to adult care (the site is ADA accessible and Spanish translated too!). The site also has an amazing feature where a young adult can have a private page that he/she and their circle of support can maintain medical planning info. It’s not only available for working their plan, but could be accessed for hospital visits, etc. They are hoping other folks around the country will replicate this in their states as well.
There are also diagnostic grids and resources available on the site for physicians and they are implementing other physician-to-physician activities to inform and support the medical community as well. For example they have technology that is trolling the internet to find new articles on developmental disabilities which they then evaluate (and rank) and make available for physicians in the different topic areas. This technology originally had some sort of Defense Department application and now it is being put to work (repurposed as my green friends like to say!) to find health information for people with disabilities.
The big elephant in the room, of course was that most adult-care physicians do not accept Medicaid patients. This was an acknowledged issue, but they did not accept this as a barrier to their work. They modeled their approach after diabetes care—a chronic-care model that is accepted by healthcare and insurance providers alike. It turns out that some time ago researchers in Washington State did research that showed that if certain diabetes protocol were followed patients had better outcomes AND it saved the insurance companies money. Because of this research the best practices of diabetes care (including something called “academic detailing” where a subspecialist and a general physician can meet to discuss care needs for specific patients!) is billable with insurance companies.
Your mission, should you choose to accept it (and PLEASE do accept it!!!):
Do the same type of research that made best practices billable for diabetics, about Developmental Disability issues. If the value of excellent health care for people with disabilities—for themselves and for payors—could be demonstrated healthcare could become a reality and improve the lives of people around the country.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.