The Brain Injury Association of Virginia is asking all of us to write to the Virginia Department of Behavioral Health and Developmental Services (DBHDS). They want us to urge DBHDS to include persons with brain injury in Medicaid waivers that help people receive funds that allow them to live and participate in their communities.
Most of us can’t understand what that sentence means. Am I right? How can we write a letter about something, even if we know must be a good thing, if BIAV Executive Director Anne McDonnell says so, but we really don’t understand?
Those of us who live with brain injury residuals want to help the greater cause of brain injury service provision even if we don’t understand or don’t need the services, but it’s hard to wade through all of this public policy and legislative mumbo-jumbo. That’s why I’m writing this blog post. For those of us supportive but not-so-well versed brain injury groupies, here’s my simple version.
If you read my last post, you know that I just finished reading a book entitled Head Cases. It’s very good. You should read it. Anyway, one of the chapters was about a brain injury survivor in Nebraska, which is also a waiver-less state. This fellow was reviewed by the case manager and book author, who said that he expected this guy to do pretty well in rehabilitation. He just had a disturbing memory problem that limited how far back in time he remembered and his ability to form new memories. Therapy would help.
The problem was that the guy was put in a mental hospital where there were no brain injury specialists. He couldn’t get out of the institution because there was no place for him to go . . . because there were no waivers.
Okay, there’s that “w” word again. Waivers are something that have evolved out of the Medicaid Program. Medicaid was enacted in 1965. At that time Medicaid paid for institutionalization of people with intellectual and behavioral problems, which netted in persons with brain injury too. Medicaid was established as a federal government program that is jointly funded with the states. Importantly, it is also managed by the states. Medicaid is optional for the states, but luckily all of them opted in.
After a decade or so, folks in the states began to protest that Medicaid only paid for institutionalization. There were other group home and community based solutions that were more humane. Shouldn’t they be funded too? Okay, said the federal government, we’ll grant waivers to folks who want to try out home and community-based forms of care and rehabilitation. But, again, waivers for this form of payment are optional and up to the states.
Virginia is one of the remaining states to not allow funding for the brain injured in their administration of a waiver program. The DBHDS is working on its waiver policy, but the decision to allow the brain injured to be covered is not part of our current waiver management policy.
So like the fellow in Nebraska, there are no funds available for our brain-injured ladies and gentlemen to be treated more humanely, in homes and communities rather than in institutions. Unfortunately, during the months and then years that the case manager worked to get the Nebraska guy out of the hospital, he deteriorated. In the institution, where there were no brain-injury specialists, drugs were prescribed to sedate him and he was not allowed out of his room. There was no one on site who could work with his memory and instead, he was treated like someone who was mentally ill. There was nothing that the case manager could do, because there was no funding to move him to a more suitable group home where he could be rehabilitated to an extent.
This sort of inhumane treatment of persons with brain injury is happening in Virginia too. We need Virginia policy to include brain injury as a condition that is eligible for Medicaid funding to move people from institutions to more natural settings were therapies and respect for their brain-injured humanity will help rehabilitate and improved their quality of life.
I do hope this has helped to increase your understanding or at the very least convinced you that waivers are good and we need the policy changed by DHBDS to include persons with brain injury as eligible for funding. You can read the written comments submitted by BIAV for more information. If you still want more information before you comment, contact one of BIAV’s Resource Coordinators.
Write your message to them in an email addressed to MyLifeMyCommunity@dbhds.virginia.gov. Keep it simple, if you want. Type “Brain injury needs to be included in the new waiver,” tell them your name and address, and click send.