A young man sits in a crowded waiting room. He is a wheel chair user, his hair is cut close to his head and his body is angular, arms bent in ways that most people would find uncomfortable. He wears head gear that looks like something from a sci-fi movie; it is a band that wraps around his head with a stick of some kind protruding off the front of his forehead. Beside him sits a young woman, African American, dressed smartly. She is thumbing through a magazine talking to him out of the side of her mouth, which is greeted with an occasional head bob or grunt from the young man. The rest of the people in the waiting room take great pains to “look down,” “look away” or act as if the two are not in the room. The television is playing in the corner of the room, the sound is low but the subtitles are flying.
Suddenly, there is a burst of explosion from the young man in the chair. He begins to violently rock back and forth. The other people in the room try hard not to stare but they are a bit alarmed. The young woman sitting next to the man in the “chair” pulls out a device, like a big iPad and encourages the young man to explain why he is upset. He begins to use the stick on his forehead and a series of bobbing actions to type out the following, “Can you believe the outcome of the Casey trial?” an automated, robotic voice shares cutting the silence of the room. At first, people stare almost stunned. When the woman begins to share her opinions with the man in the chair so does everyone else in the room. Magically, the differences between the man in the “chair” with the angular body and distracting presence disappear and everyone finds something in common to share as a community.
MEDICAID PAYS for the young lady sitting next to the man in the “chair.” She is a direct support professional who is paid to serve as the young man's bridge to his community. Fifty years ago, this young man would have spent a lifetime in an institution, remained at home until he died from lack of adequate medical care many years before his parents, or worse survive a lifetime in his home and then move to a nursing home when his parents died before him ... Additionally, because of his unique communication style, unless someone took the time to understand his head bobs and teach him ways to use assisted technology he would also spend a lifetime being misunderstood, ignored and unknown.
Congress is looking for ways to “balance the budget.” There is talk of block granting Medicaid and giving the dollars to each state to develop a “plan” for serving the neediest, but at the same time conserving our resources. This raises grave concerns as we look at how our own state is currently caring for her “most vulnerable.”
Virginia ranks 47th in the Nation in its use of Medicaid dollars in the community — near bottom. In many ways, Virginia continues to operate as if it were 50 years ago, relying on the use of expensive alternatives to community services, spending our Medicaid dollars on outdated crisis models like unnecessary hospitalizations, institutionalizations and nursing home placements. Virginia is currently under investigation from the Department of Justice for its unfair treatment of people with developmental disabilities. Concerns have been raised about the “inadequate community services,” “long waiting lists” and “unnecessary segregation of services” for thousands of Virginians.
TO BE HONEST, Virginia is not alone in its outdated ways of spending Medicaid. With a growing population of people with disabilities and people who are aging, our country cannot afford to “Cut Medicaid” or develop a “state by state” approach to caring for the “most vulnerable.” Yes, we need reform to Medicaid. We need a National plan to address our country’s long term care needs. We need a Medicaid program that supports the development and maintenance of preventative community based care, not expensive, crisis driven institutionalized based care. Please ask your congressman and senators to vote “No” to Block Granting Medicaid, this is not the answer to our budget crisis — in fact it is the “more costly, less humane way out!”