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Posted at 10:09 PM ET, 01/27/2011

Living with a disability, in a caring setting

By Bradford Wood, Bethesda

The Jan. 24 Metro article “Virginia anticipates sharp criticism over disabled” presented a faceless, one-sided viewpoint, nebulously referring to “civil rights” issues that supposedly favor deinstitutionalization but missing the actual lives of some of our most vulnerable citizens.

My sister has mental retardation, cerebral palsy, seizures, and no motor control or ability to speak, but she loves her existence and spends most of her hours smiling because of the quality care and love she has received for more than 40 years at a state institution for those with mental disabilities. But Virginia is now considering sending its most vulnerable citizens out into the “community,” or even closing those institutions, where oversight is at least attainable.

Tough decisions require consideration of all the facts and a broad perspective, something I usually expect from The Post.

By Bradford Wood, Bethesda  | January 27, 2011; 10:09 PM ET
Categories:  Virginia, health care  
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Posted by: alicepier28 | January 28, 2011 1:20 AM | Report abuse

While your sister stays in a state institution, thousands like her get no care at all, because state institutions cost so much more per person. There are thousands of people on waiting lists in Virginia for community care, getting nothing, including people like your sister.

Your sister could be served in a small, community-based facility just as well, but for less money. She would get the same good care, just in a smaller, local facility. Others who don't need and don't want to be in an institution could live in a group home, or by themselves with assistance, and for alot less money, and closer to their families. Instead, they wait and wait for Virginia to finally close these things and stop throwing more money at them.

Posted by: Dadrick | January 28, 2011 10:31 AM | Report abuse

Like Bradford Wood's sister, my sister Marcella has cerebral palsy, suffers from seizures, cannot walk and can no longer talk. Like Mr. Wood's sister she is happy and gets through her days with the help of caring, skilled professionals. For 30 years she received care in a state institution in Massachusetts. During that time her care varied from good to poor. I remember visiting her unannounced one time and it took the staff 15 minutes to find her parked in her wheelchair alone in a corridor. During the worst periods she was essentially "warehoused." She was rarely dressed in the clothes we had bought for her, even though we had sewn name labels in them. It was not a bad existence but it left a lot to be desired.

For the last 15 years she has lived in a single family house with two or three other women suffering from cerebral palsy. My mother had been terrified that living "in the community" meant "living next to a crack house." Since mom finally agreed to having Marcella live in group home 15 years ago she has had a wonderful experience.

The staff in the new home are often veterans of the old state institution, but the atmosphere and the care have been so much better. The house is decorated for all the holidays. She has a parakeet. She attends social events. The house is spotless. She gets personalized medical care and there are always one and often two attendants on duty. They give her loving care and the setting is 100% better than her old "state hospital."

I know it's scary transitioning your loved one to a new environment, but it worked out marvelously for Marcella.

Posted by: tbo1969 | January 28, 2011 11:45 AM | Report abuse

After decades of moving people from large institutions back into homes in the community we know that people actually are better off when they are part of the community. Here are some of the reasons why:

• There is little doubt that we learn much of what we come to practice as adults from those around us. Yet we put people with the most severe disabilities together and expect a good outcome. So, if our goal is to teach someone to talk, to walk, to be toilet trained, or any of the other skills humans need to exist, why would we surround them with people who can’t talk, who don’t walk, who aren’t toilet trained?
• People are safer and more protected in the community. Strangers have no problem blowing the whistle when they see a child or adult with disabilities being abused. Neighbors, people in grocery stores, medical personnel, fellow workers, church members, and involved family members are much more likely to see and report suspected abuse or neglect than the closed community of congregate care personnel.
• Community care a Medicaid waiver for persons living in small residential settings, primarily group homes, is about half the cost of institutional care for individuals with equivalent levels of need. Supporting people in normal housing in typical neighborhoods has always been far less expensive than institution construction and maintenance, even with adaptations made for people who have severe physical disabilities. It means we don’t have to replicate resources. We don’t have to build gyms, swimming pools, parks, schools, and other separate services and supports because they’re already there.

People with significant disabilities not only CAN live in the community, they already do. This is the time to move Virginia forward and move all of our citizens to where they belong….in the community with the rest of us.

Posted by: johnkathymay | January 29, 2011 7:13 AM | Report abuse

i agree with johnkathymay. I feel institutions are holding me back because my aide pay is being shared with institutions. there are 13 states in this country that have no institutions for people with disabilities. virginia can do better! no matter the severity of the disability people can live at home with the correct supports. i think that maybe the institutions are staying open just to give people jobs. that's wrong!

Posted by: blondieblue227 | January 31, 2011 10:51 PM | Report abuse

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