On Wednesday, October 12th my friend Mike O’Brien called to say that a young lady we had been working with for five years had passed away out of state in Pennsylvania. Her parents had never wanted to send her away. Their dream and her dream was that she would be allowed to remain in her own home with her family with the supports around her, which would have enabled her to live a full rich life.

When the family had first approached us asking for assistance, we had thought that the MRDD Wavier was the obvious option. She had a developmental disability (a rare neurological disorder) which left her often confused with irregular sleep patterns. She would often run away. This required almost constant monitoring. Once again, this seemed a perfect match for the MRDD Wavier which allows for 24-hour care. We were shocked when the application was denied both by the hearing officer and a circuit court judge. The judge even refused to hear the case because the young lady was no longer considered a citizen of West Virginia. Out of State and Out of Mind.

A recent Charleston Gazette Article entitled Nursing Home Exiles chronicled the stories of two women who have been sent to The Arbors, a nursing home in Marietta, OH because a 1994 law makes it acceptable for individuals who use ventilators to be moved out of state automatically based on the cost. According to the article, Specialty Select Hospital in Charleston has sent 15 people to Ohio in the last three years. Joan Welldon, one of the women profiled has told me that all the ventilator patients currently housed at The Arbors are West Virginia residents who have been forced to surrender their citizenship simply for the right to breathe. She has said on several occasions that she feels that her home state has forgotten her and that she is no longer wanted. The exile imposed on Joan by the State of West Virginia has forced her to leave her home, her pets, and her elderly mother, who she helped care for and worries about everyday. Once again, our state has employed it’s out of state/out of mind policy.

Currently, there are 389 children from West Virginia in out of state placement. Adults who are sent out of state are given out of state Medicaid and then simply forgotten by West Virginia. I guess our Governor and policy makers aren’t concerned because this tactic allows them to defray the cost of care for these individuals. The burden of the cost is placed on the state where they are imprisoned; a cost savings for the state of West Virginia.

This strategy, however, fails to take into account the families which are torn apart, the holidays that are missed, or the mother from the Charleston Gazette article who only gets to see her children once every four months, if she is lucky. How would Governor Manchin feel if he were faced with this existence on a daily basis? West Virginia’s Policy of pushing citizens out of state based on their diagnosis is not just immoral, it is illegal. According to the 1999 Olmstead Decision every individual has the right to live in the home of their choice. I wonder how many people, like my friend, will pass away never having the opportunity to return to their home and those they love.