I mentioned in an earlier posting, that I began to tap into wrap-around supports that were state and county funded after V came home from an extended stay at the Kennedy Krieger Institute for aggressive and self-injurious behaviors. The most critical of those supports was the expensive one-on-one before and after-school care that was essential for me to be able to go to work and to support us. Without that support, I had quickly exhausted my own savings, paying as much as I could for inadequately trained caregivers. People who had the necessary experience for the work were charging $10.00 per hour at the time, and it was far more than a single-parent on a teacher's salary could manage for long. Not only did that care allow me to go to work, but it allowed me to grocery shop, go to the pharmacy, and to go anywhere I needed to that would have been too difficult and unsafe to attempt with V by myself. Without those supports, I would have had to allow V to go to live in an institutional setting because I would not have been able to work and provide a home for her.
After a few years of receiving these supports, the state decided to limit such services to a period of not more than 2 years, so that new families on waiting lists could have access to the services. The program of return-divert was originally intended for children in crisis whose situations would improve or resolve within that time frame. However, children with chronic, life-long disabilities had entered the program, like my daughter, and the needs of those children did not diminish within a two year period. A group of women who had children with serious, chronic disabilities who were in danger of losing these critical supports came together to try to persuade state officials to change their minds about the 2-year time limit. I was among them. My ability to keep V at home was at stake. I was scared and I think we all were.
As a group, we went to visit the office of Kathleen Kennedy Townsend, the Lt Governor of Maryland at the time, to express our concerns. We did not receive support from that meeting. Later on, I was told by the other women in the group, that we would not lose our supports. We had received support from a member of the Maryland State Assembly by the name of Chris Van Hollen Jr., and our children were to be "grandfathered in" so that they would continue to receive necessary supports until they aged out of the program.
I never forgot that support that allowed me to keep my daughter at home for at least as long as she was in school, and that allowed her to be a part of a family. When it came time for Mr. Van Hollen to run for the U.S. House of Representatives, his sign was in my yard, and he always got my vote.
This weekend, I attended a BBQ at the home of some friends in Kensington, MD. To my surprise, Congressman Van Hollen appeared for a visit at the party. I found a moment to introduce myself and to tell him the story of how his support had meant so much to me and my daughter. Most of the time, political decisions seem impersonal to me, but in this case, nothing could have been more personal or meaningful and I was thankful to have the chance, after all of these years, to say a personal thank you to someone whose support made such a difference.
Less importantly, the experience taught me that getting involved in local and state decisions is not a waste of time. I learned that even a small group of passionate people can bring about a desired change. I learned that policy makers do care about the concerns of even a small group of their constituents. I came away from that experience feeling as if I had a voice in my local government.
After a few years of receiving these supports, the state decided to limit such services to a period of not more than 2 years, so that new families on waiting lists could have access to the services. The program of return-divert was originally intended for children in crisis whose situations would improve or resolve within that time frame. However, children with chronic, life-long disabilities had entered the program, like my daughter, and the needs of those children did not diminish within a two year period. A group of women who had children with serious, chronic disabilities who were in danger of losing these critical supports came together to try to persuade state officials to change their minds about the 2-year time limit. I was among them. My ability to keep V at home was at stake. I was scared and I think we all were.
As a group, we went to visit the office of Kathleen Kennedy Townsend, the Lt Governor of Maryland at the time, to express our concerns. We did not receive support from that meeting. Later on, I was told by the other women in the group, that we would not lose our supports. We had received support from a member of the Maryland State Assembly by the name of Chris Van Hollen Jr., and our children were to be "grandfathered in" so that they would continue to receive necessary supports until they aged out of the program.
I never forgot that support that allowed me to keep my daughter at home for at least as long as she was in school, and that allowed her to be a part of a family. When it came time for Mr. Van Hollen to run for the U.S. House of Representatives, his sign was in my yard, and he always got my vote.
This weekend, I attended a BBQ at the home of some friends in Kensington, MD. To my surprise, Congressman Van Hollen appeared for a visit at the party. I found a moment to introduce myself and to tell him the story of how his support had meant so much to me and my daughter. Most of the time, political decisions seem impersonal to me, but in this case, nothing could have been more personal or meaningful and I was thankful to have the chance, after all of these years, to say a personal thank you to someone whose support made such a difference.
Less importantly, the experience taught me that getting involved in local and state decisions is not a waste of time. I learned that even a small group of passionate people can bring about a desired change. I learned that policy makers do care about the concerns of even a small group of their constituents. I came away from that experience feeling as if I had a voice in my local government.
No comments:
Post a Comment