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Maryland offers "The New Directions Waiver" as a means of self-directing state and federal Medicaid dollars for individuals who qualify for supports due to their disability.

This offers the disabled individual the opportunity to use those dollars to best meet their own unique needs. However, it comes with the responsibility to create a plan, a budget, and find your own resources to make the plan a reality.

No centralized source of resources exists. The purpose of this blog is to direct others to resources in our communities and to provide one example of a self-directed plan. (*Caution: The self-directed plan described at the beginning of this blog is for an individual with a 5/5 needs rating, the highest possible rating in Maryland, and therefore the highest budget possible. Most will have a lower rating and a lower budget to work with.) It is also to share firsthand knowledge of experiences that may assist others who self-direct services.

Comments are welcome. Please share your knowledge with others.

Sunday, April 19, 2009

The Elementary School Years

When V was very small, she went to home-based day care centers when she was not in school or with family. During this time in her life, she wasn't so different from other children in her abilities that it caused a problem for caregivers. As she became older and larger, this was no longer true.
After school care that was designed for normal children was not equipped to meet V's needs. It became necessary to find people who could care for her in my home. Needless to say, that was more expensive than typical daycare options. The cost of this 1:1 care exhausted my savings pretty quickly.
After V had spent 3 years in the local elementary school, Delta decided to close my office and I had to make a choice to move to another part of the country and stay with the company or take a severence package and find something else to do. I was offered the option of moving back to Annapolis with my parents if I wanted to go back to school and pursue a teaching degree and a new career. I already had a bachelors degree in Human Development, and was able to find a Master's Certification Program in Education at the University of Maryland, in which I could complete 43 hours in 12 months and come out with an M.Ed and a teaching certification. So, I applied and was admitted to the program. I rented out my house, put my furniture in storage, and started school. This meant a transfer to a new school for V, and she was placed at Central Special in Edgewater,MD. Although it was an Anne Arundel county public program, it was not like the elementary school V had been attending where regular education and special education programs were in the same building. This school was structured more like Ivymount had been. No regular education classes existed in the building.
As this school continued to struggle with a behavior management plan without success, I learned of a place in Baltimore with an extraordinary reputation for helping children, especially those who had developmental disabilities and related behavioral problems. The principal of Central Special strongly encouraged me to look into the in-patient or out-patient program of The Kennedy Krieger Institute. I was very resistant to the idea at first. As time went on and I saw how V's behavior interfered with every aspect of her life, especially as it related to her school experience, I eventually agreed to an evaluation by the Kennedy Krieger Team.
By the time this happened, I had finished my master's degree and moved back to my own home in Montgomery County. V had been placed at Longview School upon our return to the county, rather than back in the elementary school where she had previously attended. It was another bad fit. The population of students at Longview were profoundly disabled and medically fragile, while V was low functioning, but more capable than the other students and she was physically healthy. Since she had her 1:1 classroom aide, she had a very individualized program. The physical environment of Longview was better for her than the elementary school because she was not overstimulated there, but she really had no peers to interact with. The county simply could not identify a really suitable placement.
While waiting for a nearby teaching opportunity to become available, I worked as a sales manager for a local travel agency. During this time, V was evaluated by KKI and deemed an appropriate candidate for the Neurobehavioral Unit (NBU) at their Broadway Campus in Baltimore. She was placed on a waiting list for an opening on the unit. Up to this point, V had recieved psychiatric treatment at KKI by Dr. Elaine Tierney, a very kind and dedicated doctor. Dr. Tierney prescribed Risperdal to alleviate some of the symptoms of the mood disorder that V seemed to have. It seemed to have a calming effect upon V, but also increased her appetite and weight. I adjusted my food preparation methods and we had it under control. Then, right before New Years, V cleared the NBU waiting list. This was the beginning of the most intense 6 months of my life.

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