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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, July 5, 2009

Update on Special Olympics cycling

We attended the first practice session of the season. It was out of V's routine to go out on a Saturday morning, but we managed. It was a beautiful morning at Bohrer Park. The coach was there waiting with the trike and V put on her helmet and got right on, ready to go.
Then, the coach said, "This seat is too high for her. Let me just have her get off and I'll raise it." So, she was cooperative about getting off and the coach went to work on the trike. V took my hand and walked me all around the parking lot and down the path a ways. We sat at the picnic table and then up again for more walking. Soon, she was looking for the car. By the time the coach had finished adjusting the seat, 35 minutes had passed and V had lost interest, was bored and ready to get in the car and go. I tried to coax her back onto the trike but had no success. She was insistent about leaving and began to get agitated when she was no permitted to get right into the car and leave. She was clearly done, without really getting started and we had to let it go for that day.
We thanked the coach and told him that it was a no-go for the day, but we would be back to try again.
This week I began to really look at trikes for her. The most basic trike starts at $400.00 and looks just like a child's trike. I noticed that the other Special Olympics participants had a different kind of trike that was longer, lower to the ground and had recumbent seats with back supports. They seem less tippy with the lower center of gravity, and a shorter distance to fall if you do tip. They are aluminum and lighter weight, as compared to the basic trike which is steel and about 45 lbs. But these recumbent trikes cost more than 1K to buy. I would be willing to spend the money if I knew that she would eventually get the hang of cycling if we are as persistent as we were the the horseback riding. Do we start out with the cheap trike and upgrade later if it works out, or do we start out with the better trike and sell it if the cycling doesn't work out? I am checking Craig's list, Ebay, and every other internet source of used bikes that I can to see if I could get a better bike for less than the cost of new.
There was no practice this week because of the holiday, but it resumes next week. Will we have found a satisfactory bike by then. Will I borrow my husband's pickup to transport it, or will we spend even more for a rack to accomodate a trike? Will V even get on next week. She was interested enough to sit on 3 different kinds of trikes at the Mt. Airey bike store we took her to on Friday. I couldn't really tell if she had a preference for one kind over another. I could see that she needs LOTS of support to just understand the concept of pedaling. Wish I had an OT on board to help us with this, but I am still looking for someone who will work outside of an office with V. We will have a long way to go to get the hang of this.