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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.

Tuesday, May 11, 2010

Is There Justification for Denying Access?

When V was in school, I was surprised by some of the things that she was denied access to. I say to you, as advocates for your child, PUSH!

Push for an explanation that satisfies you, and then, when you get one, work to find a way that access can work. Ask the question, "What, other than my child, has to change to make access possible?" "What steps can we take to make this happen?"

At one point, I was told that V could not have access to a computer at school because she would break the equipment when she became agitated. Well, she had never broken any computer equipment, including the equipment that she had access to at home. The excuse was mere supposition. With supervision, which should not have been a problem since a 1:1 aide was part of her IEP, there really should have been little risk. Years later, when we wanted to put a computer in her room, and knew that she would have to be alone with it at times, we had a computer station designed that had a plexiglass door in front of the monitor, and locking keyboard drawer that solved the problem. I made the special education department of MCPS at the board of Ed aware of the design and the company that could duplicate it for them, so that they would not have to deny another special needs student access to technology. As far as I know, they have not taken advantage of the desk design, but have found the money to put electronic signs in front of all the local schools. Now, which expense would have had more impact on student learning?
It is your tax money that is being spent, and you have a right to have a say in how it is spent. Speak up!
I found out about the Dynavox voice output device years ago (1996 to be exact). I thought it could open up all kinds of possibilities for V in the realm of communication. Insurance would pay for it if a Speech and Language pathologist would write a report that indicated medical need. Someone who can't communicate if they are in pain, hot, cold, or tired is certainly at medical risk without a means to communicate with doctors and family. Instead of supporting the goal and working toward it, I was told that V was not ready for such a sophisticated device and therefore no recommendation would be written for the insurance. She was 12 or 13 then, and in the rest of her years of schooling, she was never any closer to ready for such a sophisticated device, and never receptive to speech services. Only since the end of school have we seen steady and significant progress toward those goals. Was it a lack of belief in her ability to make progress that kept school personnel from supporting access to technology and working to get her ready to benefit from it? Did they just not believe that she had enough potential to make the investment of money and time worthwhile? Was there a lack of creativity and motivation to think "outside the box" and look for a different delivery model of services that she would be receptive to?
In retrospect, even though I was always told that I was a strong advocate for V, "a poster parent" as one administrator called me, I wish I had not taken no for an answer, that I had pushed harder and perhaps V would have lost fewer years of progress.

Where does the negative thinking and dismissive attitude toward our children come from? Don't accept it.
* incidentally, our speech therapist works part time for MCPS, and she is awesome!