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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.

Monday, May 2, 2011

More Exciting Research Re: Treatment of Intellectual Disability

Drugs Could Be Game-Changer For Intellectual Disability
By MICHELLE DIAMENT
May 2, 2011 Text Size A A
An antibiotic regularly used to treat acne and strep throat is one of a handful of drugs that researchers are discovering could alter outcomes for individuals with intellectual disabilities.
For Chase Brown, 14, the medication known as minocycline appeared to make a difference. Since taking the drug, the boy who has fragile X syndrome pays more attention in school, exhibits a greater ability to have back and forth conversation with others and his behavior meltdowns have subsided, his mother says.
The best part: unlike antipsychotics, Chase’s mom says the medication is not sedating her son.
And he isn’t alone. In a small study in which Chase participated, 70 percent of individuals with fragile X responded to minocycline, seeing similar improvements in communication, behavior and learning.
The drug is one of a few undergoing trials currently, which researchers say could ultimately lead to a development once thought impossible: the reversal of intellectual disability. Moreover, if successful, researchers say the medications could also have implications for those with autism and other conditions, reports The Los Angeles Times.

Comment by Sheree:
This article came to me through Disability Scoop, and they provide a link to the original LA Times article, which does mention a side-effect that occurs in some patients, reduced appetite and/or stomach upset. Other articles on this topic mention that the side effects sometimes subside after a few days of use. Some doctors are prescribing this medication off-label at parent's request and many of those have been surveyed about their observations. Many parents reported some improvements, but since it was not a controlled study, it is assumed that their is some placebo effect going on in at least some cases.

The original article also makes reference to a "ray of hope" for those who are born with Down Syndrome.

To read the original article copy and paste this URL
latimes.com/health/la-he-fragile-x-20110501,0,7738702.story

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