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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, February 22, 2010

Be Part of the Research on ASD

As I was researching solutions to sleep disturbance issues for my last post, I came across the IAN website. I have copied the description of IAN.org from the website for your information and have pasted it below:
"
IAN, the Interactive Autism Network, was established in January 2006 at Kennedy Krieger Institute and is funded by a grant from Autism Speaks. IAN's goal is to facilitate research that will lead to advancements in understanding and treating autism spectrum disorders (ASDs). To accomplish this goal, we created the IAN Community and IAN Research.
IAN Community

The IAN Community is an online environment designed to act as an inviting library and meeting place where everyone concerned with autism spectrum disorders can learn more about autism research. Everyone can participate and benefit from the IAN Community.

Our goal is to help you:

* Understand the research process
* Keep up with the latest research findings, news, and events
* Understand the value of participating in autism research
* Influence the direction of research "

There. If I would summarize what I have found on the website: It provides descriptions of research studies that are currently being conducted throughout the country, that are still recruiting participants. It publishes the results of completed studies. It allows users to participate in online surveys about autism or ASD's. There is a wealth of information here and an opportunity to be counted in the research if you want to be. I think it is worth checking out and I have registered for it. I have learned from reading research results on IAN that my daughter is typical of girls with ASD's in that 1. she was diagnosed before 12 mos of age, 2. She has cognitive impairment, and 3. She has a seizure disorder. I did not know that these features are far more prevalent in girls that have an ASD diagnosis than in boys. So, I learned something.
I also learned that Vanderbilt is doing a study on sleep disturbance in people with ASD's, and you can read about it or email the researcher with questions from the report on the IAN website.
To visit the IAN website, copy and paste this URL:
http://www.iancommunity.org
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