Robin M. Lucas - Special Education Advocate/Consultant

Sunday, September 29, 2013

It started: DSM5 used to revoke autism diagnosis Share your story to stop the DSM5

As many of us expected, the new definition of “autism” laid out in the Diagnostic and Statistical Manual, Fifth Edition (DSM5) is being used to deny services and educational placements to people with autism. We are receiving more and more reports from around the US (Buffalo, Dallas, Utica, etc.) of schools, Medicaid providers, insurance companies and local government service providers using the DSM5 to deny services to people who have an autism spectrum disorder.
If you are facing difficulties or the loss of services as a result of the DSM5 please let us know. Please contact us at jgilmore@autismactionnetwork.org with your stories. Your stories will be a crucial component in stopping the DSM5.
All the studies on how the DSM5 will affect people with autism have shown huge numbers will lose their diagnosis, their services, Medicaid and educational placement along with it. One study from the Child Study Center at Yale University showed a 55% reduction, including 30% of those categorized as low-functioning.
We have had bills introduced in several states including New York, New Jersey and Connecticut to require the continued use of the DSM4 and other diagnostic tools such as the ICD. We are working on getting bills introduced in other states. Illinois has already passed legislation prohibiting the use of the DSM5 to deny services. And we are working to prevent the federal government from using the DSM5.
The DSM5 discards the labels of “Asperger syndrome” and “pervasive developmental disorder not otherwise specified (PDD-NOS)” Schools and insurance companies and Medicaid providers are using these changes to tell people who have an Asperger’s or PDD-NOS diagnosis that they no longer have “autism” and are losing insurance coverage, placements in special education and other services.
The DSM5 is wrapped in controversy. The federal National Institute of Mental Health considers the DSM5 so flawed that they will not spend any research dollars on studies that use it. We do not have to put up with this.
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Recommendations:

I highly recommend Robin Lucas for anyone seeking an advocate for their child. Robin helped us navigate the extremely difficult IEP process. She is very knowledgeable and explained the laws and procedures so that we were better equipped to engage in IEP meetings. She not only made us feel at ease but she also spoke with our child on the phone and helped her to understand that her learning disabilities made her unique. Our child became proud of her strengths and saw weaknesses only as areas of growth due to Robin's nurturing and kind words of support. If you choose to have Robin Lucas become part of your IEP team, I am confident that you will be more than satisfied with the support and expertise she brings to the process.

MJS - Cobb County, GA 1/17/2014

If you are having difficulty getting your school system to cooperate in the areas of identifying needs or disabilities, I highly recommend Robin Lucas. Robin attended our son's eligibility meeting with school and county level personel and was a tremendous help. She stepped into a stress filled room and kept the meeting focused on the needs of our son, in a lighhearted tone. I have been in many of these meeting over the years and have never experienced one go so smoothly. Robin's knowledge, experience and carefuly placed comments, made sure that our side was fairly represented. In the end we left the room with the eligibility my son needed. I truely appreciate the help she gave us and give her a double thumbs up!!”

August 30, 2011 Kellie Meckes

Robin has been my guardian angel! She has been helping me every step of the way with a very difficult IEP and I could not be more pleased with her professionalism, knowledge and accessibility. She has a no-nonsense, consensual style that really works! I highly recommend her to anyone needing advocacy services. - Michelle Stern Simon

Dear Fellow Parents,
I am writing this letter to acknowledge my positive experience with Robin Lucas.
Two years ago I was given custody of my eleven year old nephew. In addition to John’s issues regarding his mother, he was significantly behind in school and did poorly in social situations. When made to do work John felt incapable of doing, he would shut down and retreat into himself. If confronted with his behavior, he became angry. John’s special ed teacher suggested that he might have a conduct disorder.
As his therapist got to know him better, she felt that he might be on the autism spectrum and suggested that he be evaluated at the Marcus Institute. Thus began my journey to finally get some answers. After their initial evaluation, the Marcus Institute referred John for further testing by a neuropsychologist. The neuropsychologist diagnosed him as having Asperger’s Syndrome and a processing disorder.
While grateful that I finally had a diagnosis, I was overwhelmed with the responsibility of finding the best school for John and the best occupational therapy. I was in unfamiliar territory and felt very alone. Thankfully, it was at this difficult time that I was introduced to Robin.
From the beginning, Robin instilled in me the confidence that I could make good choices on John’s behalf. She brought me up to speed about how to go about finding the right resources. With her help, I felt prepared to call prospective providers and ask the right questions. When I narrowed my choice down to a specific provider, Robin accompanied me to the introductory meeting. She asked questions that only a person with her experience knew to ask. She has also guided me through the process of obtaining funding for John’s education beyond the SB10 dollars.
Despite all of the professionals who have evaluated John during this past year, Robin was the only person who suggested that he should be evaluated by a pediatric developmental ophthalmologist. Again I was in unchartered waters. Imagine my surprise when I learned that John had a significant vision problem.
So in addition to having Aspergers and processing difficulties, the child had been trying to learn all of these years with this undiagnosed vision disability. John has been in vision therapy for the past couple of months and is showing appreciable progress. Again, I was dumbfounded that while dealing with the best providers and resources for John, after reviewing all his evaluations, Robin was the only person I met who suggested his vision may be compromised.
I am grateful that I met Robin and that she has done so much to aid me in helping John.
Sincerely, Courtney S.

Sunday, September 29, 2013

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