Self -Determination Through the Eyes of a Client

I recently had the pleasure, on my radio show Special Needs Long Island, to meet Mandy Shenkman, an individual with developmental disabilities who works with The Center for Family Support, an organization that, in part, helps people with developmental disabilities work within self-determination.

According to the Self Advocacy Association of New York State (SAANYS) (another recent radio show guest),“Self-Determination (SD) is an idea that came from people with developmental disabilities and their families who wanted more control over their supports and services. While SD can be achieved in many ways, one important way is through a new option offered by OMRDD called the Self-Determination Pilot Project.”

Mandy Shenkman, a self-determination client of The Center for Family Support, had this to say:

I’ve been with CFS for 11 years.  Linda and Mary are my wonderful support team; they believe in me.  11 years ago Linda was the only MSC who believed that self-determination was real.  She went through the struggle of getting me approved. Now, more and more people feel that self-determination is for them. Linda and I were the pioneers. Mary knows that self-determination provides me with choices on how to live and work in the community. Having choices gives me freedom and control.  When I was unhappy with one of my life coaches, Mary helped me fire her. I don’t think I could have done that without her support.

I am so proud to be a Grassroots Presenter in the New York State Self-Advocacy Association. I talk about my life at conferences, training programs, colleges and on the radio. Linda and Mary are my agents.

Mary works with me each month to complete the paperwork for Self-Determination. Linda makes sure I am living a full and active life.

I’ve been working 2 or 3 days a week since 1998. I wanted to add another day to my work week.  My supported work agency refused to help. Linda and Mary respected my request. Their efforts to find me another job were successful.  I love all my jobs.

Mary and Linda are my teammates, my partners, my Circle of Support and my friends. I am lucky to have them.

Alexander Does Have Angels

I had the pleasure of meeting 3 great founders and supporters of Alexander’s Angels, a 501(c)(3) organization whose mission is to promote a better understanding of people with Down Syndrome.

Esther Gomez-Nieto, the President and Founder (and whose grandson Alexander was the impetus for the organization) refuses to take credit for the astounding amount of money that  Alexander’s Angels has raised and contributed to numerous Down Syndrome organizations. But as anyone knows who has run a fundraiser for a nonprofit event, it takes an enormous amount of time and energy. There are so many great causes, and just limited funds and time. Yet, Alexander’s Angels, through Esther and fellow members Janet Dolan and Michael O’Connell, have raised about $300,000 in just the last few years. Most of the money goes towards other advocacy, service and research organizations.

Coming in March, there are three exciting events being planned.  On March 4th, at 3PM, the New York Islanders are hosting Alexander’s Angels.  Purchasing tickets will go towards a great cause and be sure to be a fun filled Sunday afternoon.

On March 19th, all Long Island Friendly’s will donate a percentage of your check to Alexander’s Angels.  Please be sure to mention the organization before you order.  I’m planning on stopping by right after my radio show, Long Island Special Needs Radio, that Monday night.

To coincide with World Down Syndrome Day, and starting right after the United Nations celebration of the day, there will be an art show by artists with Down Syndrome downtown New York City (details on the Alexander’s Angels website).

 

 

Will New Autism Definition Affect Your Child’s Services?

Although the American Psychiatric Association has been working on its revision of the DSM (the Diagnostic and Statistical Manual of Mental Disorders) for several years, a new study by world-renowned expert on childhood mental disorders, Dr. Fred Volkmar, has brought the concerns expressed by the autism community back to the forefront of discussion.

At issue are proposed changes to the definition of autism.  According to the New York Times, many experts expect that the criteria for a diagnosis of autism will be narrower, but it is an open question as to how sharply.

Dr. Volkmar, the director of the Child Study Center at the Yale School of Medicine, believes the definition is going to narrow the diagnosis  so much that it will adversely impact many high-functioning autistic persons.  This in turn, may very well affect the ability of many highly functioning autistic people to get the services needed in schools and other settings.

Differing Viewpoints

According to many news source, including Long Island’s own Newsday, the panel of experts charged with revising the guidelines strongly disagree with Dr. Volkmar’s analysis. Additionally, two other field trials, one at Baystate Medical Center in Springfield, Mass., and one at Stanford University in California, also found that the new definition won’t greatly change the volume of autism diagnoses.

The Washington Post interviewed Geraldine Dawson, chief science officer of Autism Speaks, a national advocacy organization.  While you can read the full interview here, she recommends waiting until the full DSM changes are released, and even then, she advises that we will be unable to see how these changes will affect those seeking diagnosis until it has been in effect for a while.

I believe this is the best approach.  As Dawson states, the DSM needs amending.  There are far too many distinctions among different autism types, with very little difference in treatments.  All will now fall under the umbrella of autism spectrum disorders.

 

Long Island Advocacy Center featured on Special Needs Long Island Radio

Please join “Special Needs Long Island,” the radio show focused on the special needs community, as we feature Laura Adler Greene, Esq.  Ms. Greene is an attorney with the Long Island Advocacy Center, a not for profit organization  dedicated to protecting the legal rights of students with disabilities.  She represents students in PINS diversion programs as well as school meetings, administrative hearings, suspension and impartial hearings, and in administrative and appellate proceedings. She also lectures to school administrators and bar groups on special education law and the rights of students with disabilities.

Laura Adler Greene will be interviewed on January 9th, 2012 between 6:30 and 7:00 p.m. on Long Island’s WGBB 1240 AM.  For those out of the local broadcast range, or wanting the best clarity, the program is also simulcast on the internet at www.am1240wgbb.com .

K.I.D.S. Plus on Long Island Special Needs Radio

Join “Special Needs Long Island,” the radio program focused on the Special Needs Community, as we feature
Tammie Topel, Founder/President K.I.D.S. Plus, Inc. and David Flood, K.I.D.S. Plus, Inc. Board Member
Monday, December 19th at 6:30pm.

 

K.I.D.S. Plus, Inc. is a 501(c)3 Foundation which was established in 2009.  K.I.D.S. Plus provides therapeutic recreation and developmental sports programs to children with special needs. Physical activity can promote self-esteem, increase general levels of happiness, and can lead to positive social outcomes, all highly beneficial outcomes for individuals with autism and other disabilities. For those with disabilities who are able to participate in team sports, this presents an opportunity to develop social relationships among teammates and learn how to recognize the social cues required for successful performance on the field or court. However, individuals that prefer individual sports such as running or swimming that do not rely as heavily on social cues may still benefit from the positive attributes of physical activity while forming social relationships with coaches or trainers.

A Very Special Place on Long Island Special Needs Radio

Tonight, November 29, 2011, Special Needs Radio is hosting Diane Buglioli, Deputy Executive Director of A Very Special Place. A Very Special Place, Inc. was established in 1974 as a not-for-profit corporation to provide services to people with developmental disabilities. A Very Special Place, Inc. provides a comprehensive network of programs and services for people with developmental disabilities and their families.

 

Consumers of the services of A Very Special Place, Inc., who must be residents ofNew York, reflect the socioeconomic, racial, ethnic and religious diversity found throughout the region.  Consumers range in physical and cognitive abilities from individuals who live and work independently with minimal guidance to those who may require continual care.  Today, more than 1600 people with developmental disabilities utilize the array of programs and services offered at A Very Special Place.

 

Diane Buglioli will be interviewed on November 28th, 2011 between 6:30 and 7:00 p.m. on Long Island’s WGBB 1240 AM.  For those out of the local broadcast range, or wanting the best clarity, the program is also simulcast on the internet at www.am1240wgbb.com .

 

Special Needs Long Island is a weekly radio program dedicated to the special needs community on Long Island.