Desperate Parents Try Desperate Measures

The Judge Rotenberg Center, a special needs school in Massachusetts that receives much of its funding from New York State, is back in the center of controversy again.

 

The Center is the only school in the nation that uses aversive therapy such as skin shocks as behavioral modification on its students.  Many of the students at the Center are New York residents, with New York courts approving the skin shock therapy.

The Canton Patch is doing a series of articles on the controversy, reporting both on the boycott of radio ads by the Center led by a Long Island parent and also reporting on the parents and supporters of the Center and the controversial treatments.

 

According to the Associated Press and Boston.com, public hearings are being held this week in the Massachusetts legislature to ban the practice for those students that do not have court approval.  The Center’s attorney, Michael Flammia, is calling that discrimination.

 

What do you think?  Is skin shock therapy barbaric, or is it a necessary measure to help out of control students?

The R Word: Tracy Morgan: Oops!…I Did it Again

In the latest incident of a celebrity using the “R” word, Tracy Morgan, fresh from his apologies over making anti-gay remarks, made “jokes” about “young retarded males” during a recent comedy appearance. It was reminiscent of Jenifer Aniston’s description of herself as “retarded” on the David Letterman show.

The New York Times reported Morgan’s gaffe without condemning it, in a story titled “Comedian, Chastened, Gets Back to Laughs.”

Really, New York Times? Laughs?  The disabled community does not find Tracy Morgan any funnier than the gay community did.

 

 

 

 

Play Ball! Special Needs Kids on Long Island

A brand new baseball little league has been form on Long Island, welcoming disabled children.  The Little League of the Islips’ Challengers team is comprised of two teams, the Hurricanes and the Cyclones.

As CBS News commented, “the Field of Dreams belongs to everyone.”

The Challengers are the brainchild of Kelly Pipitone and Frank Fritz.  Kelly’s son Jake plays on the team.

There are some special rules too– According to Newsday, each player will be accompanied by a volunteer who will stay by his or her side during the game.  One other special rule?  Everyone wins.

And truly, with dedicated parents and coaches, everyone on Long Island does win.

Charlie Will Never Return: MTA to No Longer Run Long Island Bus

According to Newsday, the MTA voted today to end its contract with Long Island bus, despite protests from bus riders and pleas from transit advocates.   As of December 31st, a private company will take over the operations.

What private company?  It isn’t yet known.  This does not bode well for a smooth transition.

As I have said before, this disproportionately affects the disabled and the elderly, but as of today, all we can do is wait and see what happens.

And as to Charlie, mentioned in my headline above, he may never return.

Long Island Bus Cuts–Public Hearing March 23

Call to Action

 

Everyone who has any family members or friends who are disabled or elderly must attend this public hearing  at Hofstra University March 23, 2011 at 3PM to protest the plans to cut 25 of Long Island’s bus routes and 20% of Able-Ride’s service cuts.

Cuts unfairly target Long Island’s Disabled Riders

 

The MTA is set to vote in April on its plan to cut 25 , or almost half, of its Long Island bus service routes in July.  The MTA is claiming, and perhaps rightfully so, that it is unfair that Nassau County only contributes $9.1 million to the Long Island Bus annual budget of $141 million.  In contrast, Suffolk County contributes $24 million to its $48 million bus budget.

These service cuts would strand 16,000 riders, many of whom are disabled, and unable to afford taxis.  Currently, the bus services more than 100,000 riders each day.

My daughter takes three buses in each direction to get to her classes at Nassau Community College.  It already takes her more than two hours each way.  Last semester she took an evening course and often missed the last bus and had to take a taxi to get home.

Disabled to Lose Able Ride Buses

 

According to Newsday, as many as 18%, or 200 of Able-Ride’s 1130 daily riders will no longer be eligible for door-to-door service if the proposed cuts are made.

I urge everyone to attend the public hearings at Hofstra University March 23, 2011 at 3PM.  You can take the N46 or the N47 bus lines to get there.

Special Education Success at School for Disabled

The Henry Visconti School, a New York State supported special education school that prides itself on treating its students with dignity and respect, was recently praised in the New York Times for allowing severely disabled students to succeed in school through the use of technology and on-site medical care.

According to the school website, the Henry Viscardi School is a teaching community of students, parents, teachers, staff, and volunteers dedicated to empowering students with physical disabilities and health impairments to enable them to be active, independent, self sufficient participants in society.

I’m proud to know this school exists in our neighborhood, and is a fine example of how our tax dollars are spent to help the special needs community.

What’s in a Name? Rosa’s Law Passed

Federal statutes will no longer use the term “mental retardation” instead substituting the phrase “intellectual disability.”  President Obama officially signed into law this October a bill that has spent months wending its way through Congress.

Who is Rosa?

Rosa is a now 9-year old Maryland girl with Down’s Syndrome.  Her mother took issue with the school calling her daughter retarded.  “There hasn’t been one ounce of opposition. People had already gotten rid of the term, except in slang,” Rosa’s mother, Nina Marcellino said.

Why is the Language we use Important?

Peter V. Berns, CEO of The ARC (the battle to abolish the term “retarded” has been going on for decades, and in the 1980s families and people with developmental disabilities changed the name of Association for Retarded Citizens to ARC.) “We understand that language plays a crucial role in how people with intellectual disabilities are perceived and treated in society,” Berns said in a statement. “Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.”

Will New York Ever Become Politically Correct?

As I have said before, New York is one of the few states that have not yet removed the phrase “retardation” from one of the largest organizations of its kind: the Office of Mental Retardation and Developmental Disabilities (OMRDD).

It is time New York joined the Federal government and 44 other states in removing this arcane language.

Apple’s iPad Proving to be a Boon to Special Needs Families

Children with speech and communication problems are benefiting from apps designed for the iPad.

“Before she got an iPad at age two, Caleigh Gray couldn’t respond to yes-or-no questions. Now Caleigh, who has been diagnosed with cerebral palsy, uses a $190 software application that speaks the words associated with pictures she touches on the “tablet” device.”

According to the Wall Street Journal, Apple’s $599 device threatens to make obsolete specialized speech machines that can cost as much as $15,000: http://online.wsj.com/article

Improving I.Q. for Autistic Toddlers

An exciting new study has shown that an intensive behavioral intervention raises the I.Q. level of toddlers diagnosed with autism spectrum disorder (ASD).  This study, reported by Pediatrics, the official journal of the American Academy of Pediatrics, compared 48 children diagnosed with ASD by placing the children in one of two controlled groups.

Early Start Denver Model (EDSM)–for Young Children with Autism

According to Pediatrics, the study assigned the children into one of two groups:

  1. ESDM intervention, which is based on developmental and applied behavioral analytic principles and delivered by trained therapists and parents for 2 years; or
  2. referral to community providers for intervention commonly available in the community.

The results showed much greater gains for the intensive EDSM intervention as opposed to the community intervention.

An Interview with the Studies’ Author

The NYTimes Health section blogged about this study recently.  Tara Parker-Pope interviewed one of the developers of this new intervention, Sally J. Rogers, a professor of psychiatry and behavioral sciences at the University of California, Davis.  Dr. Rogers describes the new intervention as playful and interactive as opposed to adult instructional and further discusses how this new method might work with an autistic child.  The full interview can be found here.

The Book

Early Start Denver Model for Young Children with Autism: Promoting Language, Learning, and Engagement became available at the end of December.  Additionally, many of the resources can be found online at  The Early Developmental Studies Lab. I can only hope that the reality lives up to the promise.


Are Schools Prepared for an Increase in Autism-Related Special Needs?

The reported rate of autism spectrum disorders (ASD) has significantly increased and is now expected to affect 1% of children ages 3 to 17, or approximately 1 in every 100 children, according to two recent major studies.  Both the Centers for Disease Control and Prevention (CDC) and a study published in the journal Pediatrics indicate that the reported rate has increased from previously reported levels of 1 in 150 persons.  Even more alarming, boys are four (4) times more likely to have ASD than girls of the same age, which means that the likelihood of having a boy with ASD is around 1 in 60, a staggering number.  The second government study conducted by the Health Resources and Services Administration used data from the 2007 National Survey of Children’s Health.

Some researchers urge caution when interpreting the new numbers, suggesting that the reported increase is due to increasing awareness of the symptoms, as opposed to an actual increase in diagnoses.  Additionally, according to the children’s parents, many of the reported cases are mild forms of the disorder. Controversial author David Kirby questions this theory at the Huffington Post.  He asks if the actual rate of autism in children has not increased, how is it possible that as adults we have not noticed that 1 in every 60 adult males we come across has some form of ASD?  Kirby adds anecdotal evidence from long-term teachers and special education administrators who cite their long years of experience in refuting the notion that reported increases in autism related disorders are merely a function of greater awareness.

As many parents and professionals know, autism and related disorders such as Asperger’s and pervasive development disorder can be a frustratingly difficult diagnosis to make as it can only be made based on behavior instead of by more objective means such as a blood testing.  These behaviors include difficulties with social interaction and communication and are often accompanied by repetitive behavior.

However, whether the increase is due to better reporting or an actual upsurge, better informed parents and doctors mean more parents demanding educational and other services.  As this population ages, there is no doubt that both the government and private sectors must be prepared for an escalation in demand for supportive housing, employment, social and financial support.

According to CNN and the Associated Press, Dr. Tom Insel, director of the National Institute of Health, stated that the federal government is increasing resources to address autism and related disorders, adding millions of dollars for autism research, screening and treatment and adds that President Barack Obama has made autism research a priority.

It is more important than ever to plan for the future of our disabled children.  We should not depend solely on government support to financially support our disabled children, whether diagnosed with an autism spectrum disorder or any other type of disability.  Just as our federal and state governments need to prepare financially for the influx of disabled children into the school and health care systems, parents need to make estate planning a priority to ensure the financial well-being of the disabled population as soon as possible.