Opinion: Truth About Down Syndrome

Oped piece from today's edition of The New York Times by Jamie Edgin, an assistant professor of psychology at the University of Arizona, and Fabian Fernandez, a research associate at the Johns Hopkins University School of Medicine.

Last week the biologist Richard Dawkins sparked controversy when, in response to a woman’s hypothetical question about whether to carry to term a child with Down syndrome, he wrote on Twitter: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”In further statements, Mr. Dawkins suggested that his view was rooted in the moral principle of reducing overall suffering whenever possible — in this case, that of individuals born with Down syndrome and their families.But Mr. Dawkins’s argument is flawed. 

Overcoming Adversity a Stride at a Time

Three to four times a week, Alex Schneider, 24, laces up his running shoes and goes for a run to train for his next marathon.

Always, his longtime coach, Kevin McDermott, runs with him. It’s a partnership that has been going on since Schneider and his twin brother, Jamie, were teenagers. With McDermott, Alex Schneider has run marathons in under 3:20, one-mile races in under 6:30, 10Ks, 5Ks and whatever else he can. Jamie, also a runner, runs mostly for fun.Without McDermott, Alex Schenider would be lost – literally and perhaps figuratively.

More Families Join Disney Lawsuit

 Walt Disney Parks and Resorts could be facing a lot more angry families of children with developmental disorders if the plaintiffs in the ongoing American With Disabilities Act lawsuit get their way. In fact, the discrimination suit over access at Disneyland and other theme parks filed back in April against the media giant could nearly triple. “After the initial Complaint was filed, undersigned counsel received an outpouring of phone calls and emails from victims and their families, similarly situated to the 26 existing Plaintiffs,” said lawyers Andy Dogali and Eugene Feldman in one of several filings today in federal court. “Most of the victims wanted to offer cheers of support and witness assistance; some were in search of counsel. Ultimately, the undersigned counsel agreed to represent many of them.”

Study Links Fracking to Health Risks

NEW YORK — The first research into the effects of oil and gas development on babies born near wells has found potential health risks. Government officials, industry advocates and the researchers themselves say more studies are needed before drawing conclusions.
While the findings are still preliminary, any documented hazards threaten to cast a shadow over hydraulic fracturing, or fracking — the process of blasting chemicals, sand and water deep underground to extract fuel from rock that has helped push the United States closer to energy self-sufficiency than at any time since 1985.

Sheltered Workshops, DOJ & Olmstead

Leslie Winkler stacks nozzle mechanisms for spray bottles in a box. Six per box, just so, over and over again. At other times she might be putting labels on bags of coffee. All day.

Winkler does this three days a week in a warehouse in an industrial park in eastern Independence.Barb Winkler of Lee’s Summit is grateful that her 33-year-old daughter, who has Down syndrome, has a place to go and be productive, even if she earns only $1.85 an hour at the JobOne sheltered workshop.“You want them to optimize their potential and do everything they’re capable of doing,” Winkler said of people with disabilities.The question is whether this warehouse is the best way to do that.The future of such places — sheltered workshops that pay subminimum wage to workers with various disabilities — is uncertain in light of a new Medicaid rule and a new law signed last month. Based on a 1999 Supreme Court decision, the two actions confirm the government’s commitment to integrate people with disabilities into the larger community as much as possible.

Read more here: http://www.kansascity.com/news/government-politics/article1297132.html#storylink=cpy

NYC Schools Lose $356 Million in Special Ed Funding Due to Poor Accounting

NEW YORK — City public schools lost $356 million during the past three years in federal Medicaid payments for special education services because city and state officials failed to properly apply for reimbursement, the Daily News has learned.

“Red tape and bureaucracy should not stand in the way of (the city) being reimbursed for the vast array of services provided,” city Controller Scott Stringer said in a report obtained by The News.

As a result, between 2012 and this year, the city Department of Education kept shifting funds originally slated for books, supplies and other general costs to pay for those special education services, Stringer said.

Developmental Disabilities in Children on the Rise, Study Finds

CHICAGO — Disabilities among U.S. children have increased slightly, with a bigger rise in mental and developmental problems in those from wealthier families, a 10-year analysis has found.Disadvantaged kids still bear a disproportionate burden.

A Birthday Wish Comes True

A story to get your Friday off to a good start!

Justin Timberlake made a boy with autism's birthday extra special by singing him a personal birthday song.

All Julian wanted for his eighth birthday were tickets to see his favourite pop star, Justin Timberlake.

Mary MacCracken, Who Wrote About Disabilities, Dies at 88

Mary MacCracken, whose memoirs about her intensely individualized approach to teaching children with emotional and cognitive disabilities were made into television movies, died on July 23 in Hanover, N.H. She was 88.

The cause was complications of melanoma, her daughter Susan L. Thistle said.

Mrs. MacCracken entered the special education field in the late 1960s as a once-a-week volunteer at a private school in New Jersey. There, she wrote, she became enthralled with children whose extreme behaviors included hiding in closets and obscenity-laced tirades that tended to scare off many volunteers on sight.

New York City Schools Struggle to Keep Up with Special-Education Overhaul

NEW YORK — From the moment they met him, the staff at School of the Future were concerned about Joseph.The incoming sixth-grader had attention deficit hyperactivity disorder, another behavioral disorder, and a learning disability, which became apparent last year when they interviewed him and reviewed his academic records.The educators at the public school in Gramercy Park are known for their prowess at integrating students with disabilities into general-education classes, and at first they tried that approach with Joseph. They placed him in a mixed class with typical and disabled students headed by two teachers, gave him modified assignments, sent him to small-group reading sessions, and dispatched a seasoned special educator to work with him.None of it was enough.

He Wouldn't Take No for an Answer

Having just completed a four-day training for CQL's Personal Outcome Measures (POMs), this story is definitely resonating the philosophy of wanting more in life. Why should anyone have to settle for being a bagger for six years, if he or she wants to do something else?

NEW YORK — When Matt Cottle asked his boss to let him work in the supermarket's bakery, she told him he'd never do anything more than collect grocery carts.

After six years of bagging groceries and pushing carts, Cottle wanted more. He had already learned how to do some baking.Cottle is autistic. And today he's an entrepreneur, the owner of Stuttering King Bakery, turning out batches of cookies, brownies and scones for cafes and businesses and groups that need catering.

Study: Excessive Folic Acid Alters Offspring's Brain Development

WASHINGTON, — A new study led by an Indian American scientist from New York report that higher doses of folic acid during pregnancy and throughout life may have lasting negative effects.
The researchers found in their study that the higher doses of folic acid altered offspring’s brain development and behavior in ways that are found in neurodevelopmental disorders, according to a press release issued by the New York State Office for People With Developmental Disabilities’ (OPWDD) Institute for Basic Research in Developmental Disabilities (IBR).

Editorial: Autism Transition Bill Deserves Swift Presidential Approval

You’re a parent with a child on the autism spectrum and you’ve just gotten the phone call you’ve dreaded for a decade or so: “Your son (or daughter) has aged out of the system.”

Every year, more and more fathers and mothers in New Jersey hear those words. They mean families no longer have access to the support systems that school-based programs provide for young adults who desperately need them.

They mean, essentially, you’re on your own.

Judge: NYS Nonprofit Pay Cap Legal

ALBANY — A Suffolk County Supreme Court justice ruled Wednesday that a salary cap on nonprofit providers instituted by Governor Andrew Cuomo in 2012 is legal, dealing a blow to providers who said the cap was an overreach by the state’s health department and could impair providers’ ability to serve their patients.

The ruling comes a few months after a state court ruled the cap violated state law in a separate lawsuit filed against the regulation.

Using Service Dogs for Autism

BREWSTER, N.Y. — If you own a pet, you probably agree: There's just something nice about having it around.

Researchers at Green Chimneys in Brewster have noticed the same thing and use animals for a variety of therapeutic roles. Horses, sheep, dogs, all have been shown to help people with mental or physical disabilities.

Schumer Optimistic ABLE Act Will Pass

SYRACUSE, N.Y. — New York's senior U.S. Senator said it is time to act and approve the ABLE Act.Charles Schumer said the legislation has overwhelming bi-partisan support on Capitol Hill and should be approved in time for the nation's observance of the 25th anniversary of the Americans with Disabilities Act.Schumer said the bill would offer the benefits of a 401K or a 529 education savings program to parents and friends of the disabled. They could set aside money, tax free, to cover various costs they face.

Controversy Over Use of Shocks to Modify Behavior at Mass. Center

Just a horrifying story, but curious if others have the same reaction. Be sure to watch the video. Would also like to see more evidence in the use of this practice. When I posted the story with my horror on my personal facebook page last night, a friend who has a son with autism, said she understands that, but she also saw the side where if a child is violent, what are families to do?

Jennifer Msumba is on the autism spectrum. For seven years, she was treated at the Judge Rotenberg Center in Canton, Massachusetts, where she received painful electric shocks aimed at modifying her behavior. She describes being strapped, spread-eagle to a restraint board and shocked multiple times before she left the center in 2009."It's so scary. I would ask God to make my heart stop because I didn't want to live when that was happening to me. I just wanted to die and make it stop," she told CBS News correspondent Anna Werner in an interview at her mother's home outside Boston. "I thought, they won't be able to hurt me anymore."

Opiniion: NJ Must Re-Evaluate Developmental Center Transfers

Bob Gordon, D-Fair Lawn, represents the 38th District in the state Senate; Peter Barnes III, D-Middlesex, represents the 18th District in the state Senate.

Almost three decades ago the Krautman family of Fair Lawn struggled to find a local community living facility for their daughter Stacie, who has a severe form of Down syndrome. They could not find a New Jersey facility to meet their daughter’s unique needs but, thankfully, they found one in neighboring New York that did.
But after 27 years of living in New York, Stacie and hundreds of others living in out-of-state facilities are being uprooted by the Christie administration and forced to move back to New Jersey. Why? Because the state qualifies for additional federal funding if Stacie and others live here.

Schumer Seeks Pre-Tax Account for Special Needs Families

Parents can put away pre-tax dollars for their children’s college education and save for their retirement accounts but if they had an offspring with special needs that option is currently not available.

Until now.
Sen. Charles Schumer said he is advocating for a new federal bill that will allow parents of special needs children, such as those suffering with Down Syndrome, Autism or Fragile-X, to create a pre-tax, IRA-like account that they can use to tap into for funds for such services as education, transportation, housing, health and wellness and employment support. The bi-partisan bill was passed by the Senate’s Ways and Means Committee last week and is now headed to its Finance Committee.

An Open Letter to Jet Blue

Interesting Blog post by Shawna, a mother of two children with special needs. It originally appeared on her blog — Not the Former Things

Dear Jet Blue Airlines,

I am writing this post to thank you.My son has high functioning autism and, because of the custody arrangement between his father and I, we fly 7-9 times a year out of sheer necessity. Flying, with all of it’s loud announcements and crowded waiting areas and unusual smells, is quite frankly torture for him. He has acute sensory processing issues that affect us even in simple every day situations, so you can imagine how complicated airports and airplanes are for us.

NYS Threatens Medicaid Clawback Suit

ALBANY — New York State plans to appeal and could sue the federal government over an order from the federal Centers for Medicare and Medicaid requiring the state to repay $1.26 billion in Medicaid overpayments, a new quarterly state budget report said.

The order, delivered in a letter to state health officials on July 25, said the state owed repayment on Medicaid funding dating back to fiscal year 2010-11. Federal officials also warned New York they could seek more money from the two subsequent budget years, pending the results of a federal audit of state Medicaid spending.

In NJ, Some Still Struggle to Adjust to Deinstitutionalization

WOODBRIDGE, N.J. — Wendy English’s cerebral palsy makes it difficult for her to speak, but she seldom has trouble making herself understood.

When language fails her, the wide-eyed, freckled 51-year-old woman flips on an audio device, points to pictures and phrases in a laminated book, or relies on the staff at the Woodbridge Developmental Center who know how to interpret her.

For more than six months, English’s message has been: I’m depressed. I’m frustrated. I want to hurt myself.

The state plans to shutter Woodbridge, her home for 18 years, to free up money to move people with disabilities into smaller community housing — a move praised by many disability advocates,

Opinion: People as Pendulums

Age of Autism is reprinting this article by Tamie Hopp with permission. To view the original, please visit NPQ, The Non-profit Quarterly.  If you have a child with autism or another disability, we suggest you join VOR (Vee-Oh-Are) an AofA sponsor and one of the only advocacy groups fighting for INDIVIDUALIZED housing and adult care.  There are self-advocates and others who know nothing about the needs of our loved ones with autism who are seeking to deny choice. Learn more at the VOR site.

In 1965, then-Senator Robert Kennedy toured the Willowbrook institution in New York State and offered this grim description of the individuals residing in the overcrowded facility: "[They are] living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo." 

The atrocities of Willowbrook ushered in a generation of advocates, nonprofit organizations, providers, and professionals who successfully pushed for massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR) [later renamed as ICFs for Individuals with Intellectual Disabilities (ICFs/IID)].

Families and advocates alike applauded this infusion of federal funding, licensing and oversight for a program specifically designed to meet the needs of individuals with intellectual and developmental disabilities (I/DD).

Still, as the ICF/IID program grew, so did calls for housing alternatives. Critics emerged, claiming that the ICF/IID federal standards of care promoted a non-individualized, inefficient model of care, and, due to federal financing incentives, discouraged states from developing alternate service options.  In 1981 Congress responded by providing for small (4-15 person) ICFs/IID and a Medicaid Home and Community-Based Services (HCBS) waiver, to allow states to “waive” certain ICF/IID requirements.

These early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD.  These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.” 

The Kids Who Beat Autism

From this Sunday's New York Times Magazine.

At first, everything about L.'s baby boy seemed normal. He met every developmental milestone and delighted in every discovery. But at around 12 months, B. seemed to regress, and by age 2, he had fully retreated into his own world

Mark Macluskie, 16, who is
 no longer autistic. Credit

. He no longer made eye contact, no longer seemed to hear, no longer seemed to understand the random words he sometimes spoke. His easygoing manner gave way to tantrums and head-banging.
“He had been this happy, happy little guy,” L. said. “All of a sudden, he was just fading away, falling apart. I can’t even describe my sadness. It was unbearable.” More than anything in the world, L. wanted her warm and exuberant boy back.

NY Debates If Housing Is Health Care

Standing outside her sixth-floor apartment in the Bronx, Lissette Encarnacion says she sometimes forgets the place belongs to her.

"I'm thinking I'm at somebody else's [house]," she says. "I'm ringing my own doorbell."Encarnacion used to have a career in banking, and lived in a real home with her son and husband. Then one night everything changed, she says, when her husband came home drunk and angry, and threw her off a balcony."He came home, pulled me from the hair, and just started beating the hell out of me," she says. She was seven months pregnant with her second child, a boy.Encarnacion suffered traumatic brain injury and was never the same. She and her sons moved in with her sister, but Encarnacion often wandered off.