NYS Legislation Addresses Waitlist

Sorry - but no further details than this at the moment.

ALBANY, N.Y. — New York lawmakers have passed legislation intended to clear what one lawmaker calls a waiting list of 12,000 disabled individuals who need services or housing.
The bill directs the Office for People with Developmental Disabilities to clarify and implement new guidelines by April 1 identifying services needed for families to keep a disabled relative at home and indicating when residential placements are appropriate.Assemblyman Harvey Weisenberg says many of the 12,000 are "aging out" of programs when they turn 21 or have aging parents who need more help to keep them at home or can't do it anymore.

OPWDD says most individuals on the list already get some services and that measures will be rolled out in coming weeks to improve response times, streamline access and better manage residential capacity. 

Parents of Children with Autism Less Likely to Have More Kids

Parents of children with autism sometimes decide not to have more children after their first child is diagnosed or shows signs of the disorder, a new study suggests.Researchers analyzed information from about 19,700 families that had a child with autism between 1990 and 2003, and about 36,200 families that had a child who did not have autism in this same time period. The researchers examined the chances that each family went on to have more children over a 15-year period (between 1990 and 2005).

Once Fighting for Her Life, 5-Year-Old Graduates Preschool

Why does it take a 3-year-old connection to a random shooting to capture the media's attention for a preschool graduation for children with special needs? Really struggling with this one.

Anyway, here are two inspiring story from WABC-TV's Eyewitness News and the New York Daily News.

NEW YORK —

Three years ago, a baby girl named Patience Boyd was shot in the head, caught in the crossfire on a street in the Bronx.

At times, doctors warned her family the then-2-year-old might not make it. But Wednesday was proof that Patience has won outThe 5-year-old is looking forward to kindergarten with a reason to smile and wave after sharing the stage with her classmates at the graduation for the New York League For Early Learning Gramercy School.
"It's a huge accomplishment," mom Lisandra Garcia said. "I didn't think she was going to make it this far.

NEW YORK — The infectious smile on the 5-year-old girl’s face brought tears to her mother’s eyes.

Precocious little Patience Boyd nearly died three years ago when a gunman’s random bullet tore through her head on a Bronx street. Her prognosis was dire, and her mom, Lisandra Garcia, was devastated.

“She couldn’t talk,” Garcia recalled Tuesday. “She didn’t have facial expressions. She would look at you, and that’s the most you would get from Patience.”

The courageous kid has since made a miraculous comeback, and she graduates Wednesday from the preschool program at YAI — a network of agencies assisting people with disabilities.

Years on Wait Lists Await Adults Seeking Support

For 30 of her 48 years, Suzy Graves of Overland Park has been sorting things in a work program with Johnson County Developmental Supports. Sometimes it’s herbs going into little bags with stickers, sometimes it’s the components of medical testing kits.

She likes it fine, she says, because “you get back in the swing of things, get back in normal life.” And of course, there’s the paycheck.Graves has been at JCDS almost from the minute she graduated from high school. Back then, it was possible for people with developmental disabilities like cerebral palsy and autism to go straight from school into a job doing the kind of work Graves does.

Read more here: http://www.kansascity.com/news/local/community/joco-913/shawnee-lenexa/article571994/For-those-needing-developmental-support-years-on-a-waiting-list-often-lie-ahead.html#storylink=cpy

NYS Focusing on Adult Services

The Assembly passed a bill last week that would address the needs of the growing number of adults with developmental disabilities. The legislation would create a 10-member task force to study, evaluate and develop recommendations for addressing the issues facing adults with special needs.
"Historically, the focus has been on providing support and services for children with developmental disabilities," said Assemblywoman Aileen Gunther, sponsor of the bill. "As these children begin to age-out of the educational system and reach adulthood, we have a responsibility to ensure that their needs — be it housing, employment or appropriate community based supports — are being met."

Kindergartner with Autism Not Allowed to Participate in Graduation Ceremony

GRAND RAPIDS, Mich. — Dickerson Elementary School has a special needs program and Anthony Betts, a six year old kindergardener, is one of these children. His mother Ebony Betts spoke out when she found out there would be no graduation ceremony for her son or his classmates.The Grand Rapids Public Schools (GRPS) decided it would be in the best interest of the special needs class not to attend the ceremony. There rational is that the ceremony is large, loud and can be overwhelming for those with an autism disorder.

Study: Half of Adults with Autism Abused By Someone They Know

A very disturbing story from across the pond. 

LONDON — Half of adults with autism have been abused by someone they know, a new study has found amid warnings of the 'devastating scale' of neglect and abuse.

Many people diagnosed with the condition are staying at home because they are afraid of being abused or harrassed, the National Autistic Society (NAS) said today.

People with autism can find it hard to interpret other people's motivations and as a result can be taken advantage of or manipulated, the charity said.

NJ Assembly Considers Halting Transfers

Two unexplained deaths, push to return residents from out-of-state centers, disturb families and advocates.

Dawn Apgar

They also want to stop the state from forcing the return of developmentally disabled residents who have been living in out-of-state facilities.Alarmed by reports of two deaths after the state transferred patients out of developmental centers into group homes, legislators are calling for a moratorium on any more transfers pending further investigations.

State Hopes Tax Credit Will Create Jobs

HAVERSTRAW, N.Y. — New York State officials are hoping that a new tax credit will convince more businesses and organizations to hire people with intellectual and other developmental disabilities.

Starting Jan. 1, employers that do so will be eligible for tax credits of up to $5,000 for a full-time employee (30 or more hours per week) and up to $2,500 for a part-time worker. The Workers with Disabilities Tax Credit program, also called Inspire New York, will cost the state up to $6 million a year for the five years the law is in effect, a spokesman for Gov. Andrew Cuomo's Division of the Budget said.

Some N.J. Families Fear Transition

LANGHORNE, Pa. — Returning Home to New Jersey is an initiative that's moving hundreds of New Jersey residents with developmentally disabilities, who get care at large out-of-state facilities to small group homes within the state. For some the transition is smooth but for others, families fear it will be devastating.

Special Olympian Representing New York City at Upcoming Games

BRONX, N.Y. — When Valerie Romero’s mother used to bring her on the sidewalk outside of their Morris Park Ave. home in the Bronx when she was a child, everyone would have to keep an eye out for her so she wouldn’t get anywhere near the street and the cars rushing by.

“We had to run and catch her,” Nancy Romero said. “If you’d bring her out here she would just run, run, run, run. In the park, too.”

Many years later, Valerie Romero is still running. And people are still trying to catch up to her.

Romero, now 44, is one of the 3,500 athletes who will compete in the Special Olympics USA Games in Mercer County, N.J., next week.

Autism at Work

Bravo SAP and Thorkil Sonne who recognizes the skills of individuals with autism and their talents and puts them to work. We were proud to have him as a keynote speaker at our recent 2014 International Conference.

For much of his adult life, 28-year-old Patrick Viesti has worked to keep the signs of Asperger's syndrome at bay, but even after a successful college career, finding a job was not easy."To truly be honest, I would have to say it was quite difficult," Viesti said.Viesti said he had come off stiff or monotone during the interview process, reports CBS News correspondent Michelle Miller. However, his luck changed thanks to the software company he now works for. SAP recruited him and a number of other new hires this year because of their autism.

Lifetime Cost of Autism Tops $2 Million

U.S. and U.K. scientists have completed the most comprehensive analysis of the costs associated with supporting a child with an autism-spectrum disorder (ASD) over a lifetime and found that those whose ASD is linked with intellectual disability can accrue up to $2.4 million while those without intellectual disability require about $1.4 million in medical, nonmedical and indirect costs. And that’s on top of the average $241,000 that it takes to raise a child to age 18 in the U.S.

Study Ties Pollution to Autism, Schizophrenia

ROCHESTER, N.Y. — Tiny bits of air pollution may irritate very young brains enough to cause problems, according to a study published in the journal Environmental Health Perspectives.

When mice younger than 2 weeks old were exposed to very small particles of pollutants, their brains showed damage that is consistent with brain changes in humans with autism and schizophrenia. That's not to say air pollution causes either one, said Deborah Cory-Slechta, professor of environmental medicine at the University of Rochester Medical Center and lead researcher in the study published Friday.

After Consulting, Cuomo Ally to Oversee Medicaid Money

ALBANY — Former deputy secretary of health Jim Introne is returning to the state Department of Health to help oversee the disbursal of more than $6 billion in federal money from a recently approved Medicaid waiver, possibly to health care organizations who are clients of the politically well-connected firm he recently worked for.Introne, who began working at the state health department on June 5 this year, will serve as special adviser to the state health commissioner, a department spokesperson confirmed.In his new position, Introne will provide counsel on matters related to the health department's Delivery System Reform Incentive Payment (DSRIP) program, the spokesperson said.

Study Finds Anxiety Lingers in Adults with Autism

People with autism often feel anxious, worrying about everyday events and ruminating on their fears for long periods of time, reports a study published 8 May in the journal Autism.Previous studies have linked a high intelligence quotient to anxiety in children with autism. But little is known about anxiety in adults with the disorder.

OPWDD Acting Commissioner Resigns

ALBANY, N.Y. -- Just less than a year after she came on board, and with no fanfare, Laurie Kelley has resigned as the acting commissioner of the state Office for People with Developmental Disabilities.The new acting commissioner is the agency's Executive Deputy Commissioner Kerry Delaney, according to the Cuomo Administration.It wasn't immediately clear why Kelley, who previously ran the well-respected Ulster-Greene ARC operation for those with disabilities, stepped down.

Study Ties Hormone Levels in Womb to Higher Autism Risk in Boys

Some boys with autism may have been exposed to slightly elevated levels of certain hormones in the womb, a new study suggests -- though it's not clear yet what the finding means.Researchers found that of 345 boys with and without autism, those with the disorder had somewhat higher levels of steroid hormones in stored samples of their amniotic fluid. Specifically, they had elevated levels of four sex hormones, including testosterone and progesterone, and the stress hormone cortisol.

High Court Throws Out Term 'Mental Retardation'

The U.S. Supreme Court is often divided, but on one little-noticed point last week, it was unanimous: the term "mental retardation" is no longer appropriate to use. This may seem trivial and way too late. Mental health professionals and most of the rest of us long ago abandoned that phrase, which echoes insulting schoolyard epithets.

But at an institution whose decisions have broad impact, the court's action is a significant sign of society's progress toward treating each other with dignity.