Wednesday, June 30, 2010

Social Service Agencies Await Budget Ax

ROCKFORD, Ill. -- Zero. That's the dollar amount "The ARC," received from a state contract for a program that helps people with disabilities live at home.
Jacki Neil Boss, the Executive Director of "The ARC," says, "we don't know what will be paid to do it and so therefore we don't know how to budget."
The ARC usually gets over $100,000 to provide activities and assistance to people in the stateline with developmental disabilities. But those people could be hurt, if the state cuts its services.

Illinois Bracing For Budget Cuts

SPRINGFIELD, Ill. -- From the disabled who need help to stay in their homes to school districts trying to balance their own budgets, people who rely on state spending are bracing for Gov. Pat Quinn's budget scalpel.
Quinn said Monday he's preparing to deal with the proposed spending plan approved by lawmakers last month and that cuts are coming, although he did not specify where they will land.

Tuesday, June 29, 2010

Website Rates Businesses Accomodating People With Disabilities

CHICAGO -- Few restaurants or retail businesses can afford to shy away from nearly 20 percent of their potential customers, particularly in this economy. Yet consumers with physical or developmental disabilities -- who spend an estimated $175 billion a year -- aren't always served with respect or understanding.
"A lot of businesses don't look at people with disabilities as a marketplace," said JJ Hanley, founder of jjslist, a website that rates how local businesses accommodate what is the fastest-growing minority in the country. "There is true value in making their workplaces flexible and respectful of people with disabilities."

Monday, June 28, 2010

Ready To Take Mound at Fenway

WEST GARDINER, Maine -- Jackson Hickey will be on the mound Tuesday night at Fenway Park, not as a replacement for the battered Red Sox staff but to throw out the first pitch.
The 11-year-old resident will be center stage on disability awareness night prior to Boston's game against Tampa Bay. Jackson's mother, Jayne, entered her son's name into a contest promoted by Exceptional Parents Magazine and got a response within 24 hours.
"I filled out (a form) and I saw the Red Sox were an option," she said. "I said 'I'd really like to make his dream come true.'"
The magazine honors a special family each year and selected the Hickeys for their compelling story.
The trip to Fenway will be Jackson's first. He was born with Down Syndrome and diagnosed with autism at age 5. Like the rest of his family he's an avid Red Sox fan and reacted with joy when he heard of his trip to the game about a month ago.

Learning the Power of Belief

MISOULA, Mont. -- In the last year, Amanda Stoumbaugh has mostly kept to herself.
Growing up and attending Bonner Elementary and Sentinel High School, she would sing in the school hallways and speak whenever it suited her. In the spring of 2009, she moved into a group home. Suddenly, she was talking a lot less.
Only recently has Stoumbaugh - who has cerebral palsy, epilepsy, is visually impaired and gets around in a wheelchair - started to come out of her shell. Her mother, Rita Kearn, says it's important now, more than ever, for Stoumbaugh to learn to communicate her needs.
So, when Kearn learns her 19-year-old daughter has a speaking role in a production of "The Little Engine That Could," a play adapted from the popular children's book by the same name, she knows this is one performance she can't miss.

N.J. College Welcomes Students With Down Syndrome

MORRIS TOWNSHIP, N.J. — Benjamin Dorne hasn't started college yet, but he's already worried about four years from now when he graduates and leaves all the friends he expects to make.
Dorne has seen his two brothers go off to college and it never occurred to him that he wouldn't attend as well. He isn't worried about living on his own, instead he's anxious that he'll be sad to leave college when he's done.
Dorne, 21, who has Down syndrome, will attend The College of New Jersey this fall, a member of the fifth incoming class of the college's Career & Community Studies, a four-year certificate program for adults with intellectual disabilities.

Book Details Father's Journey To Accept Son's Autism

DALLAS -- Fatherhood did not go as planned for Dan Burns.
He spent decades seeking to rescue Ben, the youngest of his three children, from autism. The journey did not yield the ending Dan wanted. Ben's autism continues, with Ben now 22.
But the effort to save his son might have ended up saving the father.
"He changed me from a human doing into a human being," says Dan, 64, at the Observation Tower at the Arbor Hills Nature Preserve, one of the many parks where he and Ben enjoy regular bike rides. As he talks, Ben wanders off to sit on a wall where he can gaze at the treetops and the city below. It's a special spot where Ben is content to be quiet for an extended period of time, his father says.
"A human doing is someone who measures his self worth by his accomplishments, adding lines to his résumé. But it's not what you do or what you accomplish that counts, it's becoming who you are."

Speech Language Pathologists Key In Treating Autism

BROWNSVILLE, Tex. -- "Logan" was a nervous boy. He would bite himself whenever he was afraid. As a child with autism, changes frightened him. His biting was increasing because he could not communicate what he was feeling. Speech, the type, most people were used to, was not occurring with Logan. He was a 6-year-old that was totally non-verbal.
The child required constant work on helping him learn how to speak. Logan would make noises, mostly an "eeeee" sound. The question was would Logan ever be able to verbally talk? A speech language pathologist (SLP) was asked to work with Logan twice a week. A plan was developed to help Logan speak. The hope was that he would talk one day. In the meantime, there were other methods to help him speak.
One day, the teacher placed several items in front of the boy to see what Logan liked. Logan kept reaching for red gummy bears, only the red ones. He quickly learned to ask for red gummy bears by handing over an icon of gummy bear. Gradually, other picture icons were introduced to the boy. Logan immediately grasped what was expected of him. The teacher had never seen a child learn so quickly.

Friday, June 25, 2010

Non-Verbal Teen With Autism Delivers Commencement Address

Amazing video from Chantal Sicile-Kira on Huffington Post.

Today as we toured the local community college, my son (who is severely impacted by autism and has little verbal skills) turned to me and spelled out on his letter board, "Mom, you are nice to help my dreams come true."
How could I do any less than to help him reach his goals? My son has worked so hard to not be "imprisoned in darkness" as he so eloquently put it in the commencement speech he gave at his high school graduation on Friday, June 18.

Student With Autism and His Dog Thriving at School

FAIRVIEW HEIGHTS, Ill. -- There have been no outbreaks of allergic reactions, no wild, uncontrollable children disturbed by a dog at school and no issues with the dog going to the bathroom in the school hallways.
They're all reasons a local school district cited as why a dog couldn't attend class with his young student.
However, there has been a marked decrease in behavioral problems among a number of autistic students and an incredible difference in the 6-year-old boy who brings his dog to school every day.

Celebrating Graduation With Uncertainty About Future

PEAPACK-GLADSTONE, N.J. — The 10 students who recently finished their education at the Matheny Medical and Educational center are starting new lives.
And decisions about that new chapter can be just as challenging for the graduates, all of whom have developmental disabilities and other complex medical conditions, said some of the graduates' parents, and the school's principal.
The students, all 21 years old, graduated June 18 from a state-approved high school program at Matheny.
Some of the parents who attended the ceremony said they felt a mixture of pride and concern about their children's futures.

Wednesday, June 23, 2010

Staten Island Schools is "America's Favorite"

STATEN ISLAND, N.Y. -- Was there ever any doubt? PS 37 is "America’s Favorite School."
And $20,000 richer to boot.
The Great Kills school prevailed in an extremely close cyber-contest, the balloting for which was Tuesday night.
PS 37 is a District 75 school that serves children with various disabilities, including autism, cerebral palsy and Down syndrome. The $20,000 prize will go for therapy equipment.

Albany Passes Autism Insurance Bill

ALBANY — State lawmakers passed legislation this week that would require insurers to cover autism-related screenings, diagnoses and treatments. The move was a relief for parents of children with autism spectrum disorders, but was sure to increase insurance premiums across the board.
The State Assembly passed the measure Monday night, a few weeks after it passed in the Senate. The measure passed unanimously in both houses.
It now goes to Gov. David A. Paterson. New York would become the 22nd state in which insurers are required to cover autism-related treatments.

Tuesday, June 22, 2010

Editorial: People Before Disabilities

New York will finally update the name of the state office charged with ensuring fair treatment and quality-of-life to people with various developmental disabilities, not just by taking the "r" word out of the title, but by adding "people" to it.
The Office of Mental Retardation and Developmental Disabilities will now become the State Office for People with Developmental Disabilities, after votes taken last week in the state Assembly and Senate. The name change was originally introduced last year by Gov. David Paterson. Rhode Island remains the only state to have "retardation" in an agency title.
In deficit-ridden, budget-lacking New York, important concerns have been raised about costs, staffing and oversight at the state office. Paramount should be its responsibility to ensure quality and efficiency in serving those with disabilities. The name change, though, remains an important step in signifying respect and quality care for the people the office serves.

Parents Worry About Care For Their Adult Children With Autism

Be sure to watch the video - it's quite powerful.

TOLEDO, OH (WTOL) - Like all parents with special needs children, Fred and Julie Treuhaft face setting up longterm care for their 18-year-old autistic son, Ross. Caring for him is currently a 24 hour responsibility.
Two of their children, Jay and Kate, will follow the journey that many others do. They will go through school and eventually be on their own. But with Ross, the future is unclear.

Developmental Pediatrician Selected For Kennedy Fellowship

MANOA, Hawaii -- Dr. Jeffrey Okamoto, a pediatrician who works to improve the lives of islanders with developmental and intellectual disabilities, has been selected for a prestigious Joseph P. Kennedy Jr. Foundation Public Policy Fellowship.
He will leave next month for the intensive yearlong fellowship -- an opportunity to participate in public policy development. He is one of only three people in the U.S. chosen for the Kennedy program this year.
Okamoto expects to work in the office of Iowa U.S. Sen. Tom Harkin, chairman of the Health, Education, Labor and Pensions Committee. He said he does not know which bills he'll be working on, "but it should be an exciting year."

Monday, June 21, 2010

College Caters To Students With Disabilities

NAMPA, Idaho — The College of Western Idaho is offering two new classes that cater specifically to students with Down syndrome or other developmental and intellectual disabilities.
Administrators say the classes put the Nampa-based community college among other postsecondary institutions taking part in a nationwide movement to give these students a chance to pursue education and job training after high school.
For now, CWI is offering a class in American sign language and art as part of its new IDream program, which stands for Intellectual Disabilities Reaching, Educating and Achieving More.
Advocates say the value of the program is more than academics — giving a new group of students the chance to experience the challenge, atmosphere and responsibilities of college life.

Struggle To Educate Students With Severe Disabilities

Outstanding story from Sunday's edition of The New York Times that examines the struggles when trying to balance providing students with severe disabilities with academics and practical living skills. There's no simple answer, but perhaps someone would be interested in looking at a YAI model that has our day services program working with the high schools to ease the transition from board of education to adults day services and helps identify the practical skills they will need after high school.

NEW YORK -- Once predominantly isolated in institutions, severely disabled students have been guaranteed a free, appropriate public education like all children since the passage of federal legislation in 1975. In the years since, school districts across the country have struggled to find a balance between instruction in functional skills and academics while providing basic custodial care.
Many have "multiple disabilities," a broad category under the federal Individuals With Disabilities Education Act that refers to children who have at least two disabilities and severe educational needs.
There are 132,000 such students in the United States, out of more than 6.5 million now receiving some kind of special education service at an estimated cost of $74 billion a year.
Students with multiple disabilities can have a wide range of diagnoses, including cerebral palsy, rare genetic disorders and problems that stem from conditions in utero or at birth, some of which have no name.
For many of these students, the post-school future holds day residential programs, nursing facilities or group homes, not college or jobs. The concepts of educational reform and standardized assessment have little meaning for them; they are among the most costly to educate and the least understood.

Friday, June 18, 2010

Theater Group Breaking Barriers

MINNEAPOLIS, (AP) -- An orange-haired woman wearing a laurel wreath and a Grecian tunic sits on a man's knee at center stage, pretending to be his ventriloquist's dummy as he performs a song. With perfect timing and expressions, she mimes to his words, flinging her arms and legs.
As the play unfolds, the woman's Down syndrome seems to melt away at Interact Theater, a troupe that for 18 years has sprinkled its casts with nonprofessional actors who may be blind, have a traumatic brain injury or use a wheelchair. The Minneapolis group aims to break down audience perceptions of people with disabilities.
"That's a big part of the vision," said Interact founder and artistic director Jeanne Calvit. "It's not disability theater per se. It's theater that includes actors with and without disabilities."

Editorial: Autism Bill Can Be Better

Interesting editorial from Newsday on the Senate's Autism Insurance Bill. Giving you the full editorial in case you can't access.

Autism spectrum disorders affect one in 110 children, but no one really knows the cause or causes. That's just one of many areas of disagreement among advocates for those with autism, but they agree on the need to find causes and cures, and to identify and pay for effective treatments.
If unanimity on some issues is hard to find in the autism community, unanimity on controversial bills is also rare in the New York State Senate. Still, the Senate has passed an autism insurance bill without a single dissenting vote. But many in the autism community say: Not so fast. We agree.
The bill the Senate passed June 9, sponsored by Sen. Neil Breslin (D-Delmar), aims to clarify the scope of coverage that insurance companies will provide. It requires the health commissioner, with three other agencies, to decide which treatments are evidence-based and clinically proven.
There's wide agreement on parts of Breslin's bill. But many autism groups think it unfairly sets up a treatment review process that doesn't exist for other illnesses. And they fear insurers might game the regulatory process to narrow, not expand, the accepted treatments. They favor a simpler bill that specifically lists the treatments. But it's stuck in an Assembly committee.
Before the legislature goes home, it should find what's best in both bills and pass one that will really help parents and children cope with this still-mysterious disorder. Agreement will be difficult; failure is unacceptable.

Preliminary Settlement Reached In Autism Lawsuit

LOS ANGELES -- Families of children with autism in eastern Los Angeles County appear to have prevailed in a fight to maintain state funding for a popular therapy for the disorder.
More than 2,200 families received notice this week of a preliminary settlement in a class-action lawsuit that, if approved by a judge, would force the Eastern Los Angeles County Regional Center to continue to provide the treatment, known as the DIR model (for "developmental, individual difference, relationship-based.")
DIR is the basis for Floortime, a popular method in which a therapist follows a child's lead during play activities to develop communication and social skills.

Robots, iPods Aid People With Autism

From iPods to robots to avatars, people with autism are increasingly taking advantage of cutting-edge technologies to improve their social skills and, in the process, break the isolation of their condition.
"We use them as a bridge to develop communication skills people with autism don't have, like social referencing [for example, making eye contact]," explained Katharina Boser, president of Individual Differences in Learning of Howard County, Maryland, and co-chair of the Innovative Technology for Autism (ITA) committee at one of the nation's leading autism advocacy groups, Autism Speaks. "There are a range of devices that can support people at different levels," she said.

Thursday, June 17, 2010

Paving Way For Adults With Autism

More from Laura Schumaker at SF Gate, San Franciso Chronicle's blog.

Advancing Futures for Adults with Autism, a consortium of leading autism advocacy organizations and service providers, has announced that it will hold a Congressional briefing on July 15 in Washington, D.C.
I would really love to be there.
I attended the National Town Hall Meeting at the Sacramento location last November along with many parents of adults with autism from the bay area.(Here is the Executive summary of that meeting.)
The Congressional briefing will bring together federal legislators, national policymakers and advocates for adults with autism - including individuals who have autism - to discuss priorities for action in the public and private sectors that address the increasing and unmet demand for effective services for adolescents and adults with the disorder.
"Adults with autism are often overlooked by society, which tends to view autism as a childhood issue," said Congressman Mike Doyle (PA),who along Senator Robert Menendez (NJ), the author of the Helping HANDS for Autism Act, are honorary co-chairs of the briefing. Rep. Doyle is also co-founder and co-chair of the Congressional Autism Caucus, also known as the Coalition for Autism Research and Education or C.A.R.E.

A Graduation Speech You Won't Want to Miss

SMITHFIELD, R.I. -- Eric Duquette is the salutatorian of his high school, an honor student, a musician, and he has autism.
The 18-year-old Duquette, who couldn't say a word until age five, gave the commencement speech at his high school graduation ceremony Tuesday night in Smithfield, Rhode Island.
"My parents were told I would most likely end up in an institution," said Duquette. "I stand before you accepted into every institution of higher learning I applied to."
He stood at the podium wearing a green cap and gown and a big grin on his face. His speech, funny and touching, was met with enthusiastic applause from his peers.

Wednesday, June 16, 2010

Raising Ryan: A Father's Journey

Beautiful piece by Dr. Manny Alvarez of Fox News. Dr. Alvarez has served as Chairman of Obstetrics, Gynecology and Reproductive Science at Hackensack University Medical Center in New Jersey for nearly a decade.

He is also an adjunct professor of obstetrics and gynecology at New York University School of Medicine in New York City. Dr. Manny is one of the most popular contributors to the FOX News Channel.

There’s not a day that goes by that I don’t think about my son, Ryan. Yes, I have two other children who I love very much, yet Ryan enters my mind almost every hour throughout the day. You see, Ryan is autistic and because of that, I strive to see the world through his eyes as often as possible. I think he has made me a better father, a better doctor, and certainly, a better person.

Tuesday, June 15, 2010

Autism and Education in France

Powerful piece by Chantal Sickile-Kira on Huffington Post.

Recently I was invited to Paris to present at a prestigious international colloquium on autism and education, which was organized by the INS HEA, the French Ministry of Education's training institute for special education teachers. Seventeen years earlier, I had left France because in those days, children with autism did not have the right to an education, and my son, Jeremy, was severely impacted by autism.
It was an emotional moment for me, standing there, addressing 500 attendees in a lecture hall of the Universite Paris Descatres in Bolulogne - Billancourt, explaining my son's educational experience in the United States, where all children have the right to a free and appropriate education under IDEA.

Students With Autism Learn To Succeed On the Job

People with autism often have a hard time finding and keeping jobs, so more schools are creating programs to help students with autism get prepared for the workplace. One of those programs helped change the life of Kevin Sargeant.
Just a few years ago, when Kevin was still in elementary school, things weren't looking good for him. He was antisocial, desperately unhappy and doing poorly in school.
"He was pretty much a broken child, the way I would describe it," says his mother, Jennifer Sargeant. "We really didn't see that he would be able to go to college, even have a job. That just wasn't in our future for him."
Kevin, now 18, says his autism left him unable to handle the social interactions at school.
Six years later, Kevin is a lot more social. He's a good student. And he's working — as an intern in the IT department at the Parks & People Foundation. Kevin says computers are a good fit for him.

Wyndham Hotel In Austin Designs Autism-Friendly Rooms

A Wyndham hotel has started catering to families traveling with autistic children, making it one of the few in the USA but an early adopter in what may be a growing trend.
The Wyndham Garden Hotel in Austin, Texas, two months ago opened five specially equipped, "Thoughtful rooms" designed to make stays less stressful for families with autistic children. A door alarm, for instance, alerts adults when the door is opening, which could prevent a child from quietly opening the door and wandering out of the room.
The Wyndham is believed to be the second hotel in the USA to offer an autism-aware program, and an official with a leading autism advocacy group says the concept is a good idea

A Marriage Worth the Wait

Just an outstanding story by The Staten Island Advance. In 1998, we had two individuals -- Marty and Anna -- who both lived at Willowbrook for years. They will celebrate their 12th wedding anniversary in September.

STATEN ISLAND, N.Y. — Burt Petrone, 88, and the former Barbara LaRoy, 72, celebrated their 25th anniversary Tuesday. It should have been their 30th anniversary, but it took five years for the state of New York to grant them a marriage license.
This is not your typical love story.
Burt and Barbara, both born with developmental disabilities, were institutionalized as adolescents in the former Willowbrook State School, where they suffered intolerable conditions for a combined total of 43 years.

Monday, June 14, 2010

Willowbrook Activist Looks Back 35 Years Later

A Harlem mother who was at the forefront of a 1970s grassroots movement that dramatically changed the lives of developmentally disabled New Yorkers who were institutionalized is still going strong in both her life and life's mission. New York 1 News' Cheryl Wills filed the following report.

NEW YORK -- Shortly after Willie Mae Goodman's daughter, Margaret, was born in the mid 1950s, doctors insisted that her mentally disabled baby wouldn't live to be a toddler.
They told her that the best thing to do was to put her baby girl in Staten Island's Willowbrook State School and basically forget about her.
"They thought they were just keeping them alive -- no life," Goodman said.
Offended, Goodman rolled up her sleeves and started a grassroots movement to fight for all children who were institutionalized in the notoriously overcrowded and understaffed facility.
Margaret is now 54 years old. Goodman, almost 80, is still on the frontlines of that battle.
"When you fight, you never stop fighting," Goodman said.

St. Louis Woman Shares Brother's Story About Having Down Syndrome

ST. LOUIS, Mo. -- Peter Moisio designs and sells greeting cards, plays basketball, tap dances and volunteers for three different organizations.
He also has Down syndrome. At 48, Moisio lives with his sister, Pat Ciapciak, who recently entered him in a contest to have his picture displayed in Times Square during the National Down Syndrome Society’s Buddy Walk.
When he was chosen as one of the winners, Ciapciak was also given the opportunity to write Moisio’s story for the society’s My Great Story campaign.
"I think it’s fantastic what my brother is enjoying," Ciapciak said.

Where Respite Is Smooth Sailing

HOUSTON -- For just a few hours, Melissa Johnson — a widowed mother of four — set aside her worries and the hectic therapy schedules of her two special-needs children to enjoy feeling the wind whipping in her hair.
Waves splashe d her giggling children’s faces as the family sat on the bow of a 38-foot sailboat during a Galveston Bay outing sponsored by a non-profit group called Heart of Sailing.
"It was hard for me to schedule this, but I’m glad I did," the Cypress mom said of the more than two-hour sail on an especially windy June day.
The charitable organization’s lone Texas branch will take about 1,000 special-needs children sailing this year. All Heart of Sailing excursions are free and open to the entire family.

Father, Son And a Trip to Yankee Stadium

What a great piece by Jeff Capellini, Senior Sports Producer in New York.
Hoping that more people will share their stories as a way to educate the public about children with autism and other special needs. For me, even more poignant when a member of the media shares his or her story.

NEW YORK ― I might have been the only person in the Bronx on Sunday who didn't do backflips when Jorge Posada crushed that grand slam against the Houston Astros.
As the ball sailed deep into a sea of humanity in right center I was instantly beamed to a place I feared I'd visit at some point during my 7-year-old son's first visit to Yankee Stadium.
It was damage control time in the world of the autistic spectrum

D.C. Residents Question Concentration of Group Residences

WASHINGTON, D.C. -- No place in the District has more group homes than Ward 4, and residents are asking why.
Covering a swath of Northwest and Northeast Washington from Petworth up to the northern tip of the city, Ward 4 contains nearly a quarter of the 338 group homes regulated by the city's social service agencies. Of the 113 group homes serving people with developmental disabilities, 47 of them, or more than 40 percent, are in Ward 4.
Community leaders say such homes, typically run by private providers under contract with the city, have become too concentrated, particularly in and around Takoma.
The community has "always had a tradition of tolerance," said Jackie Jones, president of the Takoma D.C. Neighborhood Association. "We believe in a diverse neighborhood in the broadest sense of the term, but there's a limit to what any neighborhood can take."

Friday, June 11, 2010

Camp For Children With Autism

CLIFTON PARK, N.Y. -- Social settings and crowds are hard on people who suffer from autism, all but ruling out a rite of passage for many children -- summer camp.
But this summer, autistic children will have the opportunity to attend a camp designed just for youngsters in first-sixth grades from Clifton Park.
Michael Smith, whose son, Alexander, is autistic, said he lobbied for the camp to give his son a summer camp experience and to expose non-autistic children to autism. The idea is to make both groups more comfortable around one another with the help of specially trained counselors.

Students Survey Attitudes of Children Who Have a Sibling With Special Needs.

What a great project! Congrats to Elyse and Morgan Blueglass of Somers High School and Tyler Lipperman of Yorktown High School. Would like to hear others thoughts.

YORKTOWN, N.Y. -- A nationwide study of the behaviors, attitudes, and views of "typically developing" children was conducted by 3 high school students for their science research program. They are trying to make a difference in the lives of children and families that have a child with "special needs."
The survey was created measuring the typically developing child’s behaviors, attitudes, and views toward their sibling with special needs as well as their parents. They hoped that their survey-based research would be completed by a sufficient number of families so that it would produce enough results to analyze and identify trends in these family dynamics.
Few therapies and efforts are dedicated to helping the "TD" sibling with the challenges they face.

Thursday, June 10, 2010

N.J. Looks To Remove 'R' Word From Law

TRENTON, N.J. -- The state Senate Health and Senior Services Committee has approved legislation that would remove demeaning and disrespectful terms for individuals with developmental disabilities from state law.
Senators sponsoring the bill said that removing such references as "retardation" would help break down exclusionary barriers for New Jerseyans with intellectual or other developmental disabilities.

Wait Is Ending For Nebraskans With Disabilities

LINCOLN, Neb. — Years of waiting for services are coming to an end for more than 800 Nebraskans with developmental disabilities.
State officials said Wednesday that a $15 million increase in state funding for community-based services will allow 833 people to get off the waiting list.
The first group included people who had been on the state’s waiting list since May 2004. The second round picked up people who had been on the list since December 2006.

Research Reveals Autism Genes

Researchers have identified more than 100 genes that may be responsible for autism, and they say the findings could lead to new treatments for the disorder.
A new autism study — the largest of its kind — released Wednesday revealed that people who have autism spectrum disorder either lack or have extra copies of multiple genes vital in the development and function of the brain.
More than 120 researchers, including two at Vanderbilt University, finished the five-year international study and published it in the journal Nature.

Autism Insurance Mandate Gains in N.Y.

ALBANY, N.Y. -- The Senate voted unanimously Wednesday to require insurance companies to cover screening, diagnosis and treatment of autism.
The bill had broad bipartisan support, including Sen. Neil Breslin, a Bethlehem Democrat who worked the draft the legislation as chairman of the insurance committee and Roy McDonald, R-Saratoga, who has long drawn attention to the disorder.
"It's a piece of legislation that I believe is landmark," Breslin said. Twenty other states already require some form of autism coverage by insurers.

Wednesday, June 9, 2010

Life In A Group Home

Nice piece by Frank Lombardi, the Assistant to the CEO of Independent Group Home Living Program and the Director of the IGHL Foundation,from in Long Island, N.Y.

MANORVILLE, N.Y. - What is a Group Home? I wish I had a nickel for every time I have been asked this question over the past decade. Many people do not know what a group home is or what its purpose is within the community. There are many different types of group homes providing care for a wide variety of people such as recovering addicts, disabled veterans, or those with mental illness. One type of group home that may not be as well known on the East End is one where people with developmental disabilities reside. These homes have been in our communities for more than 35 years yet they still carry with them an unfortunate negative stigma. Many people have a pre-conceived notion about what a group home is and what goes on inside, as well as how they are conceived and who oversees them. Maybe we can dispel some of these prejudices with a little bit of knowledge and understanding.

Colorado Mental-Health Counselor Charged With Murdering Infant Son

BOULDER, Colo. -- It took three attempts over nearly 12 hours for Stephanie Rochester to smother the infant son she feared was autistic, according to an arrest affidavit unsealed Monday.
Rochester, 34, a mental-health counselor who worked with autistic kids at Children's Hospital, was charged Monday with first-degree murder and child abuse resulting in the death of her 6-month-old son, Rylan.
As she entered the Boulder District courtroom, wearing a suicide-prevention smock under a blue jail jumpsuit, she turned and looked to the gallery where two women, who said they are family members, sat. One of them put her hand to her heart and pursed her lips as she looked at Rochester.
Her husband, Lloyd Rochester IV, 29, was not in the courtroom.

Police: Woman Posing As Autism Specialist Is Charged

WESTON, Conn. — A woman who police said earned more than $300,000 while posing as an autism specialist has been charged with defrauding the town's board of education.
Stacy Lore, 34, of Carmel, N.Y., was charged with first-degree larceny Tuesday, Det. Carl Filsinger said. She worked as a vendor for the school system from 2005 to 2007, making $300,350 under false pretenses, he said.

Tuesday, June 8, 2010

Name Change At Agency To Remove 'R' Word

ALBANY — For the second time in a year, New York legislators are considering changing the name of one of the only state agencies in the country with “retardation” still in its title.
The term, once viewed as clinical and neutral, is now considered so demeaning that leading advocacy groups in the state have promoted a campaign against it and have dropped the word from their own titles.
And yet, the letterhead of New York’s chief caretaking agency still reads “Office of Mental Retardation and Developmental Disabilities.” Of the dozens of states that once used “retardation” in an agency or department title, only New York and Rhode Island still do.
Given the activism against the term here, it was a surprise last year when a proposal by Gov. David A. Paterson to change the office’s name to the “Developmental Disabilities Services Office” that had passed the State Senate was pulled before reaching the Assembly floor. And the protesters who blocked it were some of the very people who have worked hardest to secure the rights of those labeled “retarded.”

Monday, June 7, 2010

Graduating to Waiting

HIGHLAND PARK, Kan. -- Juliet Banks wants the same things most mothers want for their children.
She wants to see her son reach his potential and achieve at least some of his dreams, including working and moving away from home. But 21-year-old Brandon is somewhere in a 4,000-person deep line waiting for services offered to people with developmental disabilities.
Banks, who attended his final days at Highland Park High School last month, is among a growing number of Kansans who at 21 have aged out of the public school system
to find nothing waiting on the other end. It is a difficult reality for those with disabilities who can find themselves going from the classroom to the couch, and it is a logistical challenge for families that must make difficult decisions about how to care for children that can't be left home alone. They are decisions that can lead some families to leave jobs, sending them into a financial tailspin.

Sunday, June 6, 2010

Opinion: Iritating Assumptions About People With Disabilities

NEW YORK -- Maneuvering through New York City as a person with cerebral palsy can be a constant irritation. Just making my way down subway stairs at rush hour, with people breathing down my neck, is holy terror. But it is not the physical strain of steps and crowds that is my main source of anxiety. It is the naïve, inappropriate and sometimes downright mean comments that people make.

Heartbreaking Demotion For Young Cheerleader With Autism

STATEN ISLAND, N.Y. -- Joanna Petosa loves cheerleading: For the past two years, the Grant City 8-year-old with shining eyes and a wide smile has been an enthusiastic member of the St. Christopher's cheerleading squad.

But after this year's round of tryouts, Joanna's mother received a harsh message from the coach -- if Joanna remained on the team, she would drag the other girls down.

"She (the coach) said they had come to the conclusion that she didn't have the mental capacity to do the stunts," Sally Petosa said. "All she talks about is cheerleading. And now, am I going to break her heart because they're worried about a $3 trophy?"

At issue is Joanna's autism.

Diagnosis Pits Doctors vs. Schools

GILBERT, Ariz. -- A frustrated teacher and a child struggling with autism have combined for a tumultuous year for the Brunos.

The family spent months caught in an escalating dispute with Gilbert Public Schools officials about their son's disorder - autism - and his need for special services to help him succeed in school.

Their battle represents a long-standing divide between the educational and medical worlds, in which experts dispute the diagnoses of child disorders and the therapies kids need to do well in school.

Friday, June 4, 2010

Village Asks Agency To Look Elsewhere For Group Residence

Sorry about no update yesterday. We're gearing up for our Central Park Challenge tomorrow and things are a bit busy.
Seems that NIMBY (Not in My Backyard)is still alive and well in some communities, unfortunately.

WESTBURY, N.Y. -- The village is asking the Nassau County Association for the Help of Retarded Citizens (AHRC) to look elsewhere when it comes to operating another community residence for children and adults with intellectual and other developmental disabilities.
Earlier this year, AHRC, a non-profit organization, entered into a contract to purchase a home on Rugby Road for the intention of operating a community residence. While sympathetic to the needs of the AHRC client population, as well as the services the agency provides, Westbury officials believe the village has "done its share to be welcoming and accommodating to persons with these and similar needs . . .” when compared to some neighboring communities.

Wednesday, June 2, 2010

An Inspirational Golfer

RICHMOND, CA (KGO) -- Everybody has challenges and it is how we deal with those challenges that make all the difference. Coach Marty has a particular way of overcoming the challenges he faces.
Critics describe golf as a waste of time. Four hours of hitting a ball, then chasing it, cursing it, and eventually rolling it into a little hole. That's the game to outsiders, at least.
But to really appreciate golf, a person must struggle with the game, be humbled by it, or maybe just get to know a player like Marty Turcios. Golf challenges him just to balance a ball on a tee before he even hits it, but when he does, it is 120 yards pretty much every time. When he was asked what he suffers from, he said, "I don't suffer at all. I have cerebral palsy, and was born with cerebral palsy."

Parents Get Training to Help Their Children With Autism

CHICAGO (UPI) -- Autistic children whose parents received special training showed significant improvement in verbal and social functioning, U.S. researchers said.
Researchers at Chicago Children's Clinic said the parents in the study received 25 hours of training in Pivotal Response Treatment, an evidence-based behavioral treatment for autism spectrum disorders pioneered more than 30 years ago at the Koegel Autism Center at the University of California, Santa Barbara.
"This study confirms what we have been seeing at our clinic since we began providing Pivotal Response Treatment in 2007," Dr. Robert Daniels, executive director of the Chicago Children's Clinic, said in a statement. "Parents can be trained to be the best clinicians for their children."

As Community of Adults With Autism Grows, Services Dwindle

Nice to see that WPIX-TV in New York City recognizes that autism doesn't just affect children. There are so many adults with autism who are in need of services, especially when transitioning from the board of education services to adult programs. Thanks to Dr. Charles Cartwright, Director of the YAI Autism Center, for putting it out there that we need more services for adults.

A growing population of adults with autism spectrum dissorders are in dire need of special services that some families don't even know exist. With statistics suggesting that autism cases have been on the rise over the past decade, the need for these resources will ultimately surpass what's available to them.
"We are in no way ready to accommodate this growing community," said Dr. Charles Cartwright of the YAI Network, a group of not-for-profit agencies that provides services for individuals with developmental and learning disabilities. According to Dr. Cartwright, these vital services become more scarce especially after a child moves into adulthood and "ages-out" of the system.