Tuesday, January 31, 2012

Connecticut Nonprofits Play Bigger Role Amid Cuts

MERIDEN, Conn. -- If all goes according to plan, the glassed-in attachment to The Arc of Meriden-Wallingford's building will soon be filled with fish, worms and vegetables.
Pamela Fields at the future site of
The Arc of Meriden-Wallingford's
aquaponics program
Executive Director Pamela Fields envisions the future aquaponics set up -- made from donated equipment and built by community volunteers -- as an employment opportunity for the people with intellectual and developmental disabilities who The Arc serves. But having the ability to grow produce and raise fish for eating at The Arc's group homes, day programs and café is also aimed at another major need on Fields' mind: saving money.
The agency has already frozen staff wages at just over $11 an hour, making it hard to keep the most talented, while increased health insurance costs have cut in to workers' pay. Increased gas prices have meant that trips for clients, which once included museums across the state, are now largely limited to Meriden. Programs that were located in leased space near the center of the city have been moved to The Arc's main building, saving on rent but leaving the clients with disabilities more isolated.
The state is moving toward increasing its reliance on private nonprofit providers like The Arc to serve people with developmental and intellectual disabilities, closing state-run group homes and closing new admissions to public residential programs.
But at the same time, nonprofit leaders say, the state is starving them financially.

Monday, January 30, 2012

Human Cost of the Massachusetts Budget Plan

BOSTON - Groups which advocate for people with disabilities across the Bay State say the more than $32 billion state budget plan Gov. Deval Patrick released last week could carry a great human cost if enacted.
The budget would slash spending that supports thousands of persons with disabilities and their families. The spending blueprint calls for $5.5 million in cuts to family-support programs alone.
The governor has been sympathetic in the past, says Leo Sarkissian, executive director of The Arc of Massachusetts, but these proposed cuts are devastating.

Alejandro Rodriguez, Former Director of Child Psychiatry, Dies at 93

Alejandro Rodriguez, associate professor emeritus of psychiatry and pediatrics at the Johns Hopkins University School of Medicine, a skillful and creative physician who conducted pivotal studies on autism and developmental disorders, died Jan. 20 of heart failure complications in Palm City, Fla.
Rodriguez trained in the 1950s, when child psychiatry was still a young discipline. He studied under and later worked alongside some of the field’s giants. Rodriguez’s mentor at Johns Hopkins was the venerable Leo Kanner, the founding father of the discipline, who coined the term autism. Later, Rodriguez and Kanner collaborated on several seminal autism studies. One of them was a 30-year follow-up of the original 11 children diagnosed at Johns Hopkins with autism and described the long-term outcomes of the disorder in children as they age.

Professor Defies Odds to Teach Psychology Course at County College

Some individuals living with disabilities might listen to the dissenting voices that tell them that reaching for their dreams might be futile. Not Yvonne Singer.
The Matawan resident always accepted her severe case of a developmental disability, cerebral palsy, and forged forward to earn three degrees, teach an online course for Middlesex County College in Edison and inspire the students who have come to admire her for embracing a lifelong challenge despite the naysayers.

Pennsylvania Study Sheds Light on Autism

PITTSBURGH -- Information from more than 3,500 autistic adults and caregivers is included in the Pennsylvania Autism Needs Assessment study, the largest of its kind in the nation.
Anne Bale, a spokeswoman for the Pennsylvania Department of Public Welfare (DPW) said there was a great need for information about people living with autism.
While it’s a prevalent condition, still there’s not a lot known about autism and the struggles that families and children and adults with autism face,” said Bale. “So we wanted to gather some basic information about what it’s like to be an autistic individual or a family caring for someone with autism in Pennsylvania.”

Behaviors and the Autism Checklist, For Now

True or False? All people who have behaviors of stimming (i.e. hand flapping), echoing, spinning and perseveration (i.e. lining up objects, subject fascination) are in the autism spectrum. The answer is false. These characteristics are byproducts of autism. In fact, a child or adult displaying one or more of these issues may indicate that the individual has sensory processing challenges or gross motor issues, not autism.

According to the American Psychiatric Association, a diagnosis of autistic disorder is made when an individual displays 6 or more of 12 symptoms in three major areas of social interaction, communication and behavior. The checklist is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSMIV). If a child displays some but not all of the criteria, he may receive a PDD-NOS diagnosis which is a diagnosis within the autism spectrum, too. Delays or abnormal functioning in social interaction, language as used in social communication and symbolic or imaginative play should occur in at least one of these areas prior to age 3. The autism definition in the upcoming Fifth Edition of the DSM is being revised and will be changing. In the meantime, the current 12-symptom checklist is as follows:

Sunday, January 29, 2012

Washington's Dental System Let's Too Many Down

 Interesting column by Anita Rodriguez of Stanwood, Washington, who is a dental hygienist active with the Washington Dental Access Campaign.

According to the Institute of Medicine, the U.S. dental care system fails one-third of all Americans – more than 100 million children and adults. I don’t know what the corresponding failure rate is for Washington state, but as a licensed dental hygienist who’s practiced here for 37 years, I can tell you this: It’s bad.
Despite the best efforts of hard-working dental professionals, too many Washingtonians – including those who are elderly, low-income, have special needs or live in rural areas – are not getting the dental care they need when they need it.

University Providing More than Academics to Students on the Autism Spectrum

ERIE, Pa. -- Nick Pusateri drapes himself across a couch in a bunker-like room in the basement of his apartment building at Mercyhurst University in Erie.
His arms, legs and shoulders bend around one another as if hinged on extra joints. His neatly cropped, reddish-brown hair lies forward, toward his square-rimmed glasses. Pusateri, 22, stares into the Greek mythology book, his face impassive, and his voracious mind begins to feast.
When he was 2, doctors diagnosed Pusateri of Sewickley with autism, a spectrum of disorders characterized by social impairment and communication problems. He's not intellectually impaired; his professors say he's among their brightest students. He just lacks an intuitive understanding of the unconscious gestures, invisible boundaries and tiny signals that weave into our social fabric.
But he's learning.

Iowa Joins Effort to Erase 'R' Word

DES MOINES, Iowa -- Lynn Holtzman wants people to know something about her. "I'm not stupid," she said.
Her friend Jessica Evans nodded her head in agreement. "I'm not stupid, either," she said.
Both Des Moines women have been diagnosed with mental retardation, but that label doesn't define everything about them. And they're smart enough to know that other people shouldn't throw around the word "retarded" as an insult to mean that something or someone is dumb.
"It's very disappointing. It hurts my feelings," Holtzman said. "I don't like to be called a name. Nobody does."
The women were glad to hear that Iowa lawmakers are participating in a national effort to reduce use of the word "retarded" or "retardation." A draft bill unveiled this week at the Statehouse would replace the words with "intellectual disability" almost everywhere in state law. The bill is 70 pages long, because the wording shows up so often in laws and regulations.

Donation Stuns Grand Rapids School

GRAND RAPIDS, Mich. -- Lincoln School is reeling over a jaw-dropping donation given by a Caledonia couple who their entire adult lives mourned a special-needs daughter who died in 1956 at the age of 12, and never got the chance to go to school herself.
"I opened up this envelope, and a check for $250,000 fell out on my desk," said Steve Kadau, principal at Lincoln, where some 80 staff members work with nearly 180 moderately to severely cognitively impaired students.
Since then, another check has surfaced from the same deceased couple, for $200,000. And it's only a matter of time before a third check is issued, for about $30,000, bringing the total to upwards of $480,000.

More Attention and Funding for Preschools

CINCINNATI -- Preschool is moving to the head of the class when it comes to education funding.
Ohio in December won $70 million from the federal government’s $500 million Early Learning Race to the Top grants along with eight other states. It has joined a national movement to make preschool a top funding priority. The state plans to increase preschool offerings over the next several years to thousands of low-income youngsters while boosting quality standards for preschools.
Kentucky also will increase early childhood efforts despite failing to land the Race to the Top grant. One initiative will create a statewide kindergarten readiness test for as early as 2012 or 2013 to help schools identify children who need help, and there are plans to expand state funding for preschool for more families, said Lisa Gross, state education spokeswoman.
Both states are part of a national movement to make quality preschool available to “high-need” students who live in poverty, have developmental disabilities or are learning English. Without preschool education, child advocates say, youngsters from low-income families start kindergarten as much as 18 months behind their peers in academic and social development.

Saturday, January 28, 2012

Autism Roundtable: Cross-Disability Solidarity

Note: This is the second part of a feature by Huffington Post's Seth Mnookin that began two days ago on the Public Library of Science. The introduction to both parts is identical.

I asked some of the people who've influenced my thinking about all of these issues to collaborate on a virtual roundtable. 

Ari Ne'eman, autism rights advocate and the co-founder of the Autistic Self Advocacy Network (ASAN). In 2009, President Obama appointed him to the National Council on Disability: Please do excuse my delay, Seth - I've just finished attending the National Disability Leadership Alliance's Annual Planning Retreat. NDLA is a very unique version of something that is very common in Washington, DC,  it is an advocacy coalition of national organizations which lobby to influence public policy, with a twist: it is controlled by a Steering Committee limited to national groups run by and for people with disabilities. ASAN serves alongside groups like the National Federation of the Blind, Little People of America, the National Association of the Deaf, the American Association of People with Disabilities and many others. Participating in NDLA is frequently a great opportunity to learn something new from those with backgrounds different from oneself - but more often than not, it gives one a chance to learn about how similar the experiences of people with different disabilities are.

Autism Roundtable: Angry Parents, Disability Rights, and Life in Neurotypical World

First of two posts from Seth Mnookin of Huffington Post. 

It’s been almost four years since I began work researching and reporting on autism. The bulk of that work was focused on my book The Panic Virus, which examines the spurious fears over a connection between vaccines and autism. (There’s more information about the book, including a summary and links to reviews, on my website.) The Panic Virus was released in hardcover last January, and over the past twelve months, I’ve learned enough — about human nature, about fears and prejudices, about rationality and superstition and medical ethics and public health — to write several more books. (I’ve also learned first-hand about the anxiety and uncertainty that comes with being a parent: In December, my wife gave birth to our second child.) I incorporated a very small amount of this new information into an afterword that is included in the paperback edition, which was released a few weeks ago.
One thing I did not get to address is how dramatically my own conception of autism has evolved. Human beings have a fundamental need to classify and label; it’s one of the most basic ways we make sense of the world around us. Because “autism” is a medical diagnosis, it might seem, at first blush, to be an immutable definition — but as anyone who has looked at the issue knows, this is most definitely not the case. Just last week, The New York Times made a huge splash with a front-page story detailing how changes in the “official” definition of autism in an upcoming edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) could dramatically reduce the number of people being diagnosed with autism or “autism spectrum disorders” like Aspergers syndrome.

Vote Doesn't End Medicaid Wait List Issue

CASPER, Wyo. -- State lawmakers on Thursday rejected a $12million funding request to cut wait times for a Medicaid waiverprogram that serves people with developmental disabilities.
But those who’ve been waiting years for services still have some reason for optimism. The Legislature will consider a separate bill next month that would provide even more money for the program.
The legislation would shrink waiting times to six months for adults and children with disabilities and one month for people with brain injuries. Waits now average one to two years, depending on the program, according to figures from the Wyoming Department of Health.
Closing the gap would cost the state $28 million, with half the funding coming from the federal government.

Friday, January 27, 2012

Disability Rights: Sheltered Workshops Are Today’s Institutions

The Oregon chapter of the Cerebral Palsy Association and eight individuals with intellectual and developmental disabilities have filed a class-action lawsuit charging that thousands of Oregonians with disabilities are stuck in dead-end “work-activity programs” where they typically make less than the minimum wage. Placement in such programs, in sheltered workshops, is in violation of protections against discrimination under the federal Americans with Disabilities Act and the Rehabilitation Act.

Delegate: Strip 'Mental Retardation' From State Code

RICHMOND, Va. (WTVR) - At the General Assembly one delegate is pushing for a change in quality of life, by trying to strike the words “mental retardation” from the state code. Republican Delegate T. Scott Garrett is looking to mirror a federal law to eliminate the term he considers insulting, with a less offensive term.
“Everywhere there is the word 'mental retardation,' it changes that to 'intellectual disability,'" said Garrett.
In 2010, President Barack Obama signed legislation requiring the government make the changes on the federal level. And here in Virginia, Garrett is sponsoring a bill to do the same here. Under the law, "mental retardation" would be stripped from the state codes.
The proposed bill comes on the heels of a recent rally, nearly two weeks ago when hundreds gathered at the Virginia Capitol in an effort to boost funding and improve mental health services for Virginians.

California Assembly Bills Expand Health Coverage

The state Assembly on Thursday passed a set of bills intended to broaden the mental health and health care services covered by private insurance plans.
Lawmakers approved AB154, which would require insurers to cover the diagnosis and treatment of mental illnesses, and AB171 for coverage of developmental disorders such as autism. They also approved legislation to cover oral chemotherapy treatments and mammograms regardless of age.
Supporters say many people with mental illness and substance abuse problems are unable to obtain treatment and end up in public health care programs, emergency rooms and state and county jails.

Mid-Michigan Industries Partners with Students to Benefit Developmentally Disabled Residents

Thirty-two year old Heather Naessens bounced her knees as she adjusted herself into the warrior pose.
“Shake it, but don’t break it!” the Mount Pleasant resident joked to her fellow developmentally disabled participants as a chuckle broke out in the room.
This was Naessens’ second time participating in Mid-Michigan Industries’ weekly yoga class this semester, led by Central Michigan University student volunteers.
“I am volunteering here as part of the 180 hours required for therapeutic recreation majors,” said Bay City junior Maeling Groya. The yoga facilitator said it’s rewarding to give people with developmental disabilities the opportunity to engage in yoga.

Thursday, January 26, 2012

Virginia Reaches Settlement with Dept. of Justice on Care for Individuals with Disabilities

RICHMOND, Va. -- Virginia will close four state institutions for the developmentally disabled and move thousands of people to their own homes, their family’s houses or group homes as part of a massive settlement announced Thursday with the U.S. Justice Department.
The agreement follows a scathing federal report of the training centers, which found the state harmed residents by keeping them in large institutions instead of providing smaller, community-based homes.

Oregon Sued for Denying Access to Mainstream

  PORTLAND, Ore. -- A federal class action claims Oregon is unnecessarily, and illegally, segregating "thousands" of people with developmental disabilities in "sheltered workshops," and denying them "virtually all contact with non-disabled persons," in the state's employment service system.
Lead plaintiff Paula Lane claims: "Thousands of other similarly situated individuals in the State of Oregon also are unnecessarily segregated because of DHS's [the Department of Human Services] over-reliance on sheltered workshops, and its failure to timely develop and adequately fund integrated employment services, including supported employment programs.

Education, Employment and Adults with Autism

1.5 million people in the United States have autism. Los Angeles County is expecting a dramatic increase in the number of adults with autism in the next five years. One local group is looking for ways to help these adults find housing, jobs, even careers.
Tom Iland just moved in with his girlfriend and passed the test to become a certified public accountant.
"Seeing things through, that's what makes things happen," said Tom.

Pounding Pavement Calms Autistic Runner

MOUNT DORA, Fla. — When Kyle Krekeler showed up at the Mount Dora Christian Home and Bible School track in July to join a local running group, trainer Vickie Steuben encountered a problem.
The 22-year-old Krekeler, who is autistic, would smell her hand and try to put some of her fingers in his mouth.
"I would get really freaked out," said Steuben, who has been coaching Krekeler since he joined. "But he doesn't do that anymore."
Running keeps Krekeler on an even keel, said his grandmother and legal guardian, Anne Osborne. He smiles when he starts to run. He is healthy and fit. And though he has a long way to go, experts say there is evidence that moderate to vigorous exercise can help people with autism. The benefits have been explored in studies examining the results of swimming, treadmill walking and even horse riding, among other aerobic activities.

Wednesday, January 25, 2012

Teen with Autism Swims His Way to Success

FOND DU LAC, Wis. -- When Hunter Develice wanted to join the Fond du Lac High School swim team, his father was told that perhaps the family should consider Special Olympics instead.
"A school official told me maybe it wasn't the right spot for Hunter, but he proved them wrong," Chris Develice said of his autistic son.
A powerhouse swimmer, the 17-year old Fondy High junior recently swam the 400-meter freestyle race in "letter" time in a dual meet at Berlin. He not only swam fast enough to earn a varsity letter, he won the race.

Autism Gains Visibility on TV, in Movies

Premiering Wednesday night on Fox TV is “Touch,’’ a drama centered on a mute, emotionally withdrawn 10-year-old named Jake who possesses genius-level math skills. Just released, meanwhile, is the film “Extremely Loud and Incredibly Close,’’ whose 10-year protagonist, Oskar Schell, exhibits mildly autistic traits. It earned an Oscar nomination for best picture yesterday.
Even as the American Psychiatric Association announced last week that it may restrict its definition of autism, a wave of movies, television dramas, and best-selling books is drawing pop culture attention to the mannerisms and behavior associated with the disorder. Whether the effect will prove beneficial - or trivializing and exploitative - is a matter of some discussion.

Tuesday, January 24, 2012

Taking Care of Adults with Disabilities

FLAGSTAFF, Ariz. -- Pearlie Hatcher calls her son, Jeffrey, “Mama’s baby.”
Jeffrey replies that he is a man. Physically, he is 45, and the gray hair creeping around his temples and the lines around his merry eyes show it.
Developmentally, he is a child. He always has been. He always will be. The Hatcher family learned when their youngest was an infant that he had Down syndrome.
The way Pearlie explained it to his siblings, he would “always be like a baby.”

New Research Gets Look at Brain's Wiring

Researchers for the first time are documenting the basic wiring of the brain, the complex relationships among billions of neurons that are responsible for reason, memory and emotion. The work eventually could lead to better understanding of schizophrenia, autism, multiple sclerosis and other disorders.
A look at the hidden anatomy of brain wiring.
New techniques, including advances in brain scans, are helping to reveal the hidden anatomy of brain wiring and giving scientists a new understanding of how thoughts, memories and emotions are formed. WSJ's Robert Lee Hotz reports.
"It may be the first new perspective on neuroanatomy in 100 years," said Bruce Rosen, director of the Martinos Center for Biomedical Imaging at Massachusetts General Hospital. "There may be some real surprises."

Perspective: Redefining Autism Comes at a Cost

Another opinion. This one by Ilyse Levine-Kanji, a school committee member in Westborough, Mass. and a former employment discrimination lawyer. Her son, Sam, has autism.

Ilyse Levine-Kanji and her son, Sam
As a school committee member, I recognize how costly services for autism are, and I understand the current urge to more narrowly define autism. As a parent of a child with autism, I also know that the costly supports my son Sam has received – from his school, through our insurance company, and from our own pocket – have helped him immeasurably .
If you saw Sam, now 13, on the street, you would know immediately that he is unlike most children. Sam makes little eye contact; can “flap” his arms or make other disconcerting movements; speaks in an unnaturally loud, high-pitched sing-song voice; and has frequent loud bursts of laughter about things evident only to him. Throughout his school day, Sam requires the constant presence of a trained adult to painstakingly teach him information, from academics to reading social cues to following societal norms of behavior. Sam’s need for constant supervision continues once he gets home from school.

Footage of Bullying Posted on Facebook

Whether you're a fan of Facebook or not, clearly this is a sad commentary on society. How could anyone think about capturing video when someone is getting bullied?? And posting it on Facebook? Well, I'll let you decide.

The horrified parents of an autistic sixth grader watched video of their son being pummeled by a peer after another student posted the disturbing footage on Facebook.
The 11-year-old boy, Kaleb Kula, says he’s been bullied for years at Elkton Middle School in Maryland, local station WMAR-TV reported.
The video, recorded on a student’s cell phone, shows Kula and other students standing near a school bus stop.

Opinion: Why it Makes Sense to Redefine Autism

Jennifer A. Pinto-Martin is the Viola MacInnes/Independence professor and chair of Biobehavioral Health Sciences at the University of Pennsylvania's School of Nursing. She is also the director of the university's Center for Autism and Developmental Disabilities Research and Epidemiology. 
"Will my child still qualify for a diagnosis of autism?" This is the question on the minds of many parents with children who have autism. The short answer is: Most likely, yes.
As an expert panel considers changing the definition of autism in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, parents are expressing concerns about what this will mean. The manual is the standard reference for the diagnosis of mental disorders and has an important influence on insurance coverage, access to educational support and therapeutic services, as well as research in the medical community.
But rather than debating whether the change is warranted or wise, we should focus on the effects.

Monday, January 23, 2012

N.J. Earmarks Funds for Autism Clinical Studies

The prevalence of autism in New Jersey has spurred extensive study, with biomedical researchers looking at everything from behavioral therapy to genetics to discover autism's causes.
Now the state intends to expand these efforts in research and treatment by supporting the scientists financially -- with $8 million in grants over five years -- and coordinating individual efforts by sharing results in a central office.

Anxiety, Other Disorders, Common in Autism

NEW YORK -- Autism tends to go hand in hand with a variety of other mental and behavioral conditions in kids, suggests a new study that highlights the fuzzy nature of autism diagnoses themselves.
Researchers said that other disorders that often go along with autism -- such as attention-deficit/hyperactivity disorder (ADHD) or learning disabilities -- may complicate the diagnosis, or slow down any improvement in kids who do get diagnosed and treated early.

Where to Draw Line Between Social Media Responsibility and Anti-Vaccine Activists

 A new article in the medical journal Vaccine sheds light on the online practices of one such group—the global anti-vaccination movement, which is a loose coalition of rogue scientists, journalists, parents, and celebrities, who think that vaccines cause disorders like autism — a claim that has been thoroughly discredited by modern science.
While the anti-vaccination movement itself is not new—religious concerns about vaccination date back to the early 18th century—the ease of self-publishing and search afforded by the Internet along with a growing skeptical stance towards scientific expertise—has given the anti-vaccination movement a significant boost.

Sunday, January 22, 2012

When Teens with Autism Want to Drive

COLUMBUS, Ohio -- For parents of teens with an autism disorder, life is interesting enough. It gets more so when their sons and daughters, sometimes brilliant but also quirky, are old enough to drive.
'Do we do it, do we not do it? Will it work, will it not work? You ask yourself all the time,' said Beth Luzader, whose son turns 16 next month.
Before she can explain further, Garrick Hatcher interrupts his mom to declare, “I’m not a bad driver!”

Siblings Take On Lifetime Commitment

Katie Ketter loves to joke around at least a couple times a week with her big sister, Ashley Baldwin.
“Recently we started swimming together at the Y,” Baldwin, 27, of Appleton, said of Ketter, 24. “Katie will stop over on the weekends and I help her print out her pictures; she just got a new camera.”
At the end of November, Ketter, who is cognitively disabled, also began a new stage of life — she’s moving out of her parent’s Appleton home and into a privately run adult family home in Darboy.

Saturday, January 21, 2012

Autism Debate Worries Some Families

A debate among medical professionals over how to define autism has spilled over into the public domain, stirring anger and fear among many parents and advocates of those with the neurological disorder, even as some argue that the diagnosis has been too loosely applied.
A study reported on Thursday found that proposed revisions to the American Psychiatric Association’s definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. These are people who have difficulties with social interaction but do not share the most severe impairments of children with classic autism.

Budget Ups Funds for Md. Disabilities Agency

Hope this passes, because what happened before should never happen again. Just horrific.

ANNAPOLIS, Md. -- After a rocky six months for the Developmental Disabilities Administration, Gov. Martin O’Malley’s fiscal year 2013 budget proposal increases funding by about $31 million and creates a new fund so unspent money will stay in the agency.
Health Secretary Joshua Sharfstein and Developmental Disabilities Administration Director Thomas Frank Kirkland sent a letter detailing the agency’s budget initiatives to all members of the General Assembly on Wednesday morning, soon after O’Malley shared his budget proposal.

Illinois Governor to Close 2 State Institutions

SPRINGFIELD, Ill. -- Gov. Pat Quinn announced Thursday that he plans to close a Tinley Park mental hospital and a Jacksonville center for people with developmental disabilities as he ramps up efforts to move people out of state institutions and into group homes or other kinds of community care.
As the push continues, Quinn hopes to move 600 people out of institutions over the next 2½ years. That would eliminate the need for up to four hospitals and developmental centers, aides said.
Quinn's office emphasized that the goal is to improve quality of life for people who depend on the state for care. But doing away with costly institutions should also save money. They predicted closing facilities in Jacksonville and Tinley Park, which together employ about 550 people, would save nearly $20 million.

Friday, January 20, 2012

Artists with Disabilities Raise Awareness

The work of eight special artists was unveiled Wednesday at the state Office of People With Developmental Disabilities, or OPWDD. The mural was five weeks in the making, a way for people like Lisa Kasper to raise awareness for people with special needs.

"I want other people to see that because I am visually impaired that I can still do art, and I can share my art with other people," says Kasper.The OPWDD program works with residents at the Institute for Community Living, an organization that provides housing and services for developmentally disabled people.

Federal Judge Blocks In-Home Service Cut

SACRAMENTO, Calif. -- A federal judge on Thursday continued to block the state from reducing in-home care to low-income disabled and elderly residents, a budget cut pursued last year by California Gov. Jerry Brown and lawmakers.
The reduction would have slashed one-fifth of service hours for In-Home Supportive Services recipients to save the state $100 million over the next six months.

From Blog Posts to Bills, Student Advocates for Individuals with Autism

WASHINGTON, D.C. -- For better or for worse, Lydia Brown's identity has been shaped in large part by her autism.
"Autism affects every aspect of my life," she said. "I would completely not be me if I were not autistic."
Drawing on her experiences, Brown (COL '15) wrote and submitted two bills,  one before the House of Representatives and one in the Senate in Massachusetts, proposing a mandatory training program about autism for law enforcement and correction officers in the state. The training would focus on how to recognize and communicate with autistic people in high-tension situations.

Study: Low Birth Weight Predictor of Autism

EVANSTON, Ill. -- Low birth weight is an important environmental factor contributing to the risk of autism spectrum disorder, U.S. researchers say.
"Our study of discordant twins -- twin pairs in which only one twin was affected by autism spectrum disorder -- found birth weight to be a very strong predictor of autism spectrum disorder," lead author Molly Losh of Northwestern University said in a statement.

Thursday, January 19, 2012

Bill Preventing Hospital Discrimation Against Disabled to Be Proposed

TRENTON, N.J. -- Senate President Steve Sweeney (D-Gloucester) Thursday announced that he will soon introduce legislation that would ban hospitals in New Jersey from declining to perform an organ transplant on someone simply because they have a developmental disability.
The legislation comes in the wake of an incident at Children’s Hospital of Philadelphia (CHOP) where a Camden County family was allegedly told that their 3-year-old daughter would not be eligible for a kidney transplant because she is “mentally retarded.”

French Film Takes Issue with the Psychoanalytical Approach to Autism

PARIS — “Le Mur,” or “The Wall,” a small documentary film about autism released online last year, might normally not have attracted much attention.
But an effort by French psychoanalysts to keep it from public eyes has helped to make it into a minor cause and shone a spotlight on the way children in France are treated for mental health problems.

FDNY Instructs on Rescuing Autistic Children

When a building is burning and firefighters are focused on saving lives and the difference between life and death is a matter of seconds, they can be stopped in their tracks by an autistic child.

"A lot of the time, people with autism don't understand what's going on so they don't know what's expected of them," said Capt. Bill Cannata, an autism first responder educator. "They're going to do opposite of what a first responder would think."

It's that kind of situation that inspired a new autism seminar at the FDNY training academy Wednesday that dealt with what to do when handling an autistic child at an emergency.

Wednesday, January 18, 2012

New Definition of Autism May Exclude Many

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and may make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.
The definition is under review by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The D.S.M, as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions.

Supreme Court Holds Fate of Medicaid

WASHINGTON, D.C. -- Two cases before the Supreme Court have the potential to effectively do what Republican lawmakers have tried and failed: transform Medicaid into a block grant program for states with few enforceable federal rules about how they provide health coverage for the poor.
That outcome may not be the most likely scenario. But legal experts say no one can predict what the high court will do — particularly because many were surprised that the Supreme Court agreed to consider the Medicaid portion of the big multistate challenge to President Barack Obama’s health reform law in the first place.

Parents Say Doctor Denied Daughter Transplant Due to Developmental Disability

PHILADELPHIA — The parents of a 3-year-old girl say she's being denied a kidney transplant because of her mental disabilities, but experts caution the situation may be much more complex.
Chrissy Rivera, who lives in New Jersey, last week posted a blog entry that described an encounter she claimed happened at The Children's Hospital of Philadelphia. She said she was there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.
Rivera wrote that a doctor, whom she did not name, told her and her husband, Joe Rivera, that Amelia wouldn't be eligible for a transplant because of her quality of life and her mental condition.
"I put my hand up. 'Stop talking for a minute. Did you just say that Amelia shouldn't have the transplant done because she is mentally retarded. I am confused. Did you really just say that?'" she wrote. "I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded."

When Workers with Autism Are Perfect Fit

NAPERVILLE, Ill. -- Finding steady work in this economy isn’t easy. The challenge is magnified for individuals with disabilities such as autism, who often have difficulty with social interaction.
Experts and parents are trying to change that by helping employers understand what this population has to offer.
“There’s an untapped pool of potential workers available in the special needs community that can really do a great job for many employers,” said Naperville resident Karen Thomas, whose 19-year-old son, Eric, is autistic.

California Clinic Fills Gap in Dental Care

For most adults, a cavity calls for a quick prick of Novocain and a 20-minute filling. But for 40-year-old Tina Lumbley of Moreno Valley, Calif., the routine procedure was a day-long ordeal.
Lumbley has autism, a developmental disorder that makes the sounds, smells, tastes and bright lights of the dentist's office overwhelming.

Editorial: Placing People Ahead of Finances

SPRINGFIELD, Ill. -- We are firmly on record advocating that Illinois move away from its reliance on large institutions to house the developmentally disabled.
Housing people with developmental disabilities in large facilities is an antiquated, expensive and, most importantly, ineffective way of allowing the disabled to live the fullest and most productive lives possible. By and large, advocates for the developmentally disabled favor providing residential care in residential settings — group homes with six or fewer residents supervised by a properly trained staff.

Maryland Disability Administration Fixing Outdated Accounting Method

ANNAPOLIS, Md. -- A flawed, outdated and ineffective method of accounting is the reason why the Developmental Disabilities Administration discovered a startling $33 million in unspent funds, and Health and Mental Hygiene Secretary Joshua Sharfstein said that the agency is committed to fixing those problems.
Testifying Tuesday afternoon before the House Appropriations Committee, Sharfstein, whose department oversees the Developmental Disabilities Administration, along with several department officials, assured legislators that they are working hard internally to correct the problems.

Tuesday, January 17, 2012

DOJ Report: Thousands Unjustly Institutionalized and Isolated in Mississippi

ELLISVILLE, Miss. — A federal investigation of the state’s mental health system may lead to changes in operations at Ellisville State School and other state-operated regional facilities providing comprehensive services to individuals with intellectual and developmental disabilities.
In mid-December, the U. S. Department of Justice (DOJ) sent its investigation findings to former Gov. Haley Barbour which pointed out problems in the state’s mental health system and what steps need to be made to correct them. According to DOJ findings, the mental health system violates the Americans with Disabilities Act by unnecessarily institutionalizing thousands of Mississippians with disabilities or mental illness.
“The Justice Department basically wants us to offer more community based services,” said ESS Director Renee Brett. “They want individuals at Ellisville State School and other mental health facilities across the state to be able to associate more with non-disabled people.”

Inspirational Model with Down Syndrome

NEW YORK, N.Y. -- Ryan Langston has everything a casting director would want in a child model: charisma, a hip haircut and a knockout smile. This 6-year-old also has Down syndrome -- and it is that fact that has daytime talk shows, international newspapers and news networks all wanting to tell Ryan's story.
His appearance in a Nordstrom catalog this summer, and a Target ad this month created the kind of buzz marketing directors dream of -- because of what the ads do not do. They don't emphasize or point out that Ryan has special needs. He's just a good looking kid in an ad, appearing alongside other good looking kids about the same age.

Va. Begins Moving People From Centers

CHESAPEAKE, Va. -- Within the next few months, Sandra Arnold will move to a new home.
The 57-year-old woman has lived in state institutions for the mentally disabled since she was 5, and at Southeastern Virginia Training Center in Chesapeake since it opened nearly four decades ago.
She's now part of a wave of intellectually disabled residents who are moving out of the state's five training centers in an unprecedented downsizing effort, which could eventually lead to closing some entirely.

Opinion: Reconsider Managed Care Reform

WICHITA, Kan. -- The Brownback administration’s sweeping overhaul of Medicaid into a privately run managed-care system called KanCare mustn’t sweep individuals with developmental disabilities over the edge. As it is, there is a good argument for exempting the vulnerable population from such a sea change.
A packed weekend meeting in Wichita demonstrated how unsettling the governor’s plan is proving for the developmental disability community, as Department of Aging Secretary Shawn Sullivan was questioned about why the reform was needed and how it would affect loved ones.
Sullivan argues that care coordination is justified because many who are developmentally disabled suffer from medical conditions such as diabetes and high cholesterol, and have problems with mental illness and substance abuse. He makes a good point.

Read more here: http://www.kansas.com/2012/01/17/2177892/medicaid-plan-unsettling-for-developmentally.html#storylink=cpy

How Do You Explain Autism to Your Son?

From Patch's Yuji Fukunaga, a Highland Park, Ill., resident and the father of a dynamic seven-year-old boy who has autism.

The book displayed caught my attention. My son and I were in the children’s section of the public library, just prior to the start of Hanukkah.
Nathan Blows Out the Hanukkah Candles
was an amusing title – one that I could relate to. At past Hanukkahs, Kai has wanted to blow out the candles on our menorah.
I grabbed the book and quickly paged through it. It looked like a fun story. At a minimum, it was timely, and I thought that perhaps it would help my son learn a little more about the holiday we would soon be celebrating.
So, I checked the book out and brought it home.
It was only after I began reading it with Kai at bedtime one night that I realized that the title character was a boy with autism. I had unwittingly chosen a book that might spur our first discussion about autism with our son.

Metronome Device Aids Brain Processing

WILMINGTON, Del. -- Nicole Dye-Anderson credits rollerskating lessons with alleviating her daughter's ADHD symptoms.
It was Jenna's skating coach who noticed the 11-year-old seemed to prefer her left side over her right. She suggested physical therapy to improve Jenna's balance.
That's how Jenna wound up at Nemours/Alfred I. duPont Hospital for Children using the Interactive Metronome, a computer-based rhythm program that uses simultaneous sound and images to help with the brain's processing, specifically when it comes to attention, motor planning and sequencing.

Monday, January 16, 2012

Study Finds Babies Learn to Talk By Reading Lips; Could Offer Clues to Autism

For years, the conventional wisdom was that babies learned how to talk by listening to their parents. But a new study in the Proceedings of the National Academy of Sciences shows that our little angels are using more than their ears to acquire language. They’re using their eyes, too, and are actually pretty good lip readers.
The finding could lead to earlier diagnosis and intervention for autism spectrum disorders, estimated, on average, to affect 1 in 110 children in the United States alone.
In the study, researchers from Florida Atlantic University tested groups of infants, ranging from four to 12 months of age and a group of adults for comparison.

The Joys of Independence

HANOVER, N.J. — Packed to the refrigerator are pictures of his family smiling brightly. On a wall leading from the living room to the bedroom is a plaque from Employment Horizon proclaiming Stephen Somich the "most improved worker."
These trappings of home sit side by side with the generic playthings that are near necessities for men of a certain age — a comfortable chair in front of a television hooked up to a PlayStation.
Somich, 30, has been living in this roomy, one-bedroom apartment in Hanover since June. His very own apartment.

Syracuse University Honors Deceased Doctorial Student as King Unsung Hero

SYRACUSE, N.Y. -- Cheryl Spear passed away before she learned she’d won a Syracuse University Martin Luther King Jr. Unsung Hero award, but her friends, family and colleagues said she’d have been overjoyed at the honor.
“She advocated for people with visual impairment and for people with disabilities in general,” said Kinnari Desai, an SU grad student from India who is visually impaired. Spear, who died in December, took Desai under her wing when she arrived in Syracuse in 2010.
“She helped create a path for others, and showed many of us how to cope,” said Desai, one of a group of students, friends and colleagues who nominated Spear for the award.

Sunday, January 15, 2012

Life with Williams Syndrome

COLLEGEVILLE, Pa. -- Most parents have to teach their kids how to properly greet people — to stand up before saying hello to someone who’s entered the room, to shake hands with the new neighbor, to hug relatives who’ve come to visit.
Children with Williams syndrome will perform these friendly acts naturally, and willingly, while making each person they’re greeting feel like the man of the hour.

Saturday, January 14, 2012

Losing a Job and Self-Esteem

MARENGO, Ill. -- Always clean and perfectly pressed, Eddie Mrkvicka’s McDonald’s uniform gave him the same sense of pride that a sailor might feel in his dress blues.
The 38-year-old from Marengo more recently was employed at a rehab facility in Woodstock, but like many in the rocky economy of recent years, he lost his job to cutbacks.
Mrkvicka, however, is not like the majority of unemployed U.S. workers. He has a controlled seizure disorder, suffers from adult attention deficit and hyperactivity disorder, and has learning disabilities and Asperger syndrome, a high-functioning form of autism that affects a person’s social interaction skills.

Tim's Place: A Dream Followed

ALBUQUERQUE -- Running a restaurant isn't easy, but Tim Harris has made it work.
Along the way he became perhaps the only person with Down syndrome in the U.S. who owns and operates his own place.
“This trophy right here, I got student of the year,” Harris, 25, said as he gave KRQE News 13 a tour of Tim's Place.
Harris has accomplished a lot.
“I won homecoming king from the highest margin of votes in school history,” said Harris, a 2004 graduate of Eldorado High School. He went on to get a degree from Eastern New Mexico University-Roswell.

Changes to Medicaid Sowing Uncertainty

WICHITA, Kansas -- Wichitan Jennifer Norgren has sparkling brown eyes and smiles a lot. She’s ornery and, well, boy crazy.
She’s like many other young women.
Jennifer is also developmentally disabled and lives at home with her parents. She was born with Down syndrome 22 years ago. She’s blind, uses a wheelchair and has hydrocephalus, or water on the brain.
Her developmental level ranges from 24 to 36 months, depending on the area being measured. She’s also a cancer survivor.
“For as much as she’s gone through, she has a really positive attitude,” said her mother, Terri Norgren. “She is one of the happiest persons I’ve ever met. Always has a smile on her face. She does like boys. She had a date to the prom two years ago and had a blast.”
She also needs around-the-clock care. Terri, 55, and her husband, Ron, 57, are worn out.
They wonder what will happen to their daughter as they grow older and when they are no longer around
. That’s one reason they want to put their daughter in a group home.

Read more here: http://www.kansas.com/2012/01/14/2175195/changes-to-medicaid-sowing-uncertainty.html#storylink=cpy

Bandleader Doc Scantlin and His Wife's Lifelong Struggle with Autism

She wears a red tulle dress with a tight bustier with sequins that frame her impressive decolletage, a plume of tulle flowing down the back of her legs. A red-feathered headdress shivers upon her blond updo, above a pale face with striking red lipstick. She’s Chou Chou Scantlin, a songstress built like a Barbie doll, crooning “As Time Goes By.” Behind her, Doc Scantlin, her husband, leads his Imperial Palms Orchestra , a 15-piece, 1930s-themed band that has been a fixture in the Washington area for more than 20 years.
Tonight their audience is members of the Scottish Rite Freemasons, a mostly over-50 group slowly filling the massive Washington Hilton ballroom. As the tempo picks up, couples self-consciously take to the edges of the dance floor, while Doc — dapper with a pencil mustache and white tails and spats — tells corny jokes and sings standards such as “Night and Day” and “Minnie the Moocher.” Chou Chou (pronounced “shoo-shoo”), 58, flirts with the men in the audience, rubbing one man’s bald head and exclaiming, to his tablemates’ delight, “More skin to kiss!” When Doc starts playing “Paper Moon,” she pulls two men in suits onstage and says, “This is Lou and Bill! They’re going to blow bubbles for me!”
In truth, there’s little separation between the two personas onstage or off. Stop in at their bayside Calvert County home unannounced, and you’ll find Doc, who’s 65, in a bow tie, pressed pants and shirt. It’s how he has dressed his whole adult life.
With a perfect figure, Chou Chou looks years younger than her age, a youthfulness exaggerated by a breathy, sweet-as-pie voice that always sounds as if it’s on the verge of a giggle. But her disposition is particularly striking, considering the tragedy she has dealt with and her lifelong struggle with autism.

Public Schools Need Funding for Autism

From Technorati's Jeremy Robb.

I'm very lucky. I live in the boundaries of one of the largest school districts (if not the largest) in the State of Utah. That means this school district is well funded as it covers the more affluent East side of the valley, as well as the less affluent West side. And because it is well funded, the school district has been able to build a special school for special needs students, like my son. He has an occupational therapist that works with him and his sensory needs, a speech therapist that is assisting him in learning to talk, a fabulous teacher that coordinates the effort, and a supportive environment that helps all the students that are in need.
And there are quite a few. As Autism becomes more recognized, more children are entering our public school system with needs that many schools across the country are finding difficult to meet due to funding issues. Many districts do not offer special programs for Autism, because they just can't offer any special programs. Having spoken with many other parents in Utah,

Audit: Former Arkansas Center Residents Healthy and Safe in the Community

LITTLE ROCK, Ark. — Scores of developmentally disabled patients who were moved when the Alexander Human Development Center closed last year over concerns about their care are healthy and well served at new facilities, lawmakers heard today.
Of the 109 residents who were transferred when the Alexander center closed in June 2010, 59 are living in privately run facilities, 45 were transferred to other state facilities and one is living independently, according to a state audit presented to members of the Legislative Joint Auditing Committee.
Four others have died, according to the report.

Friday, January 13, 2012

Transition Time for Teens with Autism

Now that an autism diagnosis is 10 times more common than it was in the 1980s, more children than ever before are undergoing effective early interventions and treatment plans. However, one aspect of the disorder that has yet to garner attention is the scarcity of support for young adults transitioning out of high school and into adulthood.
“There is a severe lack of knowledge for educators and parents regarding available options after the public K-12 system,” says Rodger Stein, M.A., an instructor at UC Davis Extension and professor of psychology with the Los Rios Community College District who specializes in behavior supports for youth with high-functioning autism or Asperger syndrome. “We have to get to the point where our students are the ones driving their own transitions based on their own futures.”

Thursday, January 12, 2012

They're People First!

Came across this article from Canada and it's just too powerful to pass up. Have to change the perception of people with disabilities as victims. They are people -- just like anyone else.

Historically, people with disabilities have been regarded as individuals to be pitied, feared or ignored.
They have been seen as helpless victims, offensive adversaries, heroic people overcoming tragedy and charity cases that are dependent on others for their wellbeing and care.
The media would focus on heartwarming stories of inspiration that reinforced stereotypes and patronized and underestimated people’s abilities. They have also been treated as people who are incapable of making decisions about their own lives. Behaviour, life skills, social skills programs and so on were set up to address what they needed based on their diagnosis.

Autism Units Lacking at U.S. Hospitals

More psychiatric hospitals are working to meet the needs of a burgeoning population of kids with autism and other developmental disabilities, a new study finds, but despite significant growth, services remain limited.
Researchers found just nine hospital units across the country that focus specifically on the needs of those with autism and other developmental disorders. That’s more than twice the number that existed 10 years ago.

Nickels, Dimes and Autism

From Huffington Post's Todd Drezner.

At my son Sam's school, the math curriculum has recently been focused on coins. By the time Sam is an adult, all financial transactions will probably take place via the microchips implanted in our heads, but nevertheless, we've been dutifully working to help him understand pennies, nickels, dimes and quarters.
It's been a challenge. Unlike reading, which came easily to him and which he's very interested in, Sam doesn't really care about money (lucky kid). So one night, when we were going over the value of coins for what seemed like the hundredth time, I said to Sam, "Repeat after me. One dime is the same number of cents as two nickels."

Autism Speaks Executive Named to President's Committee

The White House has announced that the President intends to appoint Autism Speaks Executive Vice President of Programs and Services Peter Bell to serve on the President’s Committee for People with Intellectual Disabilities, which advises the President and Secretary of Health and Human Services on issues that impact people with intellectual disabilities and their quality of life. The Committee consists of 21 citizen members appointed by the President and 13 ex officio (Federal Government) members designated by the President.

Wednesday, January 11, 2012

Waiting List Funds, Oversight Still Critical

LINCOLN, Neb. -- With the number of high-profile issues facing state senators, they might be tempted to move on from focusing on developmental disabilities.
Credit Sen. Steve Lathrop for not letting a still-critical issue slide. Lathrop on Monday introduced a resolution asking the Legislature's Executive Board to extend the committee he chairs that was created in 2008 to focus on issues at the Beatrice State Developmental Center and other community facilities serving the developmentally disabled.
The committee was formed in light of a Department of Justice report in March of that year that detailed the systemic culture of abuse at the center as well as revocation of federal Medicaid certification, causing the annual loss of about $30 million in federal dollars.