Friday, September 30, 2011
All too often, self-advocates*—individuals with autism themselves—feel that parents of children with autism don't want to hear what they have to say. "There is a saying amongst developmentally disabled activists," writes one such activist in a recent blog post. "It goes like this: 'Some parents just want disabled children to speak and disabled adults to shut up.'"
These are harsh words, but they are at the heart of a conflict that recently came to a head over this very issue: When it comes to the developmental disability rights movement, who should be leading the way?
David Beversdorf of the University of Missouri found the drug is beneficial for improving language development and social communication in people with autism.
Many adults with developmental disabilities are on a waiting list. They are waiting to work. The general manager of Tantone, Sarah Baty, hopes a new thrift store and attracting more businesses to contract with will create more jobs.
Thursday, September 29, 2011
As parents fret, vaccination rates for kids have dipped. Childhood vaccination rates against measles, mumps and rubella (MMR), for instance, fell almost 3 percentage points to 90.6 percent in 2009 from the year before, according to data from private insurers.
During the first half of August, we asked people across the country for their views on vaccines in the latest NPR-Thomson Reuters Health Poll.
One bill that regretfully deserves a veto is Senate Bill 946 (Steinberg). It would impose a costly new mandate for private health insurance to pay for educational non-medical services for children with autism, while exempting the public health programs -- Medi-Cal and Healthy Families -- from the requirement to cover the same therapy.
None of these are accomplished short term. Repeat, repeat, repeat across ages and environments and with a variety of stimuli.
That's one less character than last year. All told, less than 1 percent of on scripted shows on ABC, CBS, The CW, Fox and NBC feature regular characters with disabilities.
OLD AGOURA, Calif. -- A new nonprofit organization is teaching organic gardening, animal husbandry, cooking and other practical skills to young adults diagnosed with autism and developmental disabilities.
Agoura Hills residents Sheila and Steve Mayfield launched Farming Independence last January from their home in Old Agoura.
Sheila Mayfield said she was moved to start the organization when she learned about the increase in the numbers of people diagnosed with autism and other developmental disabilities.
Her name was Iris.
Matthew was 3 years old, and while he hadn't yet been diagnosed with autism, his I.Q. scores were low, so he qualified for a range of services, including as remedial preschool(now called early intervention) and speech therapy.
I told the case worker that I didn't believe that Matthew would need services for long. I was determined to fix him.
"That's great," said Iris, "but let me tell you how we can help."
Now, a small new study of the popular gluten-free/casein-free diet, or GFCF diet, suggests it does not work, says Patricia Stewart, RD, PhD, of the University of Rochester. She presented the findings here at the American Dietetic Association's Food Conference Expo in San Diego.
Wednesday, September 28, 2011
"The more stressed parents are, the more developmental problems you will find in kids," said Dr. Gabor Mate, a Canadian physician.
He can't prove it, but nothing else makes sense, Mate said.
Well, it's been about five and a half years.
When I started on this site, my son was just a little guy.
At that time, I wanted to know all about autism spectrum disorders. And over the years, I have learned! The wealth of information I collected - all I ever wanted to know, and more! - will still be here, on these web pages, for a while to come. That's because any site guide starting out today to cover topics in autism would have to start almost from scratch in just a year and a half, when the new diagnostic manual is published. At that time, much of what I've written about - Asperger syndrome, PDD-NOS, speech issues related to autism and more - will simply be... obsolete.
The suit contends California is failing to adequately fund services needed by people with developmental disabilities by ignoring federal mandates despite taking federal funding.
Norwood, 28, of Stow, Ohio, has severe breathing problems, visual perception processing issues and mild hearing loss in one ear as a result of being born four months premature.
She relies on a personal aide she receives through the state-run Medicaid program to drive her places, tend to her home and help her complete her studies at Kent State University.
She also works full time as an office aide at two early childhood development centers affiliated with the Summit County Developmental Disabilities Board.
Without the help she gets from Medicaid, she said, "I wouldn't be able to live independently on my own."
The answer is increasingly clear. But it's also very complicated — and may provide a true test of whether Gov. Dannel P. Malloy's vision of cutting spending but preserving services actually can work.
It's far less expensive to use private nonprofit organizations to care for our neediest citizens. An ongoing study by the General Assembly's Program Review and Investigation Committee again confirms this: It costs about $321,983 per client at the Southbury Training School — home to more than 400 — while private groups provide the same care at about $168,786 annually.
The next step in the process is for the Illinois Commission on Governmental Forecasting and Accountability to hold a public meeting after receiving a recommendation for closure from the Department of Human Services.
Tuesday, September 27, 2011
Mary Hendricks, 19, was diagnosed with a severe case of autism at the age of 2, but also showed symptoms of digestive problems, skin infections and pain.
After 17 years of constant doctors’ visits to diagnose the problem, a specialist told Mary’s mother, Tina, that the key to diagnosing her daughter would be to diagnose her first.
In the past, Tina had suffered from colitis, fibromyalgia and flu-like symptoms.
Doctors ordered a Lyme disease test, which came back positive. Then, the same test showed that Mary also suffered from Lyme disease. After receiving the results, Tina recalled that before getting pregnant with Mary, she had two ticks removed from her skin and hadn’t thought about it since.
HAMPTON, Va. — Before school began earlier this month, Sadie Boone stopped by Langley Elementary to visit her son's classroom.
She was shocked that her 8-year-old, who has autism, was in a classroom with students ranging from kindergarten to fifth grade.
Boone is one of at least three Hampton parents who have filed complaints with the state's education department. They are decrying the district's decision to place children with special needs in classrooms spanning six grade levels without parent notification or input.
SAN BERNARDINO, Calif. - Grayson Izumi's Room A-5 is a busy classroom these days.
Inside, every day, students in Izumi's class for adults with special needs learn how to get through life.
Here, cerebral palsy, autism, Down's syndrome and other developmental disabilities take a back seat to Izumi's ability to keep students focused on a range of skills, from learning how to keep a checkbook to the importance of a canned food drive.
Under the legislation, the package is authorized to continue for three years. Money to pay for the programs has yet to be approved, but legislators have asked for $693 million. President Obama has said he will sign the bill.
"He had no language," said his mom, Candace Jackson. "Now, he has a full vocabulary and friends and social skills."
Jackson credits her son's success to an early diagnosis and early intervention, but all too often children, especially minority children, are misdiagnosed. "They're diagnosed anywhere from a year and a half to two years behind the general population," said Georgia Backus, the Director of the Rich Center for Autism. "Those two years are critical in their lives."
That's why the Rich Center is using a $95,000 grant from the Centers for Disease Control to create an outreach program in the tri-county area. The goal is to raise awareness about autism among minority communities.
The West Virginia Board of Examiners of Psychologists passed a rule in May that was enacted in July, requiring all behavior analysts to be supervised by a licensed psychologist at all times.
For many years, these analysts have provided a treatment called applied behavior analysis, or ABA therapy, to people with autism. One of those licensed analysts, Jill Scrabro-McLaury, is suing the board. She filed a lawsuit Friday in Kanawha County Circuit Court.
Their reasons vary: Some continue to worry about a link with autism even though research supporting a connection has been completely discredited. Others are concerned about side effects, or they say they don't believe that the diseases the vaccines prevent are really all that serious.
Persuading recalcitrant parents is a problem that public health advocates continue to wrestle with.
Monday, September 26, 2011
WASHINGTON, D.C. -- District officials have unveiled a new initiatve that focuses on signs of developmental disabilities and delays in children from birth to age three.
The Strong Start campaign was launched Sept. 26 and its theme, "Don't Wait and Wonder," encourages parents and other caregivers with concerns about a child's development to sign up for a no-cost evaluation.
Officials for Strong Start, formerly known as the DC Early Intervention Program, will also be able to determine families'eligibility for services.
The status of New Jerseyians with disabilities has diminished over recent years, rather than improved. Children and adults with special needs have taken a step back in employment, housing, health care, transportation and community acquiescence.
The general public is overwhelmed with trying to deal with the issues of meeting property tax requirements, escalating college tuition for their children, disappearing jobs, lower salaries, ever-increasing health care costs, and a cut back in public services.
At the same time, local, county and state agencies are finding it more difficult to provide services that, until a few years ago, the public took for granted.
An attempt will be made to at least create an ongoing dialogue among lawmakers, policy makers, public and private agencies and people with special needs, via a statewide summit and conference in East Rutherford on Oct. 3, 2011.
The Rizzo family of Marlton, N.J., had to work harder than most to prepare their daughter Danielle for first Communion. Dave and Mercedes knew Danielle would never quite understand the sacrament the way other children did because she has autism.
“It was very important to us that she made her sacraments around the same age as the other children,” said Mercedes. “At the same time, it was important that she was really ready.”
The only available catechetical materials were very verbal and included complex concepts that could never properly be conveyed to someone with autism. “They weren’t geared towards children like Danielle who are not verbal,” explained Dave. “She required something very concrete like she used in other areas of learning. Children with autism and similar disabilities are very pictoral in the way they think. Their understanding is visual, not language-based.”
In 1998, the Syracuse Developmental Center closed its doors amid a national movement to shift people with disabilities from institutional settings into the community. Thirteen years later, that transition is still under way: The West Seneca Developmental Center near Buffalo in July became the seventh residential development center the state has closed, and four more are targeted for closure by 2014.
The end to “warehousing” people with disabilities reflects a welcome growth in the inclusion of people of different abilities. Derogatory labels are now unacceptable, and people are quick to criticize the unenlightened few who occasionally utter the “R-word.”
"Did you run hard?" Douglas asks with a smile as Grace, a gangly 13-year-old with curly brown hair in a disheveled brown ponytail, intently studies her hands and her black-painted fingernails. Grace isn't interested in talking about her running. Practice ended half an hour ago, and after an hour-plus of running hard, she's hungry.
"Yes," she says, her words coming with difficulty but her tone dismissive. "Can I get a snack?"
Grace, a seventh-grader at Hannibal Middle School. is running this year for the school's cross-country team. She's also living with autism.
Sunday, September 25, 2011
Alexis emerged from the bathroom with lovely auburn hair, snug blue jeans and a huge grin.
“You want some coffee?” she asked, rushing around the house to locate photos of her family. “I’ll put a pot on for later.”
I’m here because Mark Knight at Jiffy Lube on Hendersonville Road said she was just about the best mother he’d ever met.
“Both her sons are autistic and never make less than an A or B. One of them (Christian, 15) hasn’t missed a day of school in seven years.“She’s awesome,” Mark said. “She spends so much time with her kids and went to school for months to study about autism.”
As the school year gets under way, incoming students are adjusting to a new schedule and new teachers, navigating their classes and peer groups, and generally struggling to figure themselves out. But for children on the autism spectrum, the return to the classroom can be much more complex. What are some of the unique challenges that kids with autism face during back-to-school season?
As a former college professor and the mother of a 12-year-old boy on the autism spectrum, I can attest that the transition from carefree summer to the bustle and busyness of back-to-school season can be a particularly tough time. These are harrying days for all kids, but for those on the spectrum, the challenges are more intense and different in kind. Children with autism typically struggle with novelty, and a new school year can bring an overwhelming flood of novelty—new teachers and classmates, a new physical space to become acclimated to, a new schedule and routine, new demands and expectations both academically and behaviorally.
WASHINGTON, D.C. – Autism treatment advocates have won one legislative battle after another since 2007, most recently in California, which sent a bill to the governor this month mandating that insurers cover the disorder. Now more than half the states have such requirements, but that success could be in jeopardy as federal officials set new national standards for health coverage.
Insurers and employers argue that the laws increase health costs because treatment is often expensive and lasts years. But the advocates have prevailed by using federal data showing a growing number of children with the disorder, compelling stories about middle-class families struggling to afford treatment and testimony from celebrity parents of children with autism, including former pro football stars Dan Marino and Doug Flutie.
However, a provision in the 2010 health overhaul law gives the federal government authority to define “benefits” that will be offered on the health insurance exchanges, or marketplaces, to individuals and small businesses starting in 2014. If states mandate a benefit, but it isn’t on the federal list, the states would be responsible for the cost of the coverage.
Saturday, September 24, 2011
YOUNGSTOWN, Ohio -- The embattled and financially troubled House of Hope group home for mentally disabled adults has closed and is giving up its Ohio Department of Health group-home license.
Charlene Crissman, administrator of the group home at 115 Illinois Ave., said the home is relinquishing its license and will not reopen under the current management.
“We don’t have the financial means” to reopen, Crissman said, adding that 17 employees, including herself, have been laid off because of Thursday’s closing, which follows this week’s relocation of all 42 residents.
They crowned Jake Hamilton, a special needs student, as homecoming king of the high school in this Minneapolis suburb.
"I didn't want him to get his hopes up too high, but Jake was convinced he was going to get it," Jacob's mother Susan Hamilton told KARE. "And I said, 'Okay, well, whatever happens happens. That's great!"
That's not the face 2-year-old Nina Cevallos and her Greenwich family choose to put on it.
The smiling face of Nina, who has Down syndrome, will be one of more than 200 photographs featured in a video that will play in New York's Times Square on Saturday morning. The video, which will play on the MTV plasma screen, is part of an effort to celebrate people of all ages from around the world with the syndrome living their lives and doing the things they love.
Friday, September 23, 2011
If there is one message Lisa Dosa of Thorold could share to other parents at home raising an autistic child, it's to never give up hope.
Despite the challenges that come with Dosa and her husband Angelo raising their six-year-old autistic son Jonathan, the experience has only strengthened them as individuals. And in spirit of Autism Awareness Month approaching in October, Dosa wants families where autism is present to know there is reason to always have faith.
"For us, most days are good," Dosa said. "But there are moments when things can be tougher."
"He's just one of my favorite people, and I felt like I wanted to work with people with disabilities," Dr. Quinn said of her 48-year-old brother, Dan Quinn, who lives in the Detroit area. "It's important for them to get optimal medical care."
So Dr. Quinn was prepared when she and her husband, Dr. Peter Smythe, found out their fourth daughter was going to be born with Down syndrome. Sara's birth seven weeks early with a heart defect was unexpected, but otherwise Dr. Quinn was ready.
"I was the most perfect parent to have a child with Down syndrome, there's no question about it," said Dr. Quinn, a University of Toledo medical school faculty member who works at Mercy Children's Hospital.
Offstage, the 17-year-old Fenton High School junior retreats, standing alone focused intently on her fellow actors as they say their lines, dance and sing. She holds her hands and twitches her thumbs.
Savannah isn’t just shy. She also has a mild form of autism.
Everybody's brains are different and certainly, the autistic brain connects in an unorthodox manner. Autism is not curable, but there are many language strategies the speech language pathologist can do to assist in organizing the brains of people with autism.
It is my theory that people with autism do not cross hemispheres of the brain, from left to right. This doesn't mean that people with autism don't use both hemispheres, but they can't connect the hemispheres so that they interact the way most brains do in typical developing peers. This can be seen especially in verbal children and adults with autism.
WASHINGTON, D.C. -- Money is tight in federal Washington these days, to say the least. But autism funding will remain at its current levels for the next three years if the Senate approves a bill that passed in the House of Representatives on Tuesday.
The $693 million in the Combating Autism Reauthorization Act will fund research into the causes and treatment of autism and other developmental disabilities, said Scott Badesch, president and COO of the Autism Society in Bethesda. It will also help pay to train medical professionals to recognize and properly diagnose autism early, and teach them how to work with these children and their families, he said.
Organized through the New York State Small Business Development Center, the initiative was launched late last year with a visit to China by CEO Fred Erlich.
Thursday, September 22, 2011
Now, they shop on their own.
Before, Lori needed somebody to go with her to doctor appointments.
Now, Lori goes to most appointments by herself.
Steve, 54, lost his vision when he was 8 and has cognitive disabilities. He works part-time assembling pens at the Industry for the Blind.
Lori, 52, is deaf in her right ear, wears a hearing aid in her left ear and has cerebral palsy and mild cognitive disabilities. She works part-time at McDonald's.
They've been married 12 years and are among those with developmental disabilities who would struggle living independently without drop-in support, said Valerie Mason, coordinator of the Independent Disability Services Independent Living Program.
The Vanderbilt Kennedy Center has joined with Autism Speaks to create a resource for physicians and parents of children with autism to better prepare for blood draws and other routine medical procedures.
This new toolkit, called “Taking the Work Out of Blood Work: Helping Your Child with an Autism Spectrum Disorder – A Parent’s Guide,” and the companion: “Taking the Work Out of Blood Work: Helping Your Patient with an Autism Spectrum Disorder – A Provider’s Guide,” was created to help families and health care providers make necessary medical procedures less stressful.
WASHINGTON, D.C. -- Hundreds of disability-rights advocates congregated on the West Lawn of the Capitol on Wednesday to protest billions of dollars in proposed cuts to Medicaid.
“States are cutting Medicaid, and federal cuts on top of state cuts would be ... catastrophic,” said protester Jessica Sadowsky of Maryland.
President Obama proposed a major debt-reduction plan earlier this week designed to cut more than $3 trillion over the next decade. An estimated $580 billion would be saved through cuts to entitlement programs.
PROVIDENCE, R.I. — At least eight agencies that provide services to people with autism, cerebral palsy and other developmental disabilities have filed a lawsuit in federal court to stop a rate change included in the current state budget.
They join other social-services advocates that are pursuing legal actions this month to block key provisions of the $7.7-billion budget that are set to take effect Oct. 1.
Wednesday, September 21, 2011
Autism affects 1 in 70 children of military service members.
Children like 7-year-old Skye Hule. She is the light of her mom and dad's life. She was diagnosed with autism and epilepsy while her mom was already facing a huge challenge.
“At that time my husband was deployed in Afghanistan,” says Sonya Hule.
Hule had to break the news over the phone that his baby girl was totally different than when he had left.
HIGHLAND PARK, Ill. -- The software testers at Aspiritech are a collection of characters. Katie Levin talks nonstop. Brian Tozzo hates driving. Jamie Specht is bothered by bright lights, vacuum cleaners and the feel of carpeting against her skin. Rider Hallenstein draws cartoons of himself as a DeLorean sports car. Rick Alexander finds it unnerving to sit near other people.
This is the unusual workforce of a U.S. startup that specializes in finding software bugs by harnessing the talents of young adults with autism.
Tuesday, September 20, 2011
But after being diagnosed with advanced (stage three) breast cancer this summer, Joan, of Elk Grove Village, is coming to terms with the fact that now she must put herself first.
"I have a hard time asking for help, so that’s probably what’s hardest for me,” she said, her voice filled with concern. “I’m glad that somebody saw we needed it because I wasn’t going to go ask.”
In order to comply with changing state Medicaid requirements, two regional mental health agencies – including the one serving Southeastern North Carolina – have announced their decision to merge, effective July 1.
The announcement is the latest step in a long application process for Wilmington-based Southeastern Center for Mental Health, Developmental Disability and Substance Abuse Services, or SEC, and the Jacksonville-based Onslow Carteret Behvaior Healthcare Services, or OCBHS. Boards for the two organizations voted to merge at a Sept. 14 meeting, but discussions about the agreement have gone on for months.
The formation of a single regional mental health-care entity is necessary due to a change in state rules that requires a population of at least 500,000 to administer mental health, developmental disability and substance abuse care.
“This is typical,” Cyndi Bryant, who teaches Martin and other special-needs students, said about the friendly exchanges. “Every single one of them knows her.”
Martin has Down syndrome and spends a lot of her time at school with other special-needs students. But those students get to mix with other students as much as possible, taking classes such as dance and physical education together.
Bryant’s statement about how well-known Martin is on campus is easy to believe, especially after what happened at Western on Friday night. Martin was crowned homecoming queen based on the results of vote of the student body.
AnnaLisa Sampson's on the job.
"Whatever's over here, I do," the bubbly 20-year-old from Mason City said Friday as she pushed a big instrument cart into a cart washer, and handwiped pre-sterilized, recyclable containers.
"I love it," she said. "It gets me busy. Something to do."
States are no strangers to classroom standards. Under the No Child Left Behind Act, signed into law in 2002, the federal government required states to create teacher standards and place highly qualified teachers in every classroom.
Nearly a decade later, the National Governors Association Center for Best Practices and the Council of Chief State School Officers spearheaded the initiative to create common-core standards to “allow teachers to be better equipped to know exactly what they need to help students learn and establish individualized benchmarks for them.” Today, all but four states have adopted the common standards to improve math and English/language arts skills.
We like both initiatives. Setting the bar high is a good thing for all involved. We are, however, disappointed to see so few standards set for teaching competencies for those working in special education classrooms, and, more specifically, for those teaching children on the autism spectrum.
Monday, September 19, 2011
Special education advocates are pushing for the passage of the American Jobs Act that President Obama recently announced. If passed, $30 billion will be dedicated to educators throughout the U.S. and help maintain education for students with disabilities. $30 billion will save an estimated 280,000 jobs and help state and local efforts to retain, hire, and rehire staff.
With the current economic downturn, schools have been forced to do layoffs and resort to large class sizes. A national survey by the Council for Exceptional Children (CEC) recently showed that special education administrators felt a strain on services provided to students with disabilities. Tighter budgets, less resources, and more students make it hard for administrators and teachers to meet all the priorities of students with disabilities.
PROVIDENCE, R.I. -- Agencies that provide services to people with autism, cerebral palsy and other developmental disabilities say that state budget cuts affecting their programs will result in layoffs and significant pay and benefit reductions to their staff, and may not even comply with federal law, if they go into effect as planned on Oct. 1.
This month, the state notified the non-government agencies that serve developmentally disabled people that their reimbursement rates will be cut by an average of about 11 percent to comply with the state budget that took effect July 1.
Sunday, September 18, 2011
However, the couple, Jeanne Waters and Charles Wisner of Frederick, are not your average bride and groom. They both have Down syndrome, and because of their developmental disabilities are unable to marry legally.
But on Saturday, they were joined together in a commitment ceremony held at the Scott Key Center, where they met and became boyfriend and girlfriend 25 years ago. The center is a division of the Frederick County Health Department that provides jobs for people with developmental disabilities.
Saturday, September 17, 2011
As planned, he arrived that morning with a portfolio of his comic strips and charcoal sketches, some of which were sold through a Chelsea gallery. Kate Stanton-Paule, the teacher who had set up the meeting, accompanied him. But his first words upon entering the office were, like most things involving Justin, not in the script.
“Hello, everybody,” he announced, loud enough to be heard behind the company president’s door. “This is going to be my new job, and you are going to be my new friends.”
As the employees exchanged nervous glances that morning in January 2010, Ms. Stanton-Paule, the coordinator of a new kind of “transition to adulthood” program for special education students at Montclair High School, wondered if they were all in over their heads.
At 4 years old, he already has spent 287 days there, getting treatment for cerebral palsy.
But on Friday, Peele boarded an airplane with his family and headed to Orlando, Fla., thanks to the Make-A-Wish Foundation and American Airlines.
Surrounded at the ticket counter by luggage, balloons and volunteers, he smiled. He finally was going somewhere other than the hospital or doctor's offices.
LINCOLN, Neb. — A decision is likely next week on possible abuse charges against suspended staff at the Beatrice State Developmental Center.
Gage County Attorney Roger Harris said Friday the Nebraska State Patrol has completed its investigation into allegations that staff abused or neglected developmentally disabled residents at the center. Harris declined to reveal the patrol's findings until he announces his decision, probably by the middle of next week.
The Atlanta Journal Constitution talked to three nurses to find out how they cope with the challenge of caring for patients and their own child with a chronic medical issue. We learned that clinical skills are an asset. Nurses are trained to assess situations, ask questions, seek solutions and make tough decisions. But when the patient lives in your home and in your heart, love is the glue that holds it altogether.
A new study found no association between how much Utah families earn and their children’s risk of being diagnosed with intellectual disabilities and autism spectrum disorders.
That finding, published Thursday in the journal Autism Research, contradicts earlier studies that suggested links between autism and higher income, and between intellectual disabilities and lower income.
Friday, September 16, 2011
YOUNGSTOWN, Ohio -- TreVaughn Powell, 13, tapped out three beats on his drum, making the shape of a triangle.
Dina Selleck, 13, drew a square with her drum solo.
They were among the students at Potential Development Center demonstrating the Students Motivated by The Rhythmic Arts Project, or TRAP. The project, funded by the Youngstown Foundation’s Hine Memorial Fund, is a collaborative effort between Youngstown State University’s SMARTS and the CreativeBridge Coalition.
The 55 students at Potential Development are all on the autism spectrum.
Thursday, September 15, 2011
On a 2-1 vote, the commission opted for a tax rate of .0385 cents per $100 assessed valuation, which will bring in about $435,000 over the next 12 months. The former rate of .077, which stood for years, had generated $870,000 annually for the board.
LEE, Mass. -- The folks behind the Lee campus of the College Internship Program are used to keeping a low profile, for their organization as well as their students -- young adults age 18 to 26 who are diagnosed with Asperger’s syndrome or other "learning differences."
With the launch this summer of a gallery and cafe at a prominent storefront on Main Street, coupled with the ongoing soft opening of a performance space in a nearby converted church, the program now is embracing a more public profile.
"For 28 years we were on little side streets, and people would see the young adults in town, and there was always mystery surrounding who they were, what they were doing," said Francine Britton, leader of the CIP’s associated foundation and director of the newly opened Good Purpose Gallery. "We’re all in a little bit of culture shock because we went from being down side streets on second and third floors of buildings to being very public."
The layout of the new enterprise reflects this attitude of openness, itself an outgrowth of CIP’s efforts to integrate its students into the community for the purpose of helping them increase their social acumen and build other life skills.
The family-based advocacy organization known today simply as “The Arc” was founded in 1950, provides assistance and support to people with intellectual and developmental disabilities. For many people with disabilities to enjoy self-directed, fulfilled lives, they depend upon the assistance of others, referred to as Direct Support Professionals. (DSP)
One of the things that has always fascinated me is that a skilled DSP is expected to be a teacher, a nurse, a dietician, a social director and a therapist all rolled into one –for the bargain rate of $7.50 an hour.
"Hello, this is Matthew calling," said the phone message "I want to talk to my mother about something. Tell my mother to call me back."
Matthew is 25 and lives in a supported living program with Camphill Communities California near Santa Cruz, California, less than a two hour drive from our home in Lafayette.
When I called Matthew, he sounded quiet--maybe a little homesick. He talked about Roy Orbison and David Lee Roth, and about the weather in Germany.
"Didn't you want to talk to me about something?" I asked.
"My stomach is a problem," he replied, "and I don't want to talk about it any more." After probing a little, I learned that Matthew had been in pain for a week with what turned out to be a flareup of colitis, a condition he has had since childhood. My mind raced.
McKenzye's Eatery and Bakery is new to Bowling Green, but for owner Karen Huffman it's a vision she's finally getting to fulfill for her Autistic son.
Wednesday, September 14, 2011
The successful search for a missing autistic boy in Southern California who was found safe and sound this week is a happy but humbling end to a common tale.
Eight-year-old Joshua Robb, who went missing from Twin Peaks elementary school Monday morning, weathered a night of lightning and heavy rain in the woods near the San Bernardino Mountains before he was found Tuesday afternoon. Joshua fled to the forest after squeezing between the bars of a metal playground fence. And it wasn't the first time.
"If it happens once, it will happen again unless you do something about it," said Dr. Max Wiznitzer, a neurologist specializing in autism at University Hospitals Case Medical Center in Cleveland, of the tendency for kids with autism to bolt or "elope."
Presidential candidate Rep. Michelle Bachmann (R-Minn.) is catching flak from the disabilities community for using the word "retardation" just after upsetting medical experts with her comments about a childhood vaccine in Monday's debate.
In a follow-up interview Tuesday on TODAY, she told Matt Lauer that a mother came up to her in tears following the debate and told Bachmann that her daughter suffered from "mental retardation" after getting the HPV vaccine.
Tuesday, September 13, 2011
HALETHORPE, Md. -- When the Norbel School for special needs students closed in June, it left school admissions director Frank Pugliese, like the school's the teachers and staff, unemployed.
But Pugliese, who had been at the school for 15 years, didn't stop working.
In fact, the Catonsville resident said he spent more time working during the ensuing eight weeks to start a new school with several of his colleagues than he ever had in his 18-year teaching career.
The result of all that overtime opened its doors Aug. 29 on Maple Avenue in Halethorpe, the site of the Ascension School that was closed by the Archdiocese of Baltimore last spring.Like Norbel School, the new Compass Academy teaches children with learning differences, such as Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, autism and Asperger's.
SARASOTA, Fla. -- The worst may be over for local health and human service agencies after years of budget cutting and rising demand, with state lawmakers telling nonprofit leaders Tuesday to expect a much better budget picture in 2012.
That came as a relief to the 135 nonprofit leaders gathered for the Community Alliance of Sarasota County's first legislative breakfast. But some urged lawmakers to go further and accept federal funding that has been tied up in political fighting.
Emmaus Homes is a place of the spirit. Its stated mission is, in part, “to enhance the quality of life for adults of all beliefs who have cognitive, intellectual and other developmental disabilities.”
Nate Hendrickson – TNT Instructor: “Ready?? Here it comes.”
At least twice a week 7 year-old Tate Johnson turns his early morning, into a learning and life changing day.
Nate: “Tater, nice work. You did it again.”
Here at TNT Gymnastics, Nate Hendrickson has become Tate's life leader and teacher.
DETROIT -- Many Michigan educators need to do a better job teaching children with autism, according to a study being presented today to the state board of education.
The Michigan State University study is the first of its kind to examine the extent to which the state's public school instructors know and use effective practices to educate students with autism.
The study of 194 Michigan educators found that many teachers have little to no experience working with autistic children. More than 40 percent are not applying the most effective teaching methods, according to researchers.
The mouse exhibits not only the repetitive physical behaviors, altered social behaviors, and impaired communication abilities associated with Timothy Syndrome (TS), a severe and rare form of autism, but also mirrors behaviors linked to autism spectrum disorder in general, a surprising and encouraging findings, researchers say.
“This animal and the syndrome that it is associated with provides one of the best chances to understand the underlying mechanisms of autism,” because the link between the two is very strong, says Randall Rasmusson, professor of physiology and biophysics at the University at Buffalo.
Last week Quinn announced plans to close seven state facilities — including Singer Mental Health Center in Rockford and Jack Mabley Development Center in Dixon — because he says there’s not enough money in the budget to keep them open. The move is expected to save $54.8 million.
State institutions are not the only entities to take a hit. Illinois has cut spending for community-based programs by $4 billion during the last 10 years — $76.3 million in the 2012 budget alone.
There’s no place for developmentally disabled people to go if they can’t access community programs, can’t live in institutions and can’t be taken care of by their relatives.
Monday, September 12, 2011
He doesn’t so much kick the ball as to attack it as he goes through workouts following a freshman practice at Huntsville High.
“His whole goal in life is to kick a football as far as he can,’’ said David Sheppard, Joel’s father and a former running back for Grissom in the late 1970s and early ’80s.
Yeah, Sheppard has a jock’s goal. That might not seem like much of an ultimate achievement, if it weren’t for the fact that Sheppard is autistic.
COEUR D'ALENE, Idaho — Life is an onslaught of situations to control, Ed Gray knows, for a parent of a child with special needs.
Raising his son, Cody, required grappling with public schools to accommodate the boy's autism. Ed and his wife, Kathy, tailored activities to suit Cody's need for routine, and they didn't dare leave him without a sitter even in his teenage years.
"For years, we didn't go to movies or dinner," the Coeur d'Alene father remembered. "It was such a struggle."
So as Cody approached adulthood, a significant question loomed: What now?
An effort between the Milwaukee Brewers and the Miracle League of Milwaukee has a few families excited. It's a multi-million dollar project that aims to give children with physical and developmental disabilities the chance to play the game they love.
Saturday, September 10, 2011
SOUTH ORANGE, N.J. -- The Centers for Disease Control estimates that in the United States 730,000 individuals under the age of 21 have Autism Spectrum Disorder.
In just a few years, this wave of autistic children will be reaching adulthood.
Friday, September 9, 2011
Six years after high school, students with disabilities are less likely to have gone on to postsecondary schools than their classmates without disabilities and less likely to be financially independent, but a little more likely to have children, according to a new report from the National Center for Special Education Research.
The report found that 55 percent of young people with disabilities reported having continued on to postsecondary school since leaving high school, compared with 62 percent of their peers in the general population.
These and other conclusions were based on 10-year-long study of the characteristics, experiences, and outcomes of a nationally representative sample of youth with disabilities. The National Longitudinal Transition Study-2 focuses on students who were 13 to 16 years old and receiving special education services in grade 7 or above on Dec. 1, 2000.
"I’ve ended up enjoying Matheny more than anything else I’ve ever done," Leach says. "In a nursing home, you can improve somebody’s function pretty significantly, but here, with the kids, there is just so much more energy. I started to realize that what I do can really help them forever. With this population, even though the change doesn’t happen quickly, I always know I’m doing something with them they wouldn’t otherwise get the opportunity to do – like sitting up or standing up by themselves. I’ve learned to shift my focus and think more long-term. I can look back and say, ‘Wow, they’re doing this much better’ – even if it may just be the smallest little thing."
SPRINGFIELD, Ill. -- Governor Pat Quinn said Thursday nearly 2,000 Illinois employees are losing their jobs. He's closing seven state facilities in mental health, developmental disabilities and corrections. Quinn is blaming lawmakers for cutting the budget more than $2 billion short.
"They've lined it out for each and every department and clearly it's insufficient in several major departments in our state in order to maintain existing facilities and existing personnel. So we have to take the action that we're taking today," said Governor Pat Quinn, D-IL.
The Jack Mabley Developmental Center in Dixon, IL is on the list. That means 163 employees will lose their jobs.
Families with a relative at the Mabley Center will be forced to find them new care. State advocates for people with disabilities said change will be difficult for the 91 adult residents living there and their care takers. But they said it's part of a nation–wide trend to move them away from state institutions.
Thursday, September 8, 2011
Home and community-based care has become a preferred alternative to long-term institutional care. Florida's Medicaid-funded waiver program allows developmentally disabled people to receive state services for less than the cost of institutional care, reintegrating patients with their communities and families.
The plaintiffs, on behalf of thousands of developmentally disabled Floridians eligible for Medicaid, accused Florida of mismanaging its Home and Community Based Services Waiver Program.
Among the subjects I wrote about yesterday was a book, Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son. It is, as the title indicates, the story of one parent’s journey — and it brought a question in the comments from Mir Kamin, who also has a child with autism, and who wrote:
I’m reading “Following Ezra” right now, and I would love to see you do a follow-up with Tom Fields-Meyer (or maybe he’ll write something to share here?). Granted, I’m not done with it yet, but as much as I’m enjoying his book, I’m still bristling over the whole assertion that he never needed to mourn. If that’s really true — and if I get to the end of the book and he’s still never for one moment had a bit of grief over the cognitive dissonance between what he expected and what he got — then he’s a lot more self-actualized than I am, and I tip my hat to him. But as a fellow autism parent, I can’t help feeling that a piece of this story was brushed aside because it didn’t fit the feel-good theme.
I thought that was an excellent idea. So did Tom Fields-Meyer. I sent him the question, and here’s his reply:
Wednesday, September 7, 2011
Proctor’s suspicions were confirmed when a developmental pediatrician diagnosed her son, Ari Joseph, as autistic. Proctor immediately went to work. She had worked successfully as a marketing professional in Michigan and then in Atlanta, GA., where she currently lives, but found a new calling as an autism advocate.
A new study has discovered there are different biological types of autism, with genetics, the immune system and the environment all thought to be factors in causing the varied forms.
A study of 350 children in the US found two biologically different types of brain development in autism and concluded that there are likely to be more.
"There's no reason why parents shouldn't have products that don't just help kids, but feel good, look good and are affordable," said Weiss, the 31-year-old founder of Fun and Function (www.funandfunction.com), which sells everything from clothing to gym equipment and games for kids with developmental disabilities such as autism.
Both jobs are at Goodwill Industries, and Hashimoto is no ordinary worker. Like an estimated 1.8 percent of Hawaii's population – about 24,500 people – Hashimoto was born with a developmental disability.
Tuesday, September 6, 2011
A federal appeals court has upheld a $29 million verdict for a family that filed a medical malpractice lawsuit over negligent treatment at a government-funded clinic that allegedly caused their son to develop cerebral palsy.
The cerebral palsy malpractice lawsuit was originally filed by the parents Christian Arroyo, who was born in 2003 at the Erie Family Health Center. He is a spastic quadriplegic due to cerebral palsy, which his parents’ lawsuit alleges was caused by a brain infection that should have been detected and treated.
ST. LOUIS, Mo. -- St. Louis audiences are the first to see "Falling," Deanna Jent's new play about a family living with the struggles of autism.
Bet that we won't be the last.
Jent's drama — inspired by her 17-year-old autistic son and her family's day-to-day life in the vortex of what she calls "extreme parenting" — is a gripping piece of theater, emotionally wrenching and theatrically astute. It has, as they say, legs. It also has a keen mind and a warm, though troubled, heart.
STANFORD, Calif. -- The gray matter in the part of the brain that affects social communication has a distinct organization in those with autism, U.S. researchers say.
Study leader Vinod Menon, a professor of psychiatry and behavioral sciences and of neurology, and colleagues at Stanford University School of Medicine and Lucile Packard Children's Hospital analyzed brain-scan data to distinguish children with autism from children developing typically.
Many parents are finding that just posting questions about everything from diet, to finding health-care practitioners in their areas, to locating appropriate schooling for their child with autism, can be answered via Facebook.
Monday, September 5, 2011
NEW YORK -- In recognition of Labor Day, the National Organization on Disability salutes nine U.S. companies that have recognized and hired Americans with disabilities.
The National Organization on Disability, a non-profit organization that promotes the full participation of America's 54 million people with disabilities, says among all working-age people with disabilities, only 21 percent say they are employed full- or part-time, compared to 59 percent of people without disabilities.
PHOENIX -- A program at a northeast Phoenix high school is helping students with special-education challenges land jobs despite a tough economy.
The Work Experience Program at Horizon High School has established an internship this year that prepares students for careers in the hospitality and food-service industries. "It's a program designed to provide an opportunity for students with disabilities to develop skills and experiences related to working in a competitive workplace," said Richard Walker, a special-education teacher who founded the program.