Saturday, July 30, 2011
She's like a toddler — sometimes good, sometimes terrible.
And recently, violent.
Holly attacked her mother with a wrought-iron wine rack, bruising her, and pulled out clumps of hair.
"I had to call 9-1-1," said her mother, Phyllis.
Holly and Phyllis, 54, have lived a rollercoaster life together, but Phyllis always coped.
Now, Phyllis is at wit's end.
The Endicott mother had two chances more than five years ago to put Holly in a group home.
Now, even if she can bring herself to do it, a spot in a government-funded home no longer may be an option. Some families already have to wait years for placement, and no new homes are on the horizon as the state struggles with a tenuous fiscal situation.
BOSTON -- Boston police unveiled a program Saturday to help responders find those with special needs who tend to wander off.
The program, dubbed North Star Personal Alert and developed by an officer whose son is autistic, allows parents and guardians to provide police with photos of their loved ones and information that will help authorities find them if they go missing.
North Star is geared toward children with autism and adults with Alzheimer’s disease, police said, though it is not limited to those groups.
HARTFORD, Conn. -- Marta Calderon of Bridgeport has cared for her teenage grandson since he was a toddler, but doesn't have health insurance through her employer. Recently the teen needed emergency treatment to prevent an infection. Medicaid paid for the procedure, and he is well. Marta's teenage granddaughter, who also lives with her, is scheduled for gallbladder surgery, which will be covered. Although Marta struggles to meet all her family's daily expenses, she is grateful for the life-sustaining coverage that Medicaid provides for her grandchildren.
Naomi Firme of Griswold was disabled by a particularly aggressive form of multiple sclerosis. Without Medicaid she would not be living at home or even alive today. Her Medicaid coverage enables her to get care at home and avoid more expensive nursing home care. Though she was expected to live less than two years when she went home from a nursing facility, she already has outlived her prognosis by nine years.
In Connecticut, Medicaid provides critical health care to more than 650,000 people such as Marta's grandchildren and Naomi — children, people with disabilities, seniors and other low-income adults. Unfortunately, Medicaid is in the crosshairs of the budget discussions in Washington. Some in Congress want to make major cuts in the federal share of Medicaid funding.
The lesson: Even when both partisan sides at the State Capitol agree on a goal for serving people better while spending less, achieving that goal isn't quick or easy. And cutting health care spending while working on systemic change can make the reform task more difficult -- and more urgent at the same time.
Friday, July 29, 2011
Labels are useful. They're shorthand for what we want to communicate and yet, they often obscure what is really being said. We say things like, "oh, he's schizophrenic," "she's bipolar," "he's an alcoholic," "she's anorexic," "he's blind" and the meaning seems to get conveyed, but does it? After all, that's not all the person is. It's something they have been diagnosed with, perhaps struggling with. It's a medical term, but it does not encompass who and what that person is in their entirety.
When I hear someone describe another person as "autistic" I understand that person has been given a diagnosis of autism, but I don't presume to know much more about them.
Haley Moss, autistic but with artistic talent to burn, was honored with the Teen Hero award by Marino, who she is working with to raise funds for children with special needs. Other stars at the event took home some of her artworks as gifts while seven were auctioned off to raise money for charity.
Out national debt is somewhere in the neighborhood of fourteen trillion dollars, and it is only going to get larger as time goes on. It is important to come up with a sensible plan to start chipping away at this debt, but we cannot and must not cut the government provided medical services any more than they already have been. This issue is of personal importance to yours truly, and here's why: I am disabled, and I rely on Medicare and Social Security to keep my feet on the ground -- literally.
When I hear someone describe another person as "autistic" I understand that person has been given a diagnosis of autism, but I don't presume to know much more about them. For example, I won't know if this particular person diagnosed with autism can speak, read or write. They may have other issues, physical impairments or other diagnoses added. These may further illuminate, but the labels begin to overwhelm the actual person.
BOSTON -- It has become a wrenching but familiar sight for members of the Legislature: Brandon Sanchez - restrained by his uncle, Representative Jeffrey Sanchez - writhing as he attempts to kick, claw, and slap at his own face, the self-injurious consequence of a debilitating mental disorder.
In some ways, Brandon has become the poster child for the Judge Rotenberg Center, a Canton special needs institution that backers say is the only one in the country to apply skin shock therapy to the severely disabled, a method labeled by some lawmakers as barbaric and torture but supported by families of patients who say it is their last resort.
There was sadness, she says simply, for all that he will never have. Today she acknowledges: "He's like a 6 foot-2 inch, 4-year-old."
Matter of factly, though, French moves on.
She adds that David, now 19, is a really happy kid who lives in a group home and has a really good life.
"I knew deep down inside that she wanted to make friends. She didn't know how," her mother, Sue Henton said.
She hopes that enrolling Krystiann, who has Asperger syndrome, in a new research study at Eastern Virginia Medical School in Norfolk will help with her daughter's social isolation.
Thursday, July 28, 2011
ST. LOUIS, Mo. -- An autism doctor who operates clinics in St. Peters and Springfield, Ill., has been suspended in two states for alleged mistreatment of children.
Dr. Mark Geier has been accused of misdiagnosing children with early puberty and treating them with high doses of Lupron, a drug used to suppress the hormone testosterone.
Geier operates autism treatment clinics called ASD Centers in at least eight states. Maryland, his home base, suspended his license in April. Washington state followed a month later.
Wednesday, July 27, 2011
Stimulating brain cells with light can generate autism-like symptoms, Stanford University researchers reported in a mouse study that may provide clues on what causes the disease in people.
The scientists implanted light-sensitive proteins into parts of the brain linked to social behavior in normal mice, and then activated them with blue lasers routed into the brain using fiber-optic cables. Normally gregarious mice didn't socialize with other animals and developed a brain-wave pattern seen in some people with autism and schizophrenia. Their interest in exploring inanimate objects was normal, according to the results published online in the journal Nature.
WASHINGTON -- As a young woman with Cerebral Palsy, I learned at a young age that if I let my disability stop me from reaching my goals, I would be promoting a common misconception that disability is equal to inability. So, when I was offered an internship at the White House working for Kareem Dale doing outreach this summer, I could not let the opportunity pass. I had no idea what my internship would entail, how I would manage my expenses, and most importantly, if this new city would be accessible, but when I got to Washington, what I saw inspired me.
Over the last few years I have sat by and watched as 23 other states passed autism insurance legislation. I’ve often wondered why Michigan isn’t one of them. These states recognized the medical, societal, family and business benefits, and faced the choice that comes with autism insurance legislation: Pay now, or pay later.
Today, twenty one years ago, the “Americans With Disabilities Act” was signed, protecting the 36 million people with disabilities in the U.S.
This afternoon, a coalition of disability groups is rallying together to protest sub-minimum wage jobs for those with disabilities, which they say U.S. Sen. Mark Kirk supports. Disabled Americans Want Work Now (DAWWN) and the National Federation of the Blind will protest from 1 p.m. to 2:30 p.m. at the Federal Building in Chicago.
ST. PAUL, Minn. -- State Rep. Jim Abeler writes in his July 21 commentary ("A job well done on health, human Services") that the bill "minimized reductions to disability services." This is an overstatement, to say the least.
We understood going into the 2011 legislative session that funding for human services would likely take its share of cuts, but this bill is far more disappointing than we imagined, in a number of ways.
Under the final health and human services (HHS) budget, hundreds of millions of state and federal dollars that would have paid for services for persons with disabilities in the community will be lost.
Some of these cuts are cruel and unwise and could force Minnesotans with disabilities into nursing homes or other institutions, which will only add to the state's future budget woes.
Clinical Pathology Laboratories is also among those named in the lawsuits, said Joseph Berra, an attorney for the Texas Civil Rights Project, which filed the suits on behalf of several plaintiffs.
On the 21st anniversary of the Americans with Disabilities Act, the Boston-based Disability Policy Consortium and other plaintiffs - four who are blind, two who are deaf, and two with other disabilities - filed a suit in US District Court in Boston, alleging MassHealth violated the law by failing to provide written notices in Braille or other electronic forms, failing to use American Sign Language to communicate, and not listing phone numbers to help the hearing impaired on the agency’s website.
“The ADA was pretty clear that state governments have to make communications accessible to people with disabilities, so they can participate as fully as anyone else,’’ said Bill Allan, executive director of the Disability Policy Consortium. “The Commonwealth has ignored this issue for years. It has been brought up to them in reports and by individuals. It’s time for them to take action.’’
The challenges facing healthcare providers for rural areas could be compounded by recent healthcare legislation, according to the UnitedHealth Center for Health & Reform Modernization.
"This is kind of an opportunity," UnitedHealth chair and report author Simon Stevens told Reuters. "Expanding coverage will mean that more people will have the ability to access care than before, but it's also a wake-up call."
Someone overcoming addiction may be supported through counseling.
Someone with physical or developmental disabilities may be strengthening their body in warm-water therapy.
It may be happening throughout the Western suburbs. And it’s all under the programs and services offered by the Association for Individual Development.
"We can't even say what a difference it makes being able to take her to a movie or shopping with us," said Deborah Clark, who along with her husband, Larry, adopted Cassida from a special needs foster care program more than 32 years ago. "She just loves to go with us."
With Cassida confined to a wheelchair and suffering from mental disabilities, Clark said she and her adopted daughter have seen firsthand the impact the law has made over the past two decades. Thanks to the ADA, businesses and municipalities are required to offer handicap parking spots, wheelchair ramps, curb cuts and a variety of other additions designed to make establishments accessible to all.
Seven years and roughly 8 months ago, I was given one of the biggest blessings I will ever have in my lifetime. Samuel Tully Jordan was born, weighing in at a whopping 9 lbs. He was named for my father's best friend, a man I greatly admired, Sam Johnson. Sam passed away due to Non Hodgkin's Lymphoma during my pregnancy. My brand new little Sam was my easiest delivery out of my three children. The only unusual thing that happened during my pregnancy was preterm labor at 34 weeks. My OBGYN slapped me in the hospital, and put me on a magnesium drip for three days to stop the contractions. They stopped - only for me to be induced at 39 weeks because he was such a big baby. I often look back at this scenario and wonder if that is what happened to essentially cause my son to be "different".
Column by Brendan Williams, who served in the Washington state House of Representatives from the 22nd District of Thurston County from 2005 through 2010. He is the former director of the Washington Health Care Association.
OLYMPIA, Washington -- In 2000, a jury found three men with developmental disabilities were physically and sexually abused, from 1994 through 1996, in a Bremerton adult family home. The jury awarded $17.8 million from the state.
The trial record reveals the men’s disabilities were so severe they could barely communicate through gestures, let alone articulate their torture. The state licensed their caregiver despite the fact he was previously fired for alleged abuse.
Washington saves considerable money through residential care of vulnerable Medicaid clients who formerly would have been in nursing homes. Yet it does so with what often seems to be little regard for care quality or safety, giving rise to episodic legal settlements, verdicts, and media exposés. These, in turn, are followed by public pronouncements of concern, and feel-good bills, largely leaving underlying problems unresolved.
The lobby, once bustling with visiting families and ringing pay phones, is quiet.
But the memories of growing up among hundreds of other children and adults at the West Seneca Developmental Center flooded back Tuesday as Orzel returned to say goodbye.
"It's bittersweet," said Orzel, now 51, married and living in Albany. "I can't go, 'yeah, yeah, yeah, it's closed,' because they're like family. It's like family."
Tuesday, July 26, 2011
At the beginning of the legislative session, Andrea Richardson, Bluebonnet Trails' executive director, was pleasantly surprised when the budget reductions she thought would force Bluebonnet to cut services to 2,000-plus individuals never materialized. But she was soon unpleasantly surprised by the dramatic cuts to programs serving people with developmental disabilities.
“We’re looking at cutting about 470 persons from our services list,” Richardson says.
That's far fewer than 2,000, but it’s little consolation to those on the sharp end of the budget blade, like Joe Goode.
But advocates who worked more than a decade for the law, which goes into effect Jan. 1, 2012, were disappointed to find out that an amendment made by the governor could delay a key piece as long as two years.
For 17 years, Eileen Phoenix has put her heart, soul and a lot of money into finding a cure for her autistic 19-year-old daughter, Kasey.
But at a once-a-week afterschool program run by University of Iowa researchers at an elementary school here, he has started opening up. Recently sitting in front of a Dell touch-screen tablet computer, he traced a big circle with a stylus around a group of stick figures drawn moments before by his brother seated across from him. When his mother asked him to explain the picture, he replied, "Summer school."
KENDALL, Fla. -- This summer, the non-profit Miami Dance Project has been using music and movement to reach and teach children with autism.
For the past six weeks, a special dance therapy camp has been taking place at New Image Dance Studio in Kendall.
By scanning the brain activity of sleeping children, the scientists discovered that the autistic brains exhibited significantly weaker synchronization between brain areas tied to language and communication, compared to that of non-autistic children.
Monday, July 25, 2011
For years, Craig Blackburn dreamed of getting his own place. And as soon as he learned about A Home of My Own, that dream turned into a goal.
“I was living with my parents, and I was 30 years old,” he said.
Blackburn knew reaching that goal would mean making some big changes in his life: He would have to leave his parents’ house in St. Charles Parish, where he’d lived his whole life, and move to Jefferson Parish. And he’d have to leave the job he had at the Winn-Dixie in Luling where everyone knew him and cared about him.
At least four such orders were pulled back after an outcry. But advocates for those who use the services, such as people trying to re-enter the work force or live independently, say the record stirs deep concerns, especially given the broader authority that state lawmakers just gave the Corbett administration to cut programs without public review first.
"We're here, we're loud, we're disabled and we're proud," marchers chanted as they celebrated the 21st anniversary of the Americans with Disabilities Act's signing.
Colorful signs dotted the crowd, declaring "United We Stand" and "Cuts Kill, Taxes Heal."
To some, such as residents at Barclay Friends and patients at Bryn Mawr Rehab Hospital, these activities are forms of therapy.
Horticultural therapy, to be exact.
"Gardening is an equalizer," Paula Swearingen, a horticultural therapist at Barclay Friends, said. "It takes away stigmas and social class. Being able to contribute makes people feel worthwhile."
Anti-vaccine groups in the U.S. and Europe have for years questioned the safety of vaccines like measles-mumps-rubella, or MMR; one highly publicized claim — that the vaccine causes autism — has been debunked over and over. But according to Heidi Larson, a researcher and lecturer at the London School of Hygiene and Tropical Medicine, anti-vaccine groups exist in developing countries as well and are getting better networked and organized.
SYRACUSE, N.Y. -- The state is finally getting tough with agencies that abuse the trust placed in them to care for people with developmental disabilities.
This month, the state Office for People With Developmental Disabilities started to publicly disclose those nonprofit organizations that have had serious problems maintaining an adequate level of care or financial viability.
It’s a terrific idea. All families of developmentally disabled people — indeed, all New Yorkers — need an early alert to know which agencies are not meeting standards.
At the opening ceremony of the Best Buddies International Leadership Conference, they heard the opposite: Yes, you can.
“‘I think she can’t.’ I’ve heard people say this so many times,” said Rachel Lipke, an intellectual and developmental disabilities self–advocate. “I’ve had a lot of difficulties in my life, but I’ve made sure to turn the word ‘can’t’ into ‘can.’”
“Anyone with experience on Prozac?’’ asks a woman on the community page of www.babycenter.com. Prescribed the antidepressant by her doctor, she writes, “I’m just really concerned and frankly scared to take them after reading all these articles and research. I’m 20 weeks 2 days, and I’m supposed to start on 10mg of Prozac this morning, but I’m staring at it right now and I don’t know what to do - should I take it?’’
A couple of years ago, I visited my home town. While telling some of my old high school friends about Jack, my son with autism, one of them said, "You know I have a brother with autism, right?" I thought about it and I remembered him. I hadn't ever interacted with him much, but he was definitely different than the rest of us. I'd never known he was autistic, but after she said that, it made complete sense.
I asked her how it was to grow up with an autistic brother. I think I was hoping that she would tell me that he had brought extra meaning to her life, that he had taught her to appreciate differences or that she had learned something important from him.
She thought about it for a minute and then she told me that it was hard. That sometimes it was embarrassing.
It was tough to hear that, but it was honest.
San Francisco’s 31st annual Jewish Film Festival opened at the historic Castro Theatre on July 21 with the North American premiere of the Israeli film “Mabul” (“The Flood”). Winner of the best film and best cinematography categories at the Haifa International Film Festival in September 2010, and having earned six Ophir (Israeli Academy Award) nominations, this coming-of-age story centers on Yoni (Yoav Rotman), a boy about to have a bar mitzvah, and on Tomer (Michael Moshonov), his severely autistic older brother, who unexpectedly arrives home after years of living in an institution.
Sunday, July 24, 2011
MILWAUKEE -- A Milwaukee charter school that caters to children with special needs ranging from autism to homelessness - the only school of its kind in the city - is in danger of closing after Milwaukee Public Schools failed to accommodate the school's enrollment needs in its new building, school officials are charging.
Wings Academy was faced with a move out its former site, at 1501 S. Layton Blvd., because the building that housed Wings for nine years was scheduled for demolition. The Wings administration entered into negotiations in April with Milwaukee Public Schools to rent the Dover Street School, 2969 S. Howell Ave. In order to afford paying an extra $100,000 a year for the space, Wings administrators said they needed to increase enrollment from 150 full-time equivalent students to 205 in order to boost the school's revenue.
He had been to summer camps before but Kenneth, 14, said he never felt more comfortable than he did at Camp Coast, a YMCA of the Suncoast summer camp designed specifically for children with autism and other developmental disabilities.
Kenneth celebrated the last day of Camp Coast Friday afternoon surrounded by his new friends as he spoke about his favorite day of camp, a field trip to the Homosassa Springs Wildlife State Park.
NORTH VANCOUVER, BC -- "My son isn't able to talk, but I know how to speak up for my son because he gave me the voice to do that."
North Vancouver resident Cheryl Baker's son Calvin Jr. has cerebral palsy and a complex seizure condition. When he was eight years old he had 33 seizures in one day. When he was 16 he underwent brain surgery to help alleviate his seizure condition. He is unable to talk, he cannot walk and he has minimal functionality on the right side of his body.
He is 22 years old. He receives $233 a month from Community Living British Columbia, a provincial agency responsible to the Ministry of Social Housing and Development.
"My son is a fighter. He is a very strong person and I really admire his strength in all of the obstacles he has faced. What I've had to go through is nothing in comparison," Baker says.
Saturday, July 23, 2011
NORFOLK, Va. -- Families of children with autism celebrated the passage of a law earlier this year that would require insurance to cover a costly treatment for the developmental disorder.
But advocates who worked more than a decade for the law, which goes into effect Jan. 1, 2012, were disappointed to find out that an amendment made by the governor could delay a key piece as long as two years.
One of the governor's amendments requires therapists of Applied Behavioral Analysis -- the gold standard treatment for autism -- to be licensed by the state of Virginia.
The regulatory process to set up a new license in Virginia takes 18 months to two years to complete, according to Karin Addison, a special adviser in the state's office of Health and Human Services. She said the law does not contain a fast-tracking clause, which could have sped up the process.
Friday, July 22, 2011
COLUMBUS, Ohio -- State auditors said the Ohio Department of Developmental Disabilities has failed to account for more than $1.3 million in tax money it paid to a company that provides protective services to the mentally retarded and developmentally disabled.
The Ohio attorney general's office, which pursues Medicaid fraud, is investigating, The Dispatch has learned, although a representative would not comment.
The 20-thousand pound magnetic resonance imagining machine is in the newly constructed wing of the University of Utah Neuropsychiatric Institute. It's a higher powered MRI that offers new hope to Utah parents who have children with autism.
FORT MEYERS, Fla. -- She's been onstage only two weeks, but already Bella acts like a diva.
Minutes before showtime, the dog starts barking outside her handler's dressing room at Broadway Palm Dinner Theatre.
Then she happily struts across the stage during the musical "Annie" and soaks up the applause at curtain call.
Bella even "signs" autographs with her paw and an ink pad.
"She loves to be on the stage," says owner Madison Terrasi, 16, who plays the orphan July. "You can see it in the way she wags her tail."
A Cobb County warrant charges Tiffany Denise Allen with simple battery, simple assault fear and disorderly conduct.
According to the warrant, Jennifer Schwenker entered the Marietta McDonald's located at 1291 Bells Ferry Road with her children and service dog on July 12.
Allen, off-duty at the time, became irate that the dog was in the restaurant, the warrant says.
From testing sound equipment to pointing out markers in the scene where his actors should stand to deliver their lines, every aspect of the room he commands is reminiscent of a Hollywood film set.
The only difference for Travolta is that his actors are not from California talent agencies, but instead are between the ages of 9 and 22, all possessing differing forms of autism or Asperger's syndrome.
COLORADO SPRINGS, Colo. -- Garion Gliniewicz is autistic and has trouble communicating. As his mom, Kristie Teer, describes it, "A lot of the things he says are understandable, but for a stranger it can be very, very hard to understand him. Language is a big issue."
This past Sunday, Teer was with her 18-year-old son at the Springs Church on Jet Stream Drive, when Garion got up to go to the bathroom.
Garion's father Shawn Gliniewicz was told later by church security what happened.
A security guard noticed Garion and thought he was behaving oddly. He followed the teenager into the bathroom and noticed that he pocketed a clear plastic item. The guard then confronted Garion, suspecting the teen was using drugs.
Chattanooga's TEAM Centers Inc. office has notified 22 employees -- including three clinical psychologists, two social workers and a developmental pediatrician -- they will be laid off effective Aug. 15, according to two people close to the situation.
The shutdown is a byproduct of state lawmakers' budget cuts, which will leave those who suffer from mental disabilities, autism and cerebral palsy without a formerly reliable option, a TEAM executive said.
Stretching over the next two years, the plan levels some of its biggest cuts to HMOs and county-based groups that manage care for patients in the state's Medical Assistance health insurance program, according to detailed figures provided this week by the state House of Representatives.
The cuts will come in three key ways - outright rate reductions, a competitive bidding requirement in the metro, and programs that put payments to the plans at risk if they can't meet certain quality goals that should also cut costs. HMOs have been on the hot seat all year at the Capitol, given the industry's record profits at a time of a gaping budget deficit.
"The cuts are significant," said Eileen Smith, a spokeswoman for the Minnesota Council of Health Plans, the trade group for HMOs.
“There are major issues with the budget,” said Donna Martin, executive director of the Community Provider Network of Rhode Island, an organization representing 19 private providers of services and supports to people with developmental disabilities. “The governor proposed a $9.5 million reduction for services for adults with behavioral and developmental disabilities. House Finance passed $24 million in cuts directly to individual services, and a $4.2 million cut in transportation that is embedded in the [state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals] budget and earmarked for us. It is another unfunded mandate that heavily affects people who live at home with their families.”
Young Emilio wants to grow up to be a firefighter. Little Emma wants to be a teacher. How do we know? Because we ask them. We prepare them. We push them. We guide them. Is it assumed differently for a child with autism or a child with intellectual disabilities or even multiple disabilities? If those with severe disabilities are capable and only require society to think out of the box, seems the world could make a place for a willing heart.
An intriguing research article coming out in the August 2011 issue of Intellectual & Development Disabilities looks at what is being done to enable the vocational dreams of some special needs kids. Parents need to be girded with facts and data to help them partner early on with educators, counselors, and employers to moving more severely disabled children closer to finding their life's work.
TRENTON -- New Jersey’s oversight of local special education programs -- ever a complex and contentious topic -- won some praise but also received warnings from federal monitors in their latest compliance report.
The report from the Office of Special Education and Rehabilitative Services includes year-old data, in this case 2009-2010. Still, the federal monitoring represents an annual report card on how well a state serves its special education population, numbering more than 200,000 students in New Jersey.
The state for the first time in three years was placed in a “needs assistance” category in two areas for how quickly it investigates and resolves complaints against districts for not meeting requirements -- from class sizes for students with disabilities, to the availability of programs, to the handling of disputes with parents.
Three camping trips were taken by participants of the Outdoor Adventures Program, which is sponsored by the Association for persons with Intellectual Disabilities (AID), in conjunction with VIP. One trip was to Lake Wappapello State Park and the other two were to Arrowhead Campgrounds in Glen Allen. At least two more camping trips are planned before the summer is over.
There’s a promising new study that shows why low cholesterol levels could be making autism symptoms worse.
Rose Barker is a preschooler who has autism.
Her mom Angela says, “This is a child that would have a blank stare and run from other people if she didn't know them. I would have to literally carry her up the stairs with me if I just went from one level to another."
Today Rose is reading, smiling, and interacting like never before. And a packet of cholesterol could have helped make the difference.
Thursday, July 21, 2011
The borough resident is pleased that an image of her 3-year-old daughter, Ava, photographed by Keith Hopkins, who has a studio in town, is being used in an effort called "Stories of Autism," by a Seattle, Wash.-based non-profit organization whose mission is to raise awareness, acceptance and inclusion of autism through photography.
TALLAHASSEE -- The Agency for Persons with Disabilities implemented a 4 percent provider rate reduction July 1, as required by the Florida Legislature.
Additionally, the law requires a cost plan freeze for all waiver recipients. No one may increase their waiver services unless they are in a crisis situation. The Florida Legislature has mandated that the group bring its Medicaid waiver expenditures within is appropriation.
Starting this fall, wandering will be added to the list of descriptors doctors can use to diagnose individuals with autism, intellectual disability and other conditions.
The addition comes after a federal committee gave the final go-ahead on a proposal to make wandering a secondary classification that could be applied to individuals with developmental disabilities or other diagnoses.
Wednesday, July 20, 2011
I was encouraged when I read the following press release, last Friday:
SACRAMENTO -- Senate President pro Tempore Darrell Steinberg said he's pleased with what may be significant progress in the fair insurance coverage of therapy for people with autism, after the Department of Managed Health Care revealed a new insurance settlement agreement with one of the state's largest HMOs during a hearing of the Senate Select Committee on Autism and Related Disorders.
During Wednesday's hearing, DMHC revealed a settlement agreement with Blue Shield of California regarding insurance coverage for Applied Behavioral Analysis (ABA) in the treatment of autism and related disorders. DMHC also indicated it is in similar negotiations with Blue Cross and Kaiser Permanente. Those three health plans represent an estimated 95 percent of the 22 million Californians covered by HMOs, according to testimony at the hearing.
Good news! Great news as a matter of fact. There must be a catch.
Blake sat at the table and stared at the Popsicle sticks and glue. "You need to keep trying," Radford encouraged. "You can do this." But instead, Blake opted to sit and bounce on a large exercise ball, which he finds soothing.
The boys were among four children with varying degrees of autism in a morning camp Monday at the new McGee Autism Center. Seven more were coming in the afternoon. The challenging moment was just a sliver for Radford, who volunteers the more than 60 hours a week she spends preparing and leading classes at the center.
Overall, funding for human services took a 17.6 percent cut. The five state agencies whose responsibilities include providing services to people with physical, mental and other disabilities will receive about $53 billion in 2012 and 2013, down from $64.7 billion in the previous two-year state budget.
But some programs, such as community mental health services, emerged intact. Others, such as early childhood intervention, took big hits. And then there are the wild cards, like how funding shifts will play out for people with intellectual and developmental disabilities.
President Obama and congressional Democrats have been put in a tough spot by California Gov. Jerry Brown's (D) request to cut Medicaid spending 10 percent.
Brown says he needs to make the cuts to the state Medicaid program, known as Medi-Cal, to ease his state's severe budget woes. But advocates say cuts of that size would be devastating to California's most vulnerable residents.
Tuesday, July 19, 2011
TUCSON - Malcolm Turner is 6-years old and has autism. On Monday, Mr. Darcy, his golden Labrador retriever was certified as his Handi-Dog. The organization helps pair families with dogs and then trains the K-9 to assist a person with their disability.
Mr. Darcy has been with the Turner family since he was just eight weeks old. "People don't realize how much work it takes not just training the dog but training the child how to interact," said Jessica, Malcolm's mother.
Any little change in his pattern will set him off, said Sebastian's mother, Cindy Walker-Sklanka.
Walker-Sklanka knew for the past few years that something was wrong with Sebastian, but it wasn't until last May that she found out he had autism, a developmental disorder that affects his social and communication skills.
Stephen Wiltshire is an accomplished artist known around the world for his amazingly detailed panoramic landscapes, which sell for thousands of dollars. What makes his talent seem superhuman is that he needs to see the landscapes only once to reproduce the images from memory.
Wiltshire was late to develop speech. It wasn't until he was 5 years old that he spoke his first word: "paper." "Well, because I needed some paper to draw on, so I asked my teacher about it," he said. His second word was "pen." He's been drawing ever since.
Every few months, Jim Schmitt and his wife take their 14-year-old twin sons to a state-run respite center in Putnam for the weekend. He calls it a saving grace: It's the only time he and his wife spend together without their boys, who have autism and do not speak.
"You love your kids to death, but you wait for those weekends to be able to get away," Schmitt said.
Schmitt's sons were scheduled to go to the respite center Sept. 8, and he and his wife were thinking about taking a trip to Maine. But officials are planning to shut down the state's 10 respite centers by Sept. 5, part of a plan to cut $1.6 billion from the state budget. Closing the respite centers, which serve 1,100 families a year, is projected to save the state just under $8 million over two years.
Now, a similar bill for screening, diagnosis and evidence-based treatment awaits action by Gov. Andrew Cuomo after passage by the Legislature.
The Legal Center for People with Disabilities and Older People filed the complaint Monday with the department's Civil Rights Division, citing violations of federal laws governing the treatment of students with disabilities, including the Americans with Disabilities Act.
"Our allegation is that parents of kids with disabilities don't have an equal opportunity to benefit from the program," said Randy Chapman, the center's legal director. "The services offered by the private school partners are limited at best."
As evidence, the center submitted applications from the 19 private schools approved for participation in the pilot by Douglas County district leaders. They show some school officials readily admitting they do not serve all students.
The report released this week from AARP finds that the number of family caregivers is on the rise and more is being demanded of them.
FORT COLLINS, Colo. -- At 6-foot-5 and roughly 300 pounds, Justin Hansen physically is imposing.
Football opponents can't help but fear his size and strength.
Hansen, though, can't see their fear. He suffers from Asperger's syndrome, a form of autism that prevents him from reading the nonverbal cues that most of us take for granted.
People with Asperger's typically struggle to communicate and are socially awkward. Hansen, though, shows few outward signs of the disorder and, other than occasionally tapping his foot; he appeared focused and candid during a 30-minute interview last week outside the CSU football offices.
Monday, July 18, 2011
In particular, the district can't seem to get a handle on evaluating and re-evaluating students identified as having disabilities, a problem that is more than a decade old.
(The findings about each state are delayed by a year, so the most recent ratings of whether states are upholding the Individuals with Disabilities Education Act reflect the 2009-10 school year.)
Arguing violations of the Family and Medical Leave Act, Tomeka White filed suit against Texas Department of Aging and Disability Services on July 5 in the Eastern District of Texas, Tyler Division.
"So much of our time is focused on his schedule, his program," said Philippon.
The 3-year-old had been nonverbal up until recently, and he still avoids playing with others, even his older sister, who's 4.
"Patients with autism have primary deficits in terms of their social cognition, so they have a hard time developing strong trust bonds with other individuals," said Dr. Eric Hollander, director of the Compulsive, Impulsive and Autism Spectrum Disorder Program at Montefiore Medical Center in Bronx, N.Y.
The international reach of autism showed up in a distant corner of the globe earlier this year, as a small group of educators from Florida Tech traveled to Dubai in the United Arab Emirates.
South of the Persian Gulf on the Arabian Peninsula, Dubai has a high population of children with these pervasive developmental delays who receive treatment at home, but only up to school age, according to Florida Tech officials.
What to do afterward "is a big issue," said Mary Beth Kenkel, dean of Florida Tech's college of psychology and liberal arts, and one of four individuals on the recent trip. "They don't have a mandate as we do in the United States that every kid deserves an education."
BRADENTON, Fla. -- "Mr. Don" urges two distracted children to dip fingers into the bowl of flour-and-water paste between them.
They are supposed to be gluing newspaper strips to a balloon held by an adult, but have trouble seeing the point of the task and seem ready to spring away from the table at any moment. So Don Boulanger, a pediatric occupational therapist, gently herds eight young minds and bodies through the challenge of sitting still and making something together.
"I like how you're sticking with it," he says.
For most children, a lesson in social skills starts with "please" and "thank you." But for the quiet, watchful 7-to-14-year-olds who attend this weekly class at Children's Therapy Associates in Bradenton, it is more about taking turns on an obstacle course, making eye contact when tossing a ball and not shrinking from the touch of papier-mache or another child's hand.
In place of an unwieldy and expensive device with buttons that his son struggled to press, Conley developed a series of apps that allow the now 3-year-old Pierce to signal words and sentences by lightly touching a series of familiar pictures on an iPad screen, which prompts an audio program to play the words out loud.
Conley's line of "TapSpeak" programs are among scores of new apps available to help children with autism or other conditions that interfere with their ability to speak, learn or socialize.
Some of the cuts include reductions to the Help Me Grow program, which provides developmental services for children from birth through age 3, reductions in subsidies to county boards of developmental disabilities, and education cuts that will impact special-education programs.
PARIS, Ky. -- Many Kentuckians might think of Goodwill as bargain shopping or a way to reduce their taxes. For the thrifty in the state, the land of leftovers is a treasure chest. But for the organization, those simple donations are a means to an end — employing more Kentuckians.
And those job opportunities have more than doubled so far in this fiscal year.
Since 1988, Goodwill's donated-goods program has helped provide employment for people with disabilities and disadvantages, said Roland Blahnik, president and CEO of the Kentucky affiliate since 1984. Since that time, Goodwill has seen its stores leap from just two statewide to 59 today.
Sunday, July 17, 2011
BORDENTOWN, Pa. -- The concept of including special education students in regular classes spans many disabilities and several schools of thought.
The goals are noble, if challenging: to leave behind old stereotypes, to meet federal No Child Left Behind targets, and to markedly enhance a special needs child's educational experience.
For special education leaders like Louise Sullivan, director of special services for the Bordentown Regional School District, making a difference in a disabled child's life is a never-ending quest, filled with heartwarming stories and fraught with cold, bottom-line numbers.
But critics say vaccines cause more harm than good. Vaccinations can have dangerous physical side effects, they add.
Such conflicting messages can create a dilemma for parents as they wonder what to believe.
A national survey released in June of 376 households found that 80 percent of parents are uncomfortable getting their children vaccinated. Still, 95 percent said they would get the vaccinations.
Leslie Toldo has the story of some determined moms and a camp director who are changing that.
It's called "Power Camp: Peer Outreach with Exceptional Results." It is in fact that, and then some.
Camp Copneconic in July looks like a typical day at camp, but this is something different, something magical.
But the sensory motor exercises done here add to what operators say are a full program that addresses difficulties created by an imbalance of the connections between the two sides of the brain.
"This was more of a comprehensive approach," Joe Schneider, owner of the Delaware County Brain Balance Center, said.
Saturday, July 16, 2011
"Pets are embedded in the soul of our humanity," says Dr. Edward Creagan, an oncologist at the Mayo Clinic in Rochester, Minn., as he describes the special fondness and respect he has for a certain other member of the clinic's staff.
That would be Dr. Jack, a 10-year-old miniature pinscher who sees about eight to 10 patients a day — sometimes he goes for a walk with them, sometimes he gives them five and sometimes he just curls up next to them so they can catch some z's together.
Dr. Jack is a therapy dog, just one class in the corps of canine healthcare "professionals" known as assistance dogs. And, like service dogs (which assist individuals with disabilities), therapy dogs are put to work more and more these days.
Haslam said after a ribbon-cutting event in at Tims Ford State Park on Thursday that the group homes save money while still delivering personalized services.
Great article by René Craft in the Austin-Statemen
AUSTIN, Texas -- Before I became a parent, I spent most of my free time traveling, visiting 20 countries in 15 years, with monthlong trips to Asia, the South Pacific, Europe and Central America.
When my husband and I had our son, Jackson, I couldn't wait to share travel with him. But our son was not a natural-born traveler; even short trips to see the grandparents were challenging. Around the age of 4, Jackson was diagnosed with autism, and I finally had an answer on why he hated leaving our house.
Susan Moffitt is on target in her article from the Autism Key blog.
A recent article decrying the fact that Mississippi requires no autism training for its special education teachers struck me as hardly newsworthy. The reality is that special education teacher requirements vary drastically from state-to-state and when it comes to autism, they are abysmal. As far as I could tell from my research (and I would love to be wrong), only six states in the entire country require teachers who are responsible for educating children with autism to know anything about it. Michigan led the way in the early 80′s, followed by Delaware, West Virginia, Nevada, Florida and California. Florida and California’s autism endorsement requirements will be fully effective in 2011.
Facilities scattered around the world offer various forms of dolphin-assisted therapy for people with mental and physical ailments. Essentially, it's an expensive opportunity to swim with dolphins. Parents of children with severe autism, Down syndrome, cerebral palsy or other disabilities spend thousands of dollars on such dolphin-based treatments in hopes that the animals can reach their kids in ways that psychiatrists, physical therapists or medications never could.
Friday, July 15, 2011
GLEN ELLYN, Il. -- As the mother of a daughter with autism, Lisa Kelly was tired of going to play centers where other kids stared or were pulled away by their parents.
She's had plenty of days where she's been in a foul mood, her daughter's cranky and she's wanted to get out of the house.
Kelly wanted a place where her daughter could be around other kids just like her and she could find support from other parents — so she created that place herself.
SNELLVILLE, Ga. — As in many years past, a very special event will kick off the 2011 Gwinnett County Swim League Championships today at the Georgia Tech Aquatic Center.
It's called the Spirit of the League, and it's a 50-yard freestyle event that allows swimmers with special needs to compete and achieve.
Perhaps no participant personifies the Spirit of the League event more than Charles Lindsay.
Diagnosed as having autism with severe language impairment at age 2, the 16-year-old has had plenty of obstacles to overcome in his young life.
As Lugnegard, Hallerback, and Gillberg report, much less research has been published for adult patients of normal intelligence dealing with autism spectrum disorders and Asperger Syndrome (AS). They conducted a study of 54 willing adults with a clinical diagnosis of AS. About half were women. Their report details the varied clinical backgrounds of these participants who averaged the age of 27. Interestingly, 52% of the group received their AS diagnosis in their late teens or later.
New Jersey and the federal government have been fighting over $50 million for so long that the battle hinges on medical records that date to the Whitman administration.
Now, after years of waiting and wrangling, one of the last briefs is due Friday, and a federal judge is expected to weigh in soon afterward.
Under federal law, school districts providing services like speech therapy, physical therapy and psychological counseling to disabled students can get part of their costs reimbursed by Medicaid.
But the law requires them to save every last scrap of paper — prescriptions, transportation logs, students’ files — and federal auditors and lawyers say New Jersey has not furnished all those documents in 105 of 150 randomly selected billings from 1998 to 2001. They then extrapolated the results to all school districts and arrived at $50 million.
However, for students who receive special education services under the Individuals with Disabilities Education Act and Pennsylvania's Early Intervention Services System Act, some of these students have their preschool placement funded by the agency that provides their special education services, typically the county intermediate unit, while others do not. Because Pennsylvania law is inconsistent and unclear on this issue, it is time for the Legislature to provide clear guidance both in the statute and in funding.
BRISTOL HILLS, N.Y. -- For families who have kids with autism, every day can be challenge. But this summer, those kids are getting a chance to experience something they may have never even dreamed about -- attending summer camp alongside their non-autistic peers.
Ontario ARC has teamed up with the Bristol Hills 4H camp to make this happen. It's the first time they're doing it and there's nothing like it at any of the other 4H camps in New York State. Counselors say they're already starting to see improvements in their autistic campers.
"I think that's every parent's nightmare whose child is autistic," Young said. "They're vulnerable, they're very easy prey."
Her son, Garret Young, now 18, has wandered off before, once finding his way into the creek on a vacant 27-acre farm when the family lived in New Jersey. Recently, he wandered away and was found hiding behind patio furniture at a local department store when he was out shopping with his mother.
Though neighbors will call Young to tell her if Garret is walking down the street or has found his way into their kitchen, she now has another tool to reassure her — the Rapid Return program run by the Howard County Police Department.
Of the groups who emerged from the New York punk scene in the late 70s, Talking Heads have remained one of the most enduringly influential. The past decade has witnessed scores of bands taking their awkward punk-funk sound and ripping it off wholesale.
The renewal of interest in the band's music has been matched by calls for Talking Heads to reform.
Thursday, July 14, 2011
The genetic roots of autism may reach further in families than previously thought, according to new research.
In a study published in the journal Translational Psychiatry, scientists at the University of Cambridge report that even the unaffected siblings of autistic children show signs of brain differences that set them apart from children in non-autistic families.
The announcement that Blue Shield will pay for behavioral therapies for autism treatment - a step that other providers may soon follow - was made Wednesday during a hearing at the Capitol.
"Gov. Christie's cuts hit working class New Jerseyans hard across the board, but his cuts to vital programs for children are among the harshest anyone has ever seen," said Assembly Budget Chairman Lou Greenwald (D-Camden). "The impact of these cuts demand immediate attention, and we're committed to trying to find a way to make sure these programs continue to serve children suffering through horrific cases of abuse, illness and poverty."
And advocates say they’re ready to band together and contact legislators about the benefits they say the state could realize if more institutions are closed.
Filling out a quick questionnaire in your pediatrician's waiting room, could help determine if your child has autism.
Researchers say the infant-toddler checklist can help kids who have it, and other development disabilities get on track for treatment much earlier than the norm. And that could make a big difference as they grow.
Wednesday, July 13, 2011
Tuesday, Gov. Jay Nixon sign House Bills 555 and 648 which, among other things, replace the pejorative term "retardation" with the "intellectual disability." The new laws also promote awareness and increase public accessibility standards for people with disabilities.
NASHVILLE, Tenn. -- A group of 39 disabled Tennesseans filed suit against the state over cuts to medical assistance they say will force them away from their families and into group care homes.
The lawsuit, filed by plaintiffs from Nashville, Madison, Brentwood, Franklin, Murfreesboro, Mt. Juliet, Goodlettsville and other cities across the state, seeks to block cuts to the state’s in-home nursing and personal assistance services.
The suit was filed by the Legal Aid Society on behalf of People First, a nonprofit group that advocates for people with disabilities, and asserts the state is violating the Americans with Disabilities Act, among other federal safeguards.
Tuesday, July 12, 2011
The service enables citizens to give information about individuals with special needs in their residence. The Bonnie Brae fire involved several mentally disabled people living in a group home. Firefighters had no way of accessing that information.
The new program aims to resolve that. Within the next week, residents will receive a questionnaire with their water bill. Residents can disclose any special needs information they deem may be helpful to emergency first responders. That information will then be placed in a database that will be accessed whenever fire, police or ambulance personnel are dispatched to that address.