Faiths learn to include autistic children
February 5, 2009
CALDWELL, N.J. — Religious congregations in North Jersey should take steps to include people with autism and other developmental disabilities in their worship and activities — even if they can’t say “amen,” participants at a conference recently were told.
The Caldwell College program was intended to teach participants how churches and synagogues can become more welcoming to people whose behavior, communication and social skills are outside the norm.
“It’s not just that we want little kids with autism to learn to sit quietly so they can go to church with the rest of us,” said Mary Beth Walsh, an adjunct professor of theology and the mother of a boy with autism. “We want our faith communities to take the vanguard in showing how inclusion works.”
The program drew about 50 people to the Catholic college, a leader in training educators in applied behavioral analysis, the only scientifically proven method for teaching children with autism.
One in 94 children born in New Jersey is diagnosed with autism, according to the federal Centers for Disease Control and Prevention. More than 150,000 people in the state have developmental disabilities.
“Here’s a huge group of people who are out there, waiting to be included,” Walsh said.
She described how, during the course of three years, she gradually introduced her son to church services and to participation in religious instruction classes. He learned that the bread of Communion is special. He practiced walking with his peers from the back of the church to the front to receive his first Communion. He was proud of those achievements, and looks forward to attending religious instruction classes, she said.But parents said it is often hard to find a religious home.
While 36 percent of families with typically developing children have a “strong affiliation” with their faith community, only 19 percent of those with children on the autism spectrum say they do, according to a recent survey cited by Walsh.
One mother said that when she started bringing her son to church, she was “broken inside,” from the pain of the diagnosis and the daily struggles she faced. But as people in the pews in front of her turned to stare when her son made noise, she felt rejected.
For Catholics, as for most religious traditions, “embracing people with disabilities is part of all our missions,” said Anne Masters, director of pastoral ministry with persons with disabilities for the Roman Catholic Archdiocese of Newark.
“It is part of our teachings,” she said. “We just have to learn to do it.”
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Event Aims to Provide Families with Autism “Evening of Hope”
February 5, 2009
One in every 150 children is diagnosed with autism. The Autism Coalition of Nevada (ACON) is hoping to help the families affected by the disease find hope.
ACON is partnering with the Lovaas Center and the Washoe County School District to present the Evening of Hope event on Thur., Feb. 5.
Staff from the Lovaas Center will discuss their treatment model using applied behavior analysis (ABA) and why it has proven to be so effective.
The event is free and open to the public from 5:30 to 8:30p.m. at Miguel Sepulveda Elementary School in Sparks.
Call 830-8063 to RSVP.
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Father Urges Insurance Coverage for Autism
February 5, 2009
ST. PAUL — With a picture of his son at his side, Rochester resident Brad Trahan on Wednesday urged lawmakers to support a bill requiring health insurance companies to cover treatment for autism.
“For years, private insurance companies have failed our individuals diagnosed with autism, they have failed our moms and dads,” Trahan said.
The founder of the RT Autism Awareness Foundation traveled to St. Paul to speak in favor of a bill sponsored by Rochester Rep. Kim Norton. The Democrat has introduced a measure that would require insurance companies to cover “medically necessary care” for autism spectrum disorders.
“This bill is asking you to acknowledge the health care needs of our children with autism and to put into law the language that will assure that our families have access to the medically recommended and proven early-intervention treatments that our families deserve,” Norton told members of the Health Care and Human Service Policy and Oversight Committee.
The bill won committee approval on a voice vote, but it still has plenty of hurdles to pass before it could become state law.
Autism diagnosis have grown significantly in recent years, with an estimated with 1 out of every 150 children having an autism disorder, according to the U.S. Centers for Disease Control and Prevention.
Parents of children with autism testified that while some insurance companies like Blue Cross Blue Shield cover intense autism therapies geared towards young children, other private insurers have not. Trahan told the committee he had to fight to get these 20 to 30 hours of treatment per weekend that Mayo Clinic doctors had recommended for his son Reece.
But Kathryn Kmit, a lobbyist for the Minnesota Council of Health Plans, told lawmakers that this intensive treatment is extremely costly and there needs to be more scientific evidence of its effectiveness. She said it can cost up to $100,000 per child per year.
Also speaking out against the bill were organizations that represent businesses. Stacia Smith, a lobbyist with the Minnesota Chamber of Commerce, said these types of mandates on insurance hurt small- and medium-sized businesses that are already struggling to provide health care to their employees.
“We urge this committee to focus on reforms that will make health care more affordable and not to increase mandates and regulations that will drive up costs,” Smith said.
But supporters say there is plenty of scientific evidence demonstrating the effectiveness of these intensive therapies.
“What is so frustrating for us is that families receive what is basically a devastating diagnosis. There is a therapy that is out there that has been shown to be effective, we recommend this therapy and then the parents can’t access it,” said Dr. Robin Rumsey, a pediatric neuropsychologist with the University of Minnesota.
Trahan said since his son Reece began receiving intensive treatment, he has watched his son make steady progress.
He told lawmakers, “By passing this legislation, you will give our kids the hope they deserve and the therapy they deserve.”
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Guilt, Misconceptions, and the Astonishing Costs of Autism Therapy
February 5, 2009
The CNN program “Autism 911″ highlighted a program called Crisis RESQ: Restoring Everyone’s Sanity Quickly, offered by an organization called Autism Partnership. Here, from their website, is the ad for their RESQ services:
When the usual advice for parents is not enough, Autism Partnership can help!The experts at Autism Partnership have been helping families manage extreme behaviors for over 30 years! We work with children, adolescents and adults. We provide critical assistance when parents are at their breaking point.
We assess the situation, provide practical solutions and coach parents on the spot to quickly resolve the crisis . We bring tranquility back to the home. Most importantly, parents are taught critical skills for on-going success after the expert leaves.
In essence, then, Autism Partners offers a specialized brand of Super Nanny intervention. And, like Super Nanny, they’re good at what they do. They assess the situation, develop a set of rules to live by, teach everyone how to live with those rules, and then – they leave. Super Nanny returns a week later to check in; it’s not clear from the website whether that service is included in the RESQ plan.
The cost for RESQ is approximately $2,500 a day. Insurance is not accepted.
Autism Partnership is by no means the only organization charging a great deal of money for autism-related services. Nor are they the only group who don’t accept insurance for their services. In fact, the media is filled with stories of families whose life savings have gone into reputable therapies (like RESQ) or not-so-reputable therapies. Not a few of these families have literally gone bankrupt paying for autism services.
Why do families pay so much out of pocket? There are a lot of reasons, some of which include rotten school services, lack of insurance, or lousy state programs. But a lot of families choose to go bankrupt for very different reasons. For example:
Guilt. Many parents believe that they actually caused or failed to prevent their child’s autism by allowing vaccinations, eating tuna, using cell phones, watching too much TV. Other parents are pushed into guilt by “mother warriors” who “can’t believe” that a parent would stop at anything – or any cost – to treat their child’s autism.
Misconceptions. I’ve heard the argument “pay now or pay later.” The implication is that programs like RESQ really do “rescue” a child from autism. But of course neither Autism Partnership nor any other reputable therapist would suggest that behavioral therapy, at great cost today, will ensure a child’s productive future. And in fact a program like RESQ is really crisis intervention – not a long-term solution.
Everyone makes that much. Yes, there are people in the world who charge thousands a day for medical or consulting services. But almost across the board, those people are billing third parties institutions for the vast majority of their costs. In the case of autism, it’s individual, middle class families who are shelling out half their annual income to “rescue” their child.
That’s what the service is worth. If we paid people for what they were worth, I’d buy that argument. After all, therapists do do important work; and your child is tremendously important. But you know what? Teachers educate your children. And if they asked for $2500 a day they’d be laughed out of town. The same goes for clergy; for police and fire fighters; for soldiers and marines. Are their services worth so little? Or are families being vastly overcharged? I’d say the latter.
Bottom line, I certainly have nothing personal against the folks at Autism Partnership. But I stand by my statement that there is no sane reason why families should lose their life savings to care for a child with autism.
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Toys’R'Us, Inc. Expands Its Support of Autism Speaks
February 5, 2009
Babies”R”Us Stores Join Toys”R”Us in Sponsoring National Walk Program and In-Store Fundraising Campaign
WAYNE, N.J., Feb. 5 /PRNewswire/ — Toys”R”Us, Inc. and the Toys”R”Us Children’s Fund today announced they have increased their support of Autism Speaks, an organization dedicated to funding global biomedical research for autism and raising public awareness about the disorder and its effects on individuals, families and society.
This year, the company’s more than 260 Babies”R”Us locations nationwide will join Toys”R”Us stores in a nine-week in-store fundraising campaign to coincide with Autism Awareness Month in April. In 2008, Toys”R”Us stores raised $1.5 million to support crucial autism research and advocacy.
For the third consecutive year, Toys”R”Us, Inc. employees nationwide will participate in the Autism Speaks Walk Now for Autism program, a series of more than 75 fundraising walk events held in communities across the country. To kick off the 2009 partnership, including national sponsorship of the walk program, the Toys”R”Us Children’s Fund awarded Autism Speaks a $400,000 grant. Since the partnership began in 2007, the Toys”R”Us Children’s Fund, Toys”R”Us, Inc. and customer donations have combined to provide Autism Speaks with more than $3.7 million.
“As a company dedicated to children and families, we are proud to have both our Toys”R”Us and Babies”R”Us stores support Autism Speaks this year,” said Jerry Storch, Chairman and CEO, Toys”R”Us, Inc. “With so many children affected by autism spectrum disorders and still very little known about any causes or cures, we are hopeful our fundraising and awareness campaign can contribute to solving the autism puzzle.”
“Our partnership with Toys”R”Us, Inc. continues to help raise both awareness for autism spectrum disorders and money for important research and advocacy, and we are thrilled to have Babies”R”Us stores participating in the campaign this year,” said Mark Roithmayr, President of Autism Speaks. “Experts advocate screening for autism twice by the age of two, so we are grateful for the opportunity to reach parents of babies and toddlers and educate them on this new research. Early detection and intervention are key to a better quality of life for children with autism and their families.”
Autism Speaks Walk Now for Autism Events
Toys”R”Us and Babies”R”Us employees nationwide will participate in more than 75 fundraising walk events in cities coast-to-coast by forming walk teams in their local communities as part of the 2009 national sponsorship of this program. Beginning this month and continuing through November, this series of signature fundraising and awareness events is expected to attract thousands of participants and provide families, friends and professional caregivers an opportunity to contribute to, and show support for, the fight against autism. Last year, Autism Speaks raised more than $29.3 million through its Walk Now for Autism events. The complete schedule of Autism Speaks Walk Now for Autism events can be found at www.autismspeaks.org.
In-Store Fundraising Campaign
From Sunday, March 1 through Friday, May 1, to coincide with Autism Awareness Month in April, more than 800 “R”Us stores across the country will collect cash donations in an effort to help solve the autism puzzle. Donations also will be accepted through the company’s dedicated Autism Speaks microsite, www.Toysrus.com/AutismSpeaks. The campaign will be supported with an aggressive marketing program, inclusive of in-store signage and advertising, in an effort to raise awareness among customers and employees alike.
All money raised during the campaign will go directly to Autism Speaks to fund important autism research programs and help provide a voice for children affected by the disorder. With 67 children diagnosed with autism each day, the disorder is more common than pediatric cancer, diabetes and AIDS combined. Autism spectrum disorders are characterized by varying degrees of impairment in communication skills and social abilities, and also by repetitive behaviors.
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Autism Help Bill Offers Financial Comfort
February 5, 2009
LA CROSSE, Wisconsin (WXOW) – For the Mason family, autism is something they live with everyday.
Jessie Mason says, “It’s been a long struggle. It’s been hard. He still is the beautiful, bouncing boy I wanted, but some of my hopes have been changed around.”
The disorder has put some strain on the Viroqua family emotionally and financially.
Representative Jennifer Shilling says she’s heard many stories similar to the Mason’s.
Shilling says, “Husbands and wives have had to make a tough decision. If they can’t afford treatment, it’s typically a mother or father who will becomes trained in this
treatment.”
Shilling says this bill will ease the financial pain families like the Mason’s face and make early intervention more of an option.
Advanced Senior Therapist with Wisconsin Early Autism Project John Nicklay says, “All the research out there shows that earlier the intervention begins for autism, the more
successful those treatment will become. If you allow the child to sit two, three years, they become locked deep into their autistic world.”
The bill will require individual and group health insurance polices and plans to cover the cost of treatment for insured person with autism.
It would raise prices on premiums.
Shilling says, “We’re running numbers to see what the would be. Early numbers we’re seeing is couple dollars a month on an insurance premium.”
But, Schilling says by paying a little now, taxpayers may save money in the long run.
Shilling says, “It will help when they get into school year that they don’t have the special ed needs if we help on the front end with intervention. It helps save taxpayers
money down the road.”
Mason says, “We all know how crucial it is to start young so very important to get in that window, while you can it’s just so much easier.”
Supporters of the bill hope it is passed so families like the Masons can focus more on treatment for their children and not the cost.
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The Bishop Of London Supports Autism Sunday
February 5, 2009
The Bishop of London. Rt.Reverend Richard Chartres is supporting Autism Sunday – the International Day of Prayer for Autism and Asperger’s Syndrome. Cathedrals, Churches and religious organisations are remembering over 60 million people with autism and Asperger’s Syndrome in Prayer. Autism Sunday is also being used as a platform for lobbying and campaigning on the serious issues connected with autism and Asperger’s Syndrome. It is now an international day and many more places of worship are supporting Autism Sunday.
Rt.Reverend Richard Chartres has issued a special message to mark Autism Sunday 2009. The Bishop of London said: ‘Autism Sunday is a way of raising awareness of the impact of the relational and communication difficulties with this condition. It is also an opportunity to consider what we can do to support families and ease the isolation of those who experience Autism and Asperger’s Syndrome every day of their lives.’
The Bishop of London joins many key leaders supporting Autism Sunday. His Holiness Pope Benedict XVI has invoked God’s blessings of strength and peace on parents, carers,children and adults with autism and Asperger’s Syndrome.The Pope will be praying for families and people with autism and Asperger’s Syndrome on Autism Sunday. The pastor of one of the largest churches in the United States, Pastor Rick Warren of Saddleback Church in California hopes this year’s International Day of Prayer for Autism and Asperger’s Syndrome is a huge success. The Archibishop of York, Dr. John Sentamu has also sent his blessings.
Places of worship are using the song for autism, ‘Open Every Door,’ sung by the Asian superstar Gresha Schuilling and written by UK singer/songwriter Nimal Mendis as a point of reflection in services – the song is also being used in worldwide awareness raising events. ‘Open Every Door’ is about a child or young person with autism or Asperger’s Syndrome and has been released on iTunes.
Ivan Corea, Co-Founder of Autism Sunday said: ‘I am delighted that key leaders are supporting Autism Sunday. I urge World Leaders to speak out on Autism and Asperger’s Syndrome on Autism Sunday on 8th February. We are delighted to hear that many parents, carers, organisations and faith communities are using Autism Sunday to lobby and campaign hard on the key issues. We appeal to Britain’s Prime Minister Gordon Brown and Chancellor Alistair Darling to help and support families with autism and Asperger’s Syndrome in the 2009 budget. We have been campaigning for a real increase in tax credits, the disability living allowance and the carer’s allowance. 87 MPs in the House of Commons in the Palace of Westminster backed a motion on Autism and Poverty tabled by John Battle MP, Chair of the All Party Parliamentary Group on Poverty.50 MPs have signed a motion tabled by Rudi Vis MP on Autism and Winter Fuel Poverty. We have called for a special social tariff for families with disabilities who are struggling to cope with rising energy bills. The credit crunch and the deepening recession is affecting us all and families and people with autism and Asperger’s Syndrome need urgent help and support from Her Majesty’s Government.’
Autism campaigners have called on the Prime Minister Gordon Brown to stop the re-possessions of homes belonging to families with autism.
Parliamentarians and dignitaries are joining parents, carers, children and adults with autism and Asperger’s Syndrome at an Autism Sunday Service at All Saint’s Church in Woodford Wells in the London Borough of Redbridge.
Autism Sunday – the International Day of Prayer for Autism and Asperger’s Syndrome was launched by parents and carers Ivan and Charika Corea, they have a 13 year old son, Charin who has autism. He has been the inspiration behind their campaign – in 2000 they initiated the Autism Awareness Campaign UK and launched the UK Autism Foundation in 2008. Autism Sunday was launched in 2002 Autism Awareness Year with a historic service at St.Paul’s Cathedral in London in the United Kingdom. Since then many more Cathedrals, churches and religious organisations have been observing this international day. Organisations are also planning awareness raising events across many nations marking Autism Sunday.
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Autism Mandate put on the Back Burner
February 5, 2009
Gov. Brad Henry’s State of the State speech for Oklahoma offered its biggest applause lines as the biscuits in a sandwich whose sausage was the autism mandate. This was a free Grand Slam breakfast for Henry because he knew a Republican Legislature was unlikely to send him a mandate bill.
A House committee wasted no time defeating the mandate and declaring it dead for the next two years. The early vote was smart because it dealt quickly with a sizzling issue rather than let it stay on the griddle for week after week.
That’s what happened last year. Mandate supporters — mostly parents of autistic children and therefore unlikely to be objective — aren’t finished. Sen. Jay Paul Gumm, D-Durant, the short-order cook who served up this issue in 2008, said the GOP stance is a recipe for a political scorching.
“I think that’s a serious miscalculation on their part,” Gumm declared. “These families aren’t going away.”
If taking a rational view of the mandate is politically unappetizing, then why did Republicans increase their strength in the Legislature in 2008?
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Autism Doesn’t Slow this Trio
February 5, 2009
When Brian Beitzel, Danny Berg and Charlie Permint are swimming laps during practice, they look just like every other athlete on the Cape Henlopen High School swim team.
And that’s how coach Bill Geppert likes it.
The trio has been diagnosed with Autism Spectrum Disorder, a neurological disorder that impairs a person’s ability to communicate and form relationships. Still, the three have managed to find a passion for swimming, and the team has welcomed them with open arms.
“It’s just been a wonderful experience for all of us,” Geppert said. “Not just for myself and my coaches, but also for the kids on the team. It brings me back down to earth and reminds me why I coach. It’s not about wins or losses, it’s about winning in the game of life. And I think we are all better people for having these guys on the team.”
Beitzel, Berg and Permint each have limitations as to what they can and cannot do in the pool. But since they’ve started, each has grown as a swimmer, Geppert said.
“We have to do different things with them,” said freshman John Merz. “Most of the time we help them out of the pool and make sure they know what they are doing. It’s great for them and great for the team. It really benefits everybody.”
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Autism Salute’s Angela Warner to First Lady Michelle Obama
February 5, 2009
Dear First Lady Michelle Obama,
On January 20, 2009, President Elect Obama was sworn in as our great nations 44th President and you as our First Lady. As I watched the events of the day unfold, and with each passing moment, I became more filled with hope and renewed faith that there will be much needed change in the direction of our country. I was glued to the TV when watching The Neighborhood Inaugural Ball. Tears began streaming down my face when you and your husband began your first dance as President and First Lady. My husband and I dance to Etta James’ “At Last” in our kitchen all the time.
As a proud Air Force spouse, I was still glued to the TV during the Commander in Chief Inaugural Ball, and words will not do justice to the feelings I experienced when I heard you, yet again, voice your desire to support our military families.
Thousands of our families are in crisis, and we desperately need your help. While many aspects of our lives are unique to military service; one thing is not, and that is the autism epidemic. Not only am I a proud Air Force spouse; I’m the mother of four young children, two of whom have autism.
Autism does not discriminate, and is not unique to the military, nor are the lifestyle changes and huge financial challenges that come with raising and medically treating our children with autism. While it is a big one, the only exception is preparing for and living through continual deployments and temporary duty assignments. That said, in the civilian community there are countless parents who travel frequently for work. Our families and children, who make up the autism community, as a whole, do not have the support our families need nor do we have the coverage of treatment our children with autism require. I am positive you can understand some of the challenges our families face on a daily basis. There is much work that has to be done.
Autism is a physiological disorder affecting multiple body systems which impacts neurological functioning. When the physiological disease states our children suffer from are treated, they are then able, neurologically, to acquire necessary life skills imparted through behavior intervention modalities, and benefit and recover. Every child with autism is different, and has sustained differing physiological damage to their body systems in a different way leading to their neurological impairment. Each child requires a different treatment protocol designed specifically for them.
The CDC has a prevalence rate of autism occurring in 1 in 150 children based on selective data from 2000 and 2002. If you look to the Department of Education and look at population instead of prevalence, you will find that for the 2006-2007 school year data shows that 1 in 67 children have autism. In the military looking at population data, you will see that at least 1 in every 57 military dependent children of active duty members has autism.
I am very aware that Senator Durbin and President Obama drafted the “Autism Treatment Acceleration Act of 2008” (ATAA2008), while your husband was still in the position of U.S. Senator for Illinois. The autism epidemic commands consensus language for this Bill that Senator Durbin and your husband planned to introduce. The American Academy of Pediatrics and the American Medical Association are not on the front lines of treating and recovering children with autism. Our long standing autism organizations, researchers, and doctors who are putting the pieces of the autism puzzle together are on the front lines. They are the “troops” who are fighting, and winning against autism, for our children and our future.
As the mother of two boys with autism, I know what I’ve done for my children versus what my American Academy of Pediatrics pediatrician recommended. Her recommendation, which I followed, landed my younger son at age 4 in the children’s psychiatric ward for 11 days. Her recommendations were discontinued 3 years ago, and she has since been “fired” for numerous reasons including that mentioned above. Her plan was not patient centered. Her care, of our children, was not individualized and specific to our children. Our plan for our children, based on research and input from those at long standing autism organizations, has led to recovery. Our youngest son will most likely be completely mainstreamed, educationally speaking, next year.
Our military children do receive some coverage for the treatment of autism, but it is covered as a “special education” benefit under TRICARE (military healthcare coverage), and United States Code 1079. Less than 10% of our children are receiving this benefit due to the failures of TRICARE, and essentially a failure of our Department of Defense.
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