Akron Student with ASD Gets $100k Accomodation

Parents Win Appeal

State Impact is reporting the Akron School Board ok'd a one year accommodation to send a student with Autism Spectrum Disorder to the Monarch School in Cleveland.

Public school pays $101,972 to send Akron student to private school in Cleveland 

The Monarch Center for Autism provides a comprehensive living and learning environment for children and adolescents with Autism Spectrum Disorder (ASD). According to their website, Monarch School and Monarch Boarding Academy are grounded in a language-based treatment Model that is respectful, empowering and kind. The price of a year at the school exceeds $81k which puts it out of reach for most parents. Affordable treatment, therapy and educational accommodations is out of reach for many parents. The average spent by school districts nationwide to educate children with ASD is around $17k per child.

Accommodation Outside the Norm

Schools in Ohio generally give parents $20,000 a year if they want to take their children with Autism out of public school to help with costs. In this case, the parents appealed. The Akron district settled. Assistant Superintendent Ellen McWilliams told the Akron Beacon Journal., “You have to look at whether it’s good to continue fighting or not.” She says that in most cases, the schools are equipped to meet the needs of special needs children.

The accommodation is for one year, but could be renewed until the child ages out of the school system at age 22.

Why We Give

WIIFM – There’s got to be more

According to an article in Christianity Today by Bruce Wydick, most of us are motivated to give out of a sense of reciprocity. We give because we hope to get something back.  The article points out, “reciprocity is embedded in the cultures of much of the poor world today. James Scott at Yale and other anthropologists have demonstrated how the poor in developing countries use reciprocal acts of generosity as survival mechanisms, providing, for example, informal insurance. A family bringing food to another who is temporarily unable to work due to illness is not only regarded as kind; the act represents an investment in a reciprocal claim when the situation may be reversed.”

Jesus wants us to give to serve the greater good without the expectation that we will get something back. Our reward comes much later.  Then Jesus said to his host [a prominent Pharisee], "When you give a luncheon or dinner, do not invite your friends, your brothers, your relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, and the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous." (Luke 14:12-14, NIV). 

Thoughtful Giving – Generous Souls

The Charities Aid Foundation (CAF) of Great Britain recently asked 700 of their regular donors their motivations for their generosity. They asked why they gave and what could grow giving in the UK. Personal values, sense of morality, belief in a specific cause, and faith all scored above 70% as a motivator. Growing the ranks of givers depends on effectively communicating outcomes.  More than eight out of 10 (81%) said that more hard evidence on the impact of charities’ work would be likely to increase giving significantly. This underlines an appetite for a yet greater level of communication between donor and cause, and more transparency in the ways charities work.

The second most common response was that companies need to do more to support charities, with 78% agreeing with this statement. Tax also plays a key role. Three quarters (77%) of those they surveyed thought it was likely that if donors had a better understanding of existing tax incentives it would increase giving significantly, and a similar proportion (76%) said that they would welcome more generous tax breaks.

Faith plays a significant role (Response to the GAF Poll)

“My faith informs my giving and when I give regularly to the church it is nice to know that I am contributing towards a church project or towards paying the salary of one of its workers. I think as a society to some extent we don’t value giving enough, but it is encouraging being in a church where you can clearly see the generosity of other congregation members.”     AJ Finch  - Charities Aid Foundation (CAF) “Why We Give”

“Our giving is based on the belief that everything we have belongs to God and that we should give back both to the church and those in need.”     Amy Bright - Charities Aid Foundation (CAF) “Why We Give”

“I have always known that we are very privileged compared with many other people and, as a Christian, I think that all gifts come from God and to God we return them. They are not ours, they are given to us by God – whether it’s the brains, opportunities or health to earn the money, or the inherited wealth. I would encourage anyone who doesn’t give to think about those who are less fortunate than themselves.”     Charm Robson - Charities Aid Foundation (CAF) “Why We Give”

“Stories help. The stories of the improvements that are made on the international front through quite small changes, the story of a guy I was mentoring last year who now has a job, stories from Jamaica, where we’re funding two development projects. Telling people stories I think helps. When you’re dealing with international development you can create a very, very great impact with a very little input.”      Keith Stephenson - Charities Aid Foundation (CAF) “Why We Give”

Top Motivators    

They give because of their personal values and beliefs, lifestyle, morality, ethics, belief in a specific cause, faith and personal experience. Much further down the list are determination to leave a positive legacy, and relationships forged through giving. Family and enjoyment from giving had a middling response.

Hiring Autism

Disappointing Statistics

• The Journal of the American Academy of Child and Adolescent Psychiatry found  that only half (53%) of young adults with an ASD had ever worked for pay outside the home in the first 8 years following high school, the lowest rate among disability groups even when controlling for impairment severity, household income, and social demographics.
• The same study found only 34% were employed at the time of the survey interview.
• And one in five worked full-time with average earnings of $8.10/hour, significantly lower than disability comparison groups. (The Journal of the American Academy of Child and Adolescent Psychiatry)

Despite the disparities, there are some gains. Some companies are seeking out mostly high functioning individuals with Autism Spectrum Disorders (ASD). The numbers are small when you consider about 50,000 young adults age out of the support system each year. Much more needs to be done to support these gifted individuals.

  Some See the Light

There are some companies that are going out of there way to hire those with ASD. Below are some examples.

SAP Labs announced they will hire 60 persons with ASD as part of their initiative to employ one percent of their workforce with Autism Spectrum Disorders. Headquartered in Walldorf, Germany, with locations in more than 130 countries, SAP SE calls itself a world leader in enterprise software and software-related services.

 Extraordinary Ventures employs young men and women with autism and other developmental disabilities. They create jobs and fund our programs through our space rental business as well as laundry services and other ventures. Based in the university town of Chapel Hill, NC, Extraordinary Ventures, Inc. (EV) is a 501(c) (3) non-profit organization that creates and nurtures self-sustaining small businesses designed around the skills of the young adults with autism and developmental disabilities that serve as its workforce.

Some with ASD are entrepreneurs. Temple Grandin, a well-known Autism advocate says, "autistic people can become business owners if they're allowed to develop interests that can be turned into a living." Grandin has a business designing systems to handle livestock. She became interested in animals working on a farm in her teens.

  Ultra Testing almost exclusively hires employees who are on the autism spectrum. ULTRA provides a full suite   of manual testing services for websites, digital campaigns, mobile applications and enterprise solutions. According the Ultra's website, over a third of the ASD population, approximately 500,000 adults, have Asperger Syndrome or similar ASD profiles, have completed high school and/or college, and can have heightened abilities including those required to be an exceptional software tester, e.g. pattern recognition, focus, attention to detail, tolerance for repetition. However, due to a combination of factors including difficulties with social interactions and interpersonal communications, 80% of this population are currently not employed. Using cutting-edge tools, specialized training and customized workflows, ULTRA is unlocking the potential of this vast, untapped talent pool, and in doing so, bringing excellence to the software testing industry.

ASD Teen Wins Jeopardy Playoff!

Jeff Xie is the new teen champion for Jeopardy. He did it in a first ever tie-breaker for the tournament.

Jeff will use his $75,000 prize for college and to do a little travel.

Autism Costs in Billions!

Autism Costs Billions 

$2.4 million per person    

Bloomberg.com shared research results last from the University of Pennsylvania and the London School of Economics and Political Science that look beyond age 18. Their findings confirm other research that lifetime costs for people on the Autism Spectrum can exceed over $2 million during the course of a lifetime. The majority of the costs are experienced in adult life.      

Special Services and Unemployment     

In the U.S., most of these costs were for services such as special education and residential care, while in the U.K. it was for services and lost employment by people with autism, according to the research paper. 

“While most of the cost is born by government in the form of special education, it’s also true that families bear costs as well,” said Paul Shattuck, who wrote an accompanying editorial. More studies are needed of adults with autism and better ways to join with businesses to hire more adults with special needs, Shattuck, an associate professor at Drexel University in Philadelphia, said in a telephone interview.

Total Costs are Eye Popping

The cost per year in the US is for children on t he Autism Specrtrum  are estimated to be $61 to $66 billion. The cost for adultswith Autism is estimated to be 175 billion to $196 billion. With improved diagnostic tools, the costs may go up even further. Some of these problems can be ameliorated through early diagnosis and behavioral therapies designed to improve learning, communication and social skills. FOCUS Center for Autism offers these services. There are others doing the same, but there is not nearly enough services avaialable to cover the growing need. More funding is needed to provide supports for children and adults with Autism Spectrum Disorders. 

Rep. Esty pictured with representatives from the 
FOCUS Center for Autism in Canton

There may be Relief        

Connecticut Congresswoman Elizabeth Esty (5th District) is urging Congress to pass the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES Act). In a letter to FOCUS Center for Autism Director Donna Swanson Esty says, “Talking with these families and hearing children and teens advocate for the services they need was empowering and inspired me to become more actively involved in the issue.” The act would  provide resources to continue research, increase awareness, and help improve the quality of life for our children and families.

The research was published in JAMA Pediatrics. Funding for the research was provided by Autism Speaks.     

Admiring Autism

Below is a blog I wrote for the FOCUS Center for Autism about a mother in the UK who started documenting her son's challanges and progress with autism. Sara Dunn's photos are celebritory and compelling. She is crowd funding to put on an exhibition next April.

Breaking Through Barriers/Dispelling Myths

A photographer from the United Kingdom is trying to bust some myths surrounding Autism Spectrum Disorders (ASD) through her photography. Sara Dunn’s quest began soon after her 23 month-old son was diagnosed with Autism. At first she started taking pictures to document the difficulties her son was having. She soon found there are many reasons for hope. Dunn is now photographing her son and other children diagnosed with ASD so people can gain a better understanding of what the ups and downs of life with an Autism Spectrum Disorder are like.

The first myth she broke was the belief by many that Autism does not exist. People were telling Dunn that these children were just behaving badly. She told reporter Tom Airey of BBC News, “Some people have said to me they don’t believe in autism, my son’s just a naughty child. I’ve been told autistic children don’t know how to love. They do.  Usually these children are having very complex sensory experiences and they’re in distress, with some adults perceiving it as misbehaving. It’s pretty scary.”

Awareness and Insight

The project may take on a much larger scale. Dunn is hoping to put her photos on display next year during Autism Awareness Month. So far, 15 families are participating in “Admiring Autism.” The UK’s The National Autistic Society has called it an “inspirational project”. Dunn is hoping to raise funds in support of her exhibition through crowd funding. She’s asking for funding through Patreon.  Dunn is also hoping to expand the scope of the exhibit to include older children and adults on the spectrum.

Find Out More

You can find out more by linking to Airey’s report: Admiring Autism: Busting ‘autism myths’ with a camera. There’s also a gallery of photos of Dunn and her son, Frank, available through the Chester Chronicle.  Mum’s project admires autism.

Eight Things You Should Know About Autism

Some Things You Should Know

Columnist Dan Tynan shares eight things you should know about Autism in YAHOO Tech in his article "Eight Things You Ought to Know About Autism (but might not)." Gaining understanding about Autism Spectrum Disorders (ASD) can be an uphill battle. As a fundraiser for FOCUS Center for Autism I've run into roadblocks. But, when we get a chance to speak about ASD and share the stories about the children we treat at the Extended Day Treatment Program, those barriers often come down. FOCUS Center for Autism is Tynan breaks down some of the barriers and challenges other long-held "truths."

Controversial Comments

Four of his comments are controversial. I happen to think that's a good thing. The comments will further the discussion and cause those of us in the autism community to dig deeper for answers.

It’s kind of a geek thing. 

The saying goes, "If you meet one person with Autism, you've met one person with Autism. To be sure, some of the kids are geeky. Some of them are not. It would be just as valid to say that some of us not on the spectrum are geeky. If you've ever been to the Spectrum Unplugged Panel you are going to find children and young adults who love writing poetry, a proficiency in math and science, a love of reading, an interest in comparative religion, creating comics, playing instruments and song-writing.

But it’s not an epidemic.

If you look at the strict definition of Epidemic, Tynan is right.  Epidemic; a widespread occurrence of an infectious disease in a community at a particular time. This definition would be more appropriate to measles and polio. It might be more appropriate to say diagnosis of ASD has reached epidemic proportions.

It is not caused by vaccines.

The original report linking the MMR Vacine to Autism published in the Lancet was found to be a fraud. Since then the independent Institute of Medicine concluded in August 2011 that the use of vaccines — particularly the measles mumps rubella (MMR) vaccine routinely given to children under the age of 6 — has no relationship to the rise in ASD cases. The American Academy of Pediatrics issued a similar report in April 2013.

It can’t be cured.

This is sure to cause controversy certain circles. Major fundraising efforts are based on finding a cure. Tynan explains, "In fact, some autism advocates bristle at the notion that ASD is a condition in need of a cure. Others in the ASD community are desperate for a solution to the daily struggles of their autistic offspring. But while autism isn't a disease that can be cured, it is a disorder that can be treated."

What FOCUS Does

FOCUS Center for Autism’s mission is to help children and young adults with Autism Spectrum Disorders achieve their full potential. Since becoming a nonprofit in 2000, FOCUS has developed a well-respected Milieu Therapy model of treatment that has now served over 600 children and families.
With an emphasis on planned environments (milieu), and relationship building, FOCUS helps address the many challenges children, and young adults with Autism Spectrum Disorders are confronted with every day.