Pope’s call to help the vulnerable turns to the autistic at Vatican conference

by Michelle Boorstein from The Washington Post:
57 countries will update one another on such issues as genetic research, pain management and government policies toward people with autism.
It will also begin with a Mass and a monsignor preaching on suffering and will include presentations on how the church can better include autistic people in the core aspects of Catholic life, such as the sacraments of confession and Holy Communion. It will end with an audience Saturday with Francis, an event advocates hope will significantly move the needle on awareness, particularly in Spanish-speaking countries.
Bob and Suzanne Wright, Catholics and co-founders of the major U.S. advocacy group Autism Speaks, will give a presentation at the conference.
“We speak at colleges and places like that, but they don’t reach large audiences,” said Bob Wright, former chairman of NBC/Universal and grandfather of a teenage boy with autism. “Then we started with the religious aspect, but the problem is there aren’t any leaders who have large numbers. Most religions are split up. We zeroed in on the pope, and this pope in particular, because he has such a gift for reaching out to people, and he wants the church to be more inclusive.”

Organizing any conference on autism — which affects one in every 68 children, according to Autism Speaks — is challenging because of the range of opposing views on such issues as the role of vaccines in autism spectrum disorder. The conference doesn’t appear to touch on vaccines but includes a presentation on other potential environmental impacts.

Saudi govt to bear cost of treating kids with autism and Down syndrome

by Saad Al-Qabousi from the Okaz/Saudi Gazette:
The Ministry of Social Affairs will bear the entire cost of treatment and rehabilitation of children with autism or Down syndrome at domestic care centers, an official source at the ministry has said.

The official, who did not want to be named, said in the past the ministry was bearing only half of the cost. He said: “There are about 6,000 children with severe disorders who are unable to benefit from education in the government or private schools.

“The ministry will pay the full cost of their rehabilitation in the special centers inside the Kingdom.”

The official made it clear that the ministry's offer will not include children who are taken for rehabilitation abroad.

“The ministry will bear the full cost of the rehabilitation of autistic and Down children in the day centers that are licensed,” he said.

Milford first responders get autism training

by Amanda Cuda from The CT Post:

MILFORD -- Jason Dorval showed a room full of Milford firefighters, police officers and paramedics a photo of his 10-year-old son, Connor, who has both Down syndrome and autism.

Dorval, a firefighter and paramedic in Whately, Mass., was making a point about visible disabilities versus the invisible. Connor's Down syndrome is easy to identify, Dorval said, because it carries certain physical characteristics, such as an upward slant to the eyes and small stature.
"If you saw Connor, you'd recognize the disability right away," he said.
Autism, however, doesn't carry such obvious physical characteristics. That is why Dorval is visiting police and fire departments throughout the country as part of the Massachusetts-based Autism and Law Enforcement Coalition, founded in 2003. The coalition helps train first responders to recognize people with autism and treat them accordingly.
"It's important to recognize a person with autism so they're not misconceived as being noncompliant with fire and police orders, (or) thought to be injured or possibly intoxicated," Dorval said.

Crenshaw: New CDC Stats Underscore Need for Congressional Passage of ABLE Act

from InsuranceNewsNet.com:
WASHINGTON
, March 27 -- Rep. Ander Crenshaw, R-Fla. (4th CD), issued the following news release: With the Centers for Disease Control and Prevention (CDC) March 27th announcement of an increase in the prevalence of autism spectrum disorder, Congressman Ander Crenshaw, Chairman of the House Financial Services and General Government Appropriations Subcommittee, today (3/27) called for Congressional passage of the Achieving a Better Life Experience Act (ABLE Act - H.R. 647 and S. 313). Crenshaw, author of the ABLE Act, issued the following statement after the CDC announced one in sixty-eight children have been identified as having autism spectrum disorder - a 30% increase from a 2012 CDC estimate. Go to http://www.cdc.gov/features/dsautismdata/ for specifics on the statistics. "The increase in the prevalence of autism in children announced by the CDC further underscores the need for Congress to take up and pass the ABLE Act to provide individuals with disabilities with the financial planning tools they need and deserve.

ABLE Act Would Allow Families to Prepare for the Future

by Laurel Joss from Autism Daily Newscast:
Caring for a loved one with autism is expensive. The expenses of raising a child with autism can include medical care, therapies, and respite care, but they do not end there. When children with autism grow up, they still have needs, including housing, utilities, and for many, around-the-clock supervision.
A recent survey by Autism Speaks of over 10,000 people from various socioeconomic and ethnic backgrounds in the United States found that only one out of four families were saving money for their child’s future needs. This statistic is frightening, considering the sheer numbers of children who will be ageing out of the school system in the next decade.
The Achieving A Better Life Experience Act (ABLE Act – S.313/H.R. 647) would allow families in the United States to open tax-free accounts similar to college savings accounts, health savings accounts, and individual retirement accounts in order to provide for their child’s future needs. Funds could be used for qualified expenses, including medical and dental care, education, housing, transportation, and job training programs. The ABLE Act also includes Medicaid fraud protection and a Medicaid pay-back provision when the beneficiary passes away.
Money saved through an ABLE account would not count against an individual’s eligibility for federal benefits, allowing individuals with disabilities to earn an income and save money towards their future without losing the benefits necessary for daily living.
Canada currently offers a similar program using Registered Disability Savings Plans (RDSP).

ABLE Act Gets Majority Support

from the Autism Policy Blog by Pitney:

The ABLE Act (HR.647 and S.313) yesterday had majority support in both chambers as the 51st senator became cosponsor (counting prime sponsor Robert Casey (D-PA)). As of this morning, it had 310 in the House (including prime sponsor Ander Crenshaw R-FL)). A number of lawmakers agreed to cosponsor when they met with advocates during last week's Autism Speaks to Washington summit. Autism Speaks provides the full list here.

The Arc explains the bill:

Many families have been searching for a way to plan for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, they find those plans do not fit the needs of their child with severe disabilities, since their children may now, or in adulthood, need the long term services and supports of the Medicaid program and the income assistance of the Supplemental Security Income (SSI) program. Some families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs, yet they recognize that their loved ones may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid. Others want to ensure the financial security of family members who have the level of disability required for Medicaid eligibility, but for now, are managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.

From a Crenshaw press release:

Congressman Ander Crenshaw (R-FL), chairman of the Financial Services and General Government Appropriations Subcommittee, stated, “Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever - testament to the tireless dedication of those who believe that ALL Americans deserve equality when it comes to financial planning tools. It’s time to pass this legislation and create a brighter future for those in need. ”

Senator Robert Casey (D-PA) stated, “The ABLE Act is commonsense bipartisan legislation that will help make it easier for those families to save for their children’s future care, and we should pass it immediately. Individuals with disabilities and their families face challenges many of us can’t even begin to imagine.

Down syndrome doesn't deter young artists

from Evansville Courier & Press, NECN.com:
Down syndrome is no hindrance to the creation of art. That's the lesson seven area youths with Down syndrome are learning during an eight-week Art Smart class being taught by local photographer and artist Nikki Davis.
Davis, who is also interim director of S.M.I.L.E. on Down Syndrome, tells her students that art has no boundaries, no limitations and that artists use their creative vision to express their feelings or ideas.
S.M.I.L.E., is an acronym for Support, Management, Information, Love and Encouragement, a network and support organization for parents and families with Down syndrome children. Although the organization focuses on individuals with Down syndrome, the classes which explore different media — clay, acrylics, watercolors, pencils, charcoal and pastels — are also open to individuals with autism.
"Art provides one more avenue of ability, rather than focusing on a disability, it provides opportunity for creativity," Nina Fuller, founder and president of S.M.I.L.E, told the Evansville Courier & Press ( ).
As paint brushes swirled watercolors across paper, the budding artists learned to use bright colors, water and different types of brushes to create their own vision of landscapes.
"What's the first thing we learned?" Davis asks the students.
"Everybody's painting will look different" she and the students reply.
Davis, started the classes because she felt through art the students learn valuable life skills that can also translate into everyday life.
"I chose to pursue this as option for our members because art helps meet a number of goals that we have for our attendees. Art offers: physical and occupational training through improving motor skills, cognitive training by improvement of memory, prioritization, planning, organization, psychosocial training by improving interpersonal skills, expression of feelings and meets emotional goals by improving impaired control, by easing anxiety, and by giving our artists a sense of pride and accomplishment," Davis said.
Classes are held every other Monday, free of charge to participants at Wired Coffeehouse in downtown Evansville. Supplies are provided by SMILE with help from a grant from the Evansville Optimist Club.

Dual Diagnosis of Down Syndrome & Autism

from NDSS by George T. Capone, M.D. Adapted From Disability Solutions Volume 3, Issues 5 & 6

During the past 10 years, I’ve evaluated hundreds of children with Down syndrome, each one with their own strengths and weaknesses, and certainly their own personality. I don’t think I’ve met a parent who does not care deeply for their child at the clinic; their love and dedication is obvious. But some of the families stand out in my mind. Sometimes parents bring their child with Down syndrome to the clinic—not always for the first time—and they are deeply distraught about a change in their child’s behavior or development. Sometimes they describe situations and isolated concerns that worry them such as their child has stopped learning new signs or using speech. He is happy playing by himself, seeming to need no one else to make the odd game (shaking a toy, lining things up) he is playing fun. When they call to him, he doesn’t look at them. Maybe he isn’t hearing well? He will only eat 3 or 4 foods. The suggestion of a new food, or even an old favorite, brings about a tantrum like no other. He is constantly staring at the lights and ceiling fans. Not just while they pass by, but obsessively. Getting him to stop staring at the lights is sometimes difficult and may result in a scene. He requires a certain order to things. Moving a chair to another spot in the room upsets him until it is returned to its usual spot.
Some families do their own research and mention they think their child may have autistic spectrum disorder (ASD) along with Down syndrome. Others have no idea what may be happening. They do know it isn’t good and they want answers now. This article is for families in situations like this and other, similar ones. If your child has been dually-diagnosed with Down syndrome and autistic spectrum disorder (DS-ASD) or if you believe your child may have ASD, you will learn a little more about what that means, what we are learning through data collection, and insights to the evaluation process.

Why Down Syndrome Boosts Susceptibility to Other Conditions

from Science Daily.com:
A study led by UC Irvine researchers has revealed some of the underlying neural factors that explain why people with Down syndrome are more susceptible to Alzheimer's disease, diabetes and autistic spectrum disorders. Jorge Busciglio, associate professor of neurobiology & behavior, and colleagues analyzed the cellular and molecular mechanisms leading to oxidative stress and mitochondrial dysfunction in individuals with Down syndrome.
They found that this breakdown in energy metabolism within brain cells contributes to the higher probability of these other conditions.
Down syndrome occurs when a person has 47 chromosomes instead of the usual 46. Estimates suggest that 25 percent or more of individuals over 35 with Down syndrome show signs of Alzheimer's-type dementia. This percentage increases with age.
The incidence of Alzheimer's disease in people with Down syndrome is roughly three to five times greater than in the general population. Pablo Helguera, Jaqueline Seiglie and Michael Hanna of UC Irvine; Jose Rodriguez of UCLA; and Gustavo Helguera of Argentina's University of Buenos Aires also contributed to the study, which appears in the Jan. 8 issue of Cell Metabolism and was supported by the Larry L. Hillblom Foundation and the National Institutes of Health.

University of California - Irvine (2013, January 10). Why Down syndrome boosts susceptibility to other conditions. ScienceDaily. Retrieved January

Ninth Annual Trisomy 21 Symposium

Ninth Annual Trisomy 21 Symposium

Saturday, March 16, 2013

Sponsored by the Trisomy 21 Program at

The Children’s Hospital of Philadelphia

www.chop.edu/cme

Trisomy 21 is the most frequently occurring chromosomal abnormality, found once every

800 to 1,000 live births. However, both pediatric and adult clinical care continues to

present significant and unique challenges.

Children with trisomy 21 are at higher risk for congenital heart disease, gastrointestinal abnormalities, endocrinologic disorders, epilepsy, musculoskeletal issues that affect motor abilities, hearing loss, speech apraxia, sleep disorders, feeding disorders, and developmental disabilities, including learning disabilities, mental retardation and autism. Deficits in any of these areas can adversely affect the child’s development and adaptive behavior.

This one-day symposium will provide parents and healthcare professionals with up-to-date clinical information, therapeutic approaches and current research being conducted in the field of trisomy 21.

Presentation Summaries:

Dental Management of the Patient with Down Syndrome (Trisomy 21) Angela Stout, D.M.D., M.P.H. - This presentation will discuss various dental characteristics and

anomalies that exist with patients who have Down syndrome and will review tips for the parent and caregiver to maintain good oral health for their child/patient. Several treatment options

and behavior management techniques will be offered to guide and assist the parent/caregiver to get their child/patient through dental examinations and treatment.

Promoting Health and Mental Wellbeing in Individuals with Down Syndrome: Lessons Learned from the Adult Down Syndrome Center of Advocate Lutheran General Hospital Brian Chicoine, M.D. - Dennis McGuire, Ph.D.Drs. Chicoine and McGuire will discuss findings from a multidisciplinary clinic serving the health and psychosocial

needs of over 5,000 teens and adults with Down syndrome in suburban Chicago. They will discuss the interaction of physical and mental health conditions and discuss ways to reduce the risk of mental health/behavioral conditions. They will also discuss health promotion strategies and behavioral characteristics that are adaptive.

Monica Walters Martinez and David Martinez Self-advocates and Stars of the HBO Documentary, Monica & David Moderator: Ali Codina - Monica & David is a documentary that explores the marriage of two adults with Down syndrome and the family that strives to support their needs. Monica and David are blissfully in love and want what other adults have — an independent life. While Monica and David are capable beyond expectations, their parents, aware of mainstream rejection of adults with intellectual disabilities, have trouble letting go.

Autism Group Calls For End To ‘Infighting’

from Disability Scoop by Michelle Diament:
A leading national advocacy group is calling for a summit this fall in an effort to mitigate divisiveness within the autism community.
The Autism Society wants to bring together all of the major autism organizations to establish a series of joint goals.
“The infighting that a lot of times characterizes the autism community needs to stop,” said Scott Badesch, president of the Autism Society. “Until we come together, we’re not going to be able to move the needle on enhancing autism services.”
Tension has been brewing for years with parents and even professionals at odds over everything from possible causes of the developmental disorder to whether precious dollars should be spent on research or services for those on the spectrum.
As a result, Badesch said he sees many other interest groups getting a stronger reception locally and in Congress, citing elderly Americans and the gay and lesbian community as examples. By working together with a united front, Badesch said he hopes autism advocates can be more productive.
The Autism Society is calling for leaders of national organizations to come together in the same way that many companies, for example, work together through industry trade groups. While each organization would retain its own agenda and perspective, the community could work collectively to achieve specific objectives.
Badesch’s group is reaching out to other stakeholders at present to gauge interest. He said the initial response has been positive but declined to offer specifics.
In a statement Tuesday, an Autism Speaks spokesman said the organization “looks forward to joining this conversation about how we can all work to improve the lives of people with autism and their families.”
Inquiries from Disability Scoop to three other national groups advocating for individuals with autism about the proposed summit did not yield any immediate response.
With the election coming this fall, those initiating the talks say they are hoping to bring a group together before the new Congress gets to work next year.

ABLE Act National Call In Day Wednesday 4/25!

People with disabilities recieving Medicaid benefits are limited to $2,000 in assets. In many cases this prevents them from improving their quality of life were they cannot get a job with a decent salary, cannot save to buy a car or a home, cannot save to pay for medical services beyond what is covered by Medicaid, cannot save money from birthdays/holidays, and cannot save to pay for their future aspirations. They are basically forced to live at poverty levels because of their need for Medicaid support.

If passed by Congress, the Achieving a Better Life Expierience Act will provide a savings account (ABLE account) similar to a retirement account, health savings account, or education savings account where the money in the account will not count against the $2,000 Medicaid asset limitation. The person will be able to save money for their future and continue to recieve their Medicaid support allowing for greater independence and quality of life.

The ABLE Act is one of the most important pieces of pending legislation for people with disabilities. Help us get this Bill passed by contacting your members of Congress to ask them to be a co-sponsor of the ABLE Act by following the instructions below.

from the NDSS:

Ds Advocates:

Mark your calendar! NDSS is hosting a National Achieving a Better Life Experience Act (ABLE) Act (S. 1872/H.R. 3423) Call-In Day this Wednesday to ask Members of Congress to cosponsor this significant, bipartisan legislation. The call-in information script and talking points are included in this action alert (click here or follow the instructions below).

NDSS will be joined by the following host organizations: Autism Speaks, D.A.D.S. National, Muscular Dystrophy Association, National Down Syndrome Congress, National Disability Institute, National Fragile X Foundation, The Disability Opportunity Fund, and the Collaboration to Promote Self-Determination.

The ABLE Act, when passed into law, will provide individuals with Down syndrome the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The ABLE Act would utilize the 529 education saving accounts program with which thousands of Americans are already familiar. As with the existing 529 accounts, contributions to ABLE accounts would grow tax free and would be easy and inexpensive to create and support people with disabilities.

Thank you for taking a few minutes to make calls to your Members of Congress on Wednesday that haven't cosponsored the ABLE Act.
Happy Advocating!
Sara Hart Weir
Vice President, Advocacy & Affiliate Relations, National Down Syndrome Society

Steps to Take Action -- Easy as 1 – 2- 3

 1)      Find out if your two Senators and your Representative have signed onto the ABLE Act by clicking on the links below (under cosponsors):
House: http://capwiz.com/ndss/utr/1/AXJRRPYWSL/EQGSRQFTFH/8195517716
Senate: http://www.govtrack.us/congress/bills/112/s1872

If any of your Members have NOT signed onto the ABLE Act, please call their Washington, DC offices (click here to find out the phone number). 

Begin the call by introducing yourself and asking to speak with your Member’s disability legislative staffer. (Note: You may need to leave a voice mail or call back, if the disability staffer does not answer)

2)      Follow this ABLE Act phone script (below or click "take action" right handside of the email):
Once you have the staffer on the line, open and introduce yourself with:

• “Hello, I am calling to ask my [Senator/Representative] to be a cosponsor of the Achieving a Better Life Experience (ABLE) Act.”
• I am a constituent   from your [State/District] and am a self-advocate, parent, sibling, grandparent, etc. from the [insert disability] community.

Talking Points to Mention During Your Call:

• The ABLE Act (S. 1872/HR 3423) currently has over 134 cosponsors in the House and 14 in the Senate. This bipartisan bill was introduced by:
• Senators Casey (D-PA) and Richard Burr (R-NC) as S. 1872 
• Representatives Crenshaw (R-FL), McMorris Rodgers (R-WA), and Van Hollen (D-MD) as H.R. 3423

• The bill has been endorsed by over 50 national, state, and local disability organizations.
• This bill would utilize the 529 education saving accounts program with which thousands of Americans are already familiar.  As with the existing 529 accounts, contributions to ABLE accounts would grow tax free and would be easy and inexpensive to create. 
• The ABLE Act will give individuals with disabilities and their families the ability to plan and save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.
• The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.
• The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts.

If your Member is interested in signing on as a cosponsor, please have them contact:

• Senate: Sen. Casey/Jennifer McCloskey (Jennifer_Mccloskey@casey.senate.gov)
• House: Rep. Crenshaw/Jennifer Debes (Jennifer.Debes@mail.house.gov)  

3)      Let Us Know About Your Call: Please let us know about your conversation! Email (sweir@ndss.org) to let us know who you spoke with and what they had to say about the bill. We can help by following up with their DC office.

For more information about the ABLE Act, please use the following resources:

• ABLE Act one-pager
• The ABLE Act - The 112th Congress
• ABLE Act Gains Support from 49 National, State, and Local Advocacy Organizations

employment at Poppin Joes makes life meaningful

from The Capital Journal by Andy Marso:

When school officials told Ray Steffy his son Joe would never be able to hold down a job because of his autism and Down syndrome, the elder Steffy got mad. Then he went into action.

"I was just determined to prove to them he could work," Steffy said.

Joe is now 26. He not only works, he creates work for others. With the help of his father and mother, Janet, Joe started Poppin' Joe's — a kettle corn business that grossed $60,000 last year and has seven part-time employees.

The Steffy family came from Louisburg to Topeka's Capitol Plaza Hotel on Wednesday to tell the story of Poppin' Joe's as part of a two-day conference for people with disabilities and their advocates.

The Employment First Summit follows up on groundbreaking legislation signed by Gov. Sam Brownback this past May that requires state programs and services to promote the employment of Kansans with disabilities.

The administration's focus on employment drew praise the day before from a panel of advocates who were otherwise critical of the governor because of his proposed Medicaid reform. Brownback himself opened the conference Wednesday morning by briefly addressing the overflow crowd of several hundred attendees.

Brownback was followed by David Hoff, of the Institute for Community Inclusion in Boston.

"We need to make sure this legislation is not just empty words," Hoff said. "It's one thing to have a piece of legislation or policy. It's a whole other thing to implement it."

Hoff outlined a seven-point plan for realizing the goals of the new law, including funding jobs programs and shattering misconceptions among the disabled and their families that there is no work for them or they will lose government aid if they work.

Mickayla Fink, of the Workforce Alliance of South Central Kansas, attended the conference. Fink, who is working with a grant through the federal Disability Employment Initiative, said she was eager to network with other advocates at the conference and share ideas.

Fink said part of her job in Wichita is obtaining assistive technology for the disabled to help them in the work force, such as hearing aids she was able to get for a hearing-impaired man.

Assistive technology also proved key for Joe Steffy, who is largely nonverbal and uses an electronic device to help him communicate. He also got assistance from Vocational Rehab and home- and community-based Medicaid services.

Ray Steffy said although he and his wife keep the books, Joe is the driving force behind Poppin' Joe's. The company makes five flavors of kettle corn, sells at carnivals and fairs, and has corporate clients, including financial powerhouse State Street.

By pushing a button on his DynaVox system, Joe told a roomful of people Wednesday about how his business has allowed him to live on his own, connect with members of his community and travel.

"Because I work," he said, "my life is full of meaningful adventures."

iPad: more than a toy it's a powerful teaching tool

From PRWeb from ACDS:

The iPad isn't just about fun and games, it's a voice for those who are unable to or just learning to speak, and a powerful teaching tool. For the last year, many students at ACDS have been able communicate, some for the first time, thanks to the iPad.

"With our population, it's exciting to use 21st century technology to help us with our goal of preparing children to transition on into the public school setting at the age of 5," explained Cecilia Barry, SBL/SDL, principal of ACDS, an early intervention and special education preschool working with individuals with Down syndrome, Autism spectrum disorders and other developmental disabilities and their families.

The road to the iPad began when Jessica Litwack, one of ACDS' speech/language pathologists first heard about how iPads were being used at a convention of the American Speech & Hearing Association in 2010. When she got an iPad as a Christmas present and played with it, she saw the potential. Then there was a student, diagnosed with Apraxia, an oral-motor speech disorder, who had difficulty communicating verbally. His tech savvy parents had discovered the iPad was an effective communication aid for their son at home and his speech therapist coordinated utilization of the iPAD for home and school. Thus, an idea was born.

With donations from the Parent Teacher Organization, individual parents, as well as one provided by the Nassau Suffolk Chapter of the Autism Society of America, ACDS now has 11 iPads. Ideally, ACDS would like all 15 pre-school teachers to have an iPad; right now they are used primarily by the speech pathologists. Better still, ACDS aspires to create a library of iPads that could be loaned out to students.

Using the iPad, ACDS' littlest ones, those ages 2-5, have been able to communicate -- some for the first time. The touch-and-swipe screen gives them the ability to express themselves and serves as a tool that enables these children to participate in classroom activities with their peers.

"The iPad is being used across disabilities and has been remarkable in particular for (use with children with) autism spectrum disorder as well as those with Down syndrome,” said Barry.

The iPad is versatile and can be used as an augmentative device to help individuals communicate. However, the iPad is significantly less expensive than the thousands of dollars that other augmentative devices can cost. It's also just cool, fun, and socially acceptable which matters to children who have shown that they are motivated to learn with the iPad.

"With the iPad, children are motivated to focus and pay attention for a longer period of time. Many children with Down syndrome and autism spectrum disorders are visual learners, so the iPad appeals to their learning style," ¬said Barry. "These kids are not reading, they're using pictures to communicate. For example, they can touch a picture of a sandwich or chicken nuggets on the iPad screen to indicate their preference and a voice recorded on the iPad states their preference in response to their touch," explained Litwack.

Another effective teaching tool of the iPad is it’s camera. It enables the iPad to become more dynamic and specifically geared to each child’s needs. An ACDS teacher recently used the iPad as a means of assessing knowledge of identification of classmates for a child who was unable to speak. Using the ipad’s camera, the teacher took a picture of the individual children in the classroom. The student was shown the iPad with these pictures and was asked to identify his friends when they were named. By touching the pictures on the iPad he was able to pick them out one by one – thus displaying a skill no one previously knew he had.

The iPad has opened a whole new world. "Everybody loves The Itsy Bitsy Spider. But it's different when the kids can touch the screen and it comes to life for them," said Barry.

There are numerous apps designed for children with special needs. “The iPad has apps that not only teach readiness skills in a fun way, but many apps also have the ability to automatically record data on students progress,” said Tricia Leahy, special education teacher. “We can monitor their progress with data that is automatically calculated at our finger tips!”

What's key, is ACDS' coordination with parents. “If an upcoming classroom topic is winter and the target words are coat or hat, I would have parents review the vocabulary pictures on their child’s iPad with their child so that the child would be prepared for the lesson in school. This prepares them to participate, to have a voice with the lesson," said Michele Harrington, Speech/Language Pathologist. The goal, if the child has their own iPad, is to have them practice at home.

Much is said about how technology is being misused by young people, but for the children at ACDS, technology is changing lives. "This is a great opportunity" said Barry.

ACDS, located in Plainview, New York is dedicated to providing lifetime resources of exceptional quality, innovation and inclusion for individuals with Down syndrome, Autism and other developmental disabilities and their families. ACDS has been providing programs and services in and around Long Island for 45 years. ACDS currently serves more than 750 children and adults, providing services that include Early Intervention and preschool special education programs, respite and recreation programs for children, teens and adults, adult Medicaid service coordination and seven supervised group homes in Nassau County.

iPad, iPod, iPhone apps for children with Down syndrome

from Touch Autism:

Touch Autism began to build mobile device applications (iPod, iPad, iPhone, and others) for children with autism spectrum disorders, Down syndrome, intellectual disabilities and other special needs after discovering how incredibly useful this type of technology can be.

Some of the many advantages of these apps are that they suit visual learners, they allow for non-verbal and non-written responding, they provide immediate and consistent feedback, and are very motivating, because they are just so much fun!

Touch Autism is a two person team dedicated to making the best technological apps for autism, Down syndrome and other special needs that we can! The Touch Autism Team is comprised of Jenny Winningham, a Board Certified Behavior Analyst and Tomas Krones a Software Engineer. The two of us continuously work toward creating technologies that can help people with autism spectrum disorders, Down syndrome and other intellectual disabilities live independent and productive lives.

1. Staying Safe and Safer Strangers- A Stranger Danger Social Story for Autism, Down Syndrome & Other Special Need - This app is made up of two community safety social stories. One story focuses on safer strangers and buildings, and the other focuses on what to do if you are lost. 
2. Calm Counter - Social Story and Anger Management Tool for Autism, Down Syndrome and Special Needs - The app opens up to a "I need a break screen" that vocalizes "I need a break" when it is tapped. The screen then transitions to a red screen with an angry face and the number ten. With each tap the screen transitions to a calmer face and color. In this way, the app prompts the user to count backwards from ten followed by a deep breath. The app also includes a simple social story with line drawings about anger. The social story talks about feeling angry and things you can do, like counting to ten, breathing deeply and taking a break, to calm yourself down. The settings screen allows you to choose from male, female or no vocals for counting back from ten and for reading the social story out loud.
3. Touch Trainer - Autism & Special Education - The Turn Taker uses visual and/or audio cues to facilitate turn taking and/or sharing in children diagnosed with an autism spectrum disorder, Down syndrome or other special need. This app has also been used successfully with young children, children diagnosed with ADHD, and with any child that finds it difficult to share! 
4. Divorce Social Story - A Social Story for Children about Divorce – Autism, Down Syndrome and Special Needs - This app is a simple and short social story about diveroce and what it means for a  child. The app uses simple language and graphics to explain that divorce means parents living in separate houses, and that it's ok. 
5. Turn Taker - Sharing Tool and Social Story for Autism, Down Syndrome and Special Needs - The Turn Taker uses visual and/or audio cues to facilitate turn taking and/or sharing in children diagnosed with an autism spectrum disorder, Down syndrome or other special need. This app has also been used successfully with young children, children diagnosed with ADHD, and with any child that finds it difficult to share!
6. Preference & Reinforcer Assessment - Autism & Special Education - his Preference (Reinforcer) Assessment app was designed by a BCBA (board certified behavior analyst) to make running a preference (reinforcer) assessment amazingly easy to do, so that anyone can effectively and scientifically determine their child’s or client’s preferences. Reinforcement (Preference) Assessments are an incredibly important procedure in any behavior change program. They are not conducted nearly as often as they should be because they can be difficult to run, or because many parents, caregivers or practitioners have not been sufficiently trained to run them. This app includes such features as descriptions of all of the types of preference assessments, a timer to determine the end of a trial, and specific instructions and visuals to help you set up and run the assessment. Once the assessment is finished the app will automatically calculate the percentage of times each item was selected in which it was available, and will present this info in an easy to read bar graph. The data and graph from each client will be saved on the app, so that the user can easily review results from past assessments.
7. My Day With WH Words - A Social Story and Speech Tool for Autism, Down Syndrome and Other Special Needs - This app includes a social story about talking about one's day, and a simple visual support for "WH" questions (Who, What, When, Where, Why, How). The story focuses on why it's important to tell people about your day, and what each different WH questions mean.
8. Potty Training Social Story - Autism, Down Syndrome & Special Needs - This is an interactive story about potty training that is customizable for boys or girls. The app also includes and extensive FAQ page that lists answers written by a board certified behavior analyst to common potty training questions.
9. Knock Knock Numbers - Autism & Special Education - Knock Knock Numbers was designed by a BCBA as a fun way to teach kids how to tell knock knock jokes, while working on number recognition. The app teaches 20 different jokes and each one prompts the user to identify a number between one and ten.
10. Conversation Social Stories and Simple PECS Communication Tool - Autism, Down Syndrome & Special Needs - This app is made up of four social stories about different conversational skills and simple communication tools to go with them. The stories focus on greetings, asking someone to play, what to talk about in a conversation and tips for great conversations. 
11. Autism Apps - Autism Apps is simply a comprehensive list of apps that are being used with and by people diagnosed with autism, Down syndrome and other special needs. It also includes links to any available information that can be found for each app. The Apps are also separated into over 30 categories, and the descriptions are all searchable, so any type of app is easy to find and download.
12. Touch Tutorial - Elderly, Autism & Special Education - Touch Tutorial was designed by a BCBA (Board Certified Behavior Analyst) to teach users with little to no experience with new technology how to use touchscreens. Touchscreens, like those found on ipads, iphones, ipod touches or other devices, are being used more and more frequently in every day society. This application uses easy to understand language and icons to teach foundational skills and then builds on these skills so that the user learns many of the common gestures necessary to operate a touchscreen device. Also see Touch Tutorial Lite - Autism, Special Education & Elderly 

Boy's Disney Dream Comes True

from WBOY:

The Sunshine Foundation granted another Barbour County boy his dream come true, sending him and his family to Disney World.

Ryan Durst is a 13-year-old boy from Philippi.

He has a brother Ethan, and a sister Emily.

Ryan's story began at birth when he was diagnosed with Down syndrome.

"For many years we knew that Ryan was a little different than other Downs kids," said his mother Barbara Durst. "He wouldn't talk and he always ran away, and there were some sensory issues that he had as well."

It was then one day when Ryan's mother Barbara was working at a school with special needs kids, that she noticed similar traits between Ryan and her Autistic students.

After a consultation with his doctor and a specialist, at age 7, Ryan was diagnosed with Autism on top of his Down syndrome.

Ryan has endured the struggles that come along with Down syndrome and Autism.

He also has endured the struggles the come along with being in a military family.

But things will be different this holiday season when the Sunshine Foundation brings the Durst Family a dream come true, sending them to Disney World.

"We didn't really expect it, we are grateful for it," said Ryan's father Sgt. Martin Durst. "We've been trying for many years to get our children to Disney world, but financially it never worked out on a one income family, but this came by as a wonderful gift."

"The greatest thing is probably being able to be there as a family," said Barbara Durst. "And seeing our kids interact with one another and knowing that it's something they enjoy doing."

This year the Sunshine foundation turned 35-years old.

The foundation says they are the ‘original wish-granting organization' and have granted over 36,000 wishes.

While they say every single one is different, organizers feel the same way about everyone of them.

"We know that there is a lot of struggle and sad times, and a lot of hard times," said Sunshine Foundation's President Kate Sample. "But this is a time for me to see when everyone is happy and for the foundation to enjoy."

If you would like to nominate a child to receive a wish, or donate towards the organization you can visit their website.

By Andrew Clay, Monongalia and Preston County Reporter

Celiac, Gluten and Down syndrome

People with Down syndrome are more likely to have Celiac Disease (CD) requiring a gluten-free diet. Below is a compliation of articles on this topic.


From Down Syndrome: Health Issues:

• Studies in the 1990s indicated that children with DS are at a higher risk to develop CD than the general population. The reasons for that aren't entirely clear, but since children with DS are at a greater risk from auto-immune diseases, that CD represents another one of these type of diseases.
• Children with DS who develop CD may actually have few symptoms at all, leading to what is called "silent" CD.
• Since CD can show few to none symptoms in children with DS, why worry about it? Because if left untreated, CD can cause decreased growth in height in children. Untreated CD can also cause a type of cancer in the intestine called lymphoma. This cancer is a rare but serious outcome that appears in the later adult years.
• Treatment is both simple and difficult: a gluten-free diet. All wheat, barley and rye products are off limits. Currently, it is recommended that oats be also eliminated from the diet at the beginning. They can be replaced in the diet as soon as the patient is doing better. In many cases, the symptoms of CD may lessen in as early as 2 weeks. The older the child, the longer it takes to come under control. CD is a lifelong disease; symptoms may from time to time subside to the point of the CD appearing to be gone, but the person must continue on the diet to avoid illness. The person may need vitamin supplementation to complete the diet.

from Celiac.com:

• Children with Down Syndrome should be screened for celiac disease because there is a 10% incidence of the autoimmune disorder in this population. Screening for and treating celiac disease can improve the quality of life for children with Down Syndrome.

from Pediatrics:

• Screening for a disease is appropriate if the disease has serious consequences, if before onset of the disease there is a detectable latent phase, and there exists a treatment that is more effective at an earlier stage. In patients with symptomatic celiac disease, a gluten-free diet for as little as 5 years can reduce or prevent gut lymphoma. Thus, with respect to gut lymphoma, celiac disease can be considered a premalignant condition. Furthermore, in a substantial proportion of cancer patients, the underlying celiac disease is not recognized until around the time of cancer diagnosis. Therefore, it would seem intuitive that identification and treatment of celiac disease at an earlier, asymptomatic stage would be even more effective.
• The authors site growth failure as one of the common findings at diagnosis of celiac disease in children with Down syndrome. Impairment of linear growth becomes evident late in the course of a disease. One would expect that screening and, therefore, earlier treatment would prevent growth failure.

from dsmig.org:

• If the person is more than 2 years old when the diagnosis is established the condition will be lifelong. Those diagnosed before age 2 years may have other conditions which mimic coeliac disease and therefore should be rechecked with further gluten challenge before school entry.

from Bella Online:

• Relatives of people with celiac disease, sometimes called celiac sprue, have a higher possibility of gluten intolerance but may not be aware they are affected.
• Joan Medlen, RD, author of The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles, is a leading resource for families of children with celiac disease. Know that you are not alone in dealing with the challenges celiac disease and gluten free living introduces into your child's life - there are well informed professionals and parents who are reaching out to others, remembering the adjustments they made in the early months after diagnosis.
• It is natural for families of children with the dual diagnosis of Down syndrome and celiac disease to feel anxious or occasionally overwhelmed in the weeks following diagnosis. Your child may find changes in routines and diet difficult, but it's common for them to feel much better within weeks of starting gluten free living.
• Frustration with extended family, staff at school, daycare or recreation programs can make it difficult to work out the changes that are needed for the health and well being of the child with CD. Sharing articles and medical information, and eventually writing up a one page information sheet for substitute teachers and parents of your child's friends, will help educate and inform the whole community.

from NDSS:

• The incidence of celiac disease in children with DS ranges from 10% to 16%.  One reason children with Down syndrome have this disease is because of increased susceptibility to autoimmune diseases. In children with Down syndrome who are genetically predisposed to celiac disease, exposure to gluten causes an immunologic reaction in the lining of the small bowel resulting in flattening and thinning of the normal hair like projections (villi) of the lining. This is the part of the intestine which is the absorptive surface of the small bowel.

from Woman Gone Wise:

• In my initial research of the gluten-free diet and special needs kids,  I learned kids who crave these gluten-laden foods have most likely become addicted to them.  There is an opiate effect that occurs and many parents have reported their own children went through withdrawal like symptoms when initially eliminating gluten.  Many children with autism had a surge in their behavior. The withdrawal effects are similar to addicts withdrawing from a narcotic.
• New textures, flours made of rice and beans, crumbly breads; are all things families typically learn to adjust to with this new diet.  But then the behavior came.  Wild behavior.  AJ began tossing items across the room.  He couldn’t keep his clothes on.  He ran across the hall as quickly as he could, throwing his body into the door, then ran through the family room throwing his body into the back door.  He ran back and forth and back and forth slamming himself into the doors and walls.  His pain tolerance was even higher than usual.
• I almost became frantic, until I remembered the possible withdrawal symptoms.  I reread every word and it was describing our boy.  Not every child with autism reacts with heightened symptoms, I believe it is a small percentage, and of course our family hits the jackpot again.  I kept him home from school the first week until his body adjusted and calmed down. 

also from Woman Gone Wise:

How will your child learn to make healthy new choices?

• Make an accessible food cupboard or basket for your child.  Put their name on the cupboard and celebrate the cupboard as his or her own.
• Label packages.  Highlight the words “Gluten Free” on the food packages with a highlighter or tape your own colorful label on the gluten-free product.
• Label choices.  Make a picture board of healthy and fun gluten-free choices: fruit, crackers, yogurt, etc.  Tape the picture board on the outside or inside of the cupboard as your child is learning new dietary choices.
• Label the refrigerator.  Dedicate a bin or shelf in the refrigerator which remains exclusively accessible for your child.  Clearly and colorfully label the shelf or bin.
• Look for labels in the grocery store.  Go shopping together and read the gluten-free labels on food products.  When your child takes an item from the shelf ask, “Is this food gluten-free?”  Use your finger to point out the words “gluten-free”.  Then celebrate, “Yea! This looks yummy!  These crackers are good for you.  Let’s put it in the cart”.   The repetition of reading labels together will help your child get in the habit of looking for the familiar “gluten-free” words until one day he or she will be able to do it on their own.

IEP step-by-step guide

from disability scoop:

A new guide released Tuesday provides parents with a step-by-step look at how to obtain special education services from their school district.

The 26-page download from Autism Speaks offers a broad overview of the legal rights of parents and students with disabilities and walks through the process of forming an individualized education program or IEP.

The guide was prepared by attorneys at Goodwin Procter for the autism advocacy group, but is written in layman’s terms, using bullet points and flow charts for clarity.

“The IEP process can be daunting, overwhelming and highly frustrating for parents who are trying to ensure their child is getting the appropriate educational opportunities,” said Lisa Goring, vice president of family services at Autism Speaks. “We hope this guide will give families an effective road map that prepares them to make informed decisions and advocate for their child as effectively as possible.”

Though produced by Autism Speaks, most of the information included in the guide is applicable to all students that qualify for special education, irrespective of their diagnosis.