Honoring the ADA and the History, Art, and Culture of the Disability Community with the Smithsonian Institution and the Kennedy Center

The weekend of July 24 through 26, 2015 brings a nationwide celebration of the 25th anniversary of the Americans with Disabilities Act (ADA). President George H.W. Bush signed the ADA into law on July 26th, 1990, capping decades of legal efforts and activism to end discrimination against people with disabilities. To honor this historic event, leaders in the disability rights community, advocates, community members and politicians will gather on the grounds of the Smithsonian Institution’s National Museum of American History to mark this historic moment and highlight the ADA’s ongoing legacy in American life.

The Smithsonian Institution’s celebration will start on Friday, July 24, 2015, on the terrace of the National Museum of American History with a large discussion stage where topics such as the passage of the ADA, legal issues, advocacy, employment and the future of disability rights will be explored. Also on hand will be exhibits by federal agency partners and workshops in theater, dance, music and visual arts. Visitors can view a modified Corvette race car. There will be a number of hands-on activities and demonstrations. The museum store will host a trunk show of items from artists with disabilities. The celebration will start winding down on Sunday at noon with the ADA birthday party and a reading of a letter from George H.W. Bush along with a visit from the legendary ADA25 Legacy Bus, which has been traveling the country.

Inside the museum, the celebration will continue with a showcase of objects from the national collections that capture the significance and legacy of the ADA through the stories of four people. There will be a film festival of documentaries from filmmakers with disabilities followed by a discussion and a facilitated conversation on Latinos and the ADA. Additionally, actor and performance artist Mat Fraser will perform his one-person, original piece, “Cabinet of Curiosities: How Disability Was Kept in a Box.” Fraser’s creative take on attitudes about disability is equal parts cabaret, incisive lecture and humorous commentary on museum displays of human difference.

From July 16 through 26, 2015, the John F. Kennedy Center for the Performing Arts will celebrate the 25th anniversary of the Americans with Disabilities Act and the 40th anniversary of VSA with 11 days of free programming highlighting the rich history, art and culture of the disability community. VSA, a Jean Kennedy Smith Arts and Disability Program of the Kennedy Center, is dedicated to providing opportunities for people with disabilities of all ages across the globe to learn through, participate in and enjoy the arts.

Kennedy Center performing arts programming will include ten Millennium Stage performances by artists with disabilities opening with comedian Josh Blue and ending on July 26th with a performance by Mary Lambert. It will also feature a dance party and film screening for the inaugural year of TiLT, a youth multimedia competition themed on the disability experience.

In addition, seven art exhibitions by visual artists with disabilities will be on display at the Kennedy Center. Highlights include the Focus Forward exhibition, which features work from previous VSA Emerging Young Artists, and an exhibit examining Senator Edward M. Kennedy’s contributions to the passage of the ADA legislation with two portraits from the VSA Permanent Art Collection of Senator Kennedy by well-known artists Andy Warhol and Jamie Wyeth. The other exhibits showcase the work of photographers whose art brought disability pride to the public’s attention, universal design, the VSA Permanent Art Collection and a look at eight individuals whose lives were impacted by VSA.

The ADA is not the end of the fight for equal rights for the disability community but it was a historic step that should be honored and celebrated. Over 75,000 people are expected to join in this celebration and we hope that you will be one of them. For additional information on both celebrations go to http://www.2540celebration.com/ (website will launch June 4, 2015) or email access@si.edu.

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Disability Scoop: Students Design Calming Chairs For Those On The Spectrum

KANSAS CITY — Stuart Jackson was on a mission.

For years, the Overland Park, Kan. father had searched for a way to help his son find relief from the stress and anxiety often experienced by children with autism. Like many of those children, Joshua could be soothed through deep touch pressure — the kind of feeling one might get by being tightly hugged or squeezed.

Jackson came across a few potential solutions on the market, but they tended to be clunky, noisy or ineffective. And way too expensive.

So he took it to CAPS — the Center for Advanced Professional Studies in the Blue Valley School District.

And the engineering students rose to the challenge.

Using such items as a papasan chair, an inflatable air bag, a swimming pool noodle and a remote control air pump, they designed and built a device that not only provides deep pressure to calm the user, but is affordable and looks like a regular piece of furniture. It could work in the home or in an educational or clinical setting.

Now the students are testing and refining their two prototypes — the Sensory Chair and the Sensory Lounger (both trademarked) — and have applied for a patent. The ultimate goal: to get the chairs into all Blue Valley schools and beyond, maybe even into homes and clinics.

The children love the chairs, said Keith Manbeck, a CAPS instructor.

“The first time we tested it, one of the kids was on the verge of a meltdown,” Manbeck said. “Then he got in it, and he just calmed right down.”

The chairs, Manbeck said, “are real close to being done.”

“We’ll hopefully put one at Timber Creek Elementary full time next semester,” he said.

Manbeck, a computer-integrated manufacturing instructor, said the chairs will be on display at a sensory fair at a local elementary school in April.

“It’s kind of been a well-kept secret,” he said. “Now we’re ready for the public to see them.”

It’s been well-documented that sensory therapy such as deep touch pressure can calm children with autism, reducing tantrums, meltdowns and hyperactivity.

Temple Grandin discovered that concept by way of a cattle chute.

Often described as the world’s most well-known and accomplished adult with autism, Grandin observed as a teen that the cattle on her aunt’s ranch became calm when they were put in a chute that squeezed them firmly as they were given their vaccinations.

She persuaded her aunt to let her try out the chute and found that the device had the same calming effect on her.

Grandin went on to become a leading advocate for people with autism and is internationally known for using insights gained from her autism to cultivate dramatic improvements in the livestock industry. Her story was told in an award-winning HBO film in 2010.

Grandin designed a “squeeze machine” that works like the cattle chutes, providing deep touch stimulation evenly and laterally.

Amber Englehart, an occupational therapist at Timber Creek Elementary School in Overland Park, said talk of such a device came up at a parent-teacher conference with the Jacksons. Their 11-year-old son, Joshua, is in the LIFT program, which serves children on the severe end of the autism spectrum.

“Joshua’s dad asked if I knew anyone in the district who either had a hug machine, the kind from Temple Grandin, or if any school in the district had one,” she said. “But I didn’t. They’re very expensive.”

That’s when they decided to approach the CAPS program.

Jackson, an entrepreneur with a background in engineering, is president and CEO of AnalyzeDirect, an Overland Park-based medical imaging software company, and has been a mentor to students in the CAPS global business program for two years.

He put together a presentation for CAPS students that included a video showing the difficulties faced by parents with a child on the autism spectrum. He also showed them clips from the movie about Temple Grandin.

“Basically, the stuff that’s on the market either does not apply enough pressure or costs way too much,” he said. “The Temple Grandin squeeze machine costs several thousand dollars. It’s about 5 feet tall and 5 feet wide, weighs 300 pounds and has a big, industrial-strength compressor on it. It’s very noisy and is impractical for a home.”

So he challenged the CAPS students to come up with a device that was lightweight, quiet, aesthetically pleasing and could potentially be used at home.

Manbeck put his engineering students to work. They brainstormed with Englehart and came up with several ideas before deciding on the current prototypes, using Grandin’s research as their inspiration.

The lounger was the first. It has a plywood base, an air mattress pump and cushions made of high-density foam.

They took it to Timber Creek Elementary to test.

“There were five kids who tried it, and not one of them wanted to get out,” Jackson said. “So we regrouped at the beginning of this semester and talked about what we could do to make it an even better design.”

Andy Vietti, a Blue Valley Southwest High School senior, said students observed children in the LIFT program to get a better idea of what sensory issues needed to be addressed. That, combined with the Grandin movie, she said, “really gave me an emotional connection to the project.”

After more brainstorming, the students came up with a new model.

They put inflatable airbags on top of a papasan chair, then placed a vinyl cover over the bags and a swimming noodle around the edges for more cushion. They topped it all with a removable blue cover made of stretch fabric and put a yellow drape with an elastic band around the bottom of the chair to cover the components.

The pressure is regulated by a hand-held remote. The district’s risk manager has checked the chairs out and determined they are safe.

The green lounger weighs about 70 pounds, while the papasan chair, at 30 to 40 pounds, is less cumbersome and easier to transport. The cost of either chair is expected to be just under $1,000.

The students have taken the chairs to Timber Creek Elementary several times for testing.

“Some of them were a little uneasy at first,” said Austin Edmondson, a Blue Valley Northwest High School senior. “But as it inflated around them, they enjoyed the pressure and embraced it. It was pretty cool. Just seeing how it helps the children has been incredible.”

Zach Naatz, a Blue Valley High School senior, acknowledged that the sensory chair project hadn’t been his first choice when he came to CAPS this semester.

“I really wanted to be on the aerospace project,” he said. “But then I read about this one and changed my mind.”

He said he wasn’t sure what to expect at the outset: “I hadn’t had a lot of experience with children with autism.”

But now, he’s convinced he made the right decision.

“I picked this project because I knew it was going to help people,” he said. “And then when I saw the impact it had, I really wanted to see it succeed.”

Now comes the next phase of the project:

“We’ve gotten to the point where we’ve proven the concept,” Jackson said. “Now we’ve got to prove that this is filling some void.”

If they’re able to demonstrate that there is indeed a market for the chairs, the students will develop a business model then take it to potential investors.

The global business students will interview parents of children with autism as well as occupational therapists in special education classrooms and therapy centers.

“This feedback will help us to understand the competitive landscape and the size of the market while generating ideas for improving the products,” Jackson said.

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BBC: Lesser-known things about Asperger’s syndrome

When people hear the words Asperger’s syndrome, they often think of children or Albert Einstein – even though he was never formally diagnosed. But here are some things about Asperger’s that are less well known.

Asperger’s syndrome, sometimes known as an autistic spectrum disorder, is a lifelong disability which affects people in many different ways.

While there are similarities with autism, people with Asperger’s syndrome have fewer problems with speaking and don’t usually have the associated learning disabilities.

They sometimes call themselves aspies for short. In recognition of the fact that their brains are wired differently, people with autism and Asperger’s say that they are “neuro-untypical”. They call people who don’t have either disability “neurotypicals”, or NTs.

And that’s just for starters. Here are some more lesser-known or misunderstood aspects of Asperger’s syndrome from those who know.

Is it mainly a boy thing?

Although Austrian paediatrician Hans Asperger thought it only affected boys when he first described the syndrome back in 1944, research since has found that there are likely to be a similar number of females on the spectrum.

The National Autistic Society says that because of the male gender bias, girls are less likely to be identified with autism spectrum disorders, even when their symptoms are equally severe. Many girls are never referred for diagnosis and are missed from the statistics altogether.

Asperger’s affects females in a slightly different way. Girls will have special interests but instead of building up an incredible wealth of knowledge on subjects like trains or dinosaurs – like boys with Asperger’s might – they tend to like the same things as neurotypical girls their age, albeit in a more focused way. Continue reading BBC: Lesser-known things about Asperger’s syndrome

The Maryland Assistive Technology Network

The Maryland Assistive Technology Network (MATN) is a premier professional learning network which connects educators, families, and educational leaders engaged in improving learning and teaching through the effective use of assistive and universally accessible technologies in education. MATN is a service of the Johns Hopkins University, Center for Technology in Education (JHU CTE). MATN membership is free and open to all.

By becoming a member of their online community, you exchange ideas, questions and recommendations with educators, families, researchers, leaders and policy makers around assistive technology tools, services, and processes. This vibrant network strives to help support individuals’ learning and independence.

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Think College

Think College is a national organization dedicated to developing, expanding, and improving inclusive higher education options for people with intellectual disability.  With a commitment to equity and excellence, Think College supports evidence-based and student centered research and practice by generating and sharing knowledge, guiding institutional change, informing public policy, and engaging with students, professionals and families.

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Disability Blog: IDD Toolkit Offers Information to Improve Health Care for Adults with Intellectual and Developmental Disabilities

As the parent of a son with autism who has recently become an adult, one of my big concerns has been who will provide his medical care when he ages out of his pediatrician’s practice. Also, as a parent volunteer with a local autism organization, I often get phone calls from parents seeking medical care for their young adult children with autism.

While some areas may have specialists known as med-peds physicians who are trained as both internists and pediatricians, most patients with disabilities receive their primary care from an internist or a family practice physician. Many physicians receive little training in caring for adults with intellectual or other developmental disabilities, and many have little experience with this underserved population.

We know from research that adults with intellectual or other developmental disabilities, such as autism or Down syndrome, frequently face a cascade of health disparities. They may:

-have complex, multiple or difficult-to-treat medical conditions
-experience difficulty accessing health care, either because of physical barriers or financial barriers
-receive inadequate health care
-have difficulties expressing their symptoms and pain
-receive little attention to wellness, preventive care and health promotion

And these adults deserve quality, patient-centered health care.

The Special Hope Foundation, of Palo Alto, Calif., saw this need and provided funding for the IDD Toolkit, a website devoted to medical information for the health care of adults with intellectual and developmental disabilities (IDD). The toolkit came online earlier this year, and is accessible on a PC, tablet or smartphone. As of early August, the site has had more than 11,000 visits with more than 33,500 page views.

The toolkit offers best-practice tools and information regarding specific medical and behavioral concerns of adults with IDD, including resources for patients and families. The website is divided into four categories: General Issues; Physical Issues; Health Watch Tables; and Behavioral and Mental Health Issues. Continue reading Disability Blog: IDD Toolkit Offers Information to Improve Health Care for Adults with Intellectual and Developmental Disabilities

Fitness for Health: a non-intimidating environment where your child can feel comfortable

We offer a non-intimidating, relaxed environment where you and your child can feel comfortable.

The first step is to arrange a time to tour our fitness facility during a complimentary 30-minute visit. During the guided tour with Marc Sickel, owner of Fitness for Health, your family can try the equipment, ask questions and meet our staff.

We feel that it is vitally important for children to be part of the decision process. If you decide that your family would like to proceed, we will schedule a time for your child to receive a Fitness for Health assessment to evaluate balance, kinesthetic awareness, locomotor skills/coordination, strength, cardiovascular endurance, sports skills and self-esteem.

At the time of the assessment, parents are asked to complete a health history questionnaire and provide reports from specialists concerning any previous injuries.

Within 48 hours of the assessment, Marc Sickel will call parents to discuss the evaluation results, and your family and the Fitness for Health staff will work together as a team to develop a personalized fitness program to match the unique needs of your individual child.

Call us at 301-231-7138 to schedule your Fitness for Health tour or assessment today!

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US Labor Dept: Opening Doors for Students with Disabilities

By Guest Blogger, TaKeisha Bobbitt, Managing Director, American Association of People with Disabilities (AAPD)

Internships are invaluable professional development tools and can open doors that education alone cannot. Every summer, college students from around the country descend upon Washington, D.C., vying for internship experiences through a competitive selection process. Many individuals use these entry-level opportunities to make contacts and explore opportunities for full-time employment after graduation.

Unfortunately, students with disabilities are often underrepresented in the pool of new interns filling spaces in programs across the nation’s capital. The American Association of People with Disabilities (AAPD) internship program was designed to address this gap, providing interns with disabilities hands-on work experience and mentoring and preparing them to succeed in the workforce. It offers undergraduate, graduate and law school students, along with recent graduates with disabilities, a 10-week work experience and living stipend for the summer.

Each summer, anywhere from 10-30 interns participate. In the preceding months, they undergo a rigorous application and selection process, which includes submission of a resume, essay questions and letters of reference. Finalists also participate in a minimum of two interview sessions. During this stage, they meet with panels of community and business leaders who assess their leadership skills and potential. Each phase of the process connects with necessary professional development skills that will help applicants during their career journey. Continue reading US Labor Dept: Opening Doors for Students with Disabilities

The Sibling Support Project

The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns:

“We believe that disabilities, illness, and mental health issues affect the lives of all family members. Consequently, we want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents’ and providers’ understanding of sibling issues.

Our mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents’ and providers’ awareness of siblings’ unique, lifelong, and ever-changing concerns through workshops, websites, and written materials.”

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Access Community Lecture Series

Access Ministry is the “disability ministry” of McLean Bible Church. While the word “disability” is used, we prefer to think of Access as a ministry of “possibilities” not defined by what can’t be done but rather by what all individuals regardless of ability level can achieve in God’s house. We believe in Access to God for all His people and celebrate our uniqueness and differences. It is our hope to develop all people into fully-devoted followers of Christ, integrated into the church.

Each school year, beginning in September, Access sponsors monthly lectures focusing on disability issues by experts from the Washington, DC, area. These workshops are designed for parents, families, individuals and professionals in the disability community and are open to the public free of charge. RSVP is requested, but not required. Access encourages you to invite a friend that may also want to hear these incredible speakers.

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