National Convention Preconference Dedicated to Self Advocacy

Joe Meadours at ConventionThe Arc’s annual National Convention kicks off August 3 with a preconference dedicated to fostering self-advocacy among people with intellectual and developmental disabilities. Join us on Seattle’s East Side for “Oh, the Possibilities: Self-Advocates as Leaders in Your Community”  hosted by The National Council of Self-Advocates of The Arc.

We will explore the all of the possibilities for self-advocate leaders in the community with training on effective communication, networking, building leadership skills, developing funding for self-advocacy group startups, and a demonstration of Self-Advocacy Online, a website dedicated to the self-advocacy movement. Don’t miss a special presentation of the history of the disability movement and civil rights and an art activity to get the crowd going as well.

Register now! A separate preconference registration is required in addition to your Convention registration but is only $15 for self-advocates! And, take advantage of early bird discounts on Convention registration when you sign up before July 5! Get the full Convention schedule and check out the other special events we have planned at www.thearc.org/convention.

Equal Access to Relationships and Sex for People with Intellectual and Developmental Disabilities…It’s About Time

A recent story in The Journal (Martinsburg, WV) about the debate over whether people with disabilities should legally be able to use sex surrogates touches on a very real yet often ignored issue within the disability community: rights regarding sexuality.  People with disabilities are often seen as asexual and not supported to fully enjoy and express their sexuality at the same level as those without disabilities.

Here in the U.S., we struggle with fully understanding and accepting sexuality, especially if we are talking about our own children. And this is true whether or not our children have disabilities, but can complicate the situation much more for parents of children (including adult children) with disabilities. This international debate draws attention to a very real problem – sexuality typically is not considered a valid need that demands focused attention. And yet, who can measure the actual effects this inattention has on the disability community at large?  For example, who knows what “behavioral issues” and other problems could be averted if sexual needs of people with disabilities were, at the very least, being acknowledged? What if their God-given relational and sexual needs were actually supported and even celebrated?

All moral arguments aside, have we considered every possible option to this dilemma and actively supported people with disabilities to pursue their own sexual fulfillment?  Consider this: How likely is it that people with disabilities, especially intellectual disabilities, have access to consistent, effective education on ways to understand their own sexual feelings and act on those in safe and healthy ways? Are they being taught how to build safe and healthy relationships and then given opportunities to do so? Do they have enough opportunities to meet that special someone who could become a future spouse, boyfriend or girlfriend? Another consideration is the disproportionate amount of sexual trauma that people with disabilities face on any given day. The rate of sexual violence is twice that experienced  by people without disabilities, and those with cognitive disabilities face the greatest risk of all. Is adequate counseling provided to victims so they are able to move forward confidently and securely in their own sexuality? What is the true effect of so much sexual violence within the minds, hearts and bodies of people with I/DDs?

Whether parent or professional, we all have an important role to play in supporting people with intellectual and developmental disabilities to achieve their own relationship bliss (or at least try to as this can be elusive for many of us with or without disabilities), and that may or may not include sexual activity. By providing equal access to this basic human right, and refusing to treat people with fully functioning hearts and sex drives as if they were still children, or in some way asexual, a door is open to explore the full range of what it means to be human, including within the realm of sexuality. For ideas and resources on how to support this cause, visit Autism NOW’s web site: http://autismnow.org/articles/resources-for-learning-about-sexuality/

Read The Arc’s position on sexuality.

The Arc Responds to New Study That Highlights Housing Crisis for Individuals with Disabilities on Supplemental Security Income

Washington, DC – This week, the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force released a study, Priced Out in 2012. This publication is released every two years. The 2012 results show that the national average rent for a modestly priced one-bedroom apartment is greater than the entire Supplemental Security Income (SSI) benefit for a person with a disability. The Arc’s 700 chapters have a long history of supporting community living for individuals with intellectual and developmental disabilities (I/DD). Many chapters of The Arc provide programs and services to assist individuals with disabilities who are looking to rent or buy a home or find other community living opportunities.

“This study highlights a growing problem for individuals with disabilities – the lack of accessible and affordable housing. People with disabilities deserve the opportunity to live independently in the community with their peers, though as highlighted by Priced Out in 2012 SSI beneficiaries face severe obstacles to that opportunity. While progress has been made in the last year with the new Section 811 PRA Demonstration, we still have a long way to go. Having a safe place to call home is a basic human right and we have a responsibility to ensure individuals with disabilities are given the chance find a home in the community they choose. The Arc calls on Congress to adequately fund the Section 811 PRA Demonstration to help address the housing crisis for people with disabilities,” said Peter V. Berns, CEO of The Arc.

SSI is a federal program that provides income to people with significant and long-term disabilities who are unable to work and have no other source of income. According to Priced Out in 2012, a single person with a disability living in the community received an average monthly SSI payment of $726 in 2012 to cover all basic needs, including housing. The study also revealed that as a national average, people with disabilities receiving SSI needed to pay 104 percent of their income to rent a one-bedroom unit priced at the Fair Market Rent. The full results of the study can be viewed on the TAC website.

The Department of Housing and Urban Development (HUD) Section 811 Project Rental Assistance (PRA) Demonstration program is an innovative new model that allows states to effectively target rental assistance to enable people with significant disabilities to live in the community. Section 811 is the only HUD program dedicated to creating inclusive housing for extremely low-income people with severe disabilities, including SSI beneficiaries.

Red Hot on the Red Carpet Returns to Convention in 2013

Red Hot on the Red CarpetFor those of you who attended The Arc’s 2012 National Convention in Washington, D.C., you may remember the “Red Hot on the Red Carpet” event leading up to The Arc & Sprout National Film Festival. Convention attendees had a chance to walk the “red carpet,” pose for paparazzi photos and even be interviewed by The Arc’s version of Ryan Seacrest.

Just take a look at these pictures of everyone hamming it up with feather boas, Hollywood-style sunglasses and their own “Academy Awards.” It was an evening to remember and such a popular part of that year’s festivities that we’re bringing it back for an encore.

The Arc’s National Convention in Bellevue, Washington (on Seattle’s East Side) this August 3-5 will again feature a “Red Hot on the Red Carpet” event. And, we will again treat attendees to a screening of short films by, about and for people with intellectual and developmental disabilities at The Arc & Sprout National Film Festival.  Don’t miss this special evening of fun to cap off three full days of innovative and enlightening sessions at this annual gathering of the I/DD community.

We’re expecting 700 or more individuals with I/DD, family members, professionals in the field and staff from The Arc’s chapter network along with special guest, acclaimed author Buzz Bissinger. Sessions will focus on technology, advocacy and public policy, supporting families, employment and more. Plus there are two pre-conferences dedicated to self-advocacy and leadership. Check out the full schedule and register now at www.thearc.org/convention. Take advantage of early bird discounted rates when you register before July 5.

Talking About Inclusive Education

Inclusive Class podcastAmy Goodman, Co-Director of the Autism NOW National Autism Resource and Information Center, will join The Inclusive Class Podcast on Friday, May 17 at 9:00 a.m. EST for a 30-minute chat about inclusive education for students with autism and other developmental disabilities.

The Inclusive Class is hosted by Nicole Eredics, founder of the online resource, The Inclusive Class and Terri Mauro, author of 50 Ways to Support Your Child’s Special Education and The Everything Parent’s Guide to Sensory Integration Disorder.  Nicole is an elementary educator who has spent over 15 years teaching in an inclusive classroom setting creating and discovering solutions for integrating students with special needs in the classroom.  Terri Mauro is one of the most recognized experts on special education and special needs parenting on the Internet.

Tune in for Amy’s unique perspective as a person who identifies as being on the autism spectrum on Blog Talk Radio on May 17. Also, you can access the podcast after it airs on Blog Talk Radio, on iTunes and on The Inclusive Class website.

Autism NOW is a project of The Arc funded in part by the Administration on Intellectual and Developmental Disabilities and was created to provide quality, vetted information and resources for individuals on the autism spectrum and with other developmental disabilities.

There’s a Buzz Building around The Arc’s National Convention

Buzz Bissinger and son Zach

Buzz Bissinger with son Zach

Planning is well underway for The Arc’s annual National Convention August 3-5 outside of Seattle, WA. And we’re already starting to hear a buzz about the program we have planned for you this year. People are starting to talk about our keynote speaker, Buzz Bissinger.

The excitement is building to have such a noted best-selling author (Three Nights in August, Friday Night Lights) speak to The Arc about his latest book. But Buzz Bissinger is not just a celebrity, he’s a parent. His sons Zach and Gerry were born prematurely in 1983 and Zach was born with significant intellectual disabilities. Recently, Buzz set out to document his special relationship with Zach in the book Father’s Day: A Journey into the Mind & Heart of My Extraordinary Son. The story revolves around a cross-country road trip Buzz planned to revisit all of the places they had been together during Zach’s life. During the trip, Zach ultimately teaches Buzz a vital lesson: character transcends intellect. Buzz comes to realize that Zach’s approach to life, while different, has a sturdy logic that deserves to be respected.

Father’s Day will resonate with any parent who has a child that is “different.” And all parents will recognize themselves in Buzz as he wrestles with the questions that tug at every mother and father as their children grow up. The Arc’s National Convention is your chance to hear Buzz’s perspective on what it means to be a parent of a child with I/DD so make plans now to join us in August. Find out more about the full program, other planned special events and register today at www.thearc.org/convention.

The Best Tan Is No Tan – Learn to Protect Your Skin!

Woman applying sunscreen

Photo by Bill Branson, courtesy of the National Cancer Institute

May is here and that means Memorial Day Weekend lies ahead, which for many is the kick off for beach trips and afternoons spent by the pool.  With all this fun in the sun also comes the responsibility of making sure that we protect our skin from harmful UV rays, which is why May is also Skin Cancer Awareness Month.  Even though skin cancer is the most preventable form of cancer, it is still the most common cancer in the United States with 1 in 5 Americans developing skin cancer within their life.

Being informed of the facts that can make you a higher risk for skin cancer and effective ways to help prevent and spot skin abnormalities can make a huge difference.  The number one way to prevent skin cancer is to stay out of the sun, but that’s very hard to avoid all the time.  When the sun’s UV rays are the strongest (between 10am and 4pm) it only takes 15 minutes of exposure for your skin to burn.  So when you have to be in the sun for extended periods of time it is essential to apply sunscreen that is at least SPF 15 or higher and a lip balm with an SPF about 30 minutes before going out and generously reapplying every 2 hours.  When possible, try to seek out some shade or wear a hat to help shade your face.  Certain factors such as fair skin, blue eyes, blonde hair, family history of skin cancer and freckles are all indicators that you might be more susceptible to burn easier.

The most common types of skin cancer are non-melanoma, such as basal cell and squamous cell skin cancers, which are usually not fatal.  However, without spotting the signs related to these types of cancer early on and treating it you could be at risk for them developing into melanoma.  Melanoma is the most serious type of skin cancer and the leading cause of death from all forms of skin cancer, so early detection could be lifesaving.

Individuals with disabilities are less likely to receive routine check-ups, have fewer doctor visits and be less aware of their own health disparities, so it is important that they are educated to know to look for moles, lesions and scars on their skin that could be cancerous and to say something about it right away. The ABCs for teaching what to look for are easy:

Abnormality – is one side shaped differently than the other
Border – is it irregular
Color – various shades of tan/brown, black or red
Diameter – bigger than a pencil eraser
Evolving – has it changed shape or size

Being attentive to any skin abnormalities and making sure to use sunscreen and avoid the sun during its peak hours are all steps to protecting your skin from getting damaged.  It’s essential to make sure you and your loved ones regularly check themselves for possible cancerous moles/spots and to get routine check-ups.  Through its HealthMeet project, The Arc is offering free non-invasive health assessments to individuals with disabilities in 5 pilot sites across the US to help increase awareness of these types of preventable disparities.  Contact your local chapter of The Arc if you need help finding a doctor or dermatologist that could help you and visit the National Council for Skin Care Prevention for more information and tips on sun protection.  And don’t forget the sunscreen when heading outside this summer!

The Arc Reacts to Historic Verdict on Behalf of Workers with Intellectual Disabilities

Washington, DC – Earlier this week a Davenport, Iowa jury awarded damages totaling $240 million to 32 men with intellectual and developmental disabilities who worked for Henry’s Turkey Service in Atalissa for decades.  It was the largest verdict in the history of the U.S. Equal Employment Opportunity Commission (EEOC), which filed the case, for disability discrimination and unlawful harassment.  Just one day after hearing closing arguments, the jury agreed with the EEOC that Henry’s Turkey Service subjected the men to severe harassment and discrimination that warranted punitive and compensatory damages for each man.

“While this verdict is a victory for the workers who can feel triumph knowing that the abuse they faced did not go unpunished, it’s also a harsh reminder to the disability movement that we must continue to be vigilant in this modern era of progressive employment practices to guard against these kinds of atrocities.  The abuse of these men didn’t end decades ago – it was still going on as recently as 2009, and that is unacceptable.  I applaud the U.S. Equal Employment Opportunity Commission for their pursuit of justice for people with disabilities in the workplace and urge them to continue this important work. Individuals with disabilities have the right to work in a safe work environment free of exploitation, and this verdict sends a message that this kind of abuse will not be tolerated,” said Peter Berns, CEO of The Arc.

Last year, EEOC claimed that Henry’s Turkey Service violated the Americans with Disabilities Act (ADA) by paying 32 workers with intellectual disabilities severely substandard wages.  The company denied the workers their full wages by claiming a “credit” for substandard living conditions.  In September 2012, a district court judge ordered the company to pay its former employees a total of $1.3 million for jobs they performed at a turkey processing plant in West Liberty, Iowa between 2007 and 2009 for about 41 cents an hour.  Combining last year’s ruling and this week’s verdict, the total judgment in this case is $241.3 million.

Raising Awareness of Williams Syndrome

by Mike McFall, Williams Syndrome Association

In 2010, the Williams Syndrome Association designated the 1st full week in May as “Williams Syndrome Awareness Week.”  In the years since, the number of awareness events for Williams syndrome held annually has grown tremendously, and this year, Congressman Jim Moran (D-VA) will introduce a resolution in Congress (H-Res 194) in recognition of the entire month of May as Williams syndrome Awareness month.  What do you know about Williams syndrome?

Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech, physical and occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees working at senior homes and libraries or as store greeters or veterinary aides, but few are able to work a “full-time” job, or earn a large enough salary to be self-sustaining.

Opportunities for social interaction are vitally important as well. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression and increased anxiety.  Individuals are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often do not process nuanced social cues and this makes it difficult to form lasting relationships.

Common features of Williams syndrome include:

  • Cardiovascular Disorders
  • Kidney & Gastro-intestinal Disorders
  • Similar Facial Features
  • Developmental Delays
  • Learning Disabilities
  • Hypercalcemia (elevated blood calcium levels)
  • Anxiety
  • Low birth-weight / slow weight gain
  • Feeding problems
  • Dental abnormalities
  • Hernias
  • Hyperacusis (sensitive hearing)
  • Musculoskeletal problems

This May, thousands of children and adults are expected to join the Williams Syndrome Association (WSA) to raise awareness for Williams syndrome (WS) by holding events including nearly 50 walks in cities across the U.S. including New York, St. Louis, Detroit, San Diego and Houston. Get a complete list of events and find out more about the efforts to raise awareness at walk4williams.org. And, you can find out more about Williams syndrome at williams-syndrome.org.