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

/in /by The Arc

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.

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Red Hot on the Red Carpet Returns to Convention in 2013

/in /by The Arc

For 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. Take advantage of early bird discounted rates when you register before July 5.

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Talking About Inclusive Education

/in /by The Arc

Amy 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.

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Buzz Building Around The Arc’s National Convention

/in /by The Arc

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.convention.thearc.org.

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The Best Tan Is No Tan: Learn to Protect Your Skin

/in /by The Arc

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 10:00 a.m. and 4:00 p.m.) 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!

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

/in /by The Arc

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.

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Raising Awareness of Williams Syndrome

/in /by The Arc

by Mike McFall, Williams Syndrome Association

In 2010, the Williams Syndrome Association designated the first 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.

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What Does Your Family Need?

/in /by Ann Cameron Williams

Families which include members with intellectual and developmental disabilities (I/DD) have a variety of needs from obtaining healthcare to navigating social service systems to emotional support. And, these needs can be substantially different from the needs of families who do not have a member with I/DD. That is why organizations such as The Arc exist: to help families meet those unique needs.

Now, an international team of researchers is working to identify and prioritize these needs and compile the data into a report that will help organizations such as The Arc, early intervention programs, family-related and human service organizations better understand what needs are the most critical to families and seek funding to provide for those needs.

Can you help? If you are the parent of a child with I/DD from birth to age 21, you can take this online survey, called the Family Needs Assessment (FNA) and help us understand exactly what your family needs to thrive.

But the FNA survey is not just about collecting research. In addition to providing crucial information, the survey is designed in such a format that families can use it in their planning processes for obtaining specific family support. And it will provide immediate links to the best online resources for each type of need identified.

The survey consists of 75 “needs statements” that relate to 11 areas of family life including health, daily care, social relationships, family interaction, spirituality and economics among others. Each individual taking the survey will rate the extent to which specific “needs statements” represent a need for their family on a 5-point scale. If you would like to take the survey, it should only take 15-20 minutes to complete. Find out more and start the survey at the at the Beach Center on disability at the University of Kansas website.

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You’re Invited to Achieve Momentum at The Arc’s National Convention

/in /by The Arc

2013 National ConventionWhat does it take to achieve momentum in your life, in your work, and in the movement for people with intellectual and developmental disabilities?

Join The Arc for a National Convention filled with innovative ways to help you do just that – new information, new programs, new technol­ogy, and new ways for you to keep moving forward toward your goals! Register now to attend the premiere event for the intellectual and developmental disability movement in Bellevue, Washington just outside of Seattle August 3-5 and join hundreds of other individuals, families, advocates, experts and professionals in the field for three days of informative sessions, unique events and opportunities to connect. Here are just a few reasons to make your reservations now:

  • Cutting-edge technology demonstrations – discover the latest technology innovations from organizations like Verizon, Microsoft and more – and examples of creative ways chapters of The Arc are using assistive technology.
  • Dozens of sessions focused on supporting self-advocacy, cultural diversity, building our grassroots network, using technol­ogy and innovations in family support.
  • A vibrant Marketplace with goods and services catering to you including The Arc Store and Entrepreneur Alley which spotlights microbusinesses run by individuals with I/DD.
  • Meet-and-greet events just for self-advocates and siblings hosted by The Arc’s National Council of Self Advocates and National Sibling Council.
  • Red Hot on the Red Carpet and The Arc & Sprout National Film Festival – we’re bringing back a crowd favorite from 2012 and rolling out the red carpet again as a lead in to our always popular film festival featuring shorts for, by and about people with I/DD.
  • A Night of Laughter and Dance: an opening night event from our local host with live entertainment from Jet City Improv and two local bands with self-advocate musicians.

And, if you book before July 5, you can take advantage of registration discounts and special room rates at the Hyatt Regency Bellevue on Seattle’s East Side. See you there!

Special Thanks to Our Sponsors: CARF, Essential Learning, Hammer Travel, Marsh, MediSked, MetLife, and Rest Assured

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Get in the Game: Sports and Autism

/in /by The Arc

Sports are a huge part of many kids’ lives. Not only is it a social gathering for adolescents to meet friends and learn to be part of a team, it also encourages healthy active lifestyles, and as we know exercise is important for everyone – disability or not. Some parents might think that having a child with autism means playing sports may never be a reality for their child. However, sports can be just as beneficial, if not more, for children with autism.

While many team sports such as basketball or soccer may be a little bit more challenging to grasp due to gross motor coordination, sensory problems or communication issues, individual sports may be the perfect fit. Individual sports like swimming, track and field and karate provide structure and team camaraderie while at the same time being very individualized. This perfect mixture could be very beneficial in allowing the child to fully participate in the activity at their own level while not having the social anxiety that can be brought on from other involved team sports. In a basketball game there has to be that thought process of knowing when the ball is going to be passed to you or who to throw to next. A sport like swimming permits the child to focus in on one skill only helping to keep their attention and reducing that social anxiety that can be brought on in other team sports.

This team aspect, while helping them develop their motor skills, will also help them develop their social skills too by providing the feeling of being a valued member of a group and increasing self-confidence. Individualized sports also eliminate the fear that your child will be picked last for the team or “ride the bench” the whole game, creating a sense of failure and rejection in their heads and turning them away from the sport completely. While a child may come in last in a track race, putting the focus on just finishing the race and having their teammates cheer them on to the finish line can be a great self-esteem booster.

Another great aspect of individual sports is the ability to continue participating throughout one’s lifespan. Individuals with disabilities have a higher prevalence for obesity and one large contributor to that can be a sedentary lifestyle (although other factors are also influential). Encouraging fitness at a younger age will help to find fun inclusive ways to exercise that can be carried on into their adult years too.

The Arc’s programs such as HealthMeet and the Autism NOW Center are great places to turn to for valuable information and resources on fitness and healthy living for individuals with autism and other developmental disabilities. Autism NOW’s website contains printable handouts with dietary recommendations and tips that promote healthy eating habits as well as a Health Promotion Guide containing ideas and suggestions for developing and sustaining a healthy, active lifestyle for individuals with autism.