Let’s Go Out on March 29

#DDAwareThe Arc Plans for a National Day Out Event for Developmental Disabilities Awareness Month

March is national Developmental Disabilities Awareness Month and The Arc invites you to join us on March 29 in a grassroots initiative to help raise awareness about people with intellectual and developmental disabilities (I/DD).

What should you do? If you are a person with I/DD or know someone who has I/DD, simply make plans to go out somewhere in public on Saturday, March 29. That’s all. Just plan a day out and about enjoying the things you like to do. And, in the process help raise awareness and generate some conversation about people with I/DD during Developmental Disabilities Awareness Month. This one-day movement will serve to harness our collective power to gain allies, foster understanding, dispel myths and encourage a greater understanding among people without a disability.

Year round, The Arc works to promote and protect the rights of people with I/DD to live, learn, work and play as valued and contributing members of their communities. We fight for legislation to remove barriers to full participation and inclusion and have been successful on many fronts. But sometimes the barrier has nothing to do with the width of a doorway or an employer’s hiring practices. Sometimes the barrier is as subtle as a nervous glance from an uninformed person in line with you at the market.

So, this March 29, let’s all go out and start breaking down those social barriers once and for all. As an individual with I/DD, this is your chance to personally help raise awareness just by being yourself and participating in the things you enjoy alongside others in your community without disabilities. Make plans now to hit the movies, the park, your local shopping center or restaurant and maybe spark some conversation in the process. If you are a friend or family member of a person with I/DD, make plans now to enjoy a fun activity together in public and take the opportunity to show others that we’re all not so different after all.

Visit The Arc’s website at www.thearc.org/lets-go-out and find out more about this campaign and things you can do join in. And spread the word using the hashtag #DDAware on social media during the month of March. Follow us online at www.facebook.com/thearcus or www.twitter.com/thearcus and be sure to show us what you end up doing on March 29 by sharing your photos using the hashtag #DDAware.

Want to do more? You can help support The Arc’s national organization through a tax-deductible donation. Or you can find your local chapter at www.thearc.org/findachapter.

The Arc Reacts to Startling New Bureau of Justice Statistics on Crimes against People with Cognitive and Other Disabilities

This week, The Bureau of Justice Statistics (BJS) released a report on Crime Against Persons with Disabilities, 2009–2012 – Statistical Tables.  Disabilities are classified according to six limitations: hearing, vision, cognitive, ambulatory, self-care, and independent living.  Among persons with disabilities, those with cognitive disabilities experienced the highest rate of violent victimization (63 per 1,000).  Violent crime against persons with disabilities was nearly three times higher than the rate for persons without disabilities.  The rate of serious violent crime—rape or other sexual assault, robbery and aggravated assault—against persons with disabilities was nearly four times higher than that for persons without disabilities in 2012.

The Arc, which is running the new National Center on Criminal Justice and Disability with a grant from the U.S. Department of Justice, Bureau of Justice Assistance, released the following statement on the data:

“This startling data illustrates what we are hearing from self-advocates, parents, caregivers, and others within our chapter network and the disability community – people with intellectual and developmental disabilities are at particular risk of being victims of crimes of all kinds.  It’s a serious problem that we must no longer ignore or treat as a peripheral issue.  In order to effectively address this silent epidemic of unaddressed abuse and victimization among people with disabilities in the U.S., we must have support from all levels of the community – disability advocates, law enforcement, victim advocates, legal professionals, elected leaders, community advocates, and people with disabilities themselves who know all too well the trauma of victimization and the devastation of receiving little or no support.

“The Arc’s new Center on Criminal Justice and Disability aims to be a comprehensive resource to help turn these statistics around so that people with disabilities can lead safer lives in their community and access support and begin to heal when victimization occurs,” said Peter Berns, CEO of The Arc.

The Arc’s new National Center on Criminal Justice and Disability is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with intellectual and developmental disabilities (I/DD) under one roof.  The Center launched its new website earlier this week.

Comcast NBCUniversal & The Arc Launch Multi-Million Dollar National Partnership to Enhance Technology Access and Education for People with Disabilities

Comcast NBCUniversal LogoWASHINGTON, D.C. (February 25, 2014) – The Arc, an advocate for the rights of the disabilities community, and Comcast Corporation (Nasdaq: CMCSA, CMCSK) today announced they have formed an exciting new national partnership to support and expand digital technology opportunities for people with intellectual and developmental disabilities (I/DD).

Through a three-year commitment, Comcast and NBCUniversal will provide The Arc with $3.7 million in cash and in-kind support, including airtime, to promote The Arc’s public service announcements on cable and broadcast channels and xfinity.com. The Comcast Foundation is also providing $400,000 to support The Arc’s national digital training program and improve technology access and services by launching up to 12 Comcast and NBCUniversal Digital Literacy Learning Labs in major metropolitan U.S. cities.

The Arc will use the new funding to design an online resource center for cataloguing and rating apps, software and other digital resources. The 700 local chapters of The Arc nationwide will participate in designing and contributing resources to the online resource center.

“Thanks to Comcast and NBCUniversal, The Arc has a tremendous opportunity to raise awareness across the country about The Arc and the population we work with, and this partnership affords us the ability to launch an exciting new program that could change the lives of people with I/DD. By learning how to get online, people with I/DD are in a better position to gain employment, expand their social circle, and be a part of the increasingly growing community that exists online,” said Peter Berns, CEO of The Arc.

“We believe that technology, and the doors it opens, can be a game changer for the disabilities community,” said Charisse R. Lillie, Vice President of Community Investment for Comcast Corporation and President of the Comcast Foundation. “Through this new partnership with The Arc, we hope to connect and empower this community with technology that can improve their lives.”

Digital literacy is an important area of focus for the disabilities community and The Arc in this increasingly digital and online world. The majority of people with I/DD have limited or no access to contemporary and comprehensible information and communication technologies. In The Arc’s nationwide survey, Family and Individual Needs for Disability Supports (“FINDS”) in 2010, only 32 percent of people with I/DD were reported to be using computers; 13 percent communication devices; 4 percent GPS; and 6 percent video communications. This partnership will focus on assisting people with I/DD to gain access to and make effective and safe use of the Internet, including social media.

“Online safety is a big issue for all of us, and as more people with I/DD get online, it’s incredibly important that they learn to do so in a manner that protects them while allowing them the freedom to explore the online world. Our chapters are poised to provide this opportunity to people with I/DD, and I’m looking forward to witnessing how this program impacts their lives,” said Berns.

In early 2014, The Arc will be adding a new staff member to lead this new initiative. Look for updates on The Arc’s website, www.thearc.org, throughout the year as we build this resource.

The Arc Reacts to Department of Justice’s Inspector General Beginning Investigation into Storefront Sting Operations Involving People with Disabilities

Washington, DC – In response to the news that the U.S. Department of Justice’s (DOJ) Inspector General will be investigating storefront stings in four of the cities that used people with intellectual disability (ID) to facilitate operations without their knowledge, The Arc released the following statement:

“We are pleased that the Inspector General is taking this important step, as we requested in our letter to the agency, to find out how these operations that used people with intellectual disability could have occurred, and we hope that the results of this inquiry are the end to this practice across all operations conducted by the Department of Justice.  Because of the unique challenges people with intellectual and developmental disabilities face in the criminal justice system, as either suspects, offenders, or victims, they should not be used as pawns or informants by ATF agents or other law enforcement officials. We are working with the Bureau of Alcohol, Tobacco, Firearms and Explosives to determine how The Arc can help train federal agents to recognize intellectual disability and keep this population out of their operations,” said Peter Berns, CEO of The Arc.  “Many people needing help in the criminal justice system have disabilities that are not easily recognizable, and we hope to raise awareness among law enforcement nationwide about ‘hidden disabilities’ to increase the safety and protect the rights of people with I/DD.”

When The Arc first learned that storefront sting operations were entrapping and exploiting people with ID and then charging some for the crimes ATF agents asked them to commit, we reached out to the U.S. Department of Justice expressing our concerns.  Since then, The Arc has met with high-level officials within the DOJ and the Bureau of Alcohol, Tobacco, Firearms and Explosives to discuss these cases and offer assistance with training of federal law enforcement officials.

Spots Available for Self-Advocate Businesses at The Arc’s Convention

The MarketAre you an individual with an intellectual or developmental disability who has a small business enterprise? Or, do you know someone who might fit this description? The Arc is looking for self-advocate entrepreneurs to promote their business enterprises at our National Convention in New Orleans September 30-October 2, 2014.

Spots are available for you to have a table in Entrepreneur Alley, a part of The Marketplace exhibition space at the Convention. You can showcase your business to the more than 600 people we are expecting to attend. The Arc offers a highly reduced rate of only $100 per exhibit for those who sign up before June 1.

JennyLu JewelryAnd, for those who can’t travel to New Orleans, we also offer “The Market” – an opportunity for you to let us sell or promote items for you for only $50 plus 10% of gross sales.

Get more details here. Contact Sarah Kennedy via email or at 202-534-3720 for additional information or to sign up today. Remember the deadline for special rates is June 1. After June 1 rates will increase.

The Arc Reacts to President’s Executive Order Raising Minimum Wage for Federal Contract Workers, Including People with Disabilities

This week, President Obama signed an executive order raising the minimum wage to $10.10 an hour for federal contract workers, including people with disabilities.  This order applies to new contracts beginning January 1, 2015, and will apply to replacements for expiring contracts as well as new agreements.

“The Arc is pleased that President Obama took this step for federal contract workers, including people with disabilities.  This wage boost is an important step forward and will benefit the lives of many people with intellectual and developmental disabilities, helping them achieve their goals of greater financial independence.  We will be communicating with the Administration to ensure a smooth phase-in of this change and to encourage the Administration to put in place the infrastructure, safeguards, and supports for people who need more significant accommodations to succeed in the workplace,” said Peter Berns, CEO of The Arc.

The Arc Supports The Keeping All Students Safe Act

The Arc released the following statement in response to the introduction of The Keeping All Students Safe Act, introduced by Senator Tom Harkin (D-IA) Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, and Senator Chris Murphy (D-CT). This piece of legislation will prohibit the use of physical restraint unless a student’s behavior poses an imminent danger of physical harm to self or others, while ensuring that personnel receive proper training, that parents are aware of any restraint used with their children, and that the most dangerous types of restraint and seclusion are eliminated.

“There is no question that the safety of our children should be a top priority, and that is exactly what The Keeping All Students Safe Act is all about. The Arc is concerned with the well-being of students as well as school personnel and we support national standards that focus on preventing behavior problems and promoting a positive and safe school climate. Children with disabilities have disproportionately high rates of being restrained and secluded in schools, and reports of this type of discipline going wrong and leading to harm of the child are all too common. We urge Senators to act quickly to protect all students in all schools by supporting this important legislation,” said, Peter Berns, CEO of The Arc.

Students are not the only ones being hurt when restraint and seclusion are used.  School staff is sometimes injured when they use the practices, resulting in staff taking sick leave or even retiring from teaching.

The introduction of this legislation is paired with the release of findings of an investigation into the use of seclusion and restraints conducted by the Senate HELP Committee. The investigation found that under current law, a family whose child has been injured, experienced trauma, or died as a result of the use of seclusion or restraints in school has little or no recourse through school procedures or the courts. Examining ten recent cases where children have suffered severe trauma and even loss of life as a result of these practices, the investigation found that only eighteen states currently require parents be notified about the use of seclusion or restraints. To read the full report, visit the Senate HELP Committee’s website.

Seizure Treatment for Individuals with IDD

It’s not shocking news to hear that individuals with disabilities have more health issues than the general population.  Unfortunately, individuals with intellectual disabilities also have an increased risk of developing epilepsy.  According to the Epilepsy Foundation Metropolitan New York about 30% of children with epilepsy have another developmental disability, and the risk of children with developmental disabilities below the age of 5 years old having a seizure is 4 times higher than other children at that age.  As adults 10-20% of individuals with IDD also have epilepsy and for those individuals with and IDD and cerebral palsy it increases to 50%.  The reasoning behind this is uncertain, but it could be a because of the underlying neurodevelopmental condition that is already in existence.

There are many different treatments available to help control or reduce seizure activity within the body.  The majority of people with epilepsy take daily medications to try to control activity.  For individuals with disabilities it’s just one more mediation to be added with more adverse side effects and behavioral changes.   The side effects of these medications can also be difficult to determine with non-verbal patients.  Behaviors and mood changes might be mistakenly linked to the disability instead of the seizure mediation or they can go unnoticed by staff/caregivers.

Other forms of therapy are the vagus nerve stimulation and a Ketogenic diet.  The Ketogenic diet is a medically prescribed strict diet individuals can go on that is high in fat and low in carbohydrates and proteins. It is not completely certain how and if this diet will work (can vary by person), but it creates a metabolic change that can alter brain chemistry and limit frequency of seizures.  The stricter you follow this diet the more effective it is said to be. This diet can be a struggle for individuals with IDD that may already have other food issues present – strong dislike of smells, tastes, etc. The vagus nerve stimulator (VNS) is a small device implanted into the shoulder area that sends electrical impulses up the vagus nerve in the neck to stimulate the brain at set intervals. These impulses help to regulate the electrical activity in the brain that causes seizures.  The VNS can also be paired with a magnetic device that can turn it on when an individual feels a seizure coming by holding it up to the chest area where the VNS is implanted.

The best way to try to control seizures is to be aware of all the facts surrounding them – times of day they occur, how long they last, frequency per day, possible triggers (missed medication, overtired, dehydrated, alcohol use) and any feelings/effects afterwards. The more information you can present to your physician the better they will be able to understand the big picture of what’s happening and provide better care for the individual.  Websites such as, SeizureTracker.com  help to record all this information  in one secure place, so you can easily document the most detailed information  possible.  Learn more about SeizureTracker.com through our webinar with the site’s co-founder, Rob Moss.

For more information on seizure treatments and evaluation, check out Seth Keller’s HealthMeet webinar.

The Arc Reacts to Maryland Commission’s Report on Community Inclusion in the Wake of the Robert Ethan Saylor Tragedy

Recently, the state of Maryland’s Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities (I/DD) released their initial report.  Created in September by Governor Martin O’Malley, the Commission is charged with bringing to life accurate, effective and comprehensive attitudes, policies, and supports that will guide first responders in their work with people with I/DD.  Representing The Arc on the Commission is Joanna Pierson, Executive Director of The Arc of Frederick County.

The Commission conducted a national review of materials and approaches in the area of I/DD, examined the status of training in Maryland, looked at how community inclusion efforts over the years have impacted people with I/DD, and determined next steps in their process.  Now the Commission is hosting listening sessions across the state that The Arc will participate in.

“The Commission has started an incredibly important dialogue in Maryland about how to bring more awareness to communities across the state about people with intellectual and developmental disabilities.  Too often, we hear of instances where law enforcement is approaching a situation involving a person with an intellectual or developmental disability from a crisis perspective.  We need to change this approach so that our first responders are first made aware of how to engage people with disabilities so that things don’t escalate into a crisis as they did with Robert Ethan Saylor.  The Arc Maryland is ready to provide this training support with a program that involves people with disabilities, as suggested by the Commission.  We think it is vitally important that any training and awareness brought about by this Commission’s work should be inclusive of all types of intellectual and developmental disabilities so that we can make our state safer and more inclusive for all,” said Kate Fialkowski, Executive Director, The Arc Maryland.

In October, The Arc Maryland conducted an introductory training entitled “Law Enforcement Response to Developmental Disabilities” at the Governor’s Fall Criminal Justice Conference.  In an “Ask Me” format, individuals with developmental disabilities led this training.

At the national level, in October The Arc was awarded a two-year grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance (BJA) to develop the National Center on Criminal Justice and Disability.  This is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.  The goal of this project is to create a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system – both as victims and suspects/offenders.

“Just a few months into this project, and we are already seeing just how great the need is nationally for resources, information, training, and support around this issue. It shouldn’t take another tragedy like the death of Robert Ethan Saylor to bring the kind of focused attention this issue deserves, and we look forward to working with the Commission to make Maryland’s communities safer for everyone,” said Peter Berns, CEO of The Arc.

Wings for Autism™ Program Takes Off Nationally in Seattle

Wings for AutismSeattle, WA – Tomorrow, The Arc will hold its first Wings for Autism™ event at Seattle-Tacoma International Airport​ (Sea-Tac), in partnership with Alaska Airlines, the Port of Seattle, the Transportation Security Administration, and The Arc of King County. Wings for Autism™, one of The Arc’s newest national initiatives, is an airport “rehearsal” specially designed for individuals with autism spectrum disorders, their families and aviation professionals. Originated by the Charles River Center, a local chapter of The Arc in Massachusetts, and the Massachusetts Port Authority, Wings for Autism™ is designed to alleviate some of the stress that families who have a child with autism experience when traveling by air. The program provides families with the opportunity to practice entering the airport, obtain boarding passes, go through security, and board a plane.

Wings for Autism™ also gives airport, airline, TSA professionals and other personnel the opportunity to observe, interact and deliver their services in a structured, learning environment. This experience is equally useful for families that have a member with other intellectual or developmental disabilities (I/DD) that are concerned about the ability of their family member to travel.

Thirty one families from the Seattle area have signed up to benefit from this experience.  The day will kick off with families arriving at the airport at 11:20am. Upon arrival, event attendees will check in to receive their boarding pass, go through security, and be greeted at the gate prior to boarding the plane. A small reception will be held afterwards.

“We are excited to begin national expansion of Wings for Autism™ program in Seattle. For parents of children with autism spectrum disorders, everyday tasks can sometimes prove to be far more difficult for their child.  Air travel can prove particularly challenging between clearing security, the overwhelming noises, and harsh lights. This program will not only alleviate the stress children and their parents may feel, but help educate airport and airline professionals about how best to serve children with autism or other intellectual and developmental disabilities in the future.  We are grateful to our partners on the ground in Seattle – Alaska Airlines, the Port of Seattle, the Transportation Security Administration, and The Arc of King County – who are committed to making air travel possible for families with children with autism and other intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.

“We’re honored to host Wings for Autism at Sea-Tac Airport,” said Mike Ehl, director of aviation operations for the Port of Seattle. “The program literally opens a window to the world for families with children with autism and other disabilities by demystifying the airport experience.”

“Our employees are trained to provide the highest level of security and customer service to all who pass through the security checkpoint,” said Jeff Holmgren, TSA Federal Security Director at Seattle-Tacoma International Airport.   “TSA welcomes the opportunity to work with these families to demystify the aviation security screening process.”

“Everyone deserves a nice vacation with their loved ones. That’s why it breaks my heart to think of the families who have never been able to travel outside of the Pacific Northwest. Most families take airplane travel for granted, but families who care for children with autism often fear getting on a plane, or even going through security at the airport. Thanks to the support of our Wings for Autism partners and volunteers, our goal is to produce this event several times a year, enabling all families to travel with more confidence, making great vacation memories together,” said Sylvia Fuerstenberg, Executive Director of The Arc of King County.