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.

The Arc and Specialisterne USA to Work Together on US Expansion of Model to Employ People with Autism in Tech Industry

Specialisterne logoWashington, DC – As the World Economic Forum kicks off in Davos, Switzerland, The Arc and Specialisterne USA are announcing a new agreement to help Specialisterne replicate its successful model of employing people with autism in the tech industry in the United States.  By utilizing The Arc’s strong network of chapters, Specialisterne USA and The Arc will expand the model to sites across the country with a goal of serving technology companies nationwide.

Specialisterne USA is a 501(c)(3) charitable organization established by The Specialist People Foundation, a not-for-profit Danish organization that works to create meaningful employment for people with autism and similar challenges by building relationships with technology companies that need employees whose skill sets match the characteristics of many people on the autism spectrum.  In 2013, The Specialist People Foundation entered into a partnership with technology company, SAP AG, while Specialisterne USA entered into a partnership with Computer Aid, Inc. (CAI), to provide employment opportunities for people with autism as software testers, programmers, data quality assurance specialists and other technology positions.  Specialisterne USA , with operations in the Midwest, Mid Atlantic and Southwest regions of the US, and The Arc’s New York City chapter, AHRC New York City, began working to pilot replication of the Specialisterne model late last year in New York City.

Participating chapters of The Arc will be trained by Specialisterne USA to recruit, assess and train people with autism to work in technology jobs at competitive wages alongside people without disabilities.  Within three years, Specialisterne USA aims to have Specialisterne operations in twelve regions of the United States, working with employers to expand their recruitment to include people with autism and similar challenges and providing a range of job coaching and mentorship services to employers and individuals with autism.

“This is a huge opportunity for individuals with autism to be trained for and employed in the high-tech sector where the career opportunities are promising.  We are excited to launch this partnership with Specialisterne USA because we know it has worked in European markets, and we have our work cut out for us here in the United States to close the huge unemployment gap facing people with intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.

Thorkil Sonne, Specialisterne Founder and President of Specialisterne USA, says that the partnership with The Arc will be a key step in spreading the Specialisterne model throughout the United States. “We consider this a very important step on our journey to enable 100,000 jobs in the USA. The Arc is a perfect partner as the largest organization in the US working with people with disabilities and we have already had a very positive experience working with the New York chapter of The Arc. At the World Economic Forum in Davos, I have the opportunity to discuss with business leaders how The Arc and Specialisterne can help the corporate sector in the US get access to a huge untapped pool of talent,” said Sonne.

About Specialisterne and The Specialist People Foundation

The Specialist People Foundation, which owns the Specialisterne concept and trademark, works to enable one million jobs for people with autism and similar challenges through social entrepreneurship, corporate sector engagement and a global change in mind-set. The foundation works with partners and stakeholders around the world to bring about a vision of a world where people are given equal opportunities in the labor market. Specialisterne, which translates from Danish as “The Specialists”, is a socially innovative company where the majority of employees have a diagnosis on the autism spectrum. Specialisterne harnesses the special characteristics and talents of people with autism and uses them as a competitive advantage. Employees work as business consultants on tasks such as software testing, programming and data-entry for the public and private sectors. To date, Specialisterne has operations in 12 countries around the world, including the US, Canada, the UK, Germany, Poland and Spain.

The Arc Receives $25,000 from MetLife through Successful Social Media Campaign

MetLife presents The Arc with $25,000This week, The Arc was presented a check for $25,000 from the MetLife Foundation. In December, The Arc was chosen as the beneficiary of a social media campaign MetLife was conducting in conjunction with its MetLife Center for Special Needs Planning.  For one day, MetLife donated $1 for each “like” of a post about The Arc and $2 for each comment (the cap for donations was $25,000).  The response was overwhelming with more than 38,000 “likes” and 2,000 comments. This was the highest response MetLife has ever received with a social media campaign.

“On December 17, we partnered with MetLife and raised $25,000 for The Arc to help individuals with intellectual and developmental disabilities and their families.  The overwhelming response of our followers online highlighted how strong our movement is.  Support of organizations like MetLife enable us to continue our work to promote inclusion and civil rights for individuals with intellectual and developmental disabilities, and we thank them their generous support,” said Peter Berns, CEO of The Arc.

“It’s rewarding to be able to give to an organization that helps the families we serve.  And what better time than the season for giving,” said Kelly Piacenti, Assistant Vice President, MetLife Center for Special Needs Planning.

The Arc and UCP React to Offensive Language to People with Disabilities in The Wolf of Wall Street

The Arc and United Cerebral Palsy released the following statement in response to the use of the r-word and the offensive depiction of cerebral palsy in the new film The Wolf of Wall Street.

“The Wolf of Wall Street is getting a lot of attention for how it offends audiences on many levels, but one aspect that hasn’t been discussed is its use of the r-word and its unacceptable mockery of people with cerebral palsy.  Hollywood just doesn’t seem to get it.  More than five years after people with disabilities protested at theaters across the country against Tropic Thunder, a film which included a highly offensive portrayal of people with intellectual disabilities, the industry is still using language and jokes that hurt audience members and don’t add any value to the artistic intent or point the film is trying to make,” said Peter Berns, CEO of The Arc. “Among moviegoers who have paid to see The Wolf of Wall Street in recent weeks are people with disabilities, their parents, siblings, and friends.  It’s time for Hollywood to wake up and see that their customers deserve better.”

“The Wolf of Wall Street’s gratuitous use of an offensive term for people with disabilities, as well as its depiction of cerebral palsy, is outrageous. For more than 60 years, UCP has been working to ensure that people with cerebral palsy and other disabilities can live their lives without limits—including equality, inclusion and respect in our society—but it is very clear that our fight is far from over,” said Stephen Bennett, President and CEO of UCP. “While we understand that the film’s content is deliberately distasteful and excessive, it does not excuse it. It is astonishing that the film’s producers, director and actors deemed this kind of language and portrayal to be acceptable—they can do better, and we urge them to.”

Statement of Consortium for Citizens with Disabilities Social Security Task Force Regarding Recent New York City Disability Fraud Allegations

Approximately 100 former police officers, firefighters and others were indicted this week in New York City for allegedly fraudulently obtaining Social Security Disability Insurance Benefits. The allegations are extremely troubling, and if true, these individuals’ actions are nothing short of deplorable.

The Consortium for Citizens with Disabilities Social Security Task Force condemns any misuse of the Social Security disability programs. Any individual who seeks to abuse vital programs like Social Security does so at the expense of the millions of disabled workers for whom benefits provide essential economic security — and must be brought to justice.

At the same time, we must take care not to paint Social Security’s disability programs with the brush of the few who aim to defraud it, without putting them in the context of the millions of individuals who receive benefits appropriately and for whom Social Security is a vital lifeline.

Social Security’s disability programs are a core component of our nation’s Social Security system, which keeps millions of hardworking Americans and their families out of poverty. Extremely strict eligibility requirements mean that fewer than four in ten applicants are approved for disability benefits, even after all stages of appeal. Demonstrating eligibility requires extensive medical evidence, and many individuals are denied benefits despite significant disabilities and chronic illnesses. Benefits are modest but vital – averaging just over $500 per month for Supplemental Security Income and approximately $1,130 per month for Social Security Disability Insurance. For many, disability benefits make it possible to secure stable housing and purchase food, life-sustaining medications, and other basic necessities. Disability benefits can be the difference between life and death for many Americans.

The Social Security Administration works hard to ensure program integrity, but it requires adequate resources to do so. It has been deprived of adequate administrative resources to conduct necessary program integrity work for several years. Congress holds the purse strings to enable the Social Security Administration to ensure that benefits are paid to the right person, in the right amount, and at the right time— and to implement the array of critical safeguards that exist in current law.

We encourage anyone who suspects abuse of the Social Security disability programs to report it via Social Security’s hotline 1-800-269-0271 or online at www.oig.ssa.gov.