Take Charge of Your Health Online

Self-Advocacy OnlineBy Kerry Mauger, Training Coordinator, The Arc

The Arc’s HealthMeet initiative has partnered with The University of Minnesota to develop two educational modules about exercise and wellness to be featured on an innovative new website called Self-Advocacy Online. This site is a great resource for people with an intellectual disability to gather information, find self-advocacy groups in their area, learn new ideas, and hear stories from other self-advocates just like them who have similar fears, dreams and aspirations in life.

Now on the site, self-advocates can access lessons to help guide them in living a healthier lifestyle and finding ways to become more active and increase their fitness level.  These digital lessons are created with input from a team of self-advocates to ensure that all the material included in them is accessible to individuals with all types of disabilities.  Each module uses accessible language, has a self-advocate speaking for the audio portion and uses entertaining pictures and short video clips to reinforce the messages in the lessons.

The first module, “Taking Care of Myself,” is an overview of what it means to live a happy, healthy life.  It explains the big-picture view that to be healthy and happy it means taking care of your body as well as your mind, and learning to develop healthy relationships with people that support you.  The second module, “Exercise,” is all about the different types of exercise (cardio, strength and stretching) that your body needs in order for it to be healthy. It explains why it is essential that we exercise, how many times a week is recommended and uses short video clips to show different exercises that you can do along with the instructor.

These resources help teach healthy lifestyle lessons and are available for self-advocates to watch and refer back to at their own pace as often as they like.  Learning is a process is that never stops.  Through the HealthMeet project, The Arc plans to build two additional healthy lesson modules in the upcoming year to help empower self-advocates to take charge of their own health and wellness.  Resources like Self-Advocacy Online are a stepping stone to help individuals with disabilities live a more independent healthier life.

The Arc Welcomes New Leader in Arizona

The Arc of ArizonaThis month, The Arc of Arizona welcomed Jon Meyers as their new Executive Director. His 25 years of executive leadership and development work in the philanthropy, higher education, and social service fields will serve as tremendous assets to The Arc of Arizona as they begin to move into a new era.“Jon Meyers is well suited to take over as Executive Director of The Arc of Arizona. His dedication to professional excellence paired with his experience working with children on the autism spectrum make him an ideal candidate to lead our state chapter in Arizona. Under his leadership, our chapter network in Arizona is sure to thrive, and I know that individuals with disabilities in communities across the state will benefit from his leadership,” said Peter Berns, CEO of The Arc.

The Arc of Arizona is a 501c3 agency. It currently has over 1000 members with 10 local chapters. The Arc of Arizona supports itself through fundraising efforts, private donations and program contracts with the Division of Developmental Disabilities. The volunteers and staff who comprise The Arc of Arizona are individuals with intellectual and developmental disabilities (I/DD), their parents, friends, educators and professionals in the human services field. Meyers sees new opportunities on the horizon to build additional support for The Arc’s work in Arizona.

“In the months and years to come The Arc of Arizona will be integral to expanding service and educational offerings to people with I/DD and those who love and care for them. We want to be at the forefront of this movement to make all Arizonans aware of the contributions made by people with intellectual or developmental disabilities to our society and our lives,” said Meyers on his vision for the organization.

Meyers previously served as Executive Director of The Arts Council of the North Valley in Anthem, Arizona, The Leukemia and Lymphoma Society in Phoenix, Arizona, and as Senior Development Officer/Major Gifts Officer for Arizona State University/ASU Foundation.  His most important role is that of father and husband. As parent of three boys and former school teacher, he has experienced firsthand the challenges – and the joys – of working with people with I/DD.

“For nearly 50 years, The Arc has been helping Arizonans with I/DD, and their loved ones, lead full and happy lives. I am privileged to serve this organization at a time when the challenges are great but the opportunities are even greater. We have much work ahead of us to ensure that all Arizonans with disabilities are able to lead meaningful lives in the community. With the commitment of our Board, staff, and volunteers — as well as the compassion and generosity of our friends and neighbors across the state — The Arc of Arizona will continue to be the leading voice advocating for individuals with disabilities,” said Meyers on his new role with The Arc of Arizona.

The Arc’s Recycling Initiative Expands With the Help of The Alcoa Foundation

Through funding from the Alcoa Foundation, The Arc will be supporting three additional chapters in their recycling initiatives.  Each chapter’s program supports employment and skill development for individuals with intellectual and developmental disabilities (I/DD) in collaboration with local Alcoa facilities.

“We could not be more excited to be expanding our recycling initiative, and are grateful to The Alcoa Foundation for their generous support.  Through our recycling initiatives we have not only been able to support individuals with I/DD who want to work, but have been able to provide essential training to ensure they can grow in their current fields. We look forward to supporting important recycling programs across the country while showing that individuals with disabilities have a lot to offer in these important cutting edge jobs,” said Jonathan Lucus, Managing Director, Employment & Transition Services for The Arc.

The goal of The Arc’s recycling initiative , in collaboration with local Alcoa facilities, is to create employment and skills development opportunities for individuals with I/DD and to further the importance of recycling as a means for environmental sustainability in local communities. The initiatives range from textile recycling to bottle, to collection and recycling of shipping waste such as cardboard and plastic to a bottle and can return program. The new sites for The Arc’s Recycling Initiative and their grant amounts are listed below:

  • The Arc Knox County – $25,000
  • The Arc of Montgomery – $ 20,000
  • Ulster Greene – $25,000

The Arc Takes Bellevue, Washington by Storm

Self-Advocates working togetherEarlier this month, The Arc’s network of disability advocates and professionals descended on Bellevue, Washington for The Arc’s Annual Convention. The three day event was an exciting mixture of education, inspiration, and of course fun.

As always, having more than 600 of our advocates joining together proved to be a moving and powerful experience.  There is no better way to see the diversity and power of our network than when our chapters join together and share their many accomplishments. While our chapters have a lot of variety, they have a lot in common.  Convention allowed many to see how our chapters are working with National Initiatives of The Arc in different locations across the country for a common cause. Many of our chapters even had the opportunity to present together during concurrent sessions on a variety of topics including sibling workshops, self-advocacy programs, and technology.

A highlight of the weekend for many was getting to know Buzz and Zach Bissinger. The honesty and heart with which Buzz wrote Father’s Day was present when Buzz gave his keynote address. While Buzz and Zach captivated the audience, the event was also special for them.  When you attend one of our national events you leave knowing more about The Arc and its robust network.  We leave an impression on everyone we touch.

This year’s technology focus was also a great hit with amazing tech demos from The Arc of Baltimore, The Microsoft Store, and The Coleman Institute. Exclusive access to the Microsoft store gave a select group of attendees some hands on experience and training from experts.  And, our closing plenary offered amazing insights from Jack P. McArtney, Director, Corporate & Community Responsibility; Global Corporate Citizenship Group of Verizon, Inc. and Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group.

To wrap things up, we rolled out The Arc’s red carpet prior to The Arc & Sprout National Film Festival! Self-advocates, other attendees, and national staff strutted their stuff on the red carpet and brought a bit of Hollywood glam to our closing event.

Planning is already in the works for 2014’s Convention in New Orleans from, September 30 – October 2. Save the date and join us for another exciting event!

Happy Birthday Social Security!

Social Security CardsThis week marks the 78th anniversary of our nation’s Social Security system. At The Arc, we know that Social Security is a lifeline for over 9.6 million beneficiaries with disabilities, including many people with intellectual and developmental disabilities (I/DD).

Social Security improves our lives in so many ways. It provides basic economic security for workers and their families – including children and spouses with disabilities –  when a worker retires, dies, or acquires a significant disability. It helps people with disabilities who work all their lives enjoy a secure retirement. And it provides access to health insurance through Medicare, enabling many people with disabilities to get the medical care they need to survive and live in the community.

Social Security covers nearly all Americans, or an estimated 163 million workers. In comparison, 70 percent of private sector workers has no long-term disability insurance, 50 percent has no private pension, and 34 percent has no savings set aside for retirement.

It’s hard to imagine what would happen without Social Security. Benefits are modest, averaging about $1,100 to $1,200 per month, but go a long way in reducing poverty among beneficiaries with disabilities and their families. Many people with disabilities tell us that even a small cut in their Social Security benefits would mean facing terrible choices, like whether to take a prescribed medication or buy groceries.

The Arc knows how important it is to preserve Social Security. Over the last year, we’ve been on the front lines, speaking out against proposals like the chained CPI that would cut Social Security benefits and providing in-depth analysis.  The Arc also has many recommendations for strengthening Social Security so that the system works better for people with disabilities and stays financially strong for decades to come.

Please join us in making sure this vital protection is there for people with I/DD and their families! For more information about Social Security, or to apply for benefits, visit http://www.ssa.gov.

The Arc Reacts to New Book on Pregnancy Risks, Including Drinking Alcohol: “Why Risk It?”

The news media is paying attention to a soon-to-be released book, “Expecting Better: Why the Conventional Pregnancy Wisdom is Wrong—and What You Really Need to Know,” by Emily Oster, an associate professor of economics at the Booth School of Business at the University of Chicago.  As the leading organization supporting people with Fetal Alcohol Spectrum Disorder (FASD), The Arc is pushing back on the claims put forward in this book that could lead women to believe that light drinking during pregnancy is statistically safe.  Oster is not a medical professional, and the medical community has a clear position on this issue – there is no safe amount of alcohol that can be consumed while pregnant.

“Why risk it? That’s the question we should be encouraging women to ask themselves when they consider drinking alcohol while pregnant.  According to the U.S. Surgeon General, the nation’s top doctor, there is no absolute safe amount of alcohol that a woman can drink during pregnancy without risk of harming her unborn baby.  FASD is 100% preventable, yet books like this one give the irresponsible impression that the odds of a drink here or there affecting your child aren’t high enough for women to choose to abstain from drinking alcohol while pregnant,” said Peter Berns, CEO of The Arc.

What is FASD?

FASD is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral, mental and/or learning disabilities with possible lifelong implications.  It is identified by abnormal facial features, central nervous system problems and slowness of growth, and occurs when pregnant women drink alcohol and pass the alcohol along to their unborn babies through the blood stream.  FASD can cause physical and mental disabilities of varying levels of severity, including intellectual disability.  It is often a “hidden disability” that is not easily recognizable, making it difficult to provide affected individuals and their families the supports they desperately need.

What are other disorders linked to drinking while pregnant?

FASD covers other terms such as: FAS (Fetal Alcohol Syndrome), ARND (Alcohol-Related Neurodevelopmental Disorder), ARBD (Alcohol-Related Birth Defects) and FAE (Fetal Alcohol Effects). FAS is the most identifiable and serious disability under the FASD umbrella, although it only accounts for approximately 25% of all alcohol-related effects. FAE is a term often used to describe someone whose condition does not meet the full criteria for an FAS diagnosis.

The data affirms the national recommendation to not drink while pregnant

The CDC doesn’t know exactly how many people are affected, however their studies have shown that between 0.2 to 2.0 cases of FAS occur for every 1,000 live births in the U.S. (this statistic focuses on FAS only, not FASD).

When the number of people with FASD are included in that data, the National Organization on Fetal Alcohol Syndrome states that approximately one in 100 children are affected by FAS or FASD.  This is based on a study from the University of Washington that refer to this as a conservative rate, affirming the belief of many health professionals that fetal alcohol exposure is a serious problem in the United States.

According to the federal Substance Abuse and Mental Health Administration, for one individual with FAS, the most severe form of FASD, the lifetime cost of care is estimated at $2 million.  For our nation as a whole, the cost may be as high as $6 billion each year.

While there is no safe time period in a pregnancy to drink, recent research shows that between weeks six and twelve of a pregnancy, a baby is particularly susceptible to harm from drinking alcohol, showing an increase in certain facial features of FAS, in addition to lower birth weight and length.

“What you don’t know can, in fact, hurt you and your baby – for a lifetime.  There is no safe amount you can drink and still protect your child’s health, and dissecting data to prove otherwise will only increase the number of kids affected.  This is a societal problem that is within our power to tackle, as long as we carefully listen to all the facts,” said Berns.

The Arc Applauds National Governors Association for Work to Promote Employing People with Disabilities

At the recent National Governors Association (NGA) meeting, outgoing NGA Chair Governor Jack Markell (DE) wrapped up his year-long Chair’s Initiative, “A Better Bottom Line: Employing People with Disabilities.” The initiative focused on the employment challenges that affect individuals with intellectual and other significant disabilities and the role that both state government and business can play in facilitating and advancing opportunities for employment.  At the NGA meeting, Governor Markell released a final Blueprint for Governors summarizing the initiative’s activities, findings, and recommendations.

“Governor Markell’s initiative has brought attention to an issue that is too often ignored in our society – what people with disabilities can do in the workplace.  People with disabilities, including people with intellectual and developmental disabilities, are an integral part of our economy. The Arc is thrilled with Governor Markell’s leadership to raise the profile of this important issue to the governors across the country.  Chapters of The Arc, found in 700 communities across the country, are ready to support states that make employment for people with disabilities a priority,” said Peter Berns, CEO of The Arc.

Catching Up with Micah Feldman, Intern and Young Advocate

Micah FeldmanMicah Feldman is a young man “going places.”  Just to give you a sense of how involved Micah is with fulfilling his goals of being an independent young man, taking advantage of every opportunity in his path – it took us at The Arc several weeks to coordinate a time to talk to prepare this blog post. Between Micah’s commitments as an intern at the U.S. Department of Health and Human Services (HHS), speaking engagements at various conferences, and personal events (like his sister’s recent graduation weekend), Micah is not sitting still this summer!

Tell us about how you landed your internship at HHS this summer.

I heard about the AAPD internship program from my mom and thought it sounded like a good experience.  I applied once before, but wasn’t picked.  So I tried again and this summer I’m one of 30 or so people interning in Washington.  I wanted to work at HHS because I met Sharon Lewis at a conference and we became friends.

What is a typical day like at HHS?

Well, every day is different.   But I have spent time doing research on guardianship and voting rights.  I learn about the health care law.  I now know that getting a physical regularly is covered.  I’ve also supported the CRPD (U.N. Convention on the Rights of Persons with Disabilities).  It needs to get passed.

Why is the CRPD important to you?

It will help people travel more outside the country and have a voice at the table.  It’s important for us to support it.

Let’s talk about the good and the bad of your summer in Washington experience.

The best part was going to the ADA celebration at the White House. Tom Perez, the Secretary of Labor, spoke.  He’s done a lot for people with disabilities.  President Obama was not there because he’s a busy guy.

The worst part is by the end of the day, I’m tired of sitting in front of a computer screen.

What else have you been doing, besides working, here in Washington?

I went to a Nationals baseball game, which was a lot of fun.  I saw the FDR Memorial. And soon I’m going to the Newseum with AAPD.

What’s next for you?

I will go home to Michigan for a few days of rest.  Then I go back to Syracuse University, where I’m getting my certificate in disability studies.  I’m a teaching assistant too.  And I will continue to look for speaking opportunities.

This summer, I learned a lot and met lots of people.  Maybe in the future, I will work here.

We at The Arc wouldn’t be surprised to see Micah again in Washington, working full time or as a self-advocate for important issues like the CRPD.  Thanks for sharing your experience with us, Micah!

Social Security Administration Erases the “R-Word”

This week marks a great victory for people with disabilities across the United States.  The Social Security Administration (SSA) announced that it will no longer use the term “mental retardation” and will instead use “intellectual disability” in its official Listing of Impairments and other regulations. SSA started this process in January, and their decision brings us one step closer to a policy world free of the R-word.

This victory comes less than three years after President Obama signed Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes. The thousands of advocates who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily. However, once SSA decided to make a change, the agency was able to move from the initial public notice of proposed rulemaking to the final rule in just eight months.

SSA’s decision to use modern, respectful terminology will affect millions of children and adults with intellectual disability who over the course of their lives may need Social Security or Supplemental Security Income (SSI). It’s important to remember that this change will not alter who qualifies for benefits. SSA’s use of “intellectual disability” will not change whether an applicant will qualify for benefits, nor will it change current benefits for people who originally qualified for Social Security disability or SSI benefits with a diagnosis of “mental retardation.”

SSA’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not include Social Security or SSI, but SSA is making this change because it’s the right thing to do. The Arc and many other disability groups commented in support of this proposed change, which SSA first proposed in January 2013.

We know how powerful words are.  As Rosa Marcellino’s brother Nick said, “What you call people is how you treat them.” Words represent you and your viewpoint, and we can all be happy that SSA is taking a step to change the words being used in their official documents to better promote the civil rights of individuals with I/DD.  The R-word isn’t just a word, it is a stigmatizing term that the disability community has been fighting against for years, and this week we are a step closer to banishing it from our government and our society.