Fact Checking NPR: The Real Story about Social Security & People with Disabilities

National Public Radio logoA huge buzz has come out of a story called “Unfit for Work: The Startling Rise of Disability in America” that ran last week on This American Life and this week on National Public Radio (NPR). While this story about Social Security and people with disabilities raises interesting questions, it’s also very incomplete, and perpetuates negative stereotypes and misunderstandings about people with disabilities. The Arc’s network knows better!

Members of The Arc and families served by us know that Social Security disability programs provide an essential lifeline that keeps millions of Americans with severe disabilities from homelessness and deep poverty.  About 1 in 5 Americans live with a disability, and this report failed to show the importance these programs play in many of their lives.

Additionally, “Unfit to Work” failed to mention many of the key facts about these programs. Many listeners were left with the impression that the disabilities that qualify people for Social Security and Supplemental Security Income (SSI) are “squishy,” and that the “federal disability programs have become an extremely expensive default plan” for low-income Americans.

In reality, Social Security and SSI disability benefits are only available to children and adults with the most severe disabilities – it’s hard to qualify, and it can often take years. The recent growth in the programs is largely explained by demographics, and program costs are manageable. The Arc does support many improvements to these programs to make them better for beneficiaries and to strengthen their financing – and we also know they are a lifeline that must be preserved.

To learn more about this report and the inaccuracies in it please read this letter from The Consortium for Citizens with Disabilities, which The Arc has signed, and other perspectives:

Also, if you want to take action and tell NPR the real story about Social Security and individuals with disabilities, visit our action center.

The Arc of California Statement on EEOC Lawsuit against Local Placer County Chapter

Sacramento, CA – In response to the news that the U.S. Equal Employment Opportunity Commission (EEOC) has filed a lawsuit against Placer ARC over allegations from 2008 that the organization did not provide a certified American Sign Language interpreter for a deaf employee, The Arc of California released the following statement:

“Chapters of The Arc are committed to our shared mission of promoting and protecting the human rights of people with intellectual and developmental disabilities and supporting their full inclusion and participation in the community.  In the course of their operations, they must comply with all applicable laws and regulations, including those applicable to employment practices.

“Through their programs, supports, and services, Placer ARC is making a difference in the lives of the people it serves.  While disputes with current or former employees may arise with any nonprofit or for-profit business organization, we hope that this matter dating back to 2008 can be resolved quickly and fairly for all involved.

“As Placer ARC’s executive director, Barbara Guenther, has publicly stated, Placer ARC is committed to adhering to all laws and regulations in regard to their employment practices as well as services for the people they serve,” said Tony Anderson, Executive Director of The Arc of California.

March is National Nutrition Month

By Kerry Mauger, The Arc’s HealthMeet Team

HealthMeetMarch is National Developmental Disabilities Awareness month and it is also National Nutrition Month®. The Academy of Nutrition and Dietetics created an annual campaign to help educate and inform people all over the US about the importance of creating healthy eating habits, making more informed food choices and increasing physical activity. This is especially important for individuals living with an intellectual or developmental disability. It’s been shown that individuals with a disability have a higher prevalence for obesity, which can lead to diabetes, cardiovascular disease, high blood pressure and other preventable health issues.

Learning more about nutrition and what types of foods to eat can make a huge impact in your overall health. By teaching and using the MyPlate methodology, individuals can get a visual perspective of the types of foods and portions that they should be consuming daily. To help show different portion sizes that are appropriate for certain foods you can compare them to household items that the individual will be able to relate to.  For example -knowing that a 3-4oz serving of chicken should be about the size of a deck of cards or half a cup of pasta is the size of a baseball will help to put portion sizes into perspective for future meals.

Small changes to the foods you consume can also make a significant imprint in your health over time – switching to skim milk from 2%, replacing sour cream with Greek yogurt, eating whole grain bread instead of white bread and controlling sodium intake are all very simple steps to take to making healthier eating habits. Many resources are available through The Arc’s HealthMeet project and their webinars that feature presentations by nutritionists, dieticians, nurses and more to help individuals to be more educated about the foods they chose, portion sizes and ways to improve fitness levels to help reduce obesity and many of its related preventable illnesses.

Forward Motion…The Arc Audi Racing Program Expands in 2013

The Arc Audi RacecarThe Arc Audi Racing Program kicks off our second season at the Pirelli World Challenge Series at the St. Petersburg Grand Prix in Florida March 23.

Although car owner and driver Don Istook will be sidelined for this particular race, The Arc Audi Racing team will still be at the track to host 20 individuals with intellectual and developmental disabilities, support staff and chapter staff from UPARC, a chapter of The Arc in the St. Pete area.

These individuals will serve as “honorary pit crew” members for a day and get hands-on in the paddock with drivers and crews as they prepare for the races and then get to cheer on their favorites as they compete for points in the Pirelli World Challenge Series. And The Arc will be working to raise awareness among race fans and the media of the valuable contributions people with I/DD can make if given a chance. Check out this video from award-winning documentary filmmaker Heidi Reinberg, who captured the excitement of the program in Sonoma, CA last year.

Team owner Don Istook and his wife Laurie share The Arc’s commitment to ensuring that people with I/DD are fully included, especially when it comes to employment opportunities. Laurie’s brother, Mark Hiett, was diagnosed with Fragile X, but that has not stopped him from working as an integral part of Don’s RS Werkes race team. Don and Laurie wanted to give other people with I/DD a taste of what it might be like to be part of a fast-paced race crew and came to The Arc with a unique idea to include individuals in the excitement of race day as the team moves from town to town to compete in the Pirelli World Challenge Series.

Follow The Arc Audi Racing Program as we take yet another exciting ride with Don and his team. The program has expanded to include 9 races with chapters of The Arc in 5 states plus Toronto, Canada, where we will be partnering with Inclusion International to bring Canadian guests to the track. The Arc’s national office will be posting updates from the races on Facebook, Twitter and their blog in the coming months. And you can see the races live online and on later broadcast by NBC Sports (full broadcast schedule).

The Arc Reacts to New National Survey on Autism Prevalence

Peter Berns

Peter V. Berns, CEO of The Arc

Washington, DC – Today, the Health Resources and Services Administration and the Centers for Disease Control and Prevention (CDC) agencies within the U.S. Department of Health and Human Services released a report which estimated autism spectrum disorder (ASD) prevalence based on parental reporting using the National Survey of Children’s Health.   In the survey, the prevalence of parent-reported ASD among children was 2%, or 1 in 50, up from 1.2% in 2007.  According to the CDC, however, much of the increase in the prevalence estimates from 2007 to 2011-2012 was the result of diagnoses of children with previously unrecognized ASD.

Last year, the CDC released new in-depth research estimating that 1 in 88 children had been identified with ASD.  The CDC will release its next round of this kind of research in 2014.  While the new study is based on parent reporting, a different methodology than that used by CDC’s monitoring network, it has tremendous significance for our service systems.

“These statistics represent millions of families across the country that are looking for resources and answers to help their children.  But meanwhile, the across-the-board budget cuts in Washington are hampering the vital efforts of federal agencies like the CDC and the National Institutes of Health, which are working to find the underlying causes of autism, and could have real consequences in our society,” said Peter Berns, CEO of The Arc.

“And these are not the only threats – lifeline programs like Medicaid, Social Security, and Medicare are on the table for real cuts that may impact the ability of these families to get services in the near and distant future for their children, as well as hurting adults with ASD who depend on those programs today.  It is not enough to say we want a balanced approach to deficit reduction – we must stand together and say that we cannot simply cut our way out of this situation.  We need more revenue to pay for critical investments like prevention and treatment, as well as services and supports for people with autism,” added Berns.

Early identification and intervention can have a significant impact on a child’s ability to learn new skills.  CDC’s “Learn the Signs. Act Early.” health education campaign promotes awareness among parents, health professionals, and child care providers about healthy developmental milestones, the importance of tracking each child’s development, and acting early if there are concerns. CDC offers free online resources, including checklists of developmental milestones, at www.cdc.gov/ActEarly.

Autism NOW: The National Autism Resource and Information Center, a federally funded project of The Arc, is another resource for people with ASDs and their families.  The online center aims to help people searching the web separate fact from fiction when it comes to autism.  Learn more at www.autismnow.org.

“Just Be”: Dancing Knows No Disability

Shannon and Tim QuinnBy Shannon Quinn, Guest Blogger

Shannon Quinn is a dancer and teacher at Dance Place, a nonprofit arts campus in Washington, D.C. In April, her company, ReVision dance company will perform “Just Be” in honor of her father; the late Timothy J. Quinn.  The April 27 performance includes a VIP reception with proceeds benefiting The Arc. Tim Quinn was Executive Director of The Arc of the Northern Chesapeake Region from 1990 to 2010. Tim was a visionary leader and advocate for people with disabilities, respected nationwide for his efforts. During his time with The Arc, his chapter was recognized for the quality of its services and commitment to personal empowerment and inclusion. And, Tim personally received the National Conference of Executives of The Arc 2009 Executive Excellence Award.

Growing up with my father, Tim Quinn, I was inspired from an early age to work with individuals with intellectual and developmental disabilities. I would travel every summer with my dad to The Arc conventions, and tag along when I could in his office at The Arc Northern Chesapeake Region. I was inspired by his kind heart and genuine interest in every person he came into contact with.

Teaching has always been a passion of mine, and since my father’s passing, I became more involved in teaching dance to children and adults with I/DD. I walk away from each class uplifted and focused on how individuals no matter what their abilities are, can be impacted by dance.

As my work with individuals with I/DD increased over the past two years, I had some serious thoughts about inclusion and how the word inclusion shouldn’t really even exist. Every human being has the right to live a fulfilled engaging life, no matter what their ability, and that should be a given.  As an artist, I began to form these thoughts into movements and from there, the piece “Just Be” was born.

In the work, I explore subjects like support and “people first language.” What does it mean to support individuals with I/DD and then in return, how does that support translate into those individuals supporting themselves? The piece also focuses on people first, rather than labeling by an individual’s disability. I want my message to be positive and uplifting to every individual. Dance is universal and has no limits. This project has reinforced my belief the dance can bring people together, no matter their age, background, ability, experience, profession or skill level.

On Saturday, April 27, the ReVision dance company will perform “Just Be” and host a VIP reception organized in partnership with The Arc of the United States with a portion of the proceeds benefiting The Arc. The performance features children with disabilities from the Mamie D. Lee School who were taught by instructors from ReVision dance company. Also, the performance includes students from The Arc of the Northern Chesapeake Region shown on film. I hope you’ll be able to join us at Dance Place and help celebrate my father’s legacy to celebrate and love ALL people. Find out more about our dance company and this performance at www.danceplace.org.

The Arc Applauds Appointment of Disability Champion Tom Perez as U.S. Secretary of Labor

Washington, DC – The Arc, the largest civil rights organization for people with intellectual and developmental disabilities (I/DD), applauds President Obama’s nomination of Tom Perez, the current head of the U.S. Department of Justice’s Civil Rights Division, as the next U.S. Secretary of Labor.

“Tom Perez has been a champion for people with disabilities throughout his career, and we are pleased that he has been nominated for a post that plays a critical role in employment for people whom The Arc represents.  We are thrilled that he steps into this important position with a wide breadth of knowledge regarding people with I/DD, and we look forward to his confirmation and to working with him in his new role,” said Peter Berns, CEO of The Arc.

In 2012, The Arc and the five other disability organizations that host the annual Disability Policy Seminar in Washington, DC presented Perez with their prestigious Leadership in Disability Policy Award for his aggressive enforcement of the Americans with Disabilities Act’s “integration mandate” and the Olmstead decision.  Just since 2009, the U.S. Department of Justice (DOJ) has been involved in several cases that will result in major transformations of states’ delivery of long term services and supports to people with disabilities.  In each of these cases, people with disabilities were living in segregated settings or at risk of being institutionalized while they could be living in more integrated community settings.  Due to Perez’s tireless work, thousands of people with disabilities will be able to leave institutional settings or avoid ever having to enter an institution, and will be able to participate more fully in their communities.

“Tom Perez has set a high bar at the Department of Justice for the enforcement of the laws protecting the rights of people with disabilities to be a part of their community.  We appreciate his tremendous efforts and look forward to working with him at the Department of Labor to further the employment of people with disabilities,” said Berns.

‘I wanted to make a difference in the community’

William MonaghanBy William Monaghan, Guest Blogger

In celebration of Developmental Disabilities Awareness Month, The Arc is encouraging individuals with intellectual and developmental disabilities (I/DD) to “Empower Yourself, Empower Someone Else.”  Today, The Arc offers you an article from William Monaghan, the President of the Delaware chapter of People First and an individual with I/DD. Read on to find out more about William’s life and the steps he has taken to be his own best advocate.

This column first appeared in the Spring 2013 issue of Apostrophe Magazine to which Mr. Monaghan is a contributor. Apostrophe Magazine is a publication created for, about and by people with intellectual and developmental disabilities. You can subscribe to Apostrophe Magazine to read more interesting perspectives from people with I/DD as well as columns from The Arc’s national office covering a variety of issues.  And you can find out more information about how The Arc helps support people with I/DD who are interested in self-advocacy on our website.

I am the president of Delaware People First in Wilmington. I was born in Wilmington and have lived here most of my adult life. A good thing about Delaware is that it’s near big cities like Philadelphia, New York, Washington, D.C. and Baltimore.

My mother and father were wonderful role models and gave me the opportunity to expand my horizons by sending me to the Riverview School in Cape Cod, Mass., where I was taught many skills that I feel helped me in my success in my adult years. I graduated from Riverview in 1974 and then attended Brandywine High School and McKean High School in Wilmington.

My mother and father were instrumental in helping me to achieve my goals. My mother’s name is T.J., and my father’s name was William Monaghan Sr. My father is deceased. I also have a sister, Andrea, and they all live in South Carolina. My wife, Barb, and I visit them when we have vacation and on holidays, and we also talk to them on the telephone.

I work for the Dupont Co. in Wilmington and have been employed there for 35 years, which I am extremely proud of. The job has taught me many things, including how to communicate with people and how to manage my time. I work in the clerical/printing department, and I really love my job. I do a lot of different things in my job, which keeps it interesting and challenging.

I joined Delaware People First in 2003, and from the very beginning, I wanted to become an officer. I felt like I could do a good job being a leader and guiding the group. I also wanted to make a difference in the community and was interested in self-advocacy and self-determination. There are 40-50 members in Delaware People First, and we also have a group in downstate Delaware with about 10 members. We meet once a month and have discussions about issues that affect the group, and we bring in guest speakers to talk about issues such as employment, transportation, self advocacy, emergency preparedness (Gary Mears from the University of Delaware has been working with us) and many other topics. We also have gone on many trips to New York, Washington, D.C. and Baltimore, and trips to the Delaware beaches. Delaware People First has allowed me to make new friendships, to help other people with disabilities speak up for themselves and to become stronger advocates. It has also helped me with public speaking where I feel comfortable talking in front of groups and other people. Delaware People First treats people like adults as we should be treated. That is my favorite thing about the group.

The advisers for Delaware People First are Debbie A. Nock, who has been an adviser for 16 years (an “old-timer” in her words) and Susannah Eaton Ryan, who has been an adviser for seven months. The important issues we are working on now include emergency preparedness, self-advocacy and self-determination. We are also planning a statewide advocacy conference in March 2013. We are working with many other groups in Delaware to prepare for the conference and hope to have more than 100 people participate. Delaware People First has many fund-raisers each year. We raise money by having fashion shows, hotdog and bake sales, car washes, selling tickets for Friends Helping Friends Day at Boscov Department Store, gift wrapping at Christmas for family and friends and participating in restaurant fund-raisers such as Friendly’s, Chick fil-A and many others.

My favorite things to do are going out with friends, going out to dinner, taking trips, bowling, playing golf, Special Olympics and spending time with my beautiful wife, Barb. My favorite TV show is “Two and a Half Men,” and my favorite food is Salisbury steak and mashed potatoes (I also have a few others of course).

My best qualities are being outgoing, friendly, courteous, trustworthy, loyal, cheerful and dedicated to people and causes. As other people have stated, I am a Boy Scout.

Meet The Arc Audi Racing Team

http://www.youtube.com/watch?v=M7xXyfdOyPg

By Heidi Reinberg

When I first read about The Arc Audi Racing Program, it seemed like a perfect, organic melding of individual moxie, nonprofit derring-do, and corporate social initiative.  Here was a race-car driver – Don Istook – who was inspired to share his love of racing with those with I/DD, and The Arc and Audi came along for the ride.

And what a ride it was!  The roar of the engines, the thrum of activity in the pit and on the sidelines, the colorful blur of the cars as they sped past at lightning speed– the excitement of my first day at the races was equally matched by the sheer exuberance of our Arc Audi crew.

Though I’m currently making documentaries, I’ve been involved in nonprofit and volunteering my entire life – since I was 13, I’ve believed that, whether it’s over a day or over the course of several years, each of us has the capacity to make a difference in someone else’s life.   That belief has been borne out time and time again in my work with such terrific organizations as City Cares of America, The Fresh Air Fund, The Bronx Documentary Center, and, now, with The Arc and The Arc Audi Racing Program.

A very special thanks to Trudy Jacobson and Kristen McKiernan from The Arc’s national headquarters and to Marti Sullivan, Meredith Manning, and Pat Napoliello of The Arc San Francisco for their assistance in making this film happen.

Heidi Reinberg

Heidi Reinberg

About Heidi Reinberg:
A lifelong organizational wonk, Heidi Reinberg has consulted for a wide variety of charitable organizations, advising on topics ranging from nonprofit startup to board development and fundraising to volunteer management and corporate partnerships. Her work covers a broad swath of issues: animal welfare, foster care, reproductive rights, public health, human rights, and developmental disabilities.

In the late ‘90s Heidi decided to put her skills to creative use and began producing social-issue films for HBO, PBS, and LOGO, among others. At present, Heidi is partnering with Oscar winner Ross Kauffman (Born Into Brothels) as Executive Producers of a series about conflict photographers; the project is currently in development as a fictional series at NBCUniversal. She recently founded Heidi Reinberg Big Idea, LLC to support visionary social entrepreneurs by providing project management services.

Ask a Simple Question

As part of a month-long campaign to make some noise during Developmental Disabilities Awareness Month, The Arc posed an open-ended question to our Facebook audience of just over 9,000 people. We asked them what they would like people to be more aware of when it comes to intellectual and developmental disabilities (I/DD).

As of this writing, just a few hours after posing the question, several dozen of our friends chimed in, offering their answers, liking and commenting on other answers and sharing, sharing and more sharing. What is interesting is that almost every single answer touched on a unique concern or issue.

A challenge The Arc faces in its role as the national organization for people with intellectual and developmental disabilities is attempting to serve and advocate for a group of individuals who may have one or more of over 100 different diagnoses which fall under the umbrella of I/DD at any stage in their lives. This naturally means that we have to work on issues ranging from early intervention and early childhood education, to transition from school to adult life, to inclusion in the community all the way to the most sensitive end-of-life issues.

One just has to glance at the responses to this question to see the scope of this challenge. Men, women and teens are posting about employment issues, under-diagnosed and under-represented conditions, respectful language, Individualized Education Programs (IEPs), the adult service system and what happens after high school, and parents with I/DD raising their children.

But the first step to addressing those challenges is raising awareness. If the responses to our question on Facebook are any indication of the types of conversations that are happening across the country during Developmental Disabilities Awareness Month, then we are well on our way. If you are interested in joining this small army of advocates to raise awareness of what it takes to promote and protect the rights of people with I/DD to live, learn, work and play as participating members of their communities, check us out on Facebook and Twitter, find out more about the issues on our website and learn how you can support the work of The Arc.

Empower Yourself. Empower Someone Else. #DDAware!