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The Arc Commends the U.S. Senate for Voting Down Disastrous Budget for People With Disabilities

/in /by The Arc

WASHINGTON – Late yesterday, the U.S. Senate voted down a federal spending plan that could have disastrous consequences for people with intellectual and developmental disabilities (IDD). Leading up to the vote, The Arc, the nation’s largest and oldest human services organization for the IDD community serving more than a million people with IDD individuals and their families, opposed this legislation because it would cut $750 billion over 10 years out of Medicaid and end the program as a guaranteed benefit by turning it into a “block grant” that leaves cash-strapped states to fill in the funding gaps with very little oversight.

“The U.S. Senate’s vote put the brakes on a disastrous budget proposal for people with intellectual and developmental disabilities. As Congress and the nation continue to debate how to promote economic recovery and tackle our deficit, it can’t be done on the backs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.

The House of Representatives passed this budget plan, known as the Ryan Plan after its author, Congressman Paul Ryan of Wisconsin, in April. The bill includes drastic cuts and changes to:

  • Medicaid: Cuts $750 billion over 10 years and ends Medicaid as a guaranteed benefit by turning it into a “block grant” that leaves cash-strapped states to fill in the funding gaps with very little oversight.
  • Medicare: Replaces Medicare with a voucher program for younger beneficiaries that will certainly provide less than the current system.
  • Discretionary Programs: Eliminates, over time, most federal government programs outside of health care, Social Security, and defense as the cuts are so deep.
  • Health Care Reform: Repeals and defunds the Affordable Care Act.

The $4.3 trillion from all of these cuts would be used to provide $4.2 trillion in tax cuts over 10 years without tackling the nation’s deficit.

For people with IDD, these cuts would have a huge impact on their health and lives. People with IDD could be denied health insurance coverage, home and community based services, supportive housing, job training, education, transportation, and other services. Medicaid currently funds 78% of services for individuals with IDD.

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Discrimination in the Workplace: Has It Happened to You?

/in /by The Arc

The U.S. Equal Employment Opportunity Commission is taking up a troubling employer discrimination lawsuit. Jason O’Dell of Maryland applied for work as a lab technician through a major national employment agency. The opportunity seemed promising, but shortly after disclosing his Asperger’s diagnosis, the lawsuit states that Jason was told that the position was “on hold.” But the agency allegedly kept on recruiting to fill the job.

So the federal government stepped in and slapped a lawsuit against the firm, called Randstad. Since this is a huge, national employment agency, The Arc wants to know – has anyone out there had a similar experience with the company? We can’t allow discrimination like this to be tolerated.

Share your story with us in the comments, or email Kristen Bossi at bossi@thearc.org.

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Are You Coming to Denver for The Arc’s National Convention?

/in , /by Shelly DeButts
Dr. Temple Grandin

Dr. Temple Grandin

Registration is now open for The Arc’s 2011 National Convention in Denver, Colorado, September 16-19. You should join us this year. It’s simply the biggest and best opportunity to connect with others in the intellectual and developmental disability community such as members of The Arc, chapter staff and volunteers, professionals and experts in the field plus individuals with IDD and their families.

This year, we’ll be Achieving New Heights with special appearances from Dr. David Braddock, the force behind the “State of the States in Developmental Disabilities” assessment of state performance on issues important to the IDD community and Dr. Temple Grandin, the noted scientist and subject of the award-winning biopic Temple Grandin, a film about her accomplishments and living with autism.

We have a special treat for those of you who attended last year’s Convention. Actress Lauren Potter from Glee, who stole the show along with her co-star Robin Trocki in Orlando, returns this year. Lauren, who has Down syndrome, was a delight at last year’s event, meeting and greeting fans for hours.

In addition to the roundup of informative and enlightening sessions covering topics such as advocacy, leadership, innovation, and public policy, we’re bringing back the popular Exchange – a roundtable discussion group. And, we’re turning the Exhibit Hall into a dynamic Marketplace where you can find out more about programs, services and products designed especially for you. Look for Entrepreneur Alley, where budding businesspeople with IDD can showcase their entrepreneurial spirit.

Register now before August 5 for discounted registration and room rates at the Sheraton Denver Downtown.

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Sad Night for Glee Fans Makes The Arc Smile

/in /by Shelly DeButts

Warning: this post contains plot spoilers from last night’s episode.

Robin Trocki speaking at The Arc's 2010 National ConventionFans of the hit Fox TV show Glee were given an emotional episode last night as Jane Lynch’s character, Sue Sylvester, dealt with the shocking death of her sister Jean, played by Robin Trocki. Jane talked to EW.com about how tough it was to film the funeral scenes since she knew it meant the end of an enjoyable working relationship with Robin. Those of you who attended The Arc’s National Convention in Orlando last year may have had the opportunity to meet Robin, who has Down syndrome, along with her Glee co-star Lauren Potter as they accepted The Arc’s inaugural Image and Inclusion Award for positive and accurate portrayals of people with intellectual and developmental disabilities in the media. If you did, we’re sure you share Jane’s sentiment as it was clear that Robin was just as friendly and kind in real life as the character she portrays.

In her interview about the episode, Jane Lynch noted that people with Down syndrome can have shorter life expectancies than the average American due to health issues associated with their disability. However, with advances in medical care, some of those issues are not as life-threatening as they once were. Jane also spoke to the unique sibling relationship between the characters that many people who have a brother or sister with IDD will instantly recognize. The Arc applauds the creators and producers of Glee for creating the characters of Jean and Becky (Lauren Potter) and giving them such rich lives complete with challenges and achievements, friends and family, joy and sorrow…included, participating and contributing just like everyone else. That makes us smile.

To Jean – goodbye, we’ll miss you. And to Robin – thanks!

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President Obama Appoints The Arc’s CEO Peter Berns to the President’s Committee for People With Intellectual Disabilities

/in /by The Arc

WASHINGTON – This week, President Barack Obama announced his appointments to the President’s Committee for People with Intellectual Disabilities, which included The Arc’s CEO Peter Berns. This expert group will provide advice and assistance to President Obama and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual and developmental disabilities (IDD) and their families.

“I’m honored to be a part of this panel advising the Obama Administration on matters critical to the inclusion of people with IDD in their communities. We are facing enormous challenges right now, with federal and state budget crises threatening the services that support people with IDD to thrive in society,” said Berns.

The President’s Committee for People with Intellectual Disabilities is rich with history, dating back to October 1961, when President John F. Kennedy appointed the first panel of this kind to provide the nation with direction for progress in the field of IDD. This was a turning point for the IDD community, as President Kennedy shined a spotlight on the deplorable living conditions in institutions and limited opportunities for people with IDD across the country. The panel produced a report with more than 100 recommendations for research into the causes and prevention of IDD and for expanding opportunities for education, employment and community living and participation. President Kennedy  pushed and signed into law major pieces of legislation that established the foundation for current civil rights protections and programs and services for people with IDD.

By the 1960s, The Arc had emerged as a strong voice advocating for community living and with it the appropriate supports and services people with disabilities need. Today, The Arc is the largest organization advocating for and serving people with IDD, including Down syndrome, autism, FASD, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.  According to the U.S. Department of Health and Human Services, nearly 30 million, or one in ten families in the United States, are directly affected by a person with intellectual disability at some point in their lifetime.

“The members of this panel will represent millions of Americans and their families at a critical juncture in our efforts to improve the lives of people with  IDD. I’m looking forward to joining this group and bringing with me the powerful, personal stories of the hundreds of thousands of families that are part of The Arc,” said Berns.

A nationally recognized nonprofit sector leader and public interest lawyer, Berns served as the Executive Director of the Maryland Association of Nonprofit Organizations from 1992 to 2008 prior to leading The Arc. In addition, he served as Chief Executive Officer of the Standards for Excellence Institute from 2004 to 2008 where he developed Standards for Excellence: An Ethics and Accountability Code for the Nonprofit Sector. A frequent lecturer, facilitator, consultant, and trainer, he has served as an adjunct faculty member at Johns Hopkins University.  He was named to the Nonprofit Times Power and Influence Top 50 list five times in the past decade. Berns has a B.A. from the University of Pennsylvania, a J.D. from Harvard Law School and an LL.M. from Georgetown University Law Center.

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The Arc Calls Out LeBron James for Offensive Language

/in /by Kristen Bossi

On Friday night, at a post-playoff game press conference, LeBron James used an offensive word to people with intellectual and developmental disabilities and their families. The video of his comment was posted widely online, and quickly caught the attention of the media and The Arc’s national office. The Arc’s CEO, Peter Berns, released this comment to the media:

“LeBron James should apologize immediately. No matter the context, this language is very offensive to people with intellectual and developmental disabilities and their families, and an athlete admired by kids everywhere should recognize the power of his actions and words.”

LeBron James began his next press conference with an apology.

We want to hear your take on this issue – when sports figures or celebrities use language that some find offensive, do they have a responsibility to apologize?

Let us know in the comments.

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“The Story of Beautiful Girl” by Rachel Simon

/in /by Shelly DeButts

May marks the official release a new book from Rachel Simon, “The Story of Beautiful Girl.” (Available now on www.amazon.com) Ms. Simon is a frequent speaker at events hosted by Chapters of The Arc, including The Arc of Kentucky’s recent state conference thanks to the popularity of her 2002 memoir, “Riding the Bus with My Sister (2002), which focused on her sister Beth, who has a developmental disability. That book was later turned into a TV movie starring Rosie O’Donnell and Andie McDowell. Some details were changed and fictionalized, but the core messages of Beth’s right to self-determination and the challenges and rewards of the sibling bond were left intact.

In “The Story of Beautiful Girl,” Ms. Simon describes two characters with disabilities, Lynnie and Homan, living in an institution in 1968 who fall in love, escape and have a child that they hide away when the authorities catch up to them and Lynnie is forced back to the institution. The book’s publisher, Grand Central Publishing, is predicting a New York Times Bestseller List level of success for this dramatic tale. It will be interesting to see how readers react to a story that touches on issues of intellectual and developmental disability, institutionalization, abuse, race, love, parenting and communication. Find out more about the author at www.rachelsimon.com.

Did you read it? What did you think?

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What Did Obama Say About the Budget Battle?

/in /by Shelly DeButts

You may have read our CEO Peter V. Berns’ reaction to President Obama’s speech on Wednesday about the budget battle being waged at the Federal level. You know that we at The Arc are unwavering in our conviction that we must preserve the social safety net for the most vulnerable Americans, including people with intellectual and developmental disabilities.

We simply can’t balance the budget on the backs of individuals and families who need our support to meet the most basic needs of medical care, housing, employment and education opportunities, much less to meet their expectations that they be fully included and able to participate in their communities and in society. Now, you might want to read the full text of the President’s speech on the matter and judge for yourself where he falls on the subject. Tell us what you think. Is the President pursing the right path? Will he succeed against the opposition he faces in Congress?

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President Obama Provides Clear Alternative on the Budget

/in /by The Arc

Preserving Safety Net for Most Vulnerable, Not Tax Breaks for Millionaires

WASHINGTON, D.C. – The Arc’s Chief Executive Officer Peter V. Berns issued the following statement in response to President Obama’s George Washington University address:

“President Obama today reaffirmed his commitment to reducing the federal deficit while holding true to our most cherished American values. We believe that the President’s plan to preserve our vital safety net programs – Medicare, Medicaid, and Social Security – is more balanced and fair than the plan advanced by the House Budget Committee. Instead of relying on cuts to vital programs for the most vulnerable Americans, the President is proposing to raise revenues by ending the unfair tax advantages enjoyed by the richest individuals and corporations in America and balancing the spending cuts.”

“We take heart in hearing the President’s frequent mention of people with disabilities in his speech. This shows that he understands that the over 7 million Americans with intellectual and developmental disabilities will be among those most harmed by the House Budget plan to block grant Medicaid, end Medicare as we know it, repeal the Affordable Care Act, and decimate funding for housing, education, transportation and employment programs by making deep cuts over time. We appreciate the President’s call to stand for the rights of people with disabilities.”

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The Arc to Congress: House Budget Plan for 2012 Will Wreak Havoc in Lives of People With Intellectual and Developmental Disabilities and Their Families

/in /by The Arc

Washington, DC – The Fiscal Year 2012 budget proposal released this week by House Budget Committee Chairman Paul Ryan (R-WI) , if adopted, would cause great harm to the more than 7 million people in the United States with intellectual and developmental disabilities (IDD). The plan would virtually eliminate federal funding for education, housing, job training, transportation, and other domestic spending. Eliminating Medicaid and Medicare and replacing them with a block grant and vouchers threaten to wipe out much of the progress that people with ID/D have achieved over the last several decades. Our constituents could return to the widespread impoverishment, poor health, and isolation not seen since these entitlement programs were created in 1965.

“Under Chairman Ryan’s plan, people with IDD can be denied health insurance and the services and supports they need to live and work in the community. There will be no guarantees of any assistance or support for people with intellectual disabilities who want to continue to live in their own homes, rather than institutions,” stated Peter V. Berns, Chief Executive Officer of The Arc.

Health Insurance. Medicaid and Medicare are overwhelmingly the largest providers of health insurance for people with disabilities. People with IDD would no longer be entitled to Medicaid to pay for their health care services such as prescription drugs and doctor visits. Many people with IDD cannot get medical insurance through the private market because: 1) they do not work full time and cannot obtain employer-sponsored coverage (only 21% of people with all disabilities are working); 2) they have pre-existing conditions and cannot find health insurers who will sell them policies; 3) if they can find insurers to sell them policies, the policies do not cover the services and products they need (or the coverage is exorbitantly expensive). Under the House plan, both states and private insurers will be free to deny coverage and assistance to people with IDD.

Long Term Services and Supports. People with IDD often require assistance with activities of daily living throughout their lifetimes, such as getting dressed, taking medication, preparing meals, and managing money. Over 650,000 people with IDD receive such long-term services paid for by Medicaid while living at home with their families, in other community-based settings, or in intermediate care facilities. Under the House plan, states could be free to discontinue all of these services.

While there are numerous parts of the FY 2012 budget plan that are of grave concern, the proposal to block grant Medicaid is by far the most egregious. Under a block grant system, states will be faced with the rising health care costs that result from population increases, outbreaks of diseases, and economic downturns or other circumstances. Their only options will be to cut people off the Medicaid rolls, to eliminate necessary services, or to reduce provider payments. For people with IDD, that means that they won’t be able to go to the doctor or obtain prescription medications they need. Their very health and well being is at stake.  Block granting also creates a perverse incentive for states to return to the days where they warehoused people with disabilities in institutions to save money. States will no longer have to meet the quality standards currently imposed by the Medicaid program for community-based services or nursing homes.

The Arc appreciates the importance of reining in the federal deficit.  However, we believe that the budget cannot be balanced on the backs of our most vulnerable citizens. There are far more thoughtful, effective and humane ways to accomplish this critical goal. We know that providing home and community-based services is more cost effective and better for the individual than institutional care and we do not want to go backwards. What is needed is to flip the system on its head and make home and community based services what is required and institutions the exception to the rule.

“The current situation is bad enough now, where people with IDD literally wait 10 years or more to get Medicaid home and community based services. Is Congress really just going to cut them off entirely from services that allow them to be included and participate in society like we all do?  What the House is proposing is just wrong!  It is that simple.” said Berns.

The Arc is the largest organization with a network of over 700 chapters across the country for people with intellectual and developmental disabilities. The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.