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“The Story of Beautiful Girl” by Rachel Simon

May marks the official release a new book from Rachel Simon, “The Story of Beautiful Girl.” (Available now on 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

Did you read it? What did you think?

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What Did Obama Say About the Budget Battle?

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

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

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.

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April = Autism Awareness

Autism Awareness Month is a time for learning about autism and introducing others to new ideas as well as a celebration of individuals on the autism spectrum. It’s also the perfect time to discover Autism NOW’s new website.

Autism NOW is a national initiative of The Arc funded by a grant from the Administration on Developmental Disabilities charged with becoming the nation’s source for resources and information on community-based solutions for individuals with autism, other developmental disabilities and their families. One of those topline resources is a series of webinars about autism spectrum disorders (ASD), early detection and intervention, and organizations and activities supporting acceptance and celebration.

Sign up for a free session held every Tuesday and Thursday from 2:00 p.m. to 3:00 p.m. (EST) throughout Autism Awareness Month. Designed for self-advocates, families, professionals, and the general public, these webinars encompass a wide variety of topics and practices in the area of autism spectrum disorders (ASD) and developmental disabilities. Space is limited and we’re sure you won’t want to miss these opportunities.

Upcoming topics will focus on:

  • An overview from National Disability Rights Network – what you need to know
  • Health Insurance Options for Children with IDD or on the Spectrum
  • An overview of legal advocacy at federal level based on state wide development disability Council expertise (NACDD)
  • Learn about Rest Assured, a new assistive technology that can change the face of care and promote independent living

Check out the full list of available Webinars and sign up now at While you’re there, take some time to explore the new website then spread some awareness to the rest of the world. You can like us on Facebook, follow us on Twitter, read our latest news and share our URL with everyone you know. Together we can raise awareness for autism for April and beyond!