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New Data Reveals Our Nation Is Neglecting People With Intellectual and Developmental Disabilities

/in /by The Arc

Survey findings from human rights organization, The Arc, reveal nation’s efforts fail to provide fundamentals for individuals and families

WASHINGTON, D.C. (June 14, 2011) – Fifty years ago, President Kennedy called on the nation to bring people living with intellectual and developmental disabilities (IDD) “out of the shadows,” to give them opportunities to lead productive, quality lives. Sadly, new data released today from The Arc’s Families and Individual Needs for Disability Support (FINDS) survey shows efforts have plateaued and not nearly enough progress has been made to create these opportunities. While budget cuts and economic strain have hurt all Americans, the 7 million living with IDD and their families are among the hardest hit, with access to needed services drastically reduced. In fact, 62 percent of caregivers reported a decrease in services for their family member with a disability. Meanwhile, budget proposals in Congress threaten to dismantle Medicaid, making it even harder for people with IDD and their families to achieve.

The Arc, the nation’s largest and oldest human rights organization for the IDD community serving more than a million individuals and their families, conducted a national survey of nearly 5,000 respondents on educational, housing, employment and support needs. The results of this landmark survey are being released in a report today, “Still in the Shadows with Their Future Uncertain.”

According to the FINDS survey, one-third of parents and caregivers (potentially 1 million families) reported that they are on waiting lists for government funded services, with the average wait more than five years. The survey also found that the promise of integrated, community-based employment is not being met. In fact, 85 percent of families reported that their adult family members with IDD are not employed at all. Opportunities for inclusive education, a pre-requisite for employment, are also not being met. Too few students are completing high school – in fact, 52 percent of families reported that their family member with IDD left school without receiving a high school diploma.

“People with IDD have a fundamental moral and civil right to be fully included in all aspects of society. Every day, The Arc promotes and protects the human rights of people with IDD and actively supports their full inclusion and participation in the community throughout their lifetime,” says Peter V. Berns, chief executive officer of The Arc and newly appointed member of President Barack Obama’s Committee for People with Intellectual Disabilities (May 2011). “Although we have made some progress as a nation over the last 50 years, our nation has an obligation to do much more.”

“Yet we are on the brink of taking giant steps backward, and the future is uncertain for these individuals and their families. The vast majority of individuals with IDD live with their parents. So, when their parents can no longer emotionally or financially support them, who will? Without any concrete measures to protect these individuals and proposals to end Medicaid as we know it on the table in Washington, we have a train wreck waiting to happen.”

FINDS found more than 75 percent of families report problems accessing non-institutional community care, trained reliable homecare providers, services and resources. Families are shouldering tremendous financial strain as they’ve had to assume the financial and day-to-day support of their loved ones; many have even had to quit their jobs to stay home and provide care.

FINDS also revealed:

  • 1 out of 5 families (20 percent) report that someone in the family had to quit a job to stay at home and support the needs of a family member.
  • More than 80 percent of families reported not having enough retirement savings for their future as a result of using personal funds to compensate for the lack of services available to their loved ones.
  • 62 percent of parents and caregivers don’t have a plan for where the person they support will live when the parent/caregiver gets older.

As a result of the report, The Arc is calling for more activism by people with IDD and their families, launching a new effort to organize 1 million people to come out of the shadows and make their needs and concerns an issue in the 2012 elections.

To raise awareness surrounding the barriers those with IDD face and how the organization can help individuals and families fully participate in society, The Arc has partnered with Lauren Potter, star of the hit FOX show “Glee.” As a successful actress with Down syndrome who is achieving her dreams, Lauren represents the spirit of The Arc’s work. Today, The Arc and Potter will kick off a public service announcement television campaign.

“I became involved with The Arc when I got the Image and Inclusion award last year. I am happy to be able to help portray a positive image of people with intellectual and developmental disabilities. I’m glad the Arc works to protect human rights of children and adults with intellectual and developmental disabilities,” says Potter.

The Arc “Achieve with Us” Contest
To encourage people with IDD to share their stories of achievement, The Arc is conducting a national contest via their Facebook fan page. Starting today until July 14, entrants can share a story and a photo highlighting the accomplishments of an individual with IDD for the chance to receive a trip for two to Washington, DC. For more information about the “Achieve with Us” contest, please visit www.facebook.com/thearcus.

For more information, or to see additional survey results, please visit thearc.org.

About the FINDS Survey

The web-based FINDS survey was conducted from July 22, 2010, through October 31, 2010. The survey was completed by 4,962 caregivers of people with disabilities. Families from all 50 states and Washington, DC completed the survey. 

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The Arc Begins Affiliation With the U.S. Business Leadership Network to Improve Employment for People With Disabilities

/in /by The Arc

WASHINGTON – Today, The Arc, the largest organization advocating for and serving people with intellectual and developmental disabilities (IDD), is announcing it has become an affiliate of The US Business Leadership Network® (USBLN®). The USBLN seeks to help build workplaces where people with IDD are valued for their talents and contributions.

“It’s partnerships like this one that will help advance employment for people with IDD. The Arc aims to be a resource to businesses large and small that see the value in employing people with all kinds of skill sets so that they can contribute to society in a meaningful way and live a fulfilling life,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves 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.

The Arc’s network will help the USBLN, which is the national disability organization that serves as the collective voice of over 60 Business Leadership Network affiliates across North America and represents over 5,000 employers, advance employment opportunities for people with IDD. In this tough economy, with the national unemployment rate at 9%, people with IDD face huge obstacles to gaining employment in the private sector.  While there are federal programs to help those with IDD find employment within the federal government, in recent years the percentage of federal employees with disabilities has decreased.

The USBLN promotes the business imperative of the preparation and inclusion of people with disabilities in the workplace, marketplace, and supply chain while supporting the development and expansion of its BLN affiliates. The USBLN recognizes and supports best practices in hiring and advancing employees with disabilities, marketing to consumers with disabilities, and encourages contracting with vendors with disabilities through the development and certification of disability-owned business enterprises. To learn more, visit www.usbln.org.

“This is a tremendous opportunity for The Arc to take a step forward in our goal of increasing employment for people with IDD.  We look forward to what this affiliation will bring across the country to the people we serve,” said Berns.

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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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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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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.

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The Arc to New Hampshire State Rep. Harty: People With Disabilities Are Valued and Achieve

/in /by The Arc

Washington, DC – Comments by State Representative Martin Harty of New Hampshire that “the mentally ill, the retarded, people with physical disabilities…the defective people society would be better off without,” should be shipped to Siberia, harkens back to the darkest days of history for people with intellectual and developmental disabilities when forced institutionalization and sterilization was commonplace.

“Rep. Harty’s remarks are reprehensible and should be condemned by his constituents and colleagues alike. Our society has long ago recognized that people with intellectual and developmental disabilities are part of the fabric of our society with the right to be included and participate in the community,”  said Peter V. Berns, Chief Executive Officer of The Arc.  “While we don’t believe that Rep. Harty views are representative of America’s elected officials, these remarks are especially chilling as budget slashing across the nation threatens the well being of our most vulnerable” Berns added

In 1962, President John F. Kennedy, Jr., sounded a clarion call to bring people with IDD out of the shadows and into the light and affirmed the fundamental value of people with IDD and their potential to achieve in every aspect of society.  In the face of Representative Harty’s outrageous behavior, we need to be reminded of that message today.

“People with IDD can and should lead lives of inclusion and opportunity, realizing their full potential in school, the workplace and throughout the community.  The Arc stands with them as valued, contributing members of their community, and calls on people of good conscience in New Hampshire and nationwide to do the same.” Berns said.

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The Arc Launches Dynamic New National Brand Identity

/in /by The Arc

Washington, D.C. – The Arc, the largest organization advocating for and serving people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, FASD, cerebral palsy and other diagnoses, is changing its look and adopting a new visual identity. The Arc is joined in the launch of this rebranding initiative by state and local chapters representing more than 30 states.

“This is an exciting time in The Arc’s history,” said Peter V. Berns, CEO of The Arc. Our powerful, new, shared identify reflects the energy and the action of our organization as we work to transform the lives of people with IDD.  This impactful and fresh identity will move us further in revitalizing The Arc – an organization that has been on the frontlines of advocacy and service for over 60 years –by harnessing the incredible power of those we serve.”

The Arc’s vibrant new logo and tagline communicate the organization’s commitment to promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. The Arc’s logo is
emblematic of the organization’s embracing nature with the flowing “catalyst” icon; a burst of energy is symbolic of our support of independence. The new tagline, Achieve with us, conveys The Arc as a provider of opportunity, hope, growth and change.

The Arc’s new identity grew out of a lengthy, collaborative effort that began in spring 2008 and has involved literally thousands of The Arc’s volunteer and staff leaders, constituents and other stakeholders to create a visionary plan for the future: The Strategic Framework 2010-2019. A survey of chapters of The Arc demonstrated widespread support to rebrand and create a more compelling vision for The Arc.

The launch of The Arc’s new brand coincides with the commemoration of Developmental Disability Awareness Month in March. Nearly a quarter century ago, The Arc’s advocacy led to President Ronald Reagan officially proclaiming March to be Developmental Disabilities (DD) Awareness Month. Chapters of The Arc across the nation are celebrating DD Awareness Month with special events and activities. Over the past six decades, The Arc has championed groundbreaking legislation that has improved the lives of people with IDD.

“There is tremendous energy and ‘buzz’ as we begin to implement The Arc’s new brand identity” said Mohan Mehra, Board President of The Arc. “This will help raise public awareness of The Arc and translate to greater support at both the local and national levels. I am especially invested in the new brand and have been involved since the start of the process. Having served as a business manager with Kraft Foods with experience in business strategy, marketing and sales I know that a new brand can make a real difference.”

The Arc selected CoreBrand, an award-winning branding firm, to design and execute the new identity led by Brand Director Jonathan Paisner.  “As a branding consultant, this was the rare opportunity to help discover and unleash a powerful brand simply waiting to be born,” Paisner said.  “A true collective voice –- one shared by and reflected in over 700 chapters – will certainly be a boon to fundraising, volunteerism and visibility in the corporate world. Yet the true impact of a greater national presence will ultimately bring all of these elements together to advance The Arc’s goals of inclusion, hope, opportunity and achievement.”

The look and feel of the new brand will advance further with the May 10, 2011 national announcement of The Arc’s FINDS (Family and Individual Needs for Disability Supports) survey results at the National Press Club in Washington, D.C.  The FINDS survey will yield a candid and current view on issues concerning the needs for disability supports across the lifespan. This unprecedented assessment of data from nearly 6,000 individuals will enable those in the field to better understand what services are available, what gaps exist and what new supports are needed.

Today, across the United States, the 700+ chapters of The Arc share common goals:

  • The Arc is embracing, determined and experienced in promoting and protecting the rights of people with IDD;
  • The Arc provides key needed services and supports across the arc of a lifetime and across diagnoses, such as Down syndrome, autism and many other intellectual and developmental disabilities.
  • The Arc is banding together around the new and vigorous identity that embodies the energy and movement of The Arc to help people with IDD feel empowered and included.

“We are thrilled,” Berns added, “that upon the launch today we will have more than 150 of The Arc’s state and local chapters simultaneously unveil The Arc’s new brand identity in communities across the country.  With close to 25% of chapters of The Arc on board already, and more chapters signing on daily, the successful implementation of our new brand strategy is well underway,” Berns explained.

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The Arc and UCP to Create New Policy Operations

/in /by The Arc

Since 2003, the Disability Policy Collaboration (DPC) has been the shared public policy arm of UCP and The Arc. The DPC focuses on federal legislative and regulatory efforts to improve the lives of individuals with disabilities and their families.

Since its inception, the DPC has been a vital force in shaping federal legislation to advance the lives of people with disabilities and, most recently, played a significant role in the passage of Health Care Reform as well as Rosa’s Law.

With the announced retirement of Staff Director Paul Marchand in December 2010, the two organizations began a reassessment of the collaboration to determine the most effective way to engage in advocacy and policy efforts in the future.

Effective April 1, 2011, the DPC will cease and each organization will resume its own public policy program while continuing to join together on select projects as well as actively participate as members of the Consortium for Citizens with Disabilities (CCD).

“We are proud of all that the DPC has accomplished over its eight years, pushing for civil rights protections and public policies that provide support to ensure fair and full citizenship for people with disabilities,” said Stephen Bennett, President and Chief Executive Officer of United Cerebral Palsy. “We look forward to continuing our partnership with The Arc, both as a member of CCD and through shared, targeted projects. We believe that our new approach will only expand the number and strength of advocates striving to create a life without limits for people with disabilities.”

“The efforts of the DPC have had an immeasurable impact on federal legislation and regulatory efforts that improve the lives of people with disabilities and their families,” said Peter V. Berns, CEO of The Arc. “As we move forward, The Arc and UCP will continue to be vigorous advocates for people with disabilities and to create opportunity in every aspect of their lives.”