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The Arc’s Statement on the Bipartisan Budget Act of 2013

The Arc released the following statement in response to Congressional leaders reaching a budget agreement negotiated by Senate Budget Chairman Patty Murray and House Budget Chairman Paul Ryan. The Bipartisan Budget Act of 2013 would set discretionary spending for the current fiscal year at $1.012 trillion (about halfway between the Senate budget level of $1.058 trillion and the House budget level of $967 billion).

This agreement will help preserve programs that individuals with intellectual and developmental disabilities (IDD) rely on, restore order to the federal budget and appropriations process, and reduce the deficit by between $20 and $23 billion. Additionally the agreement provides $63 billion in sequester relief over two years, that will be split equally between defense and non-defense programs, which will prevent further cuts to important programs.

“While The Arc is pleased that the budget agreement did not make major changes to our lifeline programs including Social Security, Medicaid, and Medicare, we are concerned about what appears to be the expansion of the state Medicaid agencies’ ability to recoup costs from settlements from Medicaid beneficiaries. This could affect payments owed to individuals and families who have been harmed, received compensation, and depend on the compensation to pay for expenses beyond what Medicaid covers. Allowing a state Medicaid agency to recover ‘any payments’ by a third party with legal liability (rather than just those payments for health care items and services, as under current law) would leave beneficiaries without coverage for other basic necessities,” said Peter V. Berns, CEO of The Arc.

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Get the Facts: Another Media Hit on Social Security Disability Programs

Sunday night, CBS’ 60 Minutes aired a piece they dubbed “Disability, USA” in which they portrayed the Social Security disability programs as exploding over the last few years and in danger of running out of funds. We’re deeply concerned that to press the panic button on the funding stream for Social Security Disability Insurance (SSDI) is irresponsible, and we’re saddened to see 60 Minutes join other national media in perpetrating myths and inaccuracies.

Members of The Arc and the individuals and families we serve know Social Security is an essential lifeline that keeps millions of Americans with significant 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.

It’s disappointing to see reporting that puts people who rely on these programs to survive on edge, when the truth is much less sensational but also much more interesting. Here are three important facts to keep in mind:

1. It’s incredibly difficult to qualify for Social Security disability benefits. The Social Security Act’s disability standard is one of the strictest in the developed world. Fewer than four in ten applicants are approved, even after all stages of appeal. Many are terminally ill: 1 in 5 male SSDI beneficiaries and nearly 1 in 6 female SSDI beneficiaries die within 5 years of receiving benefits. Due to the complexity of the process, many people who appeal seek help from an attorney or representative who is paid by the claimant out of past-due benefits – not out of the Disability Insurance Trust Fund, as suggested by 60 Minutes. As noted by the Consortium for Citizens with Disabilities, the fee process for Social Security claims is highly regulated and the average fee in most cases is less than $3,000.

2. For those of us paying attention, the growth in Social Security Disability Insurance (SSDI) is not surprising – in fact, it has been projected since 1994. According to Social Security’s Chief Actuary, the growth in SSDI (from 1980 to 2010) is mostly the result of several factors: substantial growth in the U.S. population; the baby boomers aging into their high-disability years; and women entering the workforce in large numbers in the 1970s and 1980s so that more are now “insured” for SSDI based on their own prior contributions.

3. The DI trust fund will need to be replenished in 2016 – but this is not a new development, or an unprecedented one. Since Social Security was enacted, Congress has “reallocated” payroll tax revenues between the OASI (retirement) and DI (disability) trust funds – about equally in both directions – some 11 times to account for demographic shifts. In 1994, the last time such reallocation occurred, SSA actuaries accurately projected that similar action would next be required in 2016.

The 60 Minutes program also reported on fraud in the system that occurred in West Virginia and Kentucky. The Social Security Administration – and advocacy organizations like The Arc – takes fraud very seriously because it harms the millions of honest people who rely on the program as a lifeline to basic necessities, and it hurts the integrity of the program. Anytime you suspect fraud is occurring, you can contact the SSA hotline at 1-800-269-0271. We all want to root out the bad actors and focus the program on those that need it most – people with disabilities who without the SSA, would be homeless, hungry, and cut off from access to life saving medicines and services. But it’s also important to keep in mind that most experts agree that fraud is very rare. Former SSA Commissioner Michael J. Astrue, appointed by President George W. Bush, estimates that fraud constitutes less than 1 percent of all applicants.

Finally, we believe that resources are vital to ensuring that SSA can properly administer its disability programs. The continued impact of underfunding has had serious implications, including limiting the agency’s ability to perform vital watchdog functions. And the current government shutdown is having even more dramatic effects.

Here are some additional resources for learning more about the facts on the Social Security disability programs:

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Happy Birthday, Social Security!

This 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 (IDD).

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 IDD and their families! For more information about Social Security, or to apply for benefits, visit https://www.ssa.gov.

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Eight Former Social Security Commissioners Voice Support for Disability Programs, Concerns With High Profile Series on NPR

In the aftermath of a series recently aired on This American Life, All Things Considered, and National Public Radio (NPR) stations across the U.S. (“Unfit for Work: The Startling Rise of Disability in America”), eight former commissioners of the Social Security Administration (SSA) released an open letter in support of the Social Security disability programs. The former commissioners also raised concerns with how the series characterized the programs, stating: “We are deeply concerned that the series ‘Unfit for Work’ failed to tell the whole story and perpetuated dangerous myths about the Social Security disability programs and the people helped by this vital system. We fear that listeners may come away with an incorrect impression of the program—as opposed to an understanding of the program actually based on facts.

“As former Commissioners of the agency, we could not sit on the sidelines and witness this one perspective on the disability programs threaten to pull the rug out from under millions of people with severe disabilities.”

The letter was signed by:

  • Kenneth S. Apfel
  • Michael J. Astrue
  • Jo Anne B. Barnhart
  • Shirley S. Chater
  • Herbert R. Doggette
  • Louis D. Enoff
  • Larry G. Massanari
  • Lawrence H. Thompson

Read the full letter here.

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Fact Checking NPR: The Real Story About Social Security and People With Disabilities

A 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.

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The Arc on the Front Lines of Defending Social Security

Many programs vital to people with intellectual and developmental disabilities (IDD) have been at risk over the last few rounds of budget negotiations. Right now, Social Security is in danger of cuts because of talk to change the benefit calculation. This shift to what is called the “chained CPI” would have horrible consequences for people with IDD, forcing them to make life and death choices. The Arc’s CEO Peter Berns was invited to speak at a press conference in the U.S. Capitol today, organized by Senator Bernie Sanders of Vermont. Berns was joined by representatives from other organizations whose constituencies would be impacted by this benefit cut, including AARP, NOW, the AFL-CIO, and Iraq and Afghanistan Veterans of America.

Good morning. I’m Peter Berns, the Chief Executive Officer for The Arc. We are the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We have over 175,000 members, and we serve more than 1 million people through our 700 state and local chapters nationwide.

Our nation’s Social Security system is a lifeline for over 56 million Americans including more than 10 million people who qualify because of a disability.

It’s a system that was built up over decades based on our shared commitment to each other. Changing the benefit calculation through the chained CPI isn’t just shaving a few dollars off here and there. We have a moral obligation to make sure that Social Security is there for all Americans in their time of need.

For people with disabilities, the monthly Social Security check can mean the difference between a home in the community, or life on the streets or in an institution.

It can mean the difference between food on the table, or hunger.

It can mean the difference between access to essential medicines and health care, or tempting illness or death.

Many beneficiaries with disabilities rely on Social Security for most or all of their income. With benefits only about $1,100 a month, every cent counts, and over the years the impact of the chained CPI would be real and painful.

Cuts from the chained CPI could also lead to terrible life and death choices for over 8 million very-low income seniors and people with disabilities who rely on Supplemental Security Income. SSI benefits are just over $500 a month.

Think about that – $500 a month is just pocket change for many affluent Americans.

It’s a monthly payment for a high-end car, or a plane ticket for a vacation.

But it’s all that many SSI beneficiaries have to exist on, month after month. The chained CPI would cut SSI benefits not once, but twice: first, before the person ever applies for benefits, by lowering the initial payment level, and second, through lower annual cost-of-living adjustments.

With SSI benefits already extremely low, it’s hard to imagine how beneficiaries would get by after cuts from the chained CPI.

In closing, thank you to Senator Sanders, Senator Whitehouse, and Senator Merkley and to our colleagues for bringing us together today to highlight how the chained CPI would hurt working Americans, seniors, veterans, women, and people with disabilities. We stand united against this harmful benefit cut.

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After Rosa’s Law, One Step Closer to Erasing the “R-Word”

This week marks a great victory for disability advocates across the country. The Social Security Administration’s (SSA) announcement of its proposal to stop using the term “mental retardation” and start using “intellectual disability” in its official Listing of Impairments and other regulations is a victory larger than it may seem to many. This decision brings us one step closer to a world free of the R-word.

Just think, this victory comes just over two 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. Some might think two years is a long time, but the thousands of advocates like me who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily.

Today’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not specifically include Social Security or Supplemental Security Income, but SSA is making this change because it’s the right thing to do.

We know how powerful words are. Words also 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 IDD. 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.

But it’s not over yet – we need your help to keep the momentum going!

SSA will not be able to finalize this change until it goes through the rulemaking process required of all federal agencies. SSA issued its Notice of Proposed Rulemaking to stop using the R-word on Monday, January 28. The public has 30 days to comment – and SSA needs to hear from you.

Please visit the Federal Rulemaking portal at regulations.gov. Use the Search function to find docket number SSA-2012-0066 and then submit comments in support of ending the R-word. Comments are due on February 27, 2013.

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The Arc Applauds Social Security Administration Ending Use of the “R-Word”

Washington, DC – In an historic change for people with intellectual disabilities (ID), the Social Security Administration (SSA) announced its intent to stop using the phrase “mental retardation” and start using “intellectual disability” in its official Listing of Impairments.

This change, which The Arc and many other organizations advocated for, comes a little over two years after President Barack Obama signed Rosa’s Law. In 2010, The Arc was very involved in efforts to end the use of the “r-word” and worked to enact 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. While the legislation did not cover programs such as Medicare, Medicaid, and Social Security, it was an important stepping stone for shaping future legislation and efforts that will transform these outdated terms in all federal laws. The Social Security Administration’s actions are a welcome result of the success of Rosa’s Law.

“Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights. This is an important moment for people with disabilities because Social Security is a lifeline to so many – it allows people with ID to live in their communities and be as independent as possible. And now, the language the agency uses will reflect the respect people with ID deserve,” said Peter Berns, CEO of The Arc.

The proposed regulation published today has a 30-day comment period, and we encourage people to submit comments in support of the proposed regulation online by February 27, 2013.

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News From the Social Security Administration

Social Security Commissioner Michael J. Astrue shared with The Arc the following note regarding a welcome change in terminology in the Administration’s Listing of Impairments.

I am pleased to inform you that today we put on public display at the Office of the Federal Register a Notice of Proposed Rule Making (NPRM) to replace the term “mental retardation” with “intellectual disability” in our Listing of Impairments and in other appropriate sections of our rules.

Many of you have rightfully asserted that the term “mental retardation” has negative connotations, has become offensive to many people, and often results in misunderstandings about the nature of the disorder and those who have it. Partly in response to these concerns, Congress passed Rosa’s Law, which changed references to “mental retardation” in specified Federal laws to “intellectual disability,” and references to “a mentally retarded individual” to “an individual with an intellectual disability.” While Rosa’s Law did not require us to make any changes to our existing regulations, we are doing so in the spirit of the law and to join other agencies and organizations who are adopting the term “intellectual disability.”

Beginning Monday, you can view the NPRM online at www.regulations.gov.

Thank you for your continued support and cooperation with the Social Security Administration as we work to serve the needs of the American public.

Michael J. Astrue
Commissioner

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New Proposals in Budget Negotiations Could Result in Cuts to Social Security

Washington, DC – The Arc released the following statement in light of reports of new threats to Social Security in negotiations on a budget deal to avert the fiscal cliff. On the negotiating table is a change to the way benefits are calculated known as the “chained Consumer Price Index (CPI).”

“We are very disappointed by the newest proposals in Washington, DC that would result in a chained CPI. The chained CPI would cut all Social Security benefits, including for individuals receiving Social Security disability benefits and Supplemental Security Income. Social Security is an essential lifeline for individuals with disabilities, and the chained CPI would cut their benefits and unnecessarily damage their quality of life. Our nation cannot continue balancing the budget on the backs of individuals with disabilities and must preserve vital supports including Social Security, SSI, Medicaid, and Medicare,” said Marty Ford, Director, Public Policy Office, The Arc.

The chained CPI reduces the cost-of-living adjustment (COLA) that Social Security and Supplemental Security Income (SSI) beneficiaries receive in most years, resulting in people getting smaller benefit increases than they otherwise would under the current calculation.

Cuts from the chained CPI compound and get bigger every year. For the average Social Security Disability Insurance (SSDI) beneficiary, the chained CPI would mean a benefit cut of about $347 per year after 10 years, $720 per year after 20 years, and $1,084 per year after 30 years. After 30 years, the cut is roughly 1 months’ worth of benefits for the average SSDI beneficiary. For SSI, the chained CPI not only lowers the annual COLA but also reduces the initial SSI benefit, which is calculated using a federal benefit rate that adjusts annually for inflation.