The Agreement to Re-Open the Federal Government and Raise the Nation’s Debt Ceiling – What Does it Mean to The Arc?

The Arc is relieved that Congress reached a last minute agreement to reopen the federal government and avoid defaulting on our debts.  The government shutdown had already put in jeopardy services and supports that people with intellectual and developmental disabilities (I/DD) rely on, and the narrowly averted default would have resulted in an economic crisis in our country and around the world that would have affected all citizens.   However, despite this temporary victory, we recognize the very difficult challenges that lie ahead for the disability community in the next few months.

What is in the Agreement?  The measure, which passed by comfortable margins in both chambers and was signed shortly afterwards by President Obama, has five key provisions:

  1. reopening of the federal government through January 15 at sequestration levels (the approximately 5% automatic, across-the-board spending cuts for discretionary program);
  2. an extension of the debt limit until February 7 and a provision that requires a proactive vote to disapprove extending the debt limit, as opposed to having regular votes to raise it;
  3. establishment of a House-Senate budget conference committee to come up with long-term spending plans by December 13;
  4. a requirement for income verification for recipients of subsidies under the Affordable Care Act’s newly-established health insurance exchanges; and
  5. back pay for furloughed federal workers.

How does this impact The Arc?  The budget conference committee is a return to a more normal way of doing business in the Congress.  However, it does mean that everything is on the table for consideration, including  proposals harmful to people with I/DD that have surfaced in previous budget proposals.  Some of these have included cuts to entitlement programs that people with disabilities rely on for their health and economic security, such as block granting Medicaid and dramatically cutting spending for the program, turning Medicare into a voucher program and cutting payments to doctors, and reducing the costs of living adjustments for Social Security and other programs through the adoption of the “chained” consumer price index (CPI).  Discretionary programs (which include disability-related programs such as housing, education, and employment) also have been targeted for further cuts.   On the other hand, the budget conference committee leadership already met, with some leaders stressing that they must find common ground.  Learn more about the budget conference at Politico.com.

What Can The Arc Do?  The Arc and our network of advocates must be prepared to respond if the budget conference committee begins to seriously consider “entitlement reform,” which mostly consists of cuts and harmful changes to Medicaid, Social Security and its disability programs, and Medicare, as well as threats to funding for critical discretionary programs.  The Arc will monitor this closely.  Learn more about how to get involved by signing up for our Action E-List.

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

60_Minutes_logoSunday 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 or report it online.  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:

Happy 40th Birthday Section 504!

San Francisco Sit-InIn 1973, Congress passed the very first civil rights protection for people with disabilities. Section 504 of the Rehabilitation Act prohibits discrimination based on disability by any entity that receives federal funds. Senator Hubert Humphrey was a champion of civil rights for people with disabilities. He said, “[T]he time has come to firmly establish the right of disabled Americans to dignity and self-respect as equal and contributing members of society and to end the virtual isolation of millions of children and adults.”

As with any law, regulations needed to be written to define who a person with a disability was and what constituted discrimination. There was much controversy surrounding Section 504 and getting the regulations published was a battle that lasted for several years. Disability advocates had to file a lawsuit to get the government to finalize the regulations. Unfortunately, the court did not set a date by which the regulations had to be published. The disability community grew more frustrated. A coalition was formed to lead an effort to get regulations out. The coalition was called the American Coalition of Citizens with Disabilities.

The federal government set up a task force to study the regulations, but failed to include any individuals with disabilities among its members. The disability community feared that the rules were being watered down significantly. Rather than wait for weak regulations to come out and then submit comments, the community borrowed from the African American Civil Rights movement and organized a sit-in at the San Francisco office of what was then the Department of Health, Education and Welfare (HEW). The San Francisco sit-in lasted for 28 days! A refrain from those days was, “We can’t even get on the back of the bus.”

A Congressional hearing was held at the San Francisco HEW office where leaders of the disability rights movement (including Judy Heumann and Ed Roberts) gave compelling testimony about the discrimination each of them faced on a daily basis. A smaller group of disability rights advocates traveled to Washington and demonstrated in front of the HEW Secretary’s home and the church where the President was worshiping. Finally, on April 28, 1977 the Secretary of HEW signed the regulations.

Today, every federal agency has Section 504 regulations concerning the programs that receive funds from that particular agency. And today, discrimination is prohibited on the basis of disability in education, employment, state programs, health care facilities, airports, public libraries, public parks, local government buildings and programs; the list goes on and on.

Some Children with I/DD at Greater Risk from Flu

Young woman with the flu

Photo via nataliejohnson (Flickr)

The Centers for Disease Control and Prevention (CDC) just published a report on the results of an on-line study they did during the 2011-2012 influenza season regarding vaccination rates for children with neurologic and neurodevelopmental conditions.  Shockingly, the report indicated that only HALF of children surveyed were vaccinated or had an appointment to be vaccinated and out of those children who indicated they had an intellectual disability it was only slightly better at 52%.  Numbers like this are alarming due to when you consider the 2009 flu outbreak in which 336 children died. Of those, 146 were children with neurologic or neurodevelopmental conditions (76% indicating they had an intellectual disability).

The majority of families rely and trust their physician to provide them with information, expertise and advice on what is best for their child to keep them healthy. However, the study also found that even after this outbreak occurred many physicians still do not rate children with an intellectual disability as being at a high risk and needing the vaccination.

According to the CDC bulletin a child with an intellectual or developmental disability that requires special needs is at a higher risk than others due to the fact that they are more susceptible to developing complications and infections from the flu virus. These complications can include pneumonia, bronchitis, and can also increase the effects of already current chronic health problems. These complications can lead to hospitalization and in severe cases death.

While every parent has the right to choose whether to get their child vaccinated or not, studies like this will help to increase awareness of prevention and knowledge of parents and physicians to help them to make more informed decisions.

As fall rolls in and the flu season quickly approaches you can visit the HealthMap Vaccine Finder if you need help finding a location in your area to get vaccinated.

Report Highlights Severe Abuse of People with Disabilities Abroad

The International Task Force of the Consortium for Citizens with Disabilities (CCD) today released a report that highlights examples of the severe abuse and neglect of individuals with disabilities around the World.  The report, Neglected and Abused Abroad: A Look at the Severe Mistreatment of Individuals with Disabilities Around the World and How the U.S. Can Help, highlights just a few examples of the horrible treatment, abuse, and discrimination faced by individuals with a variety of disabilities in other countries. 

Some examples of abuse include:

  • In Ghana, people with intellectual and mental health disabilities suffer severe abuse in psychiatric institutions and “healing centers.”  Thousands of people are forced to live in these institutions, often against their will and with little possibility of challenging their confinement;
  • In Kenya, a 10-year old girl who is deaf was raped but faces barriers in the justice system because of her disability;
  • In Mexico, children with intellectual disabilities were  abandoned at a private facility without any documentation on their diagnosis or even their names;
  • Children in Paraguay were found in cells with walls smeared with excrement and reeking of urine; and
  • In Russia, people with physical disabilities are prisoners in their own homes because of the widespread physical inaccessibility of Russian cities.

“Our country has an obligation to share our knowledge of how to ensure  children and adults with disabilities live as full citizens, with dignity and independence,” said CCD Chair, Katy Neas of Easter Seals.  “It is imperative that the United States show our leadership by ratifying the Convention on the Rights of Persons with Disabilities this fall.”

The full report is available at: http://www.c-c-d.org/fichiers/CCD_Inter_TF-Neglected_and_Abused_Abroad.pdf

The CCD International Task Force calls on the United States Senate to ratify the Convention on the Rights of Persons with Disabilities – the CRPD.  Through ratification of this important treaty, the United States will be in a much better position under international law to influence, train, assist, and if necessary use diplomatic pressure to work towards the equal rights and treatment of individuals with disabilities across the world – rights which have existed in the United States for years.

CCD is a coalition of over 100 national consumer, advocacy, provider and professional organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.  For years, the coalition and its members have been calling on the U.S. to ratify the CRPD protecting the rights and dignity of persons with disabilities.  CCD calls on the entire U.S. Senate to quickly provide its advice and consent to the treaty and restore the United States to a global leadership position on disability and human rights. 

The Arc Takes Bellevue, Washington by Storm

Self-Advocates working togetherEarlier this month, The Arc’s network of disability advocates and professionals descended on Bellevue, Washington for The Arc’s Annual Convention. The three day event was an exciting mixture of education, inspiration, and of course fun.

As always, having more than 600 of our advocates joining together proved to be a moving and powerful experience.  There is no better way to see the diversity and power of our network than when our chapters join together and share their many accomplishments. While our chapters have a lot of variety, they have a lot in common.  Convention allowed many to see how our chapters are working with National Initiatives of The Arc in different locations across the country for a common cause. Many of our chapters even had the opportunity to present together during concurrent sessions on a variety of topics including sibling workshops, self-advocacy programs, and technology.

A highlight of the weekend for many was getting to know Buzz and Zach Bissinger. The honesty and heart with which Buzz wrote Father’s Day was present when Buzz gave his keynote address. While Buzz and Zach captivated the audience, the event was also special for them.  When you attend one of our national events you leave knowing more about The Arc and its robust network.  We leave an impression on everyone we touch.

This year’s technology focus was also a great hit with amazing tech demos from The Arc of Baltimore, The Microsoft Store, and The Coleman Institute. Exclusive access to the Microsoft store gave a select group of attendees some hands on experience and training from experts.  And, our closing plenary offered amazing insights from Jack P. McArtney, Director, Corporate & Community Responsibility; Global Corporate Citizenship Group of Verizon, Inc. and Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group.

To wrap things up, we rolled out The Arc’s red carpet prior to The Arc & Sprout National Film Festival! Self-advocates, other attendees, and national staff strutted their stuff on the red carpet and brought a bit of Hollywood glam to our closing event.

Planning is already in the works for 2014’s Convention in New Orleans from, September 30 – October 2. Save the date and join us for another exciting event!

Happy Birthday Social Security!

Social Security CardsThis 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 (I/DD).

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

Social Security Administration Erases the “R-Word”

This week marks a great victory for people with disabilities across the United States.  The Social Security Administration (SSA) announced that it will no longer use the term “mental retardation” and will instead use “intellectual disability” in its official Listing of Impairments and other regulations. SSA started this process in January, and their decision brings us one step closer to a policy world free of the R-word.

This victory comes less than three 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. The thousands of advocates who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily. However, once SSA decided to make a change, the agency was able to move from the initial public notice of proposed rulemaking to the final rule in just eight months.

SSA’s decision to use modern, respectful terminology will affect millions of children and adults with intellectual disability who over the course of their lives may need Social Security or Supplemental Security Income (SSI). It’s important to remember that this change will not alter who qualifies for benefits. SSA’s use of “intellectual disability” will not change whether an applicant will qualify for benefits, nor will it change current benefits for people who originally qualified for Social Security disability or SSI benefits with a diagnosis of “mental retardation.”

SSA’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not include Social Security or SSI, but SSA is making this change because it’s the right thing to do. The Arc and many other disability groups commented in support of this proposed change, which SSA first proposed in January 2013.

We know how powerful words are.  As Rosa Marcellino’s brother Nick said, “What you call people is how you treat them.” Words 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 I/DD.  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.

Happy Birthday ADA!

This week marks the 23rd anniversary of the passage of the Americans with Disabilities Act (ADA).  Signed by President George H. W. Bush in 1990, the ADA is the most important civil rights law for Americans with disabilities.  The ADA has increased physical access to all kinds of stores, government buildings, and offices.  In the work place, we are seeing more people who have disabilities working alongside their colleagues who do not have disabilities.  At large conferences, it is routine now to see interpreters for the deaf and hard of hearing and Braille documents for people who are blind or have visual impairments.

For people with intellectual and developmental disabilities (I/DD), the ADA has meant having the right to receive services in the most integrated setting appropriate.  Many people with I/DD have been able to leave large, segregated institutions and move into homes in communities.  We have seen a huge increase in home and community-based services and a steady decline in the number of people living in institutions over the past 23 years.

But, we still have more to do.  Too many people are on long waiting lists for community-based services and supports and are at risk of having to go into an institution.  Too many people who want a home of their own are still living in large congregate settings.  And, too many people with I/DD are living in nursing homes.  Far too many individuals with disabilities want to work but are unemployed.

While many barriers to full participation in society remain, let’s take a minute to celebrate the many positive changes that have been brought about by the ADA!

Here’s what some people and groups are saying about the ADA on this anniversary:

Autism NOW’s Co-Director Receives National Honor

Amy GoodmanEarlier this month, Amy Goodman, Co-Director of the Autism NOW Center, received the Outstanding Advocate of the Year award from The Autism Society of America. This comes as no surprise to The Arc’s national staff who work with Amy on a daily basis. Her passion for what she does is present in every task she undertakes.  The Autism NOW Center wouldn’t be the success it is without Amy’s dedication. You can view Amy at work answering questions in The Autism NOW Answer Series.

Read in Amy’s own words why winning this award is so important to her:

This award means a lot to me because it is proof that all my hard work and dedication to my profession has paid off and that individuals do appreciate me. It stands as a testament that what I do makes a difference in the lives of individuals with autism. I am so lucky to be able to share my life with those in need and I feel proud to be able to say I’m an individual with autism who has paved the way for others to enjoy life to the fullest extent.

This award is not only for me personally but to be shared with all my colleagues at The Arc, my friends and colleagues at The Autism Society of America, Robert Hunter of The Grateful Dead for enabling my brother to make a connection with Kent Moreno, who told us about Asperger’s syndrome in the first place, and all my friends and colleagues at Marshall University and the College Support program because if it were not for all their support and encouragement I would not be where I am today. I owe it all to them.

I may not move mountains by myself, but I can advocate and give others a voice they may not know they even have. This award has validated my life for me and I now know I am where I need to be and that I will survive in this world. It has given me a sense of self-worth and the confidence to know I can achieve or accomplish things above and beyond what others said I would never do.