The Arc Reacts to Approval of Deal to Avert “Fiscal Cliff”

Washington, DC – The Arc released the following statement as the Congress approved a deal to avert going over the “fiscal cliff” – the series of harmful tax increases and spending cuts which Congress and the White House have been seeking to avoid for several weeks.  With time running out, The Arc’s advocates had encouraged Congress to act before the deadline to protect disability related programs and extend tax cuts for the middle class.

“The Arc appreciates the Administration’s outreach to Congress to get this legislation passed so that middle class families with people with disabilities don’t see their income taxes rise in the New Year.  Most people with intellectual and developmental disabilities and their families cannot afford a tax increase and this deal protects them.  They also cannot afford cuts to critical programs and this legislation does not include such cuts.

“Throughout these tense weeks of negotiation, there were proposals on the table that would have greatly harmed people with intellectual and developmental disabilities (I/DD), including a new way of calculating Social Security benefits known as the ‘chained CPI’ that would have impacted the ability of millions of people with I/DD and other disabilities to be as independent as possible.  This threat was excluded in this piece of legislation, as were harmful changes to Medicaid, a lifeline to people with I/DD.

“Going into 2013, there will continue to be mounting pressure to generate additional revenue and to find additional cuts in the federal budget to reduce the deficit further, including the Medicaid, Medicare, and Social Security programs.  The Arc’s advocates will be vigilant, putting pressure on Congress to protect these lifeline programs.

“The final legislation does include a repeal of the CLASS Act, a part of the Affordable Care Act to address access to costly long term services and supports in our society.  We are deeply disappointed that this framework for solving a critical problem was repealed.  However, we look to the Commission created in the legislation to work expeditiously to determine next steps to address this problem, including consideration of the needs of people with I/DD,” said Peter Berns, CEO of The Arc.

Additional legislation will be necessary to address other aspects of the nation’s fiscal situation in the next three months, including an increase in the debt ceiling, the end of the 2-month extension included in this legislation of the sequester (automatic cuts), and appropriations for the remainder of Fiscal Year 2013.  These deadlines will set the stage for additional negotiations between the Congress and the White House.  The Arc will be working hard during these negotiations to preserve programs that are vital to people with I/DD.

The Arc Reacts to New Proposals in Budget Negotiations That 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.

Parent, Advocate for The Arc Lunches with Vice President Biden to Discuss Fiscal Cliff’s Impact on His Family

Washington, DC – Today, Bob Hage of Pennington, New Jersey, a parent of twin daughters with significant disabilities and tireless advocate for The Arc, met with Vice President Joe Biden for lunch along with six other individuals at the Metro 29 Diner in Arlington, Virginia to share his story about how a $2,000 or more middle class tax increase as a result of going over the “fiscal cliff” will impact his family’s ability to pay for disability-related expenses in 2013.

Bob Hage and his wife Odette Adrian are a middle class family struggling to make ends meet. They have a 13-year old son Vann, and twin 9-year old daughters Annika and Maya, who have severe developmental disabilities and are non-verbal and medically fragile. As a family with children with special needs, they experience the same expenses and stresses other families encounter. However, they also face the additional financial, emotional, and physical challenges of providing very expensive care for two of their children.

“This was a critical opportunity to impress upon the Vice President the importance of protecting Annika, Maya, and millions of families like ours from a tax increase that will have devastating consequences.  My daughters can’t afford to lose the ground they have gained through therapies that will allow them to reach their full potential.  Not only did Vice President Biden listen, he clearly understands the challenges families like mine face, and I walked away trusting that the Vice President will do everything he can to protect my daughters’ future,” said Bob Hage.

Bob Hage and his wife Odette Adrian want Annika and Maya to have happy and fulfilling lives just as other parents want for their children.  In order for them to help Annika and Maya achieve these goals, they need to pay for critical services.  If the country goes over the “fiscal cliff” and their taxes go up $2000 or more, they will be forced to eliminate some of their daughters’ therapies and activities, which have proven to be crucial to their development.

Annika and Maya go to speech therapy, which has been instrumental in moving them from being totally dependent on liquid tube feedings to eating all their nutrition from pureed foods. Currently, speech therapy’s primary goal is to help Annika and Maya learn to chew so they can eat solid food.

Annika and Maya have significant dental issues and anything other than regular checkups, such as fillings and beyond, requires hospitalization and anesthesia.  These other routine procedures are not covered by their medical insurance and will be cost prohibitive.

Both girls participate in weekly music and gymnastics classes for children with special needs.  While music and gymnastics is recreational for most children, it is vitally important to Annika and Maya’s development.  The music class focuses on building finger strength and coordination through piano and helps the girls to vocalize through singing.  The gymnastics class concentrates on building muscular strength and endurance which is especially important for children with low muscular tone.

An increase of $2,000 or more in taxes would have a major impact on the Adrian-Hages’ ability to provide the services and supports their children with severe disabilities need.

“Annika and Maya shouldn’t face the consequences of gridlock in Washington over taxes.  My girls need these services to learn and keep basic life skills, like chewing food, and to gain some strength so that they can be as independent as possible.  But my wife and I may be forced to make some unimaginable choices if our taxes go up by $2,000 at the beginning of the year,” said Bob Hage.

The Arc at the Table with President Obama to Discuss Tax Cuts for the Middle Class, Budget and Medicaid

Washington, DC– Today, The Arc’s CEO Peter Berns participated in a small meeting with President Barack Obama, Vice President Joe Biden, and senior economic advisors about the President’s goal to stop middle class tax increases and to raise revenues to help invest in the nation and reduce the deficit.  The discussion centered on the urgency of passing a plan to avert raising taxes on the middle class and to raise revenues to finance the federal government without allowing drastic cuts to programs that people with intellectual and developmental disabilities (I/DD) and other vulnerable groups rely on, like education, housing and employment.  These cuts are scheduled to take place on January 1, 2013, along with the expiration of a variety of tax provisions.  Without a deal this year, The Arc is very concerned about the future of Medicaid and Supplemental Security Income, along with Social Security and Medicare.

“I think everyone agrees that raising taxes on the middle class will hurt families, and that it would be particularly troubling to those that have a loved one with I/DD.  These families report that they already don’t have the money they need for the care and support their loved ones need to live a decent life in the community. What will they do if they suddenly have a bigger tax bill come January 1st?”  Berns said.

“We welcome the President’s framework for generating revenue and protecting low income families,” Berns added.  “Medicaid, Medicare, Social Security, and Supplemental Security Income, which are lifeline programs for people with disabilities, should not be at risk in these budget negotiations.  This approach from President Obama would help keep our nation’s commitment to people with disabilities.”

The Arc has been on the front lines of the recent budget battles to protect Medicaid, Social Security, Supplemental Security Income, and Medicare from cuts.  As the nation faces this January 1 deadline, known as the “fiscal cliff”, The Arc is urging Congress to restore the scheduled cuts in non-defense discretionary programs and find other ways – specifically through increasing revenues as included in President Obama’s plan – to move the nation forward.  This effort is critical to protecting the people that rely on Medicaid, Social Security, Supplemental Security Income, and Medicare from losing these critical services and supports.

“We can’t afford to not protect Medicaid.  Medicaid is the lifeline keeping people with disabilities from unfathomable alternatives – like being institutionalized and losing their independence – and preserving all that we have worked for as a nation over the last 60 years to bring people with disabilities out of the shadows and into society,” said Berns.

Berns was joined at the White House by Sister Simone Campbell, NETWORK, Chad Griffin, Human Rights Campaign, Wade Henderson, Leadership Conference on Civil Rights, Deepa Iyer, National Council of Asian Pacific Americans, Ben Jealous, NAACP, Marc Morial, National Urban League, Janet Murguia, National Council of La Raza, Barry Rand, AARP, Kristin Rowe-Finkbeiner,, Rev. Al Sharpton, National Action Network, Aaron Smith, Young Invincibles, and Rev. Jim Wallis, Sojourners.

The Arc Opposes House Republicans’ Budget Blueprint

Washington, DC – The Fiscal Year 2013 budget proposal released today by House Budget Committee Chairman Paul Ryan (R-WI) includes a number of provisions that would be devastating to people with intellectual and developmental disabilities (I/DD), their families, and services providers. By far, the most damaging part of the plan would be block granting the Medicaid program. Federal spending on Medicaid would be slashed by $810 billion over ten years, leaving cash-strapped states to fill in the funding gaps with lowered standards and very little oversight.

“It is deeply troubling that, in the name of deficit reduction, there is absolutely no shared sacrifice. The House Budget proposes to decimate the Medicaid program, taking away essential health and long term services and supports for our middle and low income citizens, while providing for tax breaks for the wealthiest Americans and corporations. It should be called the ‘fend for yourself’ budget,” said Peter V. Berns, CEO of The Arc.

This budget plan would also radically transform Medicare by converting it to a voucher program, resulting in most people with disabilities having to pick up a greater share of the tab as they get older. And it would repeal the Affordable Care Act, eliminating expansions of health care that benefit people with disabilities and critical insurance reforms that protect against insurance discrimination.

The Arc’s Statement on Budget Deal and Impact on People with Intellectual and Developmental Disabilities

WASHINGTON, DC – The Arc, the nation’s largest and oldest human rights
organization for people with intellectual and/or developmental disabilities,
released the following statement from its CEO Peter V. Berns on the passage of
the budget and debt ceiling deal in Washington.

“While we are glad that the immediate crisis has passed and Medicaid survived
the first round of budget cuts in Washington, this fight is far from over. Now
more than ever, people with intellectual and developmental disabilities, their
families, friends and colleagues need to stand up and make their voices heard.
We must continue to press Congress to protect people with disabilities. The
Medicaid lifeline, along with other programs that help ensure inclusion of
people with intellectual and developmental disabilities in society, are still at
stake,” said Berns.


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

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 (I/DD).  Leading up to the vote, The Arc, the nation’s largest and oldest human services organization for the I/DD community serving more than a million people with I/DD 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 I/DD, these cuts would have a huge impact on their health and lives. People with I/DD 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 I/DD.

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.”

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 (I/DD).  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 I/DD 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 I/DD would no longer be entitled to Medicaid to pay for their health care services such as prescription drugs and doctor visits. Many people with I/DD 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 I/DD.

Long Term Services and Supports.  People with I/DD 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 I/DD 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 I/DD, 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 I/DD 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.