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 (I/DD) 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.

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 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, MomsRising.org, Rev. Al Sharpton, National Action Network, Aaron Smith, Young Invincibles, and Rev. Jim Wallis, Sojourners.

The Arc Reacts to the U.S. Supreme Court’s Decision on the Affordable Care Act

Washington, DC – The Arc released the following statement in response to the U.S. Supreme Court’s decision to uphold the Affordable Care Act.

“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act.  Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities.  It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long.

“But the ruling is not perfect for people with I/DD.  The Arc is concerned that disallowing the federal government the ability to withhold Medicaid dollars from states that don’t expand their program to cover more of the uninsured might mean that people with I/DD who would have benefitted from the expansion could be left behind.  Medicaid is an incredibly important lifeline for people with I/DD, providing health care and long term services and supports.

“We will carefully watch how states react to this development and encourage our advocates across the country to put pressure on their state leaders to do the right thing and expand their Medicaid program,” said Marty Ford, Director of Public Policy for The Arc.

Top Reasons Why The Arc Supports the Affordable Care Act (ACA)

Health insurance Reforms in the ACA

  • Eliminates pre-existing condition exclusions
  • Bans annual and lifetime limits
  • Ends the practice of rescissions (insurance coverage is cancelled when a person develops a serious health condition)
  • Improves appeals process including independent reviews
  • Requires that 80% of health insurance premium dollars are paying for health care
  • Enhances state capacity to regulate unfair increases in insurance rates
  • Prohibits considering health status in calculating premiums (2014)
  • Requires guaranteed issue and renewals (2014)
  • Prohibits discrimination based on health status (2014)

The ACA Expanding Access to Coverage

  • Establishes temporary high risk pools to cover those who are currently uninsured (until 2014)
  • Allows coverage for dependents until age 26
  • Creates health insurance Exchanges for individuals and small employers to purchase insurance (2014)
  • Provides significant subsidies to assist low income individuals to purchase coverage in the Exchanges and provides tax credits to help small employers
  • Includes coverage of dental and vision care for children in the Exchanges
  • Includes mental health services, rehabilitative and habilitative services and devices, and other critical disability services in the health plans sold in the Exchanges

The ACA Expands Medicaid

  • Expands Medicaid eligibility to 138% of the federal poverty level
    • New method of income disregards
    • No asset test
  • 16 million new beneficiaries by 2019
  • Federal government pays 100% till 2016 (phase down to 90% in 2020)

The ACA and Long Term Services and Supports

  • Establishes the Community First Choice Option for states to cover comprehensive community attendant services under the state’s optional service plan
  • Improves existing Section 1915(i) option for home and community based services
  • Creates a new state balancing incentives to reduce institutional bias of Medicaid
  • Extends “Money Follows the Person” Demonstration
  • Authorizes the CLASS program

Other Medicaid and Medicare Improvements

  • Gives states the option to provide health homes for Medicaid enrollees with chronic conditions
  • Allows a free annual Medicare well visit with assessments and individualized prevention plan
  • Eliminates Medicare Part D (drug coverage) co-pays for dual eligibles receiving waiver services
  • Improves Medicare Part D access to key anti-seizure, anti-anxiety and anti-spasm medications

Selected Prevention, Provider Training, Data Collection and Accessibility Issues Addressed by the ACA

  • Eliminates co-pays for critical prevention services
  • Creates the Prevention and Public Health Fund (PPHF) to provide new funding for transformational investments in promoting wellness, preventing disease, and other public health priorities
  • Increases opportunities for training of health care providers (including dentists) on the needs of persons with developmental and other disabilities
  • Authorizes new training programs for direct support workers who provide long term services and supports
  • Improves data collection on where people with disabilities access health services and where accessible facilities can be found
  • Adds disability as a category to measure health disparities and in health care quality reporting surveys
  • Requires the establishment of criteria for accessible medical diagnostic equipment

Key disability Data Regarding Access to Health Care

According to the Centers on Medicare and Medicaid Services (CMS)

15% of the uninsured have at least one disability (HHS/ASPE Analysis of 2010 CPS self-reported data)

12% of uninsured adults with incomes below 138% of the federal poverty level report limited ability to work or unable to work (Urban Institute Analysis of 2006 MEPS data)

Altman, B. Bernstein A. Disability and health in the United States, 2001-2005.  Hyattsville, MD National Center for Health Statistics 2008

  • Adults 18-64 with cognitive difficulty, 13.6 % had no insurance, 32.1% private insurance, 41.0% Medicaid, and 27.0% Medicare.
  • Adults 18-64 with disabilities are less likely than those without disabilities to have private health insurance coverage – 46.3% for those with complex activity limitation and 61.3% with basic actions difficulty (61.3%) compared to 75.2% with no disability.

U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Children with Special Health Care Needs in Context: A Portrait of States and the Nation 2007.  Rockville, MD: U.S. Department of Health and Human Services 2011.

  • Children with special health care needs – 29. 4% had inadequate coverage compared to 22.1% of children without special health care needs. Inadequate insurance is a far more prevalent problem than gaps in insurance or lack of insurance among children with special health care needs. (29.4% inadequate insurance whereas 12.3% had gaps in insurance or no insurance).
  • Children with special health care needs have unmet needs for specialty medical care—27% had problems accessing specialists and of the children with emotional, behavioral or developmental conditions, 48.4% did not receive mental health services.

Children with special health care needs are defined in the National Survey of Children’s Health as those who have one or more chronic physical, developmental, behavioral or emotional conditions for which they require an above routine type or amount of health and related services.   14-19% of children in the U.S. meet this need.

Developmental Disabilities Awareness Month Q&A with T.J. Sutcliffe

This month, The Arc’s blog will feature a Q & A with members of The Arc’s national office staff to help raise awareness of issues important to the I/DD community during Developmental Disabilities Awareness Month. T.J. Sutcliffe is a policy advocate for The Arc working to promote and protect the rights of individuals with I/DD through positive public policy.

Don't Cut Our Lifeline LogoQ. T.J., you work on the front lines in Washington, D.C. helping to shape public policy to meet the needs of people with I/DD. Why is it important to take advantage of Developmental Disabilities Awareness Month in March to get involved in public policy?

“When a Member of Congress hears directly from a constituent with a disability … it can make the issue real in a way that statistics just can’t.”

A. Developmental Disabilities Awareness Month is the perfect time for people with I/DD, their families, and friends to get involved in public policy. Right now, the U.S. Congress is starting to look at Federal funding for next year, and we know that funding is going to be very tight. It’s a great time to speak up early in the process, and let Congress know that programs like Medicaid are a lifeline for people with I/DD and their families, and must be sustained. Also, a huge part of awareness is telling our stories – and the stories of people with I/DD and their families are incredibly powerful. When a Member of Congress hears directly from a constituent with a disability, a parent, a sibling, a friend, or a neighbor it can make the issue real in a way that statistics just can’t. So don’t wait. Check out The Arc’s “Don’t Cut Our Lifeline” Medicaid toolkit and visit The Arc’s Action Center to find out how you can get involved.

Reaction from The Arc on The Super Committee Not Reaching a Deal

Washington, DC – As the nation’s largest organization working on behalf of people with intellectual and developmental disabilities (I/DD), The Arc’s CEO Peter V. Berns released the following statement on today’s announcement that Members of the Joint Select Committee on Deficit Reduction have not reached a deal to reduce the nation’s deficit by at least $1.2 trillion over 10 years.

“Throughout the Committee’s process, The Arc advocated for protecting Medicaid, Medicare and Social Security because the budget cannot be balanced on the backs of people with disabilities. It is disappointing that the Committee could not come to an agreement that would have protected these critical programs while ensuring significant revenues were part of the solution. Unfortunately, no deal at the moment leaves lots of unknowns for the rest of the programs on which people with disabilities rely on to live independent lives.

“The Arc believes we must strengthen the economy while protecting the lifelines of people with disabilities, and to honor that commitment, bring in sufficient revenues to provide necessary services. We appreciate Members of Congress who stood their ground and opposed deep cuts to Medicaid, Medicare and Social Security.

“We recognize that this was a missed opportunity, when Members of Congress could have worked across party lines and found a solution to a deficit and revenue problem facing us all – young and old, people with disabilities and without, wealthy and poor. It will take a true bipartisan effort to ensure a secure future for people with disabilities, the elderly, and low income people. Individuals with disabilities, their families, and the professionals who support them will continue to monitor the budget process and advocate for their lifeline.”

The Arc of the United States Announces the Launch of its New Medicaid Reference Desk

Washington, DC – Today, The Arc of The United States is announcing the launch of the new Medicaid Reference Desk. This resource is intended to help individuals with intellectual and developmental disabilities (I/DD) and their families as they navigate the complexities of Medicaid benefits, services and supports.

The Medicaid Reference Desk is an accessible, detailed, state-by-state information source about Medicaid benefits, which includes a glossary of terms, answers to frequently asked questions, person-centered planning resources and a blog from The Arc’s training specialist about issues related to Medicaid, self-advocacy and person-centered planning.

“This website helps individuals with intellectual and developmental disabilities and others access and gain knowledge about Medicaid, which is an essential lifeline for millions of individuals with intellectual and developmental disabilities and their families. As the largest organization defending the civil rights of people with intellectual and developmental disabilities, we are excited about the opportunities the Medicaid Reference Desk can provide to families across the country,” said Peter V. Berns, CEO of The Arc.

For people with disabilities and for those who provide their care, Medicaid serves as a valuable safety net. Often the only source of financial assistance for health care, Medicaid plays a critical role for people with disabilities in providing coverage and access to care. At least half of the funds for Medicaid programs come from the federal government with the remainder coming from state funds. Federal law contains detailed requirements and limitations on eligibility, services, and financing, but state laws vary.

This project was made possible by a grant from the U.S. Department of Health and Human Services, Administration on Developmental Disabilities (Grant No. 90 DN0215). You can explore the Medicaid Reference Desk on The Arc’s Website: www.thedesk.info.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, 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 I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

New Medicaid Resource Available from The Arc

The Arc is excited to announce a valuable new resource available at www.thearc.org to help guide people with intellectual and developmental disabilities and their families through the complexities of Medicaid benefits, services and supports. The Medicaid Reference Desk offers detailed, state-by-state information about Medicaid benefits, a glossary of terms, answers to frequently asked questions, person-centered planning resources and a blog from The Arc’s training specialist about issues related to Medicaid, self-advocacy and person-centered planning.

Medicaid is the largest source of financing for disabilities services in the United States.  For people with disabilities and for those who provide their care, Medicaid serves as a valuable safety net.  Often the only source of financial assistance for health care, Medicaid plays a critical role for people with disabilities in providing coverage and access to care. Medicaid is, however, extremely complicated.  At least half of the funds for Medicaid programs come from the Federal government with the remainder coming from state funds.  Federal law contains detailed requirements and limitations on eligibility, services, and financing. But, state law varies widely.

This project was made possible by a grant from the U.S. Department of Health and Human Services, Administration on Developmental Disabilities (Grant No. 90 DN0215). We encourage you to explore the Medicaid Reference Desk via www.thedesk.info.

Why FINDS Matters – An Addition to Your Advocacy Toolkit

FINDS report coverThe Arc’s amazing network of advocates has been working tirelessly to ensure that Medicaid does not suffer budget cuts with the “Don’t Cut Our Lifeline Campaign.” From the debt ceiling negotiations earlier this summer to current outreach to Members of Congress to ensure that individuals who rely on Medicaid do not lose essential services, our advocates have been busy this summer!

Hearing personal stories from individuals with intellectual and developmental disabilities (I/DD) and their families has helped make Members of Congress stop seeing Medicaid as just another entitlement program and see it as an important lifeline for millions of Americans. While these stories have helped to enlighten elected officials, many still don’t see the true scope of what Medicaid means to families across the country. This is where The Arc’s FINDS (The Family and Individual Needs for Disability Supports) Survey can help.

Have you read the report on The FINDS survey yet? You should. The startling results provide supporting data for the “Don’t Cut Our Lifeline” campaign. With over 5,000 parents, siblings, children, grandparents and relatives of individuals with I/DD surveyed, the results can’t be ignored. Most telling was the insight from caregivers about how they provide for the supports for their loved ones with I/DD:

  • Fifty-two percent of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program
  • People with severe I/DD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild I/DD were more likely to have received supports from a family member paid out of personal or family sources (56%), most often the personal income of a parent, family member or other caregiver
  • Nearly two-thirds of family caregivers (62%) are paying for some care out of pocket. Family caregivers struggle to find afterschool care (80%), reliable home care providers (84%) and community-based care (82%)

The challenges facing family caregivers also provide support for the “Don’t Cut Our Lifeline” campaign:

  • Overall, 62% report experiencing decreases in services and 32% were waiting for government funded services, most for more than 5 years
  • More than 40% of family caregivers reported the person with I/DD had unmet support needs during the last year for running errands or seeing a doctor (48%), managing finances (46%), transportation (45%) and household management (41%)

Many of you are living the reality behind these data points. The survey is a powerful tool you can use to get that point across to Members of Congress or others who can help the millions of families and individuals who depend on Medicaid. Find more information about how the FINDS results support the “Don’t Cut Our Lifeline” campaign, then find out more about what you can do to help here.