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.

Celebrating the Anniversary of the Affordable Care Act

On the two year anniversary of the signing of the Affordable Care Act (ACA), I am reminded of the over two decades of health care advocacy by The Arc, and of one family in particular that came to the White House with me last summer to make the case to senior officials to protect the Medicaid lifeline.

This family has been through so much in our health care system with their 2 year old son, who has DiGeorge Syndrome. He was born without a pulmonary artery, has had a couple of strokes and heart surgeries, and has been on a ventilator since birth. He spent his first six and half months in the hospital, and hit the million dollar cap on his mother’s insurance by end of April 2010.

This little boy’s medical costs were so high that, even with two incomes, they were going to lose their home and everything else they worked hard for until receiving Medicaid. While the ACA won’t remove every insurance road block in his life, if the law had been in place when he was born, it could have made things a little easier for the family.

With families like this one in mind, The Arc has been a leader of the health reform charge in the disability community, calling for: the elimination of pre-existing conditions, ending discrimination in health care, expanding Medicaid eligibility, and universal health care coverage. While progress toward these goals has been achieved over the years, comprehensive health insurance reform was an elusive goal until the passage of the ACA. Today we can celebrate:

  • Kids can access health insurance now that was previously denied because of a pre-existing condition;
  • Young adults can stay on their parents private health insurance plan until they turn 26;
  • Access to free preventive care – like mammograms, colonoscopies, and other testing;
  • Health insurance companies can no longer arbitrarily place a life time limit on health insurance coverage; and
  • Insurance companies must justify large premium increases.

We have even more to look forward to in 2014, when the private health insurance markets known as the exchanges will be up and running in every state. These insurance market places will be open to small businesses and individuals in need of affordable health insurance, allowing the previously uninsured to find coverage they can fit in their budgets. There will be help for people who are low income to afford the insurance. Children’s dental and vision services, rehabilitative and habilitative services and devices for all ages, mental health and behavioral health services will be part of the health plans sold in the exchanges.

Medicaid coverage will be expanded to adults earning up to 133% of poverty, an expansion likely to benefit many adults with disabilities who may not qualify for Social Security benefits or earn too much to qualify for Medicaid currently. Pre-existing conditions limits for adults will be eliminated and nondiscrimination provisions will take effect. Insurance will be less expensive for people with health conditions because insurance companies will have limits on what they can charge.

Health care coverage matters and people with disabilities have much to gain from implementing these reforms. Your advocacy helped make it happen, and today we can take a moment celebrate your accomplishment!

The Arc Responds to the U.S. House of Representatives Vote to Repeal the CLASS Program

Washington, DC – The Arc of the United States, released the following statement in response to the U.S. House of Representatives vote to repeal the Community Living Assistance Services and Supports (CLASS) Program.

“Repealing the CLASS Program could force Americans to wait another generation for a solution to the need for long term services.  This bill doesn’t change the fact that many Americans require these services, and it certainly doesn’t relieve the pressure off of Medicaid so that Medicaid can better serve the needs of low income communities.  This vote won’t be the last say on this issue, and The Arc stands ready to work with Congress and the Administration to find a workable solution,” said Peter V. Berns, CEO of The Arc.

The Community Living Assistance Services and Supports (CLASS) Program was created by the Affordable Care Act to help working adults prepare for their future in the event they need help maintaining independence in the community. If CLASS is not implemented, the Medicaid program will continue to take on the load of long term service needs for many individuals. Average home and community-based care now costs over $21,000 per year.  Few Americans have insurance to cover these costs.  Only 3% have private long term care insurance and the majority are forced to impoverish themselves to qualify for Medicaid.

The Arc Joins in Filing Supreme Court Amicus Brief on Affordable Care Act

WASHINGTON, D.C. – The Arc released the following statement upon joining other organizations in filing an amicus brief to the Supreme Court in advance of consideration of certain provisions of the Affordable Care Act. This particular effort focuses on the individual mandate to obtain health insurance, with the overarching goal of coverage for all Americans, including people with intellectual and developmental disabilities.

“Without a doubt, the Affordable Care Act is the most significant law for people with disabilities in over twenty years. The threats to the individual mandate to obtain health insurance are too dangerous for us to sit on the sidelines. Without an obligation to buy health insurance, our country won’t be able to make significant strides toward covering everyone, including people with pre-existing conditions. The individual mandate will reduce costs in the entire health care system. The Arc won’t waiver in our commitment to this law and the real changes and cost savings to our system that will undoubtedly benefit people with disabilities, their families, the workers that support them, and our entire nation,” said Peter V. Berns, CEO of The Arc.

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.”

Affordable Care Act Vital to People with I/DD

Vigorous advocacy by The Arc and a coalition of disability rights and other champions was crucial to the enactment of the historic health care reform legislation nine months ago. The Patient Protection and Affordable Health Care Act and the Health Care and Education Reconciliation Act of 2010 (together known as the Affordable Care Act) contain numerous provisions of importance to people with intellectual and developmental disabilities (I/DD).

Now, the constitutionality of the Affordable Care Act is being tested. A narrow ruling yesterday in Virginia on the constitutionality of a provision of the Affordable Care Act is one of many recent rulings on similar cases in the past few months.

Opponents of reform have filed more than 20 different legal challenges since the law passed. The Administration’s motion to dismiss 12 of these cases has already been granted by judges. Moreover, in two cases, federal judges looked at the merits of the opponents’ arguments and determined that the Affordable Care Act is constitutional and upheld the law.

Since the health reform law was passed there’s been tremendous progress to strengthen the nation’s health care system. A new patient’s bill of rights has been implemented to end some of the worst insurance company abuses and we are on a path to eliminate discrimination against people with disabilities in health insurance.

It’s vital to our constituency that the courts find the Affordable Care Act constitutional, so that people with I/DD can have access to the following provisions and more:

  • Prohibiting private health insurance exclusions for pre-existing conditions.
  • Expanding Medicaid to cover individuals with incomes up to 133 percent of the federal poverty line (approximately $29,000 per year for a family of four).
  • Ensuring that minimum covered benefits include products and services that enable people with disabilities to maintain and improve function, such as rehabilitation and habilitation services and devices.
  • Improving training of physicians, dentists and allied health professionals on how to treat persons with disabilities.
  • Medicaid Community First Choice Option long term services and supportswith a 6 percent increase in the Federal Medical Assistance Percentage (or FMAP).

A member of The Arc who is a parent and a sibling in Minnesota said, “People with disabilities — especially young people — can look to a future free from the discrimination of being denied coverage due to preexisting conditions. This legislation is a relief for families and represents the hope we have that our needs will be met.”

Read more on Health Care Court Ruling on The White House Blog.

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The Arc of the United States (The Arc), the nation’s oldest and largest advocacy group for people with intellectual and developmental disabilities, joined with other disability and disease‐specific organizations to support the arguments of the United States in opposing the Commonwealth of Virginia’s legal challenge to the constitutionality of the new health reform law.

People with disabilities are often denied health coverage because of their pre‐existing conditions. Developmental disabilities, such as intellectual disability, autism, Down syndrome, and cerebral palsy, originate in childhood and constitute pre‐existing conditions for purposes of access to health insurance coverage. Without the new health care reforms, these disabilities can mean the loss of health coverage, resulting in economic hardship and bankruptcy for a family, and huge uncompensated care costs for the system, which will be borne by those who have coverage.

The recently enacted health reform law, Patient Protection and Affordable Care Act (Affordable Care Act), offers people and their families the promise that they will be able to access affordable, nondiscriminatory health care coverage. The Arc believes this helps all Americans and that these protections must remain in place.

“The Patient Protection and Affordable Care Act will finally open the doors to health insurance coverage for many of our constituents. Many of our family members have had vital health coverage denied to them due to their child’s pre‐existing disability. It is disconcerting that litigation to remove this critical protection is already being pursued,” said Peter Berns, CEO of The Arc.

The Arc joined with more than a dozen other advocacy groups in its statement to the courts to protect patients and keep health law intact, including The March of Dimes Foundation, The American Association of People with Disabilities, Breast Cancer Action, Friends of Cancer Research, and the National Women’s Law Center.

Virginia’s Attorney General Kenneth Cuccinelli filed suit against U.S. Department of Health and Human Services Secretary Kathleen Sebelius in the U.S. District Court for the Eastern District of Virginia challenging the constitutionality of the Affordable Care Act. No monetary damages or awards are being sought. Specifically, Virginia challenged the minimum coverage provisions which require that individuals maintain health coverage. Experience in several states has shown that it is necessary to require minimum individual coverage in order to successfully eliminate insurance company use of pre‐existing exclusions for coverage.

Disease and Disability Groups to Hold Media Conference Call on Amicus Brief Supporting Health Reform Law in Virginia Case

Washington, DC – On Thursday, June 17 at 11:00 a.m., leading disease and disabilities advocacy groups are expected to file a formal amicus brief defending the need for the health reform law’s minimum coverage provision being challenged by Attorney General Ken Cuccinelli in Virginia.

The March of Dimes Foundation, The American Association of People with Disabilities, The Arc of the United States, Breast Cancer Action, Families USA, Family Violence Prevention Fund, Friends of Cancer Research, Mental Health America, National Breast Cancer Coalition, National Organization for Rare Disorders, National Patient Advocate Foundation, National Partnership for Women and Families, National Senior Citizens Law Center, National Women’s Law Center, Ovarian Cancer National Alliance, Raising Women’s Voices for the Health Care We Need, and United Cerebral Palsy have all signed on to the brief, which is expected to be filed in the United States District Court for the Eastern District of Virginia on Thursday.

Representatives from these groups will hold a media conference call to discuss the brief and the necessity of standing in opposition of frivolous lawsuits that undermine the new health law’s protections from insurance company abuses on THURSDAY, JUNE 17 at 11:00 am via Teleconference.

Who: Ian Millhiser, Attorney for the Amici
Marty Ford, The Arc of the United States and United Cerebral Palsy
Fran Visco, National Breast Cancer Coalition
Portia Wu, National Partnership for Women & Families
Chris Jennings, National Organization for Rare Disorders

What: Discussing their opposition to frivolous lawsuits that threaten the minimum coverage provision and the new health law’s protections from insurance company abuses.

When: THURSDAY, JUNE 17 at 11:00 a.m. EASTERN

CONFERENCE NUMBER: (877) 210–8943 Conference ID # 82831840