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The Arc Celebrates the 21st Anniversary of the Americans With Disabilities Act

/in /by The Arc

Washington, DC – The Arc of the United States today celebrates the 21st anniversary of the Americans with Disabilities Act (ADA). This landmark civil rights law was created to eliminate discrimination against people based on their disabilities.

“Today serves as a reminder to us of not only how far we have come in the last 21 years, but of how much there is still left to do,” said Peter V. Berns, Chief Executive Officer of The Arc. “The ADA has empowered millions of individuals with disabilities over the last two decades, yet there is still much discrimination facing individuals with intellectual and developmental disabilities. This anniversary should serve as a call to action – our work will not be complete until there is full inclusion and equality for individuals with disabilities.”

The ADA protects the civil rights of individuals with disabilities in employment, state and local government services, privately operated public accommodations (hotels, restaurants, stores, museums, etc.), transportation, and telecommunications. A person with a disability, as defined by the ADA Amendments Act of 2008, is someone who has a physical or mental impairment that substantially limits one or more major bodily functions or major life activities, a person who has a history or record of such impairment, or a person who is regarded as having an impairment.

The ADA’s integration mandate has helped many individuals with intellectual and developmental disabilities (IDD) leave institutions and move to community based settings. However, there are still many individuals living in nursing homes and other types of institutional settings who could and who want to live in more integrated settings.

The Arc advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Families of The Arc Meet With White House on Medicaid Funding as Budget Deal Nears

/in /by The Arc

WASHINGTON, DC – Today, families from West Virginia, Texas, Georgia, and Virginia joined The Arc at a meeting with Phil Schiliro, Assistant to the President and Special Advisor, John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President to discuss the impact on people with intellectual and developmental disabilities (IDD) if deep Medicaid cuts are included in a budget deal. As President Obama continues to engage in deficit reduction talks, The Arc, the nation’s largest and oldest human rights organization for people with IDD, and its members are calling on Congress and the White House to keep Medicaid and programs that support those with IDD intact.

Medicaid provides a critical lifeline for people with IDD. It provides assistance with living in the community, respite services, assistance with daily living such as help getting dressed, taking medication, preparing meals, managing money, and getting in and out of bed. Nationwide, state and federal Medicaid together provide over 75% of the funding for these services for people with IDD. Medicaid is also the primary source of health insurance for people with IDD and provides needed health care services such as prescription drugs, dental, physical therapy, speech therapy, prosthetic devices, wheelchairs and other health care services for eligible people. Private insurance is often unavailable or unaffordable for people with IDD due to discrimination in health insurance, high unemployment, and other factors.

“The Arc had the opportunity to touch the hearts and minds of some of the most powerful people in government today, and our message was clear – don’t cut the lifeline for these families. Medicaid is crucial to the health, well-­being, and future of these families, and without it, they would be forced to quit their jobs or sacrifice much of the progress their children have made with support from Medicaid,” said Peter Berns, CEO of The Arc.

About the Keatons of Milton, West Virginia:

Amanda and Greg Keaton are parents of 18-­month-­old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome is a disorder caused by a defect in chromosome 22, resulting in the poor development of several body systems. Graysen’s main medical conditions include two severe congenital heart defects -­ Tetralogy of Fallot and Pulmonary Atresia. In addition, Graysen has required a tracheostomy and ventilator support since 8 weeks old. Graysen spent his first six and a half months in the hospital, and his one year anniversary at home was June 21, 2011. In his young life, Graysen has suffered two strokes, undergone three open heart surgeries, a feeding tube placement, multiple heart catheterizations, and he hit the $1 million cap on his mother’s health insurance before he turned four months old. Graysen’s nursing care, specialized pediatric tube feedings, along with other important therapies and preventive medications and vaccines are covered by Medicaid through West Virginia’s Children with Disabilities Community Services Program.

About the O’Briens of Waycross, Georgia:

Deirdre O’Brien has two children, including her 13-­year-­old daughter, Clare, who has significant intellectual disabilities. Clare also suffers from abdominal migraines, which are similar to traditional migraines but the pain is in the stomach and causes her to vomit continuously for days. Two years ago, Clare’s migraines became very severe, occurring nearly every two weeks. Her hemoglobin dropped severely, she missed a significant amount of school and her parents missed work to take care of her. During this period, the O’Brien family saw no alternative but for Deirdre to quit her job and stay at home in case her daughter became ill. The state of Georgia recognized Clare’s needs and she was granted a small Medicaid home and community based waiver, which allowed Deirdre to hire staff to help care for her daughter.

About the Rodriguezes of Tomball, Texas:

Natalie and Ruben are parents of 31-­year-­old TJ, who was born with significant intellectual and developmental disabilities. TJ needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking,
and preparing his meals. As he has gotten older, TJ’s mobility challenges have greatly increased along with his medical needs. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. In addition, through TJ’s Medicaid Home and Community Services slot, which took nine years to receive, his parents have been able to make modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.

About the Brandts of Springfield, Virginia:

Carrin and Mitchell Brandt are parents of 10-­year-­old Bailey, who has an intractable (uncontrolled) seizure disorder, cerebral palsy, a history of aspiration and significant global delays. Bailey needs assistance and support with all daily living and recreational activities, and Medicaid helps pay for it. She has a shunt, a G-­tube, and uses a communication device. Bailey has had more than five seizures daily, and Medicaid paid for her brain surgery to remove her left hemisphere for better seizure control. Medicaid has paid for over fifteen seizure medications, one of which was over $1,000 for a one week supply. She has had orthopedic issues, including a hip displacement and a leg length discrepancy. When Bailey grows older, she will need Medicaid for long-­term support needs, such as residential and day support.

The stories these families have shared with the White House dramatically illustrate the findings from the The Arc’s recently released report Family and Individual Needs for Disability Supports (FINDS). The FINDS survey of nearly 5,000 family respondents demonstrates that families across the country have similar experiences. For example:

  • One-­third of parents and caregivers reported that they are on waiting lists for government funded services, with the average wait more than five years.
  • One out of five families report that someone in the family had to quit a job to stay at home and support the needs of a family member.
  • Most family caregivers (58%) provide more than 40 hours of care per week (including 40% who provide more than 80 hours of care per week). This interferes with their work (71%) and causes physical (88%) and financial strain (81%).
  • Sixty two percent of caregivers reported a decrease in services for their family member with a disability.

“These statistics came to life at the White House today, as these families exemplify what it means to be on a waiting list for services for nine years, and what life looks like when parents face a choice between working and caring for their loved one,” said Marty Ford, The Arc’s public policy director.

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The Arc Commends Senator Franken’s Commitment to Protecting Medicaid

/in /by The Arc

WASHINGTON, DC – The Arc is commending Senator Al Franken of Minnesota for pledging to protect the federal Medicaid program. Senator Franken met recently with leaders and members from The Arc Minnesota and with families who benefit from programs provided by Hammer, a disability service provider in Wayzata, Minnesota. Invoking the late Senator Hubert Humphrey, Franken said, “Who we are as a society both in Minnesota and across this country is defined by how we treat the most vulnerable. The kind of state Minnesotans want to live in is one that supports our citizens with disabilities. I will fight cuts to Medicaid that don’t protect these essential services.”

Medicaid is the primary source of health care coverage for people with intellectual and developmental disabilities (IDD), providing them medical care, dental care, physical therapy, and assistive devices like wheelchairs, among others. Medicaid currently covers 60 million low-income Americans including nearly 30 million low-income children, 15 million adults and 8 million non-elderly people with disabilities. The program is being threatened by cuts proposed by some in Congress.

“Medicaid is the lifeline to the community for people with intellectual and developmental disabilities,” said Marty Ford, Public Policy Director for The Arc. “We cannot tolerate the kinds of cuts to Medicaid being proposed by the U.S. House of Representatives. We are very worried these cuts would return people with disabilities to institutions, which unacceptably segregate people and are generally more expensive. We have fought hard for many decades to get people with disabilities out of these institutions; we don’t want to go back.”

The House of Representatives passed a budget plan, known as the Ryan Plan after its author, Congressman Paul Ryan of Wisconsin, in April that cuts programs for people with intellectual and developmental disabilities. 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.

Pat Mellenthin, Chief Executive Officer of The Arc Minnesota expressed gratitude for Senator Franken’s support. “We thank Senator Franken for his willingness to be a champion for people with disabilities by protecting Medicaid. The proposed cuts to Medicaid at the federal level are a double blow to people with disabilities, as they are already being targeted for drastic cuts in their services at the state level.”

Tim Nelson, CEO of Hammer and President of The Arc Minnesota, also praised the Senator’s commitment. “The services that we provide help people with disabilities be included in our communities and help them become contributing citizens. Cuts being proposed to Medicaid would pull people out of our communities and make them more isolated.” Hammer’s services are funded by a combination of state Medical Assistance and federal Medicaid dollars.

The Arc advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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New Data Reveals Our Nation Is Neglecting People With Intellectual and Developmental Disabilities

/in /by The Arc

Survey findings from human rights organization, The Arc, reveal nation’s efforts fail to provide fundamentals for individuals and families

WASHINGTON, D.C. (June 14, 2011) – Fifty years ago, President Kennedy called on the nation to bring people living with intellectual and developmental disabilities (IDD) “out of the shadows,” to give them opportunities to lead productive, quality lives. Sadly, new data released today from The Arc’s Families and Individual Needs for Disability Support (FINDS) survey shows efforts have plateaued and not nearly enough progress has been made to create these opportunities. While budget cuts and economic strain have hurt all Americans, the 7 million living with IDD and their families are among the hardest hit, with access to needed services drastically reduced. In fact, 62 percent of caregivers reported a decrease in services for their family member with a disability. Meanwhile, budget proposals in Congress threaten to dismantle Medicaid, making it even harder for people with IDD and their families to achieve.

The Arc, the nation’s largest and oldest human rights organization for the IDD community serving more than a million individuals and their families, conducted a national survey of nearly 5,000 respondents on educational, housing, employment and support needs. The results of this landmark survey are being released in a report today, “Still in the Shadows with Their Future Uncertain.”

According to the FINDS survey, one-third of parents and caregivers (potentially 1 million families) reported that they are on waiting lists for government funded services, with the average wait more than five years. The survey also found that the promise of integrated, community-based employment is not being met. In fact, 85 percent of families reported that their adult family members with IDD are not employed at all. Opportunities for inclusive education, a pre-requisite for employment, are also not being met. Too few students are completing high school – in fact, 52 percent of families reported that their family member with IDD left school without receiving a high school diploma.

“People with IDD have a fundamental moral and civil right to be fully included in all aspects of society. Every day, The Arc promotes and protects the human rights of people with IDD and actively supports their full inclusion and participation in the community throughout their lifetime,” says Peter V. Berns, chief executive officer of The Arc and newly appointed member of President Barack Obama’s Committee for People with Intellectual Disabilities (May 2011). “Although we have made some progress as a nation over the last 50 years, our nation has an obligation to do much more.”

“Yet we are on the brink of taking giant steps backward, and the future is uncertain for these individuals and their families. The vast majority of individuals with IDD live with their parents. So, when their parents can no longer emotionally or financially support them, who will? Without any concrete measures to protect these individuals and proposals to end Medicaid as we know it on the table in Washington, we have a train wreck waiting to happen.”

FINDS found more than 75 percent of families report problems accessing non-institutional community care, trained reliable homecare providers, services and resources. Families are shouldering tremendous financial strain as they’ve had to assume the financial and day-to-day support of their loved ones; many have even had to quit their jobs to stay home and provide care.

FINDS also revealed:

  • 1 out of 5 families (20 percent) report that someone in the family had to quit a job to stay at home and support the needs of a family member.
  • More than 80 percent of families reported not having enough retirement savings for their future as a result of using personal funds to compensate for the lack of services available to their loved ones.
  • 62 percent of parents and caregivers don’t have a plan for where the person they support will live when the parent/caregiver gets older.

As a result of the report, The Arc is calling for more activism by people with IDD and their families, launching a new effort to organize 1 million people to come out of the shadows and make their needs and concerns an issue in the 2012 elections.

To raise awareness surrounding the barriers those with IDD face and how the organization can help individuals and families fully participate in society, The Arc has partnered with Lauren Potter, star of the hit FOX show “Glee.” As a successful actress with Down syndrome who is achieving her dreams, Lauren represents the spirit of The Arc’s work. Today, The Arc and Potter will kick off a public service announcement television campaign.

“I became involved with The Arc when I got the Image and Inclusion award last year. I am happy to be able to help portray a positive image of people with intellectual and developmental disabilities. I’m glad the Arc works to protect human rights of children and adults with intellectual and developmental disabilities,” says Potter.

The Arc “Achieve with Us” Contest
To encourage people with IDD to share their stories of achievement, The Arc is conducting a national contest via their Facebook fan page. Starting today until July 14, entrants can share a story and a photo highlighting the accomplishments of an individual with IDD for the chance to receive a trip for two to Washington, DC. For more information about the “Achieve with Us” contest, please visit www.facebook.com/thearcus.

For more information, or to see additional survey results, please visit thearc.org.

About the FINDS Survey

The web-based FINDS survey was conducted from July 22, 2010, through October 31, 2010. The survey was completed by 4,962 caregivers of people with disabilities. Families from all 50 states and Washington, DC completed the survey. 

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The Arc Begins Affiliation With the U.S. Business Leadership Network to Improve Employment for People With Disabilities

/in /by The Arc

WASHINGTON – Today, The Arc, the largest organization advocating for and serving people with intellectual and developmental disabilities (IDD), is announcing it has become an affiliate of The US Business Leadership Network® (USBLN®). The USBLN seeks to help build workplaces where people with IDD are valued for their talents and contributions.

“It’s partnerships like this one that will help advance employment for people with IDD. The Arc aims to be a resource to businesses large and small that see the value in employing people with all kinds of skill sets so that they can contribute to society in a meaningful way and live a fulfilling life,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people with IDD, including Down syndrome, autism, FASD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc’s network will help the USBLN, which is the national disability organization that serves as the collective voice of over 60 Business Leadership Network affiliates across North America and represents over 5,000 employers, advance employment opportunities for people with IDD. In this tough economy, with the national unemployment rate at 9%, people with IDD face huge obstacles to gaining employment in the private sector.  While there are federal programs to help those with IDD find employment within the federal government, in recent years the percentage of federal employees with disabilities has decreased.

The USBLN promotes the business imperative of the preparation and inclusion of people with disabilities in the workplace, marketplace, and supply chain while supporting the development and expansion of its BLN affiliates. The USBLN recognizes and supports best practices in hiring and advancing employees with disabilities, marketing to consumers with disabilities, and encourages contracting with vendors with disabilities through the development and certification of disability-owned business enterprises. To learn more, visit www.usbln.org.

“This is a tremendous opportunity for The Arc to take a step forward in our goal of increasing employment for people with IDD.  We look forward to what this affiliation will bring across the country to the people we serve,” said Berns.

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

/in /by The Arc

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

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President Obama Appoints The Arc’s CEO Peter Berns to the President’s Committee for People With Intellectual Disabilities

/in /by The Arc

WASHINGTON – This week, President Barack Obama announced his appointments to the President’s Committee for People with Intellectual Disabilities, which included The Arc’s CEO Peter Berns. This expert group will provide advice and assistance to President Obama and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual and developmental disabilities (IDD) and their families.

“I’m honored to be a part of this panel advising the Obama Administration on matters critical to the inclusion of people with IDD in their communities. We are facing enormous challenges right now, with federal and state budget crises threatening the services that support people with IDD to thrive in society,” said Berns.

The President’s Committee for People with Intellectual Disabilities is rich with history, dating back to October 1961, when President John F. Kennedy appointed the first panel of this kind to provide the nation with direction for progress in the field of IDD. This was a turning point for the IDD community, as President Kennedy shined a spotlight on the deplorable living conditions in institutions and limited opportunities for people with IDD across the country. The panel produced a report with more than 100 recommendations for research into the causes and prevention of IDD and for expanding opportunities for education, employment and community living and participation. President Kennedy  pushed and signed into law major pieces of legislation that established the foundation for current civil rights protections and programs and services for people with IDD.

By the 1960s, The Arc had emerged as a strong voice advocating for community living and with it the appropriate supports and services people with disabilities need. Today, The Arc is the largest organization advocating for and serving people with IDD, including Down syndrome, autism, FASD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.  According to the U.S. Department of Health and Human Services, nearly 30 million, or one in ten families in the United States, are directly affected by a person with intellectual disability at some point in their lifetime.

“The members of this panel will represent millions of Americans and their families at a critical juncture in our efforts to improve the lives of people with  IDD. I’m looking forward to joining this group and bringing with me the powerful, personal stories of the hundreds of thousands of families that are part of The Arc,” said Berns.

A nationally recognized nonprofit sector leader and public interest lawyer, Berns served as the Executive Director of the Maryland Association of Nonprofit Organizations from 1992 to 2008 prior to leading The Arc. In addition, he served as Chief Executive Officer of the Standards for Excellence Institute from 2004 to 2008 where he developed Standards for Excellence: An Ethics and Accountability Code for the Nonprofit Sector. A frequent lecturer, facilitator, consultant, and trainer, he has served as an adjunct faculty member at Johns Hopkins University.  He was named to the Nonprofit Times Power and Influence Top 50 list five times in the past decade. Berns has a B.A. from the University of Pennsylvania, a J.D. from Harvard Law School and an LL.M. from Georgetown University Law Center.

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President Obama Provides Clear Alternative on the Budget

/in /by The Arc

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.”

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The Arc to Congress: House Budget Plan for 2012 Will Wreak Havoc in Lives of People With Intellectual and Developmental Disabilities and Their Families

/in /by The Arc

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

Long Term Services and Supports. People with IDD 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 IDD 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 IDD, 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 IDD 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.

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The Arc and UCP Urge Congress to Implement the CLASS Act

/in /by The Arc

Washington, D.C. – The Arc and United Cerebral Palsy (UCP) restate their support for the Community Living Assistance Services and Supports (CLASS) program. Both The Arc and UCP worked hard to support passage of the CLASS Act and support full implementation of the program.

The CLASS program is a new long term care insurance program. It is financed by voluntary payroll deductions and will provide a cash benefit for individuals with functional limitations. CLASS plan benefits can be used for personal care attendants, assistive technology, home accessibility modifications, and other supports and services that help people with disabilities to function in their daily lives.

UCP and The Arc support the CLASS program, in part, due to our concern that individuals and families should not be forced to impoverish themselves to cover the costs of services they or their family members need in the event of disability or advancing age. Long-term services and supports can put enormous strain on both families as well as the federal-state Medicaid program. Both organizations believe it is imperative that the hard-fought CLASS program be fully implemented.

Nearly half of all funding for long term services is now provided through Medicaid, which is a growing burden on states and requires individuals to become and remain poor to receive the help they need. There is also an institutional bias in Medicaid whereby approximately two-thirds of all spending is directed towards nursing homes and other institutions instead of preferred community-based services and supports.

The CLASS program is a national solution to a national problem. The plan should give consumers access to a broad array of support options, including a continuum of home and community-based supportive services. This new system will ultimately relieve pressure on Medicaid. The new system should promote independence and dignity across the lifespan by ensuring beneficiaries the right to control and choose what services they receive, how and where they are delivered, and who provides them.

We are pleased by the renewed attention to the CLASS program brought about by today’s hearing in the House Energy and Commerce Committee’s Health Subcommittee. We urge members of Congress to ensure that the CLASS program is fully implemented as soon as possible so that the working public may begin to participate in the program and insure themselves against future need.