Reject Piecemeal End to the Government Shutdown and Protect People with Disabilities

Washington, DC – The Arc calls on Congress to reject the piecemeal approach to ending the government shutdown and urges lawmakers to put an end to the Federal Government shutdown immediately for all Americans.

“People with intellectual and developmental disabilities rely on numerous federal government programs to live, learn, and work in their communities.   We cannot allow Congress to cherry pick which federal programs continue operations based on arbitrary criteria.  We are all in this together,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc.  “Congress must adopt appropriations legislation now that does not lock in the harmful, low spending levels from the sequester or defund or delay the Affordable Care Act.”

Director of The Arc’s Public Policy Office to be Honored by the Social Security Administration

Washington, DC – Today, The Arc’s Marty Ford, will be honored by the Social Security Administration (SSA) for her years of leadership and commitment to SSA’s disability programs.  Ford serves as the Director of The Arc’s Public Policy office, driving the organization’s public policy agenda.

In her current role, she leads the five person team representing The Arc on Capitol Hill and before federal agencies. With nearly 30 years of experience, Ford is a recognized leader in federal public policy affecting people with disabilities, particularly the Social Security disability system, long term services and supports, and Medicaid, and has testified numerous times before Congress.  She served three years as Chairperson of the Consortium for Citizens with Disabilities (CCD), a coalition of over 110 national organizations, and continues as its Immediate Past Chairperson.  She also serves on the Boards of Directors of the National Academy of Social Insurance and Advance CLASS.

The award will be presented by Michael J. Astrue, Commissioner of Social Security, on Capitol Hill on Thursday, December 6.  During the event, Commissioner Astrue will also announce the expansion of the list of conditions that qualify under SSA’s Compassionate Allowances program.  The Compassionate Allowances program is designed to quickly identify diseases and other medical conditions that, by definition, meet Social Security’s strict standards for disability benefits.  Since its inception, the initiative has helped ensure that Americans with the most severe disabilities receive their benefit decision within days instead of months or years.

“I’m honored to be receiving this award, and I want to thank Commissioner Astrue for his years of service at the Social Security Administration and his efforts to improve the agency’s services to people with disabilities, including people with intellectual and developmental disabilities.  As he wraps up his term, the expansion of the Compassionate Allowances program will be an important part of his legacy,” said Ford.

Reaction from The Arc on House Energy and Commerce Committee Hearing on CLASS Act

Washington, DC – As the nation’s largest organization working on behalf of people with intellectual and developmental disabilities (I/DD), The Arc released the following statement on today’s Congressional hearing on the CLASS Act.

“The reality is the long term services and supports needs of people with disabilities simply can’t be put on hold while Congress engages in partisan attacks. CLASS is make or break for millions of American families – Congress and HHS must find a path forward to keep this promise and take pressure off of Medicaid, or they will leave the American people with terrible choices to make that will affect their health and dignity,” said Marty Ford, Public Policy Director for The Arc.

The Arc is concerned about the tone of portions of today’s hearing and believes the issue of long term services and supports should not become a partisan football. The Arc is heartened by the commitments of some of the Committee members to find a solution to this long term care problem for millions of Americans, including people with I/DD.

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.

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

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 (I/DD) 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 I/DD, and its members are calling on Congress and the White House to keep Medicaid and programs that support those with I/DD intact.

Medicaid provides a critical lifeline for people with I/DD. 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 I/DD. Medicaid is also the primary source of health insurance for people with I/DD 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 I/DD 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.

The Arc Commends Senator Franken’s Commitment to Protecting Medicaid

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 (I/DD), 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 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.

Who Decides Essential Care?

The health care reform law provides categories of care that must be provided for customers of the health-insurance exchanges that are launching in 2014.  An article in today’s Wall Street Journal, “Defining Essential Care,” points out that “The next big issue for the federal health law as it moves toward implementation is how regulators will define so-called essential benefits—the basic medical services that health plans must cover under the law.”  So the details are left up to regulators who are now starting to develop the rules on what is an “essential” health care service and what is not.

Habilitative services, used by such children with Autism and other developmental disabilities, have become a particularly contentious point in the debate. The Arc’s Marty Ford provides an example of the difference between rehabilitative and habilitative services. (Visit our website to read Marty’s prior testimony on the importance of defining habilitation as an essential service.)

Marty Ford Appointed Acting Staff Director of the Disability Policy Collaboration

The Arc and United Cerebral Palsy (UCP) are happy to announce that Marty Ford is now Acting Staff Director of the Disability Policy Collaboration (DPC).  She’ll ensure a seamless transition of leadership in the organizations’ shared public policy office as Paul Marchand prepares to retire in January. During the two-month transition, Paul will retain his public policy portfolio.

“We are very pleased that Marty will assume this critical post. She is one of the nation’s leading advocates on issues that impact our constituency and has ensured that our voices are heard,” said Peter V. Berns, CEO of The Arc.

Marty has an extensive history in federal public policy issues affecting people with disabilities.  She began her career in 1979 working for The Arc of DC joining the national office in 1984. Since 2003, she has represented both The Arc and UCP on Capitol Hill and in the federal agencies on numerous issues, including long-term services and supports (including Medicaid), the Supplemental Security Income program, and Social Security disability issues.

Marty recently served for three years as Chairperson of the Consortium for Citizens with Disabilities (CCD), a coalition of more than 100 national disability organizations. She is currently the Vice-Chair of Advance CLASS, the newly created organization dedicated to the proper implementation of the private, employer-based Community Living Assistance Services and Supports (CLASS) insurance program created by the health care reform law. She is a member of the bars of the District of Columbia Court of Appeals and the U.S. Supreme Court.

Also, Marty was recently honored with the 2010 President’s Award at The Arc’s National Convention in Orlando, FL for the significant impact her work over the past year will have on the success of the intellectual and developmental disability movement and the mission of The Arc.

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