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.