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

/in /by The Arc

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.

Q. T.J., you work on the front lines in Washington, DC 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.

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

/in /by The Arc

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.”

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The Arc of the U.S. Launches New Medicaid Reference Desk

/in /by The Arc

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.

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New Medicaid Resource Available From The Arc

/in /by The Arc

The Arc is excited to announce a valuable new resource available 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.

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Why FINDS Matters: An Addition to Your Advocacy Toolkit

/in /by Julie Ward

The 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.

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The Arc’s Statement on Budget Deal and Impact on People With Intellectual and Developmental Disabilities

/in /by The Arc

WASHINGTON, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and/or developmental disabilities, released the following statement from its CEO Peter V. Berns on the passage of the budget and debt ceiling deal in Washington.

“While we are glad that the immediate crisis has passed and Medicaid survived the first round of budget cuts in Washington, this fight is far from over. Now more than ever, people with intellectual and developmental disabilities, their families, friends and colleagues need to stand up and make their voices heard.

We must continue to press Congress to protect people with disabilities. The Medicaid lifeline, along with other programs that help ensure inclusion of people with intellectual and developmental disabilities in society, are still at stake,” said Berns.

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Possible Medicaid Cuts and What You Can Do

/in /by Ralph Scott

Right now, Congress and the President are debating how to cut federal spending to bring down the deficit. Unfortunately – and almost unbelievably – people with intellectual and developmental disabilities are prime among those who may bear the brunt of many of the proposed funding cuts and policy changes.

There are many proposals being discussed in Washington to balance the budget. What they have in common is that Medicaid spending would need to be dramatically cut in a short period of time. They include:

  • Block Granting Medicaid: This policy, which was passed in the House’s 2012 Budget Resolution, would give states a fixed amount of money for health care and long term services and would likely remove requirements for how the states spend the money. Funding and services could evaporate, as financially strapped states took aim at programs without powerful constituencies and tightened eligibility for other programs.
  • Spending Caps: These would set an overall limit on federal spending that is well below current levels and would likely result in a Medicaid block grant (see above). Both houses of Congress may vote this week on a measure that could ultimately force such drastic cuts to occur.

Cuts to Medicaid are on the table in all of these proposals, directly or indirectly, and that alone requires us to act! Time is short.

What would these cuts mean for people with disabilities? There would be no guarantee of services. People with disabilities could be denied:

  • Health insurance coverage
  • Home and community based services

What can we do?

We expect Congress to vote on legislation to cut the deficit before the end of July, and we don’t know yet what that will mean for Medicaid. Now is the time to tell your Senators and Representative what Medicaid means to you and your loved ones and friends with I/DD, and tell them “Don’t Cut Our Lifeline!”

Please call your Senators and Representatives as soon as possible. Enter your zip code to get their phone numbers.

What should I say?

  • The budget cannot be balanced on the backs of people with intellectual and developmental disabilities.
  • Deep cuts in Medicaid cannot be tolerated – including block grants and spending caps that impact Medicaid.
  • Medicaid and programs that serve low-income people must be exempt from deficit reduction plans.
  • Share your story! There is nothing more powerful than sharing your personal experience, so please tell your elected official about your support service needs.
  • Don’t Cut Our Lifeline!
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Don’t Cut Clare’s Lifeline

/in /by The Arc

On Wednesday, July 6th, the O’Brien family from Waycross, Georgia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.

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.

“Without Medicaid, our family’s life would revolve around illness, not health and happiness. Clare gets the care she needs from her family and from the staff paid for by Medicaid funds, and I can continue to work. Medicaid is a lifeline for us, and the White House needs to hear our story and the stories of the thousands of families like ours in Georgia,” said Deirdre O’Brien.

Take Action

Find out more on the potential cuts to Medicaid and The Arc’s Don’t Cut Our Lifeline campain. Take action and tell your elected officials “Don’t Cut Our Lifeline!”

About the Video

This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.

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Don’t Cut Graysen’s Lifeline

/in /by The Arc

On Wednesday, July 6th, the Keaton family from Milton, West Virginia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.

Amanda and Greg Keaton are parents of 18-month-old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome (22q11.2 deletion 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.

“Drastic cuts in Medicaid would force me to quit my job to take care of Graysen, as I couldn’t afford the nursing care without it. Medicaid is our lifeline, and I’m going to urge the White House to keep the nation’s commitment to provide for the most vulnerable, like my son, so that he can continue to live with us and we can keep our jobs and our home,” said Amanda Keaton.

Take Action

Find out more on the potential cuts to Medicaid and The Arc’s Don’t Cut Our Lifeline campain. Take action and tell your elected officials “Don’t Cut Our Lifeline!”

About the Video

This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.

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Don’t Cut Bailey’s Lifeline

/in /by The Arc

On Wednesday, July 6th, the Brandt family from Springfield, Virginia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting is for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.

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.

“If we lost Medicaid, it would jeopardize my husband’s small business, and one of us would have to give up our jobs. Bailey’s life and health could dramatically change, as she wouldn’t be able to participate in our community and continue to grow to be as independent as possible. We don’t want to ever see our daughter living in an institution, but without Medicaid, we don’t know what our future holds,” said Carrin Brandt.

Take Action

Find out more on the potential cuts to Medicaid and The Arc’s Don’t Cut Our Lifeline campain. Take action and tell your elected officials “Don’t Cut Our Lifeline!”

About the Video

This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.