A Lifeline for Vernon

Don't Cut Our Lifeline Logo

We constantly talk about how Medicaid is a lifeline for individuals with intellectual and developmental disabilities (I/DD), but sometimes we need a reminder of what that actually means.

Medicaid provides individuals with significant disabilities who generally don’t have access to employer-based or other private coverage access to health insurance and programs that help them live independently in the community.  For many families a Medicaid waiver is the difference between their loved one living in an institution or remaining at home, surrounded by friends and family.

Please take a moment to read about Colena Jones and her son Vernon.

To learn more about how Medicaid is a lifeline for Vernon and so many others, visit our Don’t Cut Our Lifeline page on our website.

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

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.

Don't Cut Our Lifeline LogoQ. T.J., you work on the front lines in Washington, D.C. 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.

The Arc Welcomes Iowa’s Tyler Smothers, “Achieve with us” Contest Winner, to Washington, DC to Advocate on Capitol Hill

Tyler SmothersWashington, DC – This week, The Arc of the United States will welcome Tyler Smothers, from Cedar Rapids, Iowa to Washington, DC to meet with members of the Iowa Congressional delegation.

In August, The Arc announced that Tyler was the winner of the first ever “Achieve with us” social media contest. The contest invited individuals with intellectual and developmental disabilities (I/DD) to share their stories of achievement. Out of 119 contestants garnering more than 25,000 votes, Tyler was selected for his impressive achievements in his community, which had been devastated by floods in 2008.

Tyler was very involved with his local chapter, The Arc of East Central Iowa, where he participated in day programs, social events, and interacted in his community.  As downtown Cedar Rapids succumbed to flood waters, and the chapter’s office sustained major damage, Tyler saw the need to help his community get back on its feet.  So he became the driving force behind The Arc of East Central Iowa’s annual bike riding fundraiser “Tour de Flood.” Putting aside his wheelchair and using an adaptive bike, Tyler leads the ride, and every year since, has raised an impressive amount of funds for his chapter.  In fact, in the first year of the ride, Tyler set a goal of raising $2,000 – he far exceeded that amount, bringing in $18,000.  The 4th annual “Tour de Flood” took place on September 18.

As the winner of the contest, Tyler and his mother received a two day trip to Washington, DC. Tyler will be in Washington, DC from November 1-3, meeting with The Arc’s National staff in addition to members of his Congressional delegation. He is scheduled to meet with Senator Tom Harkin, Senator Chuck Grassley, and Congressman Dave Loebsack (IA-2) to share his story of achievement. When asked what he will discuss when he comes to Washington, Tyler said, “I am going to tell them living with a disability is challenging.”

Tyler’s meetings on Capitol Hill come at a critical juncture in budget negotiations, where programs that people with I/DD rely on could be on the table for cuts.  The Arc is in the midst of an advocacy campaign, called “Don’t Cut Our Lifeline,” to protect Medicaid.

“Tyler exemplifies what The Arc stands for and we are honored to host him and his family during their trip to Washington, DC. Tyler is an inspiration to his friends and neighbors in Iowa, and this week, he will take his message to leaders in Washington to demonstrate why in particular the Medicaid lifeline is so important,” said Peter V. Berns, CEO of The Arc.

Why FINDS Matters – An Addition to Your Advocacy Toolkit

FINDS report coverThe 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, then find out more about what you can do to help here.

Possible Medicaid Cuts and What You Can Do

Don't Cut Our Lifeline LogoRight 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!