Serious Star Power Coming to The Arc’s National Convention

Dr. Temple Grandin

You might need sunglasses to attend The Arc’s National Convention in Denver this September. We’re bringing serious star power to the stage with major wattage coming from Hollywood and the intellectual and developmental disability (I/DD) sector.
First up is Dr. David Braddock, a major star in the I/DD community as head of the Coleman Institute for Cognitive Disabilities and the driving force behind the “State of the States in Developmental Disabilities” which offers insight into crucial public policy issues. Dr. Braddock has just updated this vital report for 2011 and will share his thoughts on where we stand on disability policy today.

Plus, Lauren Potter from the hit TV show GLEE will be on hand to present this year’s Image and Inclusion Award for accurate and positive portrayals of I/DD in the media. Lauren, who has Down syndrome, is not only a talented actress but has recently become a very visible spokesperson for the I/DD movement. She filmed a compelling PSA for Spread the Word to End the Word campaign against the “r” word with her co-star Jane Lynch and has spoken out against bullying. She was recently in Washington, D.C. with The Arc to help us publicly release the results of the landmark FINDS (Family and Individual Needs for Disability Support) survey and taped a special message to close our newest PSA currently airing across the country.

Finally, Convention attendees will be treated to a keynote presentation from best-selling author and noted animal scientist Dr. Temple Grandin, who has autism. Dr. Grandin’s life and work was the subject of a popular 2010 HBO biopic starring Clarie Danes. The film was highly-praised and recognized with Emmys, Golden Globes and a Peabody Award.
As you can see, it’s an all-star lineup so grab your autograph book and make your reservations now for The Arc’s National Convention September 16-19 in Denver, CO.

Achieve with Us and See Yourself in ABILITY Magazine

The Arc recently kicked off our Achieve with us contest inviting people with intellectual and developmental disabilities to share their inspirational stories of achievement for a chance to win a trip to Washington, D.C. Now, we’ve sweetened the pot by partnering with ABILITY Magazine, the leading source for information on health, disability and human potential. This award-winning publication has provided new insights into individual levels of ability for nearly 20 years and they want to feature the winning entry in The Arc’s Achieve with us contest in an upcoming issue.

So if you or someone you know has a winning story to share, visit www.facebook.com/thearcus and enter today for your chance to win a 2-day, expenses paid trip to the nation’s capital and be featured in the pages of ABILITY Magazine. Plus, they’re kicking in a free one-year subscription to the magazine for the winner along with 25 complimentary copies of an issue to share with friends and family. Enter NOW until July 14 then encourage everyone you know to vote for your story between July 15 and August 15 to win! Who knows, your smiling face could end up in the pages of ABILITY Magazine!

Groundbreaking FINDS Report Picked up by National Media

Peter Berns and Lauren Potter

The Arc CEO Peter Berns and Glee actress Lauren Potter

The Arc recently released the results of its groundbreaking Families and Individual Needs for Disability Support (FINDS) survey and media across the country have been covering the startling statistics.  A major goal for this project has been to raise awareness of The Arc and the urgent unmet needs of people with intellectual and developmental disabilities (I/DD), and the media has responded by reporting  findings from the survey to the general public and highlighting the work of local chapters.

We know that while we have come a long way in promoting and protecting the human rights of people with I/DD, there is still much more work to be done.  Throughout our efforts to bring about greater awareness, two findings from the survey have struck a nerve – 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.  And in this recession, 62 percent of caregivers reported a decrease in services for their family member with a disability, leaving them financially vulnerable.

On the morning of June 14, we released Still in the Shadows with Their Future Uncertain, our report on the FINDS data. The Arc’s CEO Peter V. Berns and Lauren Potter, star of the hit FOX show “Glee,” participated in more than twenty television and radio interviews in top media markets across the nation, including Boston and Greensboro, NC.  Peter and Lauren shared the findings of the report and talked about what needs to be done to improve the lives of people with I/DD.  Following these interviews, The Arc hosted a press conference at the National Press Club to officially unveil the report, and the national newswire Reuters quickly ran a story.  Throughout the day, media continued to pick up on the report, interviewing local Arc executive directors and self-advocates, like Jamie Liban and Katherine Olson from The Arc of Virginia who did an in-studio interview at WTVR in Richmond.

The FINDS survey continues to have momentum, as Health & Home Report, one of the longest running syndicated video magazines on television, will begin airing on July 1st one of the television interviews with Peter and Lauren.  Health & Home Report is hosted by an award winning reporter and anchor, Laura DeAngelis, and has gained a loyal following because of its useful consumer tips and interesting stories.  The show is distributed to 20 broadcast stations and 91 cable systems across the country, reaching an audience between 3 to 4 million.

We encourage you to read the FINDS survey report and spread the word about The Arc’s call-to-action to motivate 1 million Americans to join the movement for people with I/DD. Use this information to make the case to everyone you know that more needs to be done to help people with I/DD be fully included and participate in the community throughout their lifetimes. Build on the publicity generated by media coverage of the report and share this blog with your networks. Thank you!

Different Deficit Reduction Efforts, Same Result for Medicaid?

All Roads in Congress May Lead to Block Granting Medicaid

Congress is considering a number of different mechanisms that may result in cuts so large that the only option would be to block grant Medicaid. Under a block grant, Congress would give states a reduced, fixed amount of money and eliminate many of the requirements (such as who to cover and what services to provide). Block granting is the worst option for people with intellectual and developmental disabilities (I/DD) as it would fundamentally change the structure of the program, not just cut funding for it. The individual entitlement to health care and long term services and supports would be lost and the states’ entitlement to reimbursement for actual costs would be lost. This is why it is so important to hold Members of Congress accountable for their positions on each of the mechanisms described below.

What are Spending Caps?

One approach to deficit reduction that is being seriously considered is to impose spending caps or limits. These caps limit government spending, usually limiting it to a certain percentage of Gross Domestic Product (GDP). There is one proposal that would limit federal spending to 20.6% of GDP (spending is currently 24% of GDP). This figure is the average amount of federal spending compared to all goods and services produced by the country (or GDP) in the last 40 years (before spending on aging baby boomers, national security, and interest on the debt was significant). Congress is currently considering three types of caps:

  • A global spending cap (for all federal spending);
  • An entitlement spending cap (for Medicare, Medicaid, and Social Security spending); and
  • A global health spending cap (for Medicaid, Medicare, and Affordable Care Act spending).

What happens if federal spending exceeds the spending caps?

There would be an enforcement mechanism of automatic, across‐the‐board spending cuts (called “sequestration”) if the spending limits or targets were expected to be missed. Low income programs, such as Medicaid and Social Security, would not be exempted. To bring federal spending back in line with the proposed spending caps or targets, Congress would be forced to make drastic cuts in entitlement programs. Those cuts would most likely have to include block grants for the Medicaid program.

What Legislation is Congress considering that might include spending caps?

There a currently two main efforts in Congress that are expected to involve spending caps. The first, a measure to increase the debt ceiling, is by far the most serious threat, as the U.S. is close to reaching a point of default on its financial obligations. The second, a balanced budget amendment, may or may not advance.

  1. Raising the Debt Ceiling. The U.S. debt reached the limit of $14.3 trillion allowed by law in mid‐May. However, the Treasury Secretary is able to manage accounts without defaulting until about August 2. If federal borrowing authority is not increased by August 2, the U.S. will begin defaulting on its debt, triggering a catastrophic global financial crisis. Some Members of Congress have stated that they will vote to raise the debt ceiling ONLY IF major cuts in federal spending are included. While no specific programs and amounts have yet been made public, Medicaid is widely expected to be a major target.
  2. Balanced Budget Amendment. Unlike the constitutions of most states, the U.S. Constitution does not actually require the Congress to pass a balanced budget. Some Members of Congress are looking to add a balanced budget amendment to ensure that the federal government does not spend more than it takes in, including no borrowing authority. If this were to happen, most federal spending would be radically reduced, including Medicaid.

Questions and Answers on Potential Medicaid Cuts

Q. What is happening in Washington?

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

  • Block Granting Medicaid, which would give states a fixed amount of money for health care and long term services and would likely remove requirements (such as eligibility and service minimums and quality measures) for how the states spend the money.
  • Spending Caps, with automatic enforcement, would set a limit on federal spending that is well below current spending and would likely result in a Medicaid block grant. Automatic enforcement mechanisms mean that, if a spending target is not met, cuts are made automatically without the need for further Congressional action.

In addition, Vice President Biden is leading a small group of six Members of Congress who are trying to find a way to cut the deficit. This group is working behind the scenes, and very little information about their negotiations is being made public. They are expected to reach an agreement allowing Congress to raise the debt ceiling by August 2.

What we do know is that cuts to Medicaid are on the table in all of these proposals, and that harsh fact alone requires us to act! Time is short.

Q. What happens if any of these proposals become law?

A. The cuts under any of the proposals for spending caps and automatic enforcement would be so drastic that a block grant would be the result for the Medicaid program (even if Congress does not immediately consider a straightforward proposal to block grant the program itself).

Q. What is the problem with block granting Medicaid?

A. One major problem is that the costs do not go away, but would be shifted to already cash-strapped states. If states do not make up for the federal cuts (the federal government pays 50 percent or more of the costs of every state’s Medicaid program), the costs would shift again, to individuals and their families, to health care providers, to other federal programs or to local governments.

  • There would be no more guarantees of health care services and waiting lists would grow even longer.
  • The block grant would likely have few rules and states would be free to change eligibility, cut services, and manage their programs with very little federal oversight.
  • We believe that block grants would force bad choices and cause real conflict as groups with diverse needs compete for scarce dollars.

Q. What “bad choices” might states make?

A. Since the services to people with disabilities and the elderly are significantly more costly than health care coverage for children, states could decide to serve fewer seniors and people with disabilities and focus scarce health care dollars on children. Here are some possible choices states might be forced to make:

  • Loss of home and community-based services (HCBS) and supports. Nearly 600,000 people with intellectual and/or developmental disabilities (I/DD) receive long term services paid for by Medicaid, and most receive them at home. States could decide to stop providing these services or limit the number of people who could get them, increasing waiting lists.
  • Move people back to institutions. With fewer requirements, people with I/DD may be forced back into institutions rather than community living. Under a block grant, rules for providing quality care could be more flexible and conditions in institutions could return to the way they were in the past.
  • Tightening of eligibility for services. To be eligible for Medicaid, people have to fall under certain income levels. States could restrict health care services to only the very, very poor.
  • More out of pocket costs for individuals and families. In order to get health care, people might have to pay more out of their own pockets. Since people using Medicaid have limited income resources to start with, requiring them to pay for their medical care or long term services and supports could be a significant barrier to care.
  • Reduction or elimination of critical services. If funds become scarcer, states may decide to reduce or stop providing basic services, such as personal care, prescription drugs, rehabilitative services, or home and community based waiver programs.
  • Less availability of doctors and providers for care. It is already very difficult for people using Medicaid to find doctors and other health care providers willing to accept the low payment rates, particularly specialists. If states cut the amount they pay doctors and other providers, those professionals may quit serving people under Medicaid, making access to care even more difficult to secure.

Tell Your Members of Congress – Don’t Cut Our Lifeline!

If we don’t speak up now, Medicaid and other programs critical to people with intellectual and/or developmental disabilities (I/DD) may take the brunt of the cuts. Members of Congress are very reluctant to cut Medicare, as the elderly community is a very reliable voting constituency and they are very vocal advocates. Historically, Social Security is considered the “third rail” in politics, and as such, not to be touched. That leaves Medicaid on the table as a prime target for cuts.

How can we make Congress understand why Medicaid is so important?
We have to personalize the importance of protecting Medicaid for people with I/DD. Advocates need to do the following:

1) Call your Senators or Member of the House of Representatives
Call the Capitol Switchboard to reach your Members of Congress: 202-224-3121. Also, be sure to sign up for our Action Alerts, and act quickly when we send them!

2) Make an Appointment with your Elected Officials
Call your elected officials for an appointment to discuss what Medicaid means to you. Find out when your Member of the House of Representatives will be home from Washington, and call his or her district office to make an appointment. Stress with the scheduler that you know that budget cuts could come up for a vote this summer, and you want your voice to be heard!

3) Attend a Town Hall Meeting
When Members of Congress are back in their districts, they often hold town hall meetings. Call their district offices to find out when the next meeting is so that you can attend and share your story directly with your Representative.

4) Invite your Senators and Representative to your local chapter of The Arc.
Invite them to join you at places or events where they will be able to meet with people with disabilities who depend heavily on Medicaid. For example, invite them to a supported housing setting or apartment supported by your chapter(s). Seeing firsthand the people who depend on Medicaid-funded long-term services and supports can have a powerful effect on Members of Congress and can help to dispel many of the unfortunate misperceptions about the program (for example, that it serves people who don’t really need it). If possible, invite them to a chapter event that’s happening during the recess where they may meet and talk with people who depend on Medicaid for services.

5) Write a Letter to the Editor
Local newspapers will print letters from local residents on timely topics. Sharing your personal story about how Medicaid is your lifeline to health care and long term services and supports will help people understand why we must maintain the program.

6) Use Social Media to Spread the Word
Facebook and Twitter are often the first source of news for your friends and family. Use your online network to ask them to get involved in this fight!

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.

New Survey Shows Urgent Unmet Needs for Disability Support

FINDS report coverThe Arc recently had the opportunity to measure the urgent, unmet needs of individuals and families living with I/DD and find out where our society is succeeding in offering them support and where we’re falling short. In conjunction with researchers at the University of Minnesota, we conducted an unprecedented survey of more than 5000 individuals with I/DD, their family members and caregivers covering a host of issues from education to housing to planning for the future and discovered that many with I/DD are unnecessarily living in the shadows of society for lack of support to meet their most basic needs.

This week, we released the top findings from that survey in a publication called Still in the Shadows with Their Future Uncertain and outlined the steps we need to take as individuals, as families, as advocates and as a country to address the most pressing needs. Here are just a few of the most dramatic findings from the survey that should inspire us to action.

  • 62% of caregivers report that the level of services for their family member with a mild or moderate disability is decreasing; 70% of families with severe disabilities report a decrease in services.
  • 72% of family respondents provide direct financial support to their family member with disabilities and 52% of families are paying for care out of their own income.
  • More than 80% 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 one.

We invite you to read the full report available now and join us in our movement through the call to action outlined in the report. Or, find out more about how you can get involved with The Arc to help bring about positive change, offer opportunity and foster hope for people with I/DD everywhere.

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

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 (I/DD) “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 I/DD 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 I/DD and their families to achieve.

The Arc, the nation’s largest and oldest human rights organization for the I/DD 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 I/DD 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 I/DD left school without receiving a high school diploma.

“People with I/DD 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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 I/DD for the chance to receive a trip for two to Washington, D.C.  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. 

Achieve with us and Win a Trip to Washington, D.C.

Win a Free Trip to Washington, D.C. by Sharing Your Inspirational StoryThe Arc works on a daily basis to empower people with intellectual and developmental disabilities to achieve full and satisfying lives. But its individuals like you who actually do all of the achieving! So, to put the spotlight on you and celebrate your achievements, we launched a contest to identify the amazing achievements of people with I/DD across the county. Enter The Arc’s Achieve with us contest between now and July 14 for a chance to win a trip to Washington D.C. to visit your representatives in Congress and The Arc’s national office on a 2-day, expenses paid trip simply for sharing your story of achievement with The Arc. So if you, or someone you know who has an intellectual or developmental disability has a story to share, enter now. Then be sure to encourage everyone you know to vote for your story between July 15 and August 15 for your chance to win!

Here’s how to Achieve with us!

  • Write a short (500 words or less) narrative/essay telling us your story of achievement and submit it along with a photo at www.facebook.com/thearcus between June 14-July 14. (Photo not required by encouraged). Entries can come from individuals with I/DD who are 18 or older, their parents, guardians, caregivers or friends or from the parents or guardians of children under 18 who have I/DD.
  • Spread the word and encourage everyone you know to view your entry and “vote” for you between July 15-August 15.
  • If you win, you’ll hear from us after August 15 to make arrangements for you and a guest or caregiver to come to Washington, D.C. before December 20 and share your story with The Arc and elected officials on Capitol Hill. Check out complete contest details at www.facebook.com/thearcus.

Send in your story and tell us about your achievements on Facebook today. Then be sure to get out the vote starting July 15 and you could win!