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Questions and Answers on Potential Medicaid Cuts

/in /by Kristen Bossi

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.
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Tell Your Members of Congress, “Don’t Cut Our Lifeline!”

/in /by The Arc

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!

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The Arc Commends Senator Franken’s Commitment to Protecting Medicaid

/in /by The Arc

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.

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New Survey Shows Urgent Unmet Needs for Disability Support

/in /by Kristen Bossi

The 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.

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

/in /by The Arc

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, DC. 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. 

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Achieve With Us and Win a Trip to Washington, DC

/in /by Shelly DeButts

The 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. 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!

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The Arc Begins Affiliation With the U.S. Business Leadership Network to Improve Employment for People With Disabilities

/in /by The Arc

WASHINGTON – Today, The Arc, the largest organization advocating for and serving people with intellectual and developmental disabilities (I/DD), is announcing it has become an affiliate of The US Business Leadership Network® (USBLN®). The USBLN seeks to help build workplaces where people with I/DD are valued for their talents and contributions.

“It’s partnerships like this one that will help advance employment for people with I/DD. The Arc aims to be a resource to businesses large and small that see the value in employing people with all kinds of skill sets so that they can contribute to society in a meaningful way and live a fulfilling life,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, FASD, 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.

The Arc’s network will help the USBLN, which is the national disability organization that serves as the collective voice of over 60 Business Leadership Network affiliates across North America and represents over 5,000 employers, advance employment opportunities for people with I/DD. In this tough economy, with the national unemployment rate at 9%, people with I/DD face huge obstacles to gaining employment in the private sector.  While there are federal programs to help those with I/DD find employment within the federal government, in recent years the percentage of federal employees with disabilities has decreased.

The USBLN promotes the business imperative of the preparation and inclusion of people with disabilities in the workplace, marketplace, and supply chain while supporting the development and expansion of its BLN affiliates. The USBLN recognizes and supports best practices in hiring and advancing employees with disabilities, marketing to consumers with disabilities, and encourages contracting with vendors with disabilities through the development and certification of disability-owned business enterprises. To learn more, visit www.usbln.org.

“This is a tremendous opportunity for The Arc to take a step forward in our goal of increasing employment for people with I/DD.  We look forward to what this affiliation will bring across the country to the people we serve,” said Berns.

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The Senate Heard You and Voted Down the Disastrous House Budget Plan

/in /by Kristen Bossi

Late yesterday, the U.S. Senate voted down a federal spending plan that could have disastrous consequences for people with intellectual and developmental disabilities. The bill aims to make drastic cuts and changes to important programs liked Medicaid, Medicare, the new health care law, and a host of other programs that help people with I/DD achieve.

We want to give a big thanks to the hundreds of members who acted on our call to contact their Senator and ask that they vote against this bill! You do make a difference!

For those of you want to get more involved, sign up to get our Action Alerts!

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The Arc Commends the U.S. Senate for Voting Down Disastrous Budget for People With Disabilities

/in /by The Arc

WASHINGTON – Late yesterday, the U.S. Senate voted down a federal spending plan that could have disastrous consequences for people with intellectual and developmental disabilities (I/DD). Leading up to the vote, The Arc, the nation’s largest and oldest human services organization for the I/DD community serving more than a million people with I/DD individuals and their families, opposed this legislation because it would cut $750 billion over 10 years out of Medicaid and end the program 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.

“The U.S. Senate’s vote put the brakes on a disastrous budget proposal for people with intellectual and developmental disabilities. As Congress and the nation continue to debate how to promote economic recovery and tackle our deficit, it can’t be done on the backs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.

The House of Representatives passed this budget plan, known as the Ryan Plan after its author, Congressman Paul Ryan of Wisconsin, in April. 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.

The $4.3 trillion from all of these cuts would be used to provide $4.2 trillion in tax cuts over 10 years without tackling the nation’s deficit.

For people with I/DD, these cuts would have a huge impact on their health and lives. People with I/DD could be denied health insurance coverage, home and community based services, supportive housing, job training, education, transportation, and other services. Medicaid currently funds 78% of services for individuals with I/DD.

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Discrimination in the Workplace: Has It Happened to You?

/in /by The Arc

The U.S. Equal Employment Opportunity Commission is taking up a troubling employer discrimination lawsuit. Jason O’Dell of Maryland applied for work as a lab technician through a major national employment agency. The opportunity seemed promising, but shortly after disclosing his Asperger’s diagnosis, the lawsuit states that Jason was told that the position was “on hold.” But the agency allegedly kept on recruiting to fill the job.

So the federal government stepped in and slapped a lawsuit against the firm, called Randstad. Since this is a huge, national employment agency, The Arc wants to know – has anyone out there had a similar experience with the company? We can’t allow discrimination like this to be tolerated.

Share your story with us in the comments, or email Kristen Bossi at bossi@thearc.org.