In 2010 The Arc conducted a national internet survey to capture the perspectives of people with intellectual and or developmental disabilities (I/DD) and their family caregivers. Much of the data supports The Arc’s Don’t Cut Our Lifeline campaign. The Family and Individual Needs for Disability Supports (FINDS) survey focused on issues including educational, housing, employment and support needs of people with ID/DD and their families. More than 5,287 family respondents participated in the survey; of these, three-quarters shared their home with a person with ID/DD. Overall, 95 percent of respondents were parents, siblings, children, grandparents or other relatives of a person with ID/DD.
Family caregivers in 2010 reported substantial ongoing challenges to providing lifelong supports to family members with intellectual or developmental disabilities. People with ID/DD and their families face very real challenges to achieving their aspirations for the future, and decreasing benefits from Medicaid will only continue to hamper such aspirations and millions of lives.
Supports provided by Family Caregivers
- Most family caregivers (58%) provide more than 40 hours of unpaid care per week and 40% provide more than 80 hours of unpaid care per week. This interferes with their work (71%) and causes physical (88%) and financial strain (81%).
- 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%).
- They report paying for more services out of pocket (47%) and providing more support than they used to (41%).
- Fifty-two percent (52%) of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program;
- People with severe ID/DD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild ID/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.
- Family caregivers report that 25% of the people with ID/DD had no source of
- income. Only 15% of the people reported being employed.
- Overall, 62% report experiencing decreases in services and 32% were waiting
- for government funded services, most for more than 5 years.
- 20% of family caregivers reported that someone in the family had to quit their job to support the person with ID/DD.
- More than 40% of family caregivers reported the person with ID/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%).
- 43% report that schools have cut back on services such as physical, occupational or speech therapies;
- Nearly two-thirds of all family caregivers worry that the person they care for might have to go somewhere they don’t want to live.
Having information that is specific to your state and/or Congressional district can be very helpful in educating and persuading your Members of Congress. We have identified a few such credible sources of Medicaid data:
State Medicaid Fact Sheets
The Kaiser Family Foundation has created a web site that allows you to create fact sheets comparing your state to others and the nation as a whole. Each fact sheets provides the state’s distribution by insurance status, Medicaid enrollment and spending by group (including people with disabilities), detailed demographic profiles, and more.
State Profiles in Medicaid Spending on Intellectual and Developmental Disabilities Services
The Coleman Institute on Developmental Disabilities at the University of Colorado publishes information on revenue, spending, and programmatic trends for intellectual/developmental disabilities (I/DD) services in the 50 states, the District of Columbia, and the United States as a whole.
Medicaid State Spending and Your State’s Economy
Families USA has created an interactive website that allow you to enter an amount of Medicaid spending cuts in your state. It then calculates the amount of money lost to the state in business activity, jobs, and salary and wages.
District by District Impact of Medicaid Cuts
Rep. Henry A. Waxman, Ranking Member of the House of Representatives’ Energy and Commerce Committee, and Rep. Frank Pallone, Jr., Ranking Member of the Health Subcommittee, have released new analyses detailing the impact of the Republican Medicare and Medicaid proposals on each Congressional district.
The Medicaid and Children’s Health Insurance (CHIP) Payment Advisory Committee, known as MACPAC, provides state-specific information about program enrollment, spending, eligibility levels, optional Medicaid benefits covered, and the federal medical assistance percentage (FMAP), as well as an overview of cost-sharing permitted under Medicaid and the dollar amounts of common federal poverty levels (FPLs) used to determine eligibility for Medicaid and CHIP. It also provides information that places these programs in the broader context of state budgets and national health expenditures. View the report.
This week, when The Arc staff learned of Tracy Morgan’s comments in a recent comedy show in New York City, we knew we had to respond. Not because we are against free speech – as an organization dedicated to protecting the rights of people with intellectual and developmental disabilities, we wholeheartedly support freedom of speech and other constitutional rights. We responded because we don’t like to see hateful, hurtful speech aimed at people with disabilities.
Tracy Morgan is a very successful comedian who made a joke that he thought was funny in the moment, and certainly anyone has a right to laugh at whatever jokes he or she wants. Some people think we’re being oversensitive, and that’s understandable. Mr. Morgan has more leeway because of what he does – making people laugh – and that means he pushes boundaries and social norms. We can appreciate that, but what we don’t think he realized is that the language he used is hurtful to many, many people. And it’s The Arc’s job to stand up for them.
This isn’t about free speech, defining comedy or free publicity as much as it’s about making sure society treats people with disabilities with respect.
In the last year, we’ve called out NBA star LeBron James and former White House chief of staff Rahm Emanuel for using similar language. And each time, it has sparked a lively conversation about free speech and human rights. We’re thrilled to be a part of this debate because these public figures (and everyone else in the conversation) can share with all of society why the “r-word” and other derogatory terms directed at people with intellectual and developmental disabilities are not okay.
People have a right to express themselves. And we at The Arc can take a joke, but we are compelled to stand up when it crosses into territory that hurts the people we represent.
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!
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.
- 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.
- 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.
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.
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.
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. Learn more about the bill.
Here at The Arc, 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 and become a member of The Arc!
On Friday night, at a post-playoff game press conference, LeBron James used an offensive word to people with intellectual and developmental disabilities and their families. The video of his comment was posted widely online, and quickly caught the attention of the media and The Arc’s national office. The Arc’s CEO, Peter Berns, released this comment to the media:
“LeBron James should apologize immediately. No matter the context, this language is very offensive to people with intellectual and developmental disabilities and their families, and an athlete admired by kids everywhere should recognize the power of his actions and words.”
LeBron James began his next press conference with an apology.
We want to hear your take on this issue – when sports figures or celebrities use language that some find offensive, do they have a responsibility to apologize?
Let us know in the comments.
The health care reform law provides categories of care that must be provided for customers of the health-insurance exchanges that are launching in 2014. An article in today’s Wall Street Journal, “Defining Essential Care,” points out that “The next big issue for the federal health law as it moves toward implementation is how regulators will define so-called essential benefits—the basic medical services that health plans must cover under the law.” So the details are left up to regulators who are now starting to develop the rules on what is an “essential” health care service and what is not.
Habilitative services, used by such children with Autism and other developmental disabilities, have become a particularly contentious point in the debate. The Arc’s Marty Ford provides an example of the difference between rehabilitative and habilitative services. (Visit our website to read Marty’s prior testimony on the importance of defining habilitation as an essential service.)