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Don’t Cut Bailey’s Lifeline

/in /by The Arc

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

Carrin and Mitchell Brandt are parents of 10-year-old Bailey, who has an intractable (uncontrolled) seizure disorder, cerebral palsy, a history of aspiration and significant global delays. Bailey needs assistance and support with all daily living and recreational activities, and Medicaid helps pay for it. She has a shunt, a G-tube, and uses a communication device. Bailey has had more than five seizures daily, and Medicaid paid for her brain surgery to remove her left hemisphere for better seizure control. Medicaid has paid for over fifteen seizure medications, one of which was over $1,000 for a one week supply. She has had orthopedic issues, including a hip displacement and a leg length discrepancy. When Bailey grows older, she will need Medicaid for long-term support needs, such as residential and day support.

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

Take Action

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

About the Video

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

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FINDS Survey Facts to Support “Don’t Cut Our Lifeline” Campaign

/in /by Kristen Bossi

In 2010, The Arc conducted a national internet survey to capture the perspectives of people with intellectual and or developmental disabilities (IDD) 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.

Challenges

  • 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.
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Find Medicaid Data State by State

/in /by Kristen Bossi

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 (IDD) 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.

Medicaid Statistics

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.

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Different Deficit Reduction Efforts, Same Result for Medicaid?

/in /by Kristen Bossi

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 (IDD) 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.
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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 (IDD) 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 IDD 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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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 IDD 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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What Did Obama Say About the Budget Battle?

/in /by Shelly DeButts

You may have read our CEO Peter V. Berns’ reaction to President Obama’s speech on Wednesday about the budget battle being waged at the Federal level. You know that we at The Arc are unwavering in our conviction that we must preserve the social safety net for the most vulnerable Americans, including people with intellectual and developmental disabilities.

We simply can’t balance the budget on the backs of individuals and families who need our support to meet the most basic needs of medical care, housing, employment and education opportunities, much less to meet their expectations that they be fully included and able to participate in their communities and in society. Now, you might want to read the full text of the President’s speech on the matter and judge for yourself where he falls on the subject. Tell us what you think. Is the President pursing the right path? Will he succeed against the opposition he faces in Congress?

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The Arc Makes a Statement on Employment

/in /by Shelly DeButts

Late last week, The Arc submitted a formal statement to the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP) to be recorded as testimony in the record of the hearings held to draw attention to the critical issues of employment of people with intellectual and developmental disabilities (IDD).

We took this opportunity to go on record with The Arc’s position that people with IDD have a fundamental moral, civil and constitutional right to be fully included and actively participate in all aspects of society, including having the opportunity to be competitively employed. We pointed out the dismal statistics concerning the state of employment of working age adults with IDD and urged specific reform in several key areas of public policy. We highlighted the work The Arc is doing to identify and promote best practices in helping people with IDD become successfully employed through programs such as School-to-Community Transition funded by a grant from the Walmart Foundation. And we advocated for forceful, coordinated efforts to build up opportunities for integrated community employment.

We were grateful for this opportunity to be heard by our Congressional leaders and we urge them to take our advice. But our voice becomes louder and stronger when joined by our supporters on the grassroots level, so we encourage you to read the full statement, find out more about the issues at hand and take every opportunity to let your elected officials and community leaders know you support full inclusion for people with IDD, including but not limited to opportunities for competitive employment.

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Who Decides Essential Care?

/in , /by Kristen Bossi

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. (Read Marty’s prior testimony on the importance of defining habilitation as an essential service.)

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Does Speaking Up Make a Difference?

/in /by Shelly DeButts

In the current political climate, it’s easy to become frustrated and start thinking that your voice doesn’t count. But we’re here to tell you that when you advocate for people with intellectual and developmental disabilities, your voice is heard. It does count. And, we have proof.

Every year hundreds of advocates like you come together on Capitol Hill for the annual Disability Policy Seminar for three days. For the first two days of the seminar, you hear from disability policy experts and other advocates about the most pressing issues facing the IDD community this year. Then, on the third day, you take the Hill by storm with your fellow advocates and personally meet with your Senators and Representatives, including members of key committees that control the legislation you want to see passed or defeated. We have done some research and discovered that at least for the past few years, Congressional sponsorship of crucial bills important to the IDD community increased in the months immediately following the annual seminar.

So, what issues were discussed during those meetings? What bills were pushed? That was up to you. All we know is, after your visits, many of those Senators and Representatives seemed to suddenly decide to co-sponsor bills to positively impact the lives of people with IDD.  And, many of those bills were subsequently passed into law. Maybe it was coincidence. We think it was because of you.

The 2011 Disability Policy Seminar is February 14-16 and early registration ends January 11. Are you registered yet?