Updates

TIME SENSITIVE, READ THIS AND ACT NOW—Nick's Crusade: One Young Man's Fight to Live Out the Promise of the ADA—Click here for further information and to take action.

Medicare

Reforming the Medicare Home Health Homebound Rule—Click here to scroll down for further information to take action.

Modifying Medicare DME Coverage Policies—Click here for further information to take action.

Medicaid

Medicaid State Budget Crises, Medicaid Cuts and Their Impacts on People with Disabilities—Click here for further information and to take action.

Making Sure the Money Follows the Person—Click here for further information and to take action.

TIME SENSITIVE, READ THIS AND ACT NOW

Alabama Will Force Disabled College Student into a Nursing Home Unless Bush Acts:

The State of Alabama will force Nick Dupree to go into a nursing home the day he turns 21 on February 23rd unless the Bush White House delivers on its promise to fully enforce the Americans with Disabilities Act (ADA). Dupree, who has muscular dystrophy, uses a power wheelchair and breathes with a ventilator. He is now able to live at home and attend college because federal law requires States to provide all medical necessary services to young people on Medicaid up until they become 21.

But, unless the federal government intercedes, Alabama Medicaid will stop providing him most of the services he needs to stay alive in his own home on his birthday. It will then say he can receive less than two hours of care and assistance each day or go into Southdown Care Center, a nursing home in Louisiana 195 miles away from everyone he knows and loves. See link below to CMS report on the quality of care in this facility.

Nick's dilemma is not unique. Another young man Alabama needlessly institutionalized died a short time later. As more States slash their Medicaid budgets, more people with disabilities will end up back in these places or be forced to sit in their own waste at home. Such practices violate key provisions of the ADA.

In its 1999 decision in Olmstead v. L.C., the U.S. Supreme Court ruled that the ADA requires States to take every reasonable step to avoid the "unjustified institutionalization" of people with disabilities by offering them services in the "the most integrated setting appropriate to their needs". A State must, therefore, use its Medicaid and other funds to support people with disabilities to live in the community rather than in nursing homes or other institutions to the maximum extent possible.

On January 21st, Bob Williams and Henry Claypool, Co Directors of AIMMM wrote the President strongly urging him to send clear message to Alabama and other States that the federal government will not tolerate the unjustified institutionalization of people with disabilities anywhere in the Nation. Specifically, the letter urges the President to:

Immediately convince the new Governor Bob Riley to take executive action to reverse his State's policy of the unjustified institutionalization and segregation of people with disabilities, whether young or old.

Direct Attorney General John Ashcroft to take all necessary action to fully enforce the civil rights of Nick Dupree and others with disabilities to live in the community with support. Rather than be needlessly institutionalized.

Direct HHS Secretary Tommy Thompson to write every other Governor to make clear that any similar policy or practice in any other State will not be tolerated and must be reversed immediately.

Upon taking office, President Bush pledged his Administration to working to ensure an era of New Freedom in which "all Americans with disabilities, whether young or old, can participate more fully in the life of their communities and of our country". More recently, in commenting on Senator Lott's controversial remarks, he forcefully made the point that: "Every day our nation was segregated was a day that America was unfaithful to our founding ideals." The President must translate his fine words into action by directing his Administration to do all it can to put an end to this particularly pernicious form of State and federally sanctioned segregation as it persists to this day.

Since AIMMM wrote to the President, countless people with disabilities, our families and allies have called, written or e mailed the White House demanding such action be taken. And, there are indications that these efforts are yielding results. Check back for updates.

More information on the Internet:

Click here for video clips of TV news reports on Nick Dupree:

Mobile NBC affiliate report on another young person who already lost his care at the stroke of midnight on his 21st birthday because of Alabama's policy. http://nickscrusade.com/Patrick.rm

Mobile NBC affiliate report on the Louisiana nursing home Medicaid intends to institutionalize Nick Dupree. The TV reporter gets thrown off the property. He also interviews the grandmother of a young man killed by the 21 cut off policy. http://oaksgroup.org/nconsd/HTMLobj-323/nick1.rm

To read a report by the federal Centers on Medicare and Medicaid Services on Southdown Care Center in Houma, Louisiana—the nursing home Nick is being forced to enter—go to: http://www.medicare.gov/NHCompare/Search/HomeSelect.asp?State=LA0%7CLouisiana&Language=English&Type=City&City=HOUMA. Note the unusually high percentage of patients with aggravated bed and pressure sores - conditions typically resulting from inadequate staffing and can often prove fatal.

Go to Nick's Web site at http://nickscrusade.com/.

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Medicare

Why the Medicare Home Health Homebound Rule Needs To Be Reformed

Basic Facts: Medicare home health services include skilled nursing care or therapy as well as assistance with such tasks as bathing, dressing, and eating for anyone that meets the basic requirements for needing other home health services. Medicare program must pay for home health services for any beneficiary who needs skilled nursing care, therapy and home health aide services due to an acute, advanced (i.e., terminal) or permanent condition so long as the person is "homebound". Hence, these services can be provided for only a few days or over a period of several years if these basic qualifying requirements continued to be met.

The Homebound Restriction: The law states that to be "homebound": 1. The individual must have "a normal inability to leave home"; 2. Leaving home must require "a considerable and taxing effort by the individual" typically by relying on a wheelchair or cane or the assistance of another person; and, 3. The person may leave home for any reason if such absences are of an "infrequent or of relatively short duration". The exception to this is that the law says a person can be absent from home to receive health care or to attend adult day care or religious services at anytime. In most cases, the homebound rule is a good way for deciding who needs the benefit because most of those who receive home health services do so only for a short time while they recover from surgery or an illness. After they recover they no longer have a need to be homebound or to receive home health services. Thus, in these instances the homebound rule can be applied in a fair manner.

The Policy Problem: The homebound restriction exacts far harsher consequences on the estimated 46,000 Medicare beneficiaries who due to permanent disability and/or serious health problem must receive skilled home health services for the remainder of their lives. The homebound restriction is forcing these individuals to "choose" between being prisoners for life in their own homes or give up services that literally keep them alive. This is a choice that the Medicare program should not force anyone to make. Unfortunately, many face this fate daily.

Meet David Jayne: David Jayne is one of these Americans. He has had ALS or Lou Gehrig's disease for 13 years. He uses a motorized wheelchair, a computerized voice synthesizer to speak and a portable ventilator to breathe and has relied on the Medicare home health benefit to meet his most needs for much of this time. In 2000, he launched the National Coalition to Amend the Homebound Rule after being temporarily thrown off the benefit for going to a football game and spending time with his children outside his home (Click here to go to the Coalition's site.).

Working Toward A Solution: AIMMM is working with David Jayne and other Medicare beneficiaries to eliminate the discriminatory and punitive impacts this rule has on thousands of Americans with disabilities. Senator Susan Collins (R-ME) and Representative Ed Markey (D-MA) introduced bills in the last Congress to address the problem. Neither were ever voted on but gained a significant number of cosponsors in the Senate and the House. Both will introduce similar legislation in the new session of Congress that begins in January 2003. We will post information on this new legislation on this site as it becomes available.

Act Now: To learn more and to become involved in working to change the Medicare homebound restriction, take the following steps:

Tell us your story—If you or someone you know have received Medicare home health services for a year or more, please e-mail us at directors@aimmm.org. Tell us how the homebound restriction is limiting your everyday freedoms or those of a family member or friend. We'll post whatever we receive on the Stories page of our Web site. We also compile an online summary of the stories we receive that can be used to help inform the policy debate on this issue. Please e-mail us today. Help make a difference in the lives of Americans with disabilities of all ages. Thanks.

Get the facts—

To read a booklet on the Medicare home health benefit by the Centers on Medicare and Medicaid Services, go to http://www.medicare.gov/publications/pubs/pdf/hh.pdf.

To read HHS' analysis of how the Medicare homebound rule deprives people of their freedom, click http://www.cms.hhs.gov/newfreedom/hhsselfeval.pdf and scroll to page 62.

To read how HHS misapplies the rule, see Lew Golinker's "THERE'S NO PLACE LIKE "HOMEBOUND" - UNDERSTANDING MEDICARE'S "CONFINED TO HOME" REQUIREMENTS", click http://www.upshawinst.org/techearlyspring97/homeboun.htm.

Sign A Petition—To sign an online Petition to President Bush and Congress supporting David Jayne and Amending the Medicare Homebound Restriction, click http://www.petitiononline.com/abolish1/petition.html".

Start to make a difference—To sign up to receive updates on what you can do to help change the homebound restriction and other restrictive policies like it, please e mail us at directors@aimmm.org

Learn more—To read an op ed by former U.S. Senator Bob Dole, entitled Imprisoned by Medicare, click http://www.washingtonpost.com/ac2/wp-dyn?pagename=article&node=&contentId=A52363-2002Jun26¬Found=true

In July 2002 President Bush announced that his Administration issued guidance "clarifying Medicare policy, so people who are considered homebound can occasionally take part in their communities, without fear of losing their benefits." The President stressed that the intent behind it was to ensure that "when Americans with disabilities participate in their communities, they should not be penalized." Unfortunately, the new guidance to home health agencies and Medicare carriers is even more restrictive than the already overly restrictive homebound definition in the statute. To read AIMMM's analysis of why this is the case, click here. Finally, to view or read the text of a segment on the homebound issue reported by Susan Dentzer on The Jim Lehrer News Hour on PBS click on one of the following - (audio version) (text version).

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Why Medicare's "In the Home" Only Coverage Policy For Wheelchairs and Similar Durable Medical Equipment Must Be Modified:

Basic Facts: Lightweight and motorized wheelchairs, scooters, walkers and similar devices enable individuals with disabilities to move about their homes, workplaces and communities more freely than ever before. Currently, however, Medicare's policy is to only purchase mobility devices that a person needs to function inside the four walls of their home. This means that if an individual can make do using a standard wheelchair at home that's all that Medicare will pay for. Even when the same person requires a lightweight or motorized wheelchair to move about their community or go to work, Medicare will only purchase the standard wheelchair.

The Policy Problem: The Medicare "in the home" only DME coverage policy is a good example of a "pennywise but pound foolish" Medicare requirement that is compromising the health, independence and self-sufficiency of people with disabilities of all ages. In the 70's Congress said Medicare could purchase wheelchairs and other durable medical equipment (DME) for use "in the person's home." Its intent in using this phrase was solely to ensure that Medicare not pay for DME used in hospitals and nursing homes. But the Centers on Medicare and Medicaid (CMS) Services - the agency that runs Medicare - is implementing the provision in a far more rigid way that makes it impossible for many to access devices they need to lead healthy, independent lives.

It is not uncommon nor a luxury, for example, for a person with a spinal cord injury to be able to use a manual wheelchair inside their homes but require a motorized wheelchair to effectively move about the community. Yet, if Medicare will only purchase the manual wheelchair, the person will have to use it in both settings. Over time, the extensive over reliance on a manual wheelchair can often results in the misuse and deterioration of the person's shoulder sockets and tearing in the surrounding muscles. This, in turn, can require costly surgery and lead to increased dependency. Moreover, rather than makes it easier for beneficiaries to maintain optimal health and thus, be able to return to work, which was the intent of the Ticket to Work Act, this requirement makes it more difficult for this to happen in many instances.

CMS has sent mixed messages about its ability and willingness to change its policy. In its report to the President on the New Freedom Initiative, CMS said it will "examine methods to improve access to durable medical equipment (DME), including revisiting the operative definition of DME in light of the Ticket to Work statute to determine if it should include additional technologies to promote independence and community living" (Go to this section of the report online at http://www.hhs.gov/newfreedom/final/hhsfull.html#sol1b2). However, the agency also has said that it cannot change the policy without being directed to do so by Congress. Furthermore, CMS and others have expressed the concern that any attempt to "loosen up" on the "in the home" only rule would result in increased costs for Medicare and new opportunities for fraud and abuse in this area.

Working Toward A Solution: AIMMM is organizing a new coalition of disability and aging groups to convince the new Congress and the Bush Administration to replace the current policy with one that requires Medicare to purchase wheelchairs and similar devices for use in someone's home, workplace and community when it is medically necessary and reasonable to do so. To be both fair and effective, any new Medicare DME coverage criteria must be implemented in a clear and consistent basis in every region of the country.

We believe that to promote cost efficiency and prevent possible fraud and abuse this new "in the home and community" coverage rule should focus on only to certain classes of DME that such as manual and motorized wheelchairs, scooters, walkers and other portable devices like a respirator that may enable an individual to be more independent and leave home. CMS also should be required to establish a uniform and easy to initiate appeals process that beneficiaries could use to request that other devices be added to such an updated coverage list at regular set intervals (e.g., every 6 to 12 months). We are hopeful that legislation to address these key issues will be developed and introduced as the new Congress deals with the need to enact a comprehensive package of Medicare reforms.

Act Now: To learn more and to become involved in working to change the Medicare "in the home" only DME purchase policy, take the following steps:

Tell us your story— If you or someone you know has been harmed by this policy please e-mail us at directors@aimmm.org. Tell us how not being able to acquire the wheelchair or another device you need to be healthy and independent is limiting your everyday freedoms or those of a family member or friend. We'll post whatever we receive on the Stories page of our Web site. We also compile an online summary of the stories we receive that can be used to help inform the policy debate on this issue. Please e-mail us today. Help make a difference in the lives of Americans with disabilities of all ages. Thanks.

Get the facts—For basic information on Medicare, including the DME coverage policy, go to Medicare and You 2003 at http://www.medicare.gov/publications/pubs/pdf/10050.pdf.

Start making a difference—To sign up to receive updates on what you can do to help change the Medicare "in the home" only DME coverage policy and other restrictive policies like it, please e mail us at directors@aimmm.org

Learn more—

To read HHS' analysis of how the Medicare "in the home" only DME coverage policy is depriving Americans with disabilities of all ages of their most fundamental freedoms, go to Delivering on the Promise: HHS Self Evaluation to Promote Community Living by People with Disabilities by clicking http://www.cms.hhs.gov/newfreedom/hhsselfeval.pdf and scrolling down to page 63.

To better understand people's experiences getting DME, the Medicare Rights Center surveyed 150 residents of New York State with Medicare who had used DME. Since Medicare is a federal program, the concerns identified are representative of people with Medicare nationwide even though the survey targets a single state. To read the findings, click on http://www.medicarerights.org/policyframeset.html.

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Medicaid State Budget Crises, Medicaid Cuts and Their Impacts on People with Disabilities

Basic Facts: According to the National Governors Association (NGA) States are facing the "most dire fiscal situation since World War II." Budget shortfalls are increasing at an alarming rate. Nationally, they amounted to $50 billion this past year and are expected to grow to $60 billion to $70 billion during the next year. To deal with the crisis, States are making deep cuts in many programs. And, some of the harshest of these will be made in their Medicaid programs that provide health care and long term care services to 44 million low income children and families, older people and people with disabilities nationwide.

The federal government provides States between 50% and 83% of the funds it takes to provide Medicaid services in a State. The amount of federal matching funds a State is largely based on the number of low-income people who live in it. But, generally speaking, most States now spend 30 percent or more of their own annual budgets on Medicaid and these costs are rising rapidly. Hence, to deal with their overall budget crises States are already making deep cuts and reducing services funded by Medicaid. We believe this unfolding situation is one that is fraught with risks, challenges and opportunities.

Medicaid and people with disabilities: Medicaid provides health care and long-term services to about 11 million older Americans and people with disabilities under age 65. 75% of those on Medicaid are low-income children, families and individuals who are not disabled. But, nearly 70% of Medicaid funding goes for services for older people and those with disabilities of all ages.

Medicaid spending on community living services has risen dramatically in the past 20 years. But the vast majority of States still spend between 70 to 90 percent of their Medicaid long-term care funding on nursing homes. In fact, Medicaid pays for nearly half of all nursing home costs throughout the nation. As States reduce their Medicaid spending overall and reprioritize how those limited resources get spent, therefore, we must insist that Governors and legislators as well as the Congress and the Bush Administration use this as a critical chance to reverse Medicaid's strong and endemic institutional bias.

Medicaid cuts impacting people with disabilities: The Center on Budget and Policy Priorities reports that if all of the Medicaid cuts proposed or adopted in 11 States since December actually take effect that about a million low income persons will lose their coverage altogether or have it significantly cut back. The Center says that most of these cuts will "overwhelmingly affect poor and near-poor working families with incomes too high to qualify for welfare." But, it also points out that some of the 11 States also are eliminating Medicaid coverage for some elderly persons and people with disabilities living below the poverty line. Medicaid cuts made or being considered in the States that the Center's report focuses on include the following

California. Governor Davis' proposed budget would eliminate Medicaid coverage for almost a half million beneficiaries, primarily low-income working parents. It also would lower reimbursement rates to health care providers by 10 percent and end coverage of certain dental, mental health, and rehabilitation services for adults.

Connecticut. Governor Rowland's proposed deficit reduction plan would reduce the Medicaid income limit for parents and other eligible adults from the current 150 percent of the poverty line to no more than 100 percent of the poverty line or lower.

Massachusetts. The legislature voted to eliminate Medicaid coverage for about 50,000 unemployed adults with very low incomes, as of April 1st. The Governor also took administrative actions to eliminate coverage for services such as dentures and prosthetic devices for about 600,000 low-income persons as of January 1st.

Missouri. This past summer, the legislature passed, and Governor Holden signed into law, a large package of Medicaid cuts. The state originally planned to terminate insurance coverage for about 36,000 low-income adults at once. But 17,000 have remained eligible for temporary, transitional Medicaid coverage due to a court ruling.

Nebraska. The State has implemented Medicaid cuts that will result in an estimated 26,000 Nebraska children and adults losing health care coverage.

Nevada. Nevada has deferred implementation of a number of Medicaid expansion and simplification policies authorized by the state legislature. It also reduced managed care and pharmacy reimbursements and restricted the use of some prescription drugs.

Montana. Governor Martz has just issued a number of proposals to scale back Medicaid expenditures. These include a proposed limit Medicaid eligibility for elderly people, particularly those who need nursing home care. This likely would affect these persons' eligibility for Medicaid community living as well. Montana Medicaid beneficiaries also will have to pay the highest level of out of pocket expenses in the nation.

New Jersey. By implementing a series of changes in its joint Medicaid-SCHIP program, NJ Family Care, the state is reducing and restructuring benefits, including certain mental health services and occupational and physical therapy for non-elderly adult beneficiaries. Some of those affected by these changes have severe physical or mental health conditions.

Oklahoma. Deep cuts are scheduled to take effect in coming months that will cause about 80,000 children, adults, seniors and people with disabilities to lose Medicaid or CHIP coverage. On January 1, Oklahoma reduced Medicaid coverage for disabled adults, people with AIDS, and others by limiting drug coverage to three prescriptions a month, hospital stays, physician services and other services.

Tennessee. In July, Tennessee began implementing changes to its Medicaid waiver program, TennCare. Preliminary data from the first several months of implementation suggest that the number of individuals losing coverage could exceed 250,000 by January.

Washington. The State reallocated payments it makes for its Supplemental Security Income program, resulting in about 3,000 elderly and disabled beneficiaries losing their state SSI benefits and Medicaid coverage as well. The State also has applied for a federal waiver to let it cap Medicaid enrollment levels and limit benefits for certain Medicaid beneficiaries, while increasing the amount that some low-income families must pay to enroll in Medicaid and to receive various health care services. Overall, the proposed plan would cover 40,000 fewer individuals.

The Center further warns that most of the nation's Governors will propose similar - perhaps even deeper -- cuts in Medicaid coverage and services as they release their budgets over the coming 4 to 8 weeks. According to the National Conference of State Legislatures, 44 states will consider proposals to limit Medicaid eligibility, delay needed expansions of community living services, cut services it already covers, and/or freeze or cut back payments to providers during the next several months. (Click here to read the Center on Budget and Policy Priorities' full report at http://www.cbpp.org/12-23-02health.htm)

Help AIMMM track changes to Medicaid at the State level: Many actions will be debated and taken to revamp Medicaid at the federal and state levels this year. Some may be beneficial to people with disabilities and their families. Given the cuts in services that already have been made, however, a great many of these changes will undermine the right and abilities of people with disabilities of all ages to live in their own homes and communities. Collectively, changes made to Medicaid in the States also will influence and shape the types of Medicaid reforms that the Bush Administration and the Congress will be considering were at the federal level.

For these reasons, AIMMM is interested in helping to track changes made by States in their Medicaid programs across the nation and how they directly impact people with disabilities of all ages and their families. And, we're counting on your help in doing so.

Act Now: To learn more and to become involved in helping to track and document the impact of changes being made to Medicaid in your States and their impacts on people with disabilities, please take the following steps:

E mail us a summary of Medicaid changes in your State—Tell us what cuts in services and other changes are being made to Medicaid in your State and how they will directly affect you and/or others with disabilities. E mail us at directors@aimmm.org. Please try to keep your summary to a page or less. We'll compile an online summary of the stories we receive that can help inform the policy debate on this issue.

Start making a difference—To sign up to receive updates on what you can do to help on this and other issues, you also e mail us at directors@aimmm.org.

Learn more—For more information on how States are cutting Medicaid services and how those changes will likely affect people with disabilities, we suggest that you read the following:

A November, 2002 press release by the National Governors' Association outlining the actions States are taking to deal with their budget crises by, among other things, cutting Medicaid services online at http://www.nga.org/nga/newsRoom/1,1169,C_PRESS_RELEASE^D_4693,00.html.

The NGA release details the findings of a report it prepares biannually, entitled The Fiscal Survey of States, which is online at http://www.nga.org/cda/files/NOV2002FISCALSURVEY.pdf.

A January 2003 op ed by NGA Executive Director Ray Scheppach, entitled What Ails the States? online at http://www.nga.org/nga/legislativeUpdate/1,1169,C_ISSUE_BRIEF^D_4804,00.html.

A July, 2002 report by the Kaiser Family Foundation, entitled State Budgets Under Stress: How are States Planning to Reduce the Growth in Medicaid Costs? by clicking on http://www.kff.org/content/2002/20020730/.

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Making Sure the Money Follows the Person

Basic Facts: In 1999 the U.S. Supreme Court found the ADA forbids States from institutionalizing people with disabilities of any age if they can live in the community with the right mix of cost efficient community living services). It said that the ADA requires each State to use its Medicaid and other funds to support people with disabilities in the community rather than in nursing homes or other institutions whenever possible. (For more information and Key Resources on the ADA and L.C. v. Olmstead click here). To do this effectively, State must make certain that when a person leaves a nursing home that the Medicaid money is moved from the nursing home budget over to the community side of the ledger.

Texas Investing in People, Not Bricks and Mortar: Thanks to the hard work of ADAPT and many others in the Lone Star State, the Texas legislature is the first in the Nation to put this critical principle the "the money must follow the person" into practice. It did this by include the following provision in its appropriations bill: "It is the intent of the legislature that as clients relocate from nursing facilities to community care services, funds will be transferred from Nursing Facilities to Community Care Services to cover the cost of the shift in services." -- Rider 37 for Promoting Independence.

As of November 1, 2002 1,189 Texans used the Promoting Independence Rider to leave nursing homes and to receive the services they need to live in their own homes. Nearly 70 percent of them were between the ages of 65 and 99 and the remainder was under age 65. (For more information and resources on Promoting Independence, click here.) It's time for all of us to take the "bull by the horns" and wrestle money away from an industry that relies on State Medicaid for a glowing percentage of its money every day. It is imperative that all States follow Texas example, especially in this sagging economy when States are cutting their Medicaid budgets (for more information on State Budget Crises, Medicaid Cuts and Their Impacts on People with Disabilities click here).

Act Now: If Medicaid money is not following persons who want to leave nursing homes and other institutions in your State, find out why. Work with other disability and aging advocates to make certain that it does. To find out more how the disability and aging communities in Texas were successful in getting the "money to follow the person" in the Lone Star State e mail Bob Kafka at bkafka@juno.com.

If there is already a campaign to make sure that the money follows the person in your State we would like to hear about it. Please e-mail us at directors@aimmm.org. We'll post whatever information we obtain on this topic on our Web site at www.aimmm.org. Thanks.

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