S. 1217/H.R. 2869, “Ending the Medicare

Disability Waiting Period Act of 2005”

Senators Jeff Bingaman (D-NM) and Mike DeWine (R-OH) introduced S. 1217, “Ending the Medicare Disability Waiting Period Act of 2005” on June 9, 2005.  A companion bill, H.R. 2869, was introduced by Rep. Gene Green (D-TX) in the House of Representatives on June 13, 2005.

The bills would, over 10 years, completely phase-out the two-year waiting period which Americans with disabilities must endure before receiving Medicare coverage.  The legislation also creates a process by which the Secretary can immediately waive the waiting period for people with life-threatening illnesses.

Background

When Medicare was expanded in 1972 to include people who have significant disabilities, lawmakers created a “Medicare waiting period.”  Before they can get Medicare coverage, people with disabilities must first receive Social Security Disability Insurance (SSDI) for 24 months.  Generally, SSDI begins five months after an individual’s disability has been certified.  As a result, people with disabilities face three consecutive waiting period prior to getting health coverage: (1) a determination of SSDI approval from the Social Security Administration; (2) a five-month waiting period to receive SSDI; and, (3) another 24-month waiting period to get Medicare coverage.

Because of the 24-month Medicare waiting period, an estimated 400,000 Americans with disabilities are uninsured and many more are underinsured at a time in their lives when the need for health coverage is most dire (Dale and Verdier, The Commonwealth Fund, July 2003).  In fact, various studies show that death rates among SSDI recipients are highest during the first two years of enrollment (Mauney, AMA, June 2002).  For example, according to the Commonwealth Fund, 4 percent of these people die during the waiting period.

There is an important exception to the 24-month waiting period and that is for individuals with amyothrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and for those with end-stage renal disease (ESRD).  The ALS exception passed the Congress in December 2000 and went into effect July 1, 2001.

“Ending the Medicare Waiting Period Act of 2005” would, over 10 years, phase-out the waiting period and would also, in the interim, create a process by which others with life-threatening illnesses, like ALS, could also get an exception to the waiting period.

As the Medicare Rights Center has said, “By forcing Americans with disabilities to wait 24 months for Medicare coverage, the current law effectively sentences these people to inadequate health care, poverty or death…Since disability can strike anyone, at any point in life, the 24-month waiting period should be of concern to everyone, not just the millions of Americans with disabilities today.”

If you have any questions or need additional information, please contact Bruce Lesley in Senator Bingaman’s office at 202-224-5521, Abby Kral in Senator DeWine’s office at 202-224-7900, or Lantie Ferguson in Representative Green’s office at 202-225-1688.

STATEMENT BY SENATOR JEFF BINGAMAN

Introduction of “Ending the Medicare Disability Waiting Period Act of 2005” 

June 9, 2005

Mr. President, I rise today to introduce bipartisan legislation entitled “Ending the Medicare Disability Waiting Period Act of 2005” with Senators DeWine, Corzine, Durbin, Schumer, Johnson, Cantwell, Lautenberg, Stabenow, Kennedy, Clinton, Kerry, Mikulski, Akaka, Salazar, and Sarbanes.  This legislation would phase-out the current two-year waiting period that people with disabilities must endure after qualifying for Social Security Disability Insurance (SSDI).  In the interim or as the waiting period is being phased out, the bill would also create a process by which the Secretary can immediately waive the waiting period for people with life-threatening illnesses.

When Medicare was expanded in 1972 to include people with significant disabilities, lawmakers created the 24-month waiting period.  According to a July 2003 report from the Commonwealth Fund, it is estimated that over 1.2 million SSDI beneficiaries are in the Medicare waiting period at any given time, “all of whom are unable to work because of their disability and most of whom have serious health problems, low incomes, and limited access to health insurance.”

The stated reason at the time was to limit the fiscal cost of the provision.  However, Mr. President, I would assert that there is no reason, be it fiscal or moral, to tell people that they must wait longer than two years after becoming severely disabled before we give provide them access to much needed health care.

In fact, it is important to note that there really are actually three waiting periods that are imposed upon people seeking to qualify for SSDI.  First, there is the disability determination process through the Social Security Administration, which often takes many months or even longer than a year in some cases.  Second, once a worker has been certified as having a severe or permanent disability, they must wait an additional five months before receiving their first SSDI check.  And third, after receiving that first SSDI check, there is the two-year period that people must wait before their Medicare coverage begins.

What happens to the health and well-being of people waiting more than 2 ½ years before they finally receive critically needed Medicare coverage?  According to Karen Davis, president of the Commonwealth Fund, which has conducted two important studies on the issue, “Individuals in the waiting period for Medicare suffer from a broad range of debilitating diseases and are in urgent need of appropriate medical care to manage their conditions.  Eliminating the two-year wait would ensure access to care for those already on the way to Medicare.”

Again, we are talking about individuals that have been determined to be unable to engage in any “substantial, gainful activity” because of either a physical or mental impairment that is expected to result in death or to continue for at least 12 months.  These are people that, by definition, are in more need of health coverage than anybody else in our society.  Of the 1.2 million people stuck in the two-year waiting period at any given time, it is estimated that one-third, or 400,000, are left completely uninsured.  The consequences are unacceptable and are, in fact, dire.

In fact, various studies show that death rates among SSDI recipients are highest during the first two years of enrollment while waiting to be covered by Medicare.  For example, the Commonwealth Fund report, entitled Elimination of Medicare’s Waiting Period for Seriously Disabled Adults: Impact on Coverage and Costs, 4 percent of these people die during the waiting period.  In other words, it is estimated that of the estimated 400,000 uninsured disabled Americans in the waiting period at any given time, 16,000 of them will die awaiting Medicare coverage.  Let me repeat…16,000 of the 400,000 uninsured disabled in the waiting period at any given moment will die while waiting for Medicare coverage to begin.

Moreover, this does not factor in the serious health problems that others experience while waiting for Medicare coverage during the two-year period.  Although there is no direct data on the profile of SSDI beneficiaries in the two-year waiting period, the Commonwealth Fund has undertaken a separate analysis of the Medicare Current Beneficiary Survey for 1998 to get a good sense of the demographic characteristics, income, and health conditions of this group.

According to the analysis, “…45 percent of nonelderly Medicare beneficiaries with disabilities had incomes below the federal poverty line, and 77 percent had incomes below 200 percent of poverty.  Fifth-nine percent reported that they were in fair or poor health; of this group, more than 90 percent reported that they suffered from one or more chronic illnesses, including arthritis (52%), hypertension (46%), mental disorder (36%), heart condition (35%), chronic lung disease (26%), cancer (20%), diabetes (19%), and stroke (12%).”

To ascertain the impact the waiting period has on the lives of this citizens, the Commonwealth Fund and the Christopher Reeve Paralysis Foundation conducted a follow-up to “gain insight into the experiences of people with disabilities under age 65 in the Medicare two-year waiting period.”  According to that second report entitled Waiting for Medicare: Experiences of Uninsured People with Disabilities in the Two-Year Waiting Period for Medicare in October 2004, “Most of these individuals must invariably get by with some combination of living one day at a time, assertiveness, faith, and sheer luck.”

One person in the waiting period with a spinal cord injury from Atlanta, Georgia, seeking medical treatment for their condition was told to simply “try not to get sick for two years.”  As the individual said in response, “None of us TRIED to become disabled.”

The people that we have spoken to in the waiting period, since the introduction of this legislation last year, talk about foregoing critically needed medical treatment, stopping medications and therapy, feeling dismayed and depressed about their lives and future, and feeling a loss of control over their lives and independence while in the waiting period.

These testimonials and appeals in support of this legislation are often emotional and intense.  Some describe the waiting period as a “living nightmare” and appropriately ask how it is possible that their government is doing this to them.

In fact, some have had the unfortunate fate of having received SSI and Medicaid coverage, applied for SSDI, and then lost their Medicaid coverage because they were not aware the change in income when they received SSDI would push them over the financial limits for Medicaid.  In such a case, and let me emphasize this point, the government is effectively taking their health care coverage away because they are so severely disabled.

Therefore, for some in the waiting period, their battle is often as much with the government as it is with their medical condition, disease, or disability.

Nobody could possible think this makes any sense.

House Ways and Means Chairman Bill Thomas questioned the rationale of the waiting period in a press conference on April 29, 2005.

As the Medicare Rights Center has said, “By forcing Americans with disabilities to wait 24 months for Medicare coverage, the current law effectively sentences these people to inadequate health care, poverty, or death…Since disability can strike anyone, at any point in life, the 24-month waiting period should be of concern to everyone, not just the millions of Americans with disabilities today.”

Although elimination of the Medicare waiting period will certainly increase Medicare costs, it is important to note that there will be some corresponding decrease in Medicaid costs.  Medicaid, which is financed by both federal and state governments, often provides coverage for a subset of disabled Americans in the waiting period, as long as they meet certain income and asset limits.  Income limits are typically at or below the poverty level, including at just 74 percent of the poverty line in New Mexico, with assets generally limited to just $2,000 for individuals and $3,000 for couples.

The Commonwealth Fund estimates that, of the 1.26 million people in the waiting period, 40 percent are enrolled in Medicaid.  As a result, the Commonwealth Fund estimates in the study that federal Medicaid savings would offset nearly 30 percent of the increased costs.  Furthermore, states, which have been struggling financially with their Medicaid programs, would reap a windfall that would help them better manage their Medicaid programs.

Furthermore, from a continuity of care point of view, it makes little sense that somebody with disabilities must leave their job and their health providers associated with that plan, move on the Medicaid to often have a different set of providers, to then switch to Medicare and yet another set of providers.  The cost, both financial and personal, of not providing access to care or poorly coordinated care services for these seriously ill people during the waiting period may be greater in many cases than providing health coverage.

And finally, private-sector employers and employees in those risk-pools would also benefit from the passage of the bill.  As the 2003 report notes, “…to the extent that disabled adults rely on coverage through their prior employer or their spouse’s employer, eliminating the waiting period would also produce savings to employers who provide this coverage.”

To address concerns about costs and immediate impact on the Medicare program, the legislation phases out the waiting period over a 10-year period.  In the interim, the legislation would create a process by which others with life-threatening illnesses could also get an exception to the waiting period.  Congress has previously extended such an exception to the waiting period individuals with amyothrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and for hospice services.  The ALS exception passed the Congress in December 2000 and went into effect July 1, 2001.  Thus, the legislation would extend the exception to all people with life-threatening illnesses in the waiting period.

Mr. President, I would like to thank Senator DeWine and the other original cosponsors, including Senators Corzine, Durbin, Schumer, Johnson, Cantwell, Lautenberg, Stabenow, Kennedy, Clinton, Kerry, Mikulski, Akaka, Salazar, and Sarbanes, for supporting this critically important legislation.  Furthermore, I would like to commend Representative Gene Green of Texas for his introduction of the companion bill in the House of Representatives and for his work, diligence, and commitment to this issue.

I urge passage of this legislation and request unanimous consent for a Fact Sheet, which includes a list of original supporting organizations for the legislation, and the text of the bill to be printed in the RECORD.

CO-SPONSORS
(As of 08/02/05)

CO-SPONSORS OF S. 1217

CO-SPONSORS OF H.R. 2869

Up-to-the minute information on co-sponsor's is available at http://thomas.loc.gov/bss/d109query.html.
Simply enter S. 1217 for Senate information or H.R.2869 for House of Representatives information.

Supporting Organizations

Acid Maltase Deficiency Association

AIDS Foundation of Chicago

The AIDS Institute

AIDS Project Los Angeles

Air Compassion America

Alzheimer's Association

American Academy of Audiology

American Academy of HIV Medicine

American Academy of Neurology

American Academy of Physical Medicine and Rehabilitation (AAPM&R)

American Autoimmune Related Diseases Association (AARDA)

American Congress of Rehabilitation Medicine (ACRM)

American Congress of Community Supports and Employment Services (ACCSES)

American Dance Therapy Association

American Gastroenterological Association

American Laryngeal Papilloma Foundation

American Network of Community Options and Resources

American Occupational Therapy Association

American Psychological Association

American RSDHope

Angel Flight Mid-Atlantic

The Arc of the United States

Association for Community Affiliated Plans

Association of University Centers on Disabilities (AUCD)

Benign Essential Blepharospasm Research Foundation

The Brain Injury Association of American

Brian Tumor Action Network

California Health Advocates

Center for Medicare Advocacy, Inc.

Christopher Reeve Paralysis Foundation

Coalition for Pulmonary Fibrosis

Committee of Ten Thousand

Community Action New Mexico

Disability Service Providers of America (DSPA)

Dysautonomia Foundation, Inc.

Dystonia Foundation

Easter Seals

Empowering Our Communities in New Mexico

Epilepsy Foundation

Families USA

Family Voices

Gay Men's Health Crisis

Harm Reduction Coalition

Heightened Independence and Progress

Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International

Hermansky-Pudlak Syndrome Network Inc. 

HIV Medicine Association

HIVictorious, Inc., Madison, WI

Hydrocephalus Association

International Pemphigus Foundation

Interstitial Cystitis Associaton

Medicare Rights Center

Mercy Medical Airlift

Miami, ACT UP

Michigan League for Human Services

Mid South Chapter - National Multiple Sclerosis Society

Moebius Syndrome Foundation

National Alliance for the Mentally Ill (NAMI)

National Alliance of State and Territorial AIDS Directors (NASTAD)

National Association of Children's Behavioral Health

National Association of Councils on Developmental Disabilities (NACDD)

National Association of Counties (NACo)

National Association of Protection and Advocacy Systems (NAPAS)

National Association of Social Workers

National Association of State and Territorial AIDS Directors (NASTAD)

National Association of State Mental Health Program Directors

National Ataxia Foundation

National Council on Independent Living (NCIL)

National Disability Rights Network

National Health Law Program (NHeLP)

National Kidney Foundation

National Mental Health Association

National Minority AIDS Council

National Multiple Sclerosis Society

National Niemann-Pick Disease Foundation

National Organization for Rare Disorders (NORD)

National Organization of Social Security Claimants Representatives

National Patient Advocacy Foundation

National Spasmodic Dysphonia Association

National Spasmodic Torticollis Association

National Tay-Sachs & Allied Diseases Assoc., Inc. (NTSAD)

National Women’s Law Center

New Mexico AIDS Services

New Mexico Medical Society

New Mexico POZ Coalition

New Mexico Public Health Association

North American Brain Tumor Coalition

Neurofibromatosis, Inc.

Paralyzed Veterans of America

Power Mobility Coalition

Reflex Sympathetic Dystrophy Syndrome Association of America

Senior Citizens Law Office, New Mexico

Small Business for America

Southern New Hampshire HIV/AIDS Task Force

Special Olympics

The Title II Community AIDS National Network

United Cerebral Palsy

United Spinal Association

Utah AIDS Foundation

Visiting Nurse Associations of America

Von Hippel-Lindau Family Alliance

Wilson’s Disease Association

Copyright © Center for Medicare Advocacy, Inc. 05/05/2008