First, it’s important to understand that quality of care has a
different meaning for people with disabilities, especially since the
Americans with Disabilities Act was signed into law in 1990. 
Increasingly, people with disabilities want and expect to participate
in the world around them, not be bundled off to some nursing home
and turned into the proverbial “invalid.”  Laws like the ADA say we
have that right, but far too often, Medicare policies and practices
fail to help or, even worse, work against us.

The fact is that the health-care system often is the gateway to our civil rights.  For example, accessible  buildings don’t do you much good if you need a wheelchair or scooter to get around in the community, can’t afford to buy one, and have no health coverage for one.  For all intents and purposes, you become a prisoner in your home. 

People with disabilities are subject to all of the same health-quality
problems and dangers that affect everybody else, of course, but we
have many additional issues to deal with.  One of the most obvious
is physical access.  People with disabilities can’t get health services
of any kind,  good or bad, if they can’t get into the building or into
the doctor’s office or onto examining tables.  It’s very common for
women who use a wheelchair full time to find that they can’t get
mammograms because the machine at their doctor’s office isn’t
accessible.   But it’s taken a lawsuit to start waking health plans up
to the fact that they’re violating the rights of people with disabilities
when they fail to provide accessible mammography services.  It’s
unreasonable to expect Medicare beneficiaries with disabilities to go
to court in order to access services to which the law already says
they are entitled.  But I see little if any evidence that Medicare is
doing anything to assure that contractors are providing accessible
services. 

And although linguistic and cultural sensitivity increasingly is getting attention from health-care policy makers, relatively few seem to recognize that the same kind of concerns require providing information in alternative formats, providing interpreters for deaf patients who use American Sign Language, and understanding how people with disabilities really live their lives.  Preventive care often is ignored for people with disabilities, at least in part because those in charge of the programs see us as already “sick.”  (By the way, though some individuals with disabilities also have illnesses and really are “sick,” many in the disability community strongly resent automatically being characterized as sick, defective, flawed or somehow needing repair.  Many of us who have lived with disability for a number of years accept ourselves as we are.  We would like such acceptance from others, including the medical community. What we need from the health-care system is help in staying
independent and productive.)

To sum it up, we need a new perspective on the concepts of  “medical necessity” and quality measurement.  Instead of focusing almost entirely on biological function, we need to acknowledge that the goal of high-quality health care is maximizing the patient’s functional capability and independence.  If a “cure” or some other biological approach is appropriate for a particular person, fine.  If someone else is more likely to be helped by durable medical equipment or other assistive technology that improves his or her functional level, that too should be fine. 

In all cases, the patient should have a significant role in deciding which treatment alternative is selected, since it’s the patient who will have to live with the results.  (For patients with cognitive problems that would prevent them from making an informed decision, an advocate for the patient should be involved.) In addition to reasons related to disability rights and patient rights, there is a good quality-of-care argument for this: Research indicates that “empowered” patients generally have better health outcomes.

Sadly, Medicare and the rest of the health-care system haven’t gotten the message.

One major underlying reason for many of the problems faced by people with disabilities in the health-care system is that for the most part, policies are designed and carried out by non-disabled people with little if any input from the real experts—those who live with disability every day. 

Furthermore, policy-makers and administrators tend to act based on their own deep-seated stereotypes, fears and prejudices about the quality of life with a disability and about the capabilities of people with disabilities.  (In one study comparing attitudes of physicians with those of people with disabilities, a group of individuals with quadriplegia gave the quality of their lives a much higher rating than did the doctors.)

Nowhere is the disconnect between health policy and reality more obvious than in Medicare’s absurd standard for coverage of durable
medical equipment like wheelchairs.  Although neither Medicare statutory language nor official federal regulations defining durable medical equipment mandate it, Medicare’s DME Reference List makes it nearly impossible for many people who have an excellent chance of achieving or maintaining independence to get the wheelchairs or other equipment they need to reach that goal. 

Fortunately, the Reference List guideline isn’t always followed to the
letter, but given financial pressures like those that have driven many
HMOs out of Medicare, it may become more and more difficult to work around the de facto rule that DME needed for use in the community isn’t covered.

Frankly, I’m amazed.  How did we get to this point?  Here’s what
Medicare law says:

Here’s what official HCFA regulations defining durable medical
equipment say:
 

Nevertheless, after citing this definition,  Medicare’s DME Reference List goes on to say that 
 

To me, that seems like quite a leap from what the Medicare statutory language and HCFA definitions say!  The law and the definitions leave room for a more modern understanding of what it means to live with a disability.  For example, if I were a Medicare beneficiary, the law and definitions would allow for coverage of a scooter like mine, which makes it possible for me to do things like shop, work part time, take classes, go to the theater —in other words, to have a real life!  That’s not true of the current DME Reference guideline, which treats the need for a wheelchair as if disability were a matter of black or white.  Well, I can tell you absolutely that disability comes in many shades of gray, and it’s about time for Medicare to recognize that fact!

Medicare certainly isn’t unique in being what I call “disability-
insensitive.”  In fact, most health plans have benefit designs that fail to meet the needs of people with certain kinds of disabilities.  For example, most cut off physical therapy after a maximum of 60 days — sooner if no improvement is expected within 60 days.  I don’t know of any that pays for so-called “maintenance therapy.”  But without therapy, the functional level of people with some disabling conditions will continue to decline, sometimes complicating treatment for other health problems as well.

Finding high-quality health-care providers is another problem facing people with disabilities.  Most programs that monitor quality don’t even consider many of the issues most critical to people with disabilities.

Here are some of the quality measures I would like to
see included:

• Accessibility of facilities, information, marketing, grievance procedures, etc.
• Approval/denial rates and delay times for specialty referrals
• Approval/denial rates for DME and delay times
• Range of disability-sensitive services (e.g., assistive technology/ DME), limits on services, etc. (i.e., adequacy of  benefit design from disability perspective), willingness/ability to connect patients to non-medical social service supports in community.
• Range of qualified disability-related health-care providers available within a given plan or medical group
• Ease or difficulty of accessing those services and/or providers
• Voluntary disenrollment rates by people with disabilities and serious chronic illnesses, perhaps compared with the plan’s overall voluntary disenrollment rate

Now comes the Catch-22 of quality monitoring.  Information on quality of care for people with disabilities won’t help much if health-care consumers don’t have access to it.  That’s why the idea of health plan “report cards” has become popular among many health policy people and consumer advocates. 

The problem is that unless we level the playing field between and within health plans (i.e., between medical groups), the plans and groups that provide the best care for those with the greatest need will be punished financially because they will attract the highest-cost patients, while plans and groups that do the worst job will be rewarded because people with significant health-care needs will avoid them.  The result will be a downward spiral of care for all. 

Or, in the words of what I call 
 

This applies as much to Medicare HMOs as it does in the private sector. 

Medicare could make a significant contribution here by establishing — and enforcing — minimum quality standards that meet the needs of beneficiaries with disabilities and by developing and implementing a workable method of risk adjustment. 
 

I also want to draw your attention to a development in health care that I find particularly ominous for people with disabilities.  Some health policy experts (and many health-plan administrators) increasingly believe their responsibility is to look at health care primarily, if not exclusively, from a group or “patient population” perspective, rather than considering what’s best for individual patients. 

As a public policy analyst, I know we can’t do everything for everybody.  But I also know that turning health care into nothing more than a study in numbers and one-size-fits-all rules will have an impact not just on those individuals whose needs are sacrificed but also on society as a whole (as it did in Nazi Germany).  And that’s what makes this approach dangerous — especially for the most vulnerable people among us. 

Sometimes called “distributive medicine” or “distributive justice,” this concept has been embraced by former Colorado Gov. Richard Lamm, who has said publicly that the old and “sick” (presumably including the disabled) have a “duty to die.”  Lamm may have expressed this view more openly than others, but as the concept of “distributive medicine” continues to gain acceptance with hospital and health plan administrators, bioethicists and so-called “futile care” committees, I worry. We simply can’t afford to separate “health” from “care,” and I vehemently reject the notion that there is no other way to deal with the reality of limited resources.
 

You may be wondering, at this point, what all I’ve been saying has to do with your role as a HICAP manager or staff member.  After all, many of the biggest problems will require legislative or administrative policy changes.  Still, there are things you can do to help Mecicare beneficiaries with disabilities.

1 - First, make certain that your own HICAP facilities and services are accessible.  That applies not only to architectural barriers but also to communications barriers.  Be sure that your information is available in alternative formats, like Braille, audio- and videotape, etc.  If you’re meeting with a deaf client who uses ASL, be sure to get an interpreter.  And make sure that your office has a TDD/TTY phone line. 

According to official Medicare statistics, more than 5 million people with disabilities under age 65 were on Medicare in 1998, the last year for which I could find data.  That represented about 13% of total Medicare enrollment. Some of these individuals also have coverage through Medicaid — Medi-Cal here in California.  Because of low Medi-Cal reimbursement rates and changes in Medicare rates, however,  these so-called Medi-Medi patients often have trouble finding suppliers and service providers who will accept them.  HICAP counselors may need to find ways of getting the programs work together in the beneficiary’s best interest. 

 

HICAP staff also should be aware of how some policy issues affect Medicare beneficiaries with disabilities.  Although you’d never know it from the references to a Medicare prescription drug benefit at this month's national Democratic Party convention, many younger Medicare beneficiaries with disabilities also have problems paying for medicine. 

According to an August 2000 Health & Disability Policy Brief from the federally funded NRH Center for Health and Disability Research:

“Individuals with disabilities incur far higher health care expenditures than do those without disabilities, and about one-third of these expenditures are for prescription drugs. Yet, the disproportionately high needs of this population are often overlooked mainly because SSDI beneficiaries constitute only 13% of the nation’s 39 million Medicare beneficiaries.”

 

A related issue is that older Medicare beneficiaries usually have the option of purchasing Medicare supplemental insurance, also known as Medigap coverage.  Not so for working-age Medicare beneficiaries. 

 
Look what happened when big health  plans began to withdraw from the Medicare market.  The federal government quickly required companies that sell Medigap coverage to sell to displaced seniors regardless of pre-existing condition. But that requirement did not apply to younger Medicare beneficiaries who qualified because of disability. 

An effort by the California Legislature to address this inequity last year wound up being significantly weakened during the legislative process, and even then was vetoed by Gov. Davis.  This year, Sen. Jackie Speier’s SB 1814 is awaiting action in the Assembly Appropriations Committee.  Enactment of SB 1814 won’t completely resolve the problems created by withdrawal of the Medicare HMOs,  since many non-elderly Medicare beneficiaries won’t have the money to buy Medigap coverage anyway.  But at least it would represent some effort at even-handedness in the       treatment of younger Medicare beneficiaries.
 

2 - In trying to help Medicare beneficiaries with disabilities get the services they need, be creative.  Try to connect with other programs or agencies — whether medical or social services — that can help fill the gaps in Medicare benefits. 

Please be aware: Some, but not all, independent living centers can be helpful here.  But ILCs are not all the same. There are differences in how individual ILCs perceive their roles, and a lot may depend on the resources of and  demands placed on a particular center at a particular time. You already may be doing this sort of thing, but if not, I would suggest that you keep records of agencies or organizations to which you refer clients, and follow up with the client to find out whether services were provided.  That  way, you can build a database of which agencies really deliver, and for which services.  Sometimes a local ILC may be just what’s needed, but in other situations, referral to the ILC may just add to the client’s frustration.
 

3 - Individually and as a group, help advocate for change in Medicare’s DME coverage guidelines.  The current DME standard is at odds with the goals of recent federal policies to integrate people with disabilities into the mainstream, including efforts to help people with disabilities get off programs like SSDI and SSI and return to work without losing their health benefits.  Though I am not currently a Medicare beneficiary, I know that I wouldn’t qualify for wheelchair or scooter coverage under a strict interpretation of the guideline in the Medicare DME Reference List.  Yet without my scooter, I couldn’t be here with you today.  Just because I don’t need my scooter inside my familiar, relatively small and air-conditioned house doesn’t mean I don’t need it to go into the community, where MS fatigue and hot weather can aggravate my MS symptoms and temporarily increase my level of disability. 

It may be old news to some of you, but in preparing for this presentation, I discovered that there is a formal process for seeking changes in Medicare coverage decisions!  Among other things, this process involves a Medicare Coverage Advisory Committee, which includes a panel on durable medical equipment.  I urge HICAP to consider joining forces with me and with others in the disability community to call for broadening the DME standard (especially for wheelchairs). 

Bottom line: The DME standard should include coverage for items needed to maintain or enhance the beneficiary’s independence and autonomy, whether at home or in the community. 
 

4 - Regarding the balancing act between individuals and patient-population groups, just remember that a HICAP counselor’s job is to represent the client, not the entire Medicare program.  I urge you to resist efforts by others to justify denial of needed services based on the philosophy of  “distributive medicine” and to fight for your clients when necessary.  If that means  taking on health plans, Medicare administrators, HCFA or legislators, please bear in mind that this kind of advocacy is just as important for younger beneficiaries with disabilities as it is for senior citizens — maybe more so, since people with disabilities are liable to be among the first ones sacrificed in the purported interests of the “group.”
 

In 1998, 26-year-old Matt Johnson asked Jack Kevorkian to help him end his life.  Previously an active young man, Johnson had been seriously injured in an accident and was paralyzed from the neck down.  He also had been promised a wheelchair through his Medi-Cal HMO.  While he awaited the arrival of this critical equipment, he was virtually bedbound.  What must that have been like for someone who was used to racing motorcycles!  Day after day, week after week, month after month, he waited.  Finally, nine long months later, the wheelchair arrived — on the day after Johnson died. 

We can only speculate about whether having that wheelchair might have given Johnson the freedom and the will to start a new life, like many others who have been disabled by injury or illness.  But certainly, leaving him bedridden without a wheelchair couldn’t have made life seem any more appealing. 

Although Johnson most certainly would have qualified for Medicare wheelchair coverage, even under the current guideline, he would have had to be on SSDI for two years before he could qualify for Medicare coverage in the first place. 

Furthermore, being confined at home for lack of appropriate DME can be just as  devastating to those whose disabilities aren’t as severe as Johnson's.  People with disabilities commit suicide for the same reasons as non-disabled people — primarily, feelings of isolation and hopelessness.  Those are exactly the conditions likely to result from lack of DME items like wheelchairs and scooters that people with disabilities need in order to stay involved and connected within their communities. 

The point is, lack of appropriate DME isn’t just an inconvenience.  It can be a serious medical risk — and not just because of possible suicide. The absence of appropriate equipment can lead to secondary or tertiary disability, to problems complying with treatment regimens for health conditions not directly related to the disability, and more. 

Medicare policy on DME makes about as much sense as an automobile service plan that will pay for repairing or replacing a flat tire only if you need the tire in order to store the car in your garage! 

From a medical, social and human rights standpoint, Medicare’s DME  policy is wrong!  It writes off people with a potentially bright future and relegates many of them to a life of isolation and despair.  I very much hope that in addition to working on behalf of individual HICAP clients with disabilities, you will help me advocate for change in Medicare’s DME rules and, more generally, for equitable treatment of non-elderly Medicare beneficiaries.
 

 * Presented by the California Dept. of Aging and the Health Insurance Counseling and Advocacy Program (HICAP), the HICAP Annual Training Conference was held Aug. 22-24, 2000, in Oakland,CA. HICAP provides assistance to Medicare beneficiaries.

The term "durable medical equipment" includes iron lungs, oxygen tents, hospital beds, and wheelchairs (which may include a power-operated vehicle that may be appropriately used as a wheelchair, but only where the use of such a vehicle is determined to be necessary on the basis of the individual's medical and physical condition and the vehicle meets such safety requirements as the Secretary may prescribe) used in the patient's home. . . .

As you can see, the omitted parenthetical definition of a "power-operated vehicle" (Medicare's term for a scooter) makes the main point of the sentence harder to read, but it doesn't change anything regarding the point I am making — the fact the this definition does not limit Medicare DME coverage for wheelchairs and scooters only to situations where the equipment is needed for use in the home.

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