|People with disabilities are getting the short end
of the stick from Medicare, and because Medicare often sets the standard
coverage, that means we’re getting the short
end of the stick from
many private health plans as well. This
is happening in many ways,
far too many to discuss exhaustively today,
but I hope to touch on
some key points that will help you to better
meet the needs of
Medicare beneficiaries with disabilities, especially
those under 65.
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
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
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
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
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
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
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:
NOTE: It doesn’t say only if needed in the
The term “durable medical equipment”
includes iron lungs, oxygen tents, hospital beds and wheelchairs . . . used
in the patient’s home. 
Here’s what official HCFA regulations defining
NOTE: This doesn’t require that the
equipment must be needed for use in the home but only that
the equipment be “appropriate” for such use.
Durable medical equipment means equipment,
furnished by a supplier or a home health agency, that
can withstand repeated
is primarily and customarily used to serve a medical
generally is not useful to an individual in the
absence of an illness or injury;
and is appropriate for use in the home.
Nevertheless, after citing this definition,
Medicare’s DME Reference List goes on to say that
covered if patient’s condition
is such that without the use of a wheelchair he/she would otherwise be bed
or chair confined.
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
Here are some of the quality measures I would
- Accessibility of facilities, information, marketing,
grievance procedures, etc.
- Approval/denial rates and delay times for specialty
- 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
- 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
the absence of a level competitive playing field, the bad plans will drive
the good plans out of business (or force the good plans to become bad plans
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
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
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:
I want to leave you with a story that has made a deep impression
on me. Although this case involved Medi-Cal, not Medicare, there is
an important lesson here for Medicare, too, especially since some of your
clients will be on both programs.
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.
- “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
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
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.
 Just to assure readers
that I'm not trying to pull a fast one by omitting important material
from the definition above, here's the complete text of the relevant part of
Medicare's DME definition:
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
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