| July 28, 2000
Office of Regulations
Re: Regulation R-5-99E
Dept. of Health Services,
714 P Street, Room 1000
PO Box 942732
Sacramento, CA 94234-7320
To Whom It May Concern:
On behalf of the California chapters of the National Multiple
Sclerosis Society, I am writing to express our concern about Regulations
Package R-5-99E, which despite the limited description in the subject line,
appears to make some very significant changes in Medi-Cal coverage criteria
and procedures for durable medical equipment (DME) and oxygen equipment
and supplies, in addition to antidecubitus care support services.
The proposed changes ostensibly are intended to provide
more consistency in Medi-Cal coverage decisions, but they do much more.
They create an environment in which people who need equipment covered under
this regulation will find it more difficult, if not impossible, to get
it in a timely manner.
Of particular concern is
the adoption of the Medicare standard for DME coverage. While we have no
quarrel with the language itself, we know that the requirement that equipment
be "appropriate for use in the patient's home" frequently is applied as
if the word "appropriate" were missing. The practical result often
has been that coverage is denied for a person who needs equipment to shop,
attend school, work or otherwise take part in community life but who doesn't
need the equipment in the smaller, more familiar confines of home--even
though the item may be useable (i.e., “appropriate”) in the home.
In effect, this kind of standard turns the home of a person
with a disability into a prison and prevents that individual from fully
integrating into the community. That violates the spirit, if not
the letter, of the U.S. Supreme Court's Olmstead decision, which held that
states must provide services to people with disabilities in the most integrated
community setting possible. Although the Olmstead decision was about
allowing Medicaid beneficiaries who are receiving institutional care to
instead receive the services they need in the community, we believe there
also is some relevance to the current regulatory package.
On January 14, 2000, officials of the Health Care Financing
Administration (HCFA) sent a letter to all state Medicaid directors concerning
the Olmstead decision. The letter read, in part:
"The recent Supreme Court decision in Olmstead
v. L. C., 119 S.Ct. 2176
(1999), provides an important legal framework for our
mutual efforts to
enable individuals with disabilities to live in the most
integrated setting
appropriate to their needs. The Court's decision clearly
challenges us to
develop more opportunities for individuals with disabilities
through more
accessible systems of cost-effective community-based
services.
"This decision confirms what this Administration already
believes: that no one should have to live in an institution or a nursing
home if they can live in the community with the right support. Our goal
is to integrate people with disabilities into the social mainstream, promote
equality of opportunity and maximize individual choice...."
In concluding, the letter states (in part):
"We recommend that States do the following:
"Develop a comprehensive, effectively working plan (or plans)
to strengthen community service systems and serve people with disabilities
in the most integrated setting appropriate to their needs;
"Actively involve people with disabilities, and where appropriate,
their family members or representatives, in design, development and implementation...."
The current Medicare standard for DME, as it usually is applied,
works against the goal of integrating people with disabilities into
the mainstream and could, in many cases, lead to isolation that is the
equivalent of unnecessary institutionalization.
We make this point not as a legal argument but rather
as an important reminder of what the Medi-Cal program means for recipients
with disabilities and of the critically important role it can play in supporting
or undermining the independence of those individuals.
The Olmstead decision isn't the only policy at odds with
the current Medicare DME standard. Recent federal (Work Incentives
Improvement Act) and state (AB 155/Migden, 1999) have taken steps to make
it easier for people with disabilities who are receiving Medi-Cal services
to accept employment and still retain their Medi-Cal health coverage.
One reason this is so important is that through Medi-Cal, recipients can
obtain the services, items and equipment they need to function in the community.
Based on the typical interpretation of the Medicare standard, however,
Medi-Cal could refuse to cover a powered wheelchair or scooter that a beneficiary
needs in order to accept a job on the grounds that the powered chair may
not be needed at home.
In short, we believe that unless these regulations are
modified to state very clearly that "appropriate for use in the patient's
home" does not preclude coverage for items needed in the
community, they will result in inappropriate denial of DME for beneficiaries
who should be receiving it.
Regarding another part of the proposed definition of durable
medical equipment, we suggest that subparagraph (c) be amended to add the
words "functional impairment," as follows:
"(c) Is not useful to an individual in
the absence of an illness, injury, functional impairment or congenital
anomaly."
The purpose of this change is to focus on the need for the
equipment (functional limitation) rather than on the cause of the condition
that is responsible for that need.
In addition to our dismay over incorporating the Medicare
definition of durable medical equipment into this regulations package,
we also must express our concern about the new requirements for Treatment
Authorization Requests (TARs). Even under current regulations, it
is often difficult to get physicians and/or equipment suppliers to deal
with Medi-Cal patients. Though the goal here may be consistency,
accountability and a desire to prevent fraud (laudable goals that we certainly
can support), the additional burden these regulations place on legitimate
suppliers is liable to drive some of them out of the Medi-Cal market, if
not out of business. Despite the standard statement on fiscal impact that
claims no fiscal impact on
"private persons or businesses directly affected," the
"Statements of Determinations" page of the R-5-99E package clearly acknowledges
that these regulations will affect small businesses. For Medi-Cal
beneficiaries, that's likely to mean more difficulty
getting needed equipment even when Medi-Cal is willing to pay for it.
And in some cases, delays can be deadly. Consider
what happened to Matt Johnson. A report by the Santa Cruz County Commission
on Disabilities summarized the case as follows:
"In May of 1998, the local newspaper ran an article
about the delivery of a power wheelchair to a Santa Cruz resident who was
a Medi-Cal recipient. The delivery of the power chair was newsworthy
because it was delivered nine months after the prescription had been sent
to SCCHO [Santa Cruz County Health Options] for the chair, and because
it was delivered one day after Matt Johnson had committed suicide."
The Johnson case involved Medi-Cal managed care, but the
result of the delay is a cautionary tale that should be heeded by the Department
of Health Services and Medi-Cal on behalf of all recipients. To the
extent that these new regulations further reduce the already-limited number
of providers who are willing to serve Medi-Cal beneficiaries and/or extend
the time required to get TARs approved for DME, they could contribute to
more cases like Johnson's, as well as to avoidable institutionalization
(resulting in higher costs to Medi-Cal).
Finally, we note that the proposed regulations would specifically
exclude Medi-Cal coverage for stair lifts. The state should recognize
that if a home is not accessible, (1) it often is harder to recruit and
retain home-care workers for people with severe disabilities, and (2) in
the absence of available in-home help, institutionalization may be the
only remaining living option. Once again, the result is liable to
be higher costs
to the state--and a conflict with state and federal policies
aimed at helping people with disabilities to remain as independent as possible.
By definition, Medi-Cal beneficiaries have low incomes and few financial
resources. If Medi-Cal won't pay for equipment like a stair lift,
the lift is unlikely to be installed, and Medi-Cal recipients don't have
the resources to remodel their homes if structural changes are needed to
assure access to all necessities (e.g., food, water, sanitary facilities)
on one floor. In some cases, the absence of a stair lift may even
mean that there is no safe entrance or exit from the building. All of this
could pose serious health and safety problems.
For all of the above reasons, we urge you to reconsider
these regulations and, instead, work with equipment suppliers and the disability
community to develop regulations that will provide consistency without
harming program recipients.
Thank you for your consideration.
Sincerely,
Laura Remson Mitchell
Government Issues Coordinator
Multiple Sclerosis California Action Network
National Multiple Sclerosis Society |
