NCD Releases Report on Health Care and People with Disabilities
Mark Quigley of the
National Council on Disability shares the
following NCD press release about its report
released on July 26, 2002.
The National Council on
Disability released its 2001 annual National
Disability Policy: A Progress Report, on
July 26, 2002. The report addresses several
important issues related to people with disabilities. This
feature highlights issues related to
health care for people with disabilities,
including barriers to adequate health care
and the status of issues designed to advance
access and equity in the nation's health care
systems.
The report points out that
as Congress continues its work on a number of
issues related to the costs and
availability of health insurance and health
care "Americans with disabilities face a number of distinct barriers
in obtaining, maintaining, and using
health insurance and in accessing and using
health care services. At the same time,
Americans with disabilities also confront
the barriers, problems, and frustrations with which most
Americans routinely struggle in the insurance and health care
systems." The report identifies six health
related issues of particular significance
to individuals with disabilities and makes a number of
recommendations to remove barriers
and create equity in our nation's health care system.
Patients' Bill of Rights
As Congress continues to
grapple with the Patients' Bill of Rights
legislation, the NCD report reminds
lawmakers that the legislation must apply to
all health plans as well as all privately insured persons,
including individuals with
disabilities. The report points out that if
individuals with disabilities are denied access to
affordable health insurance, the
costs of their care will fall on the public sector. The law
must establish a system of open
referrals to specialists to accommodate the
need for regular and predictable specialty care
often required by individuals with
disabilities. The Act should contain requirements for
effective communication with
purchasers, beneficiaries, and practitioners,
including provisions for written materials in
accessible formats, sign language
interpreters, and assistive listening technology. Should the Act
provide for access to clinical
trials, it must include instructions to the
researchers to develop procedures for registering
such non-pharmaceutical trials.
To determine strategies for
encouraging a broader standard for medical
necessity, NCD recommends the following two
parallel research projects to be included in
the Act: (1) a five-year demonstration project
aimed at assessing the costs and
benefits associated with assistive technology
devices; and, (2) an examination of
how medical necessity decisions are made and
how functional considerations might be
included in these decisions.
Mental Health Parity
NCD not only recommends the
elimination of the discrepancy between
treatment of health care coverage for
individuals with physical and mental
diseases, the report also emphasizes the fact that the distinction
between the two is "increasingly
called into question", given the increased
recognition of the interconnection between
mental, emotional, and underlying somatic
factors. Parity for mental health treatment in the nation's
health care system must be
established in the Patients' Bill of Rights or separate
legislation.
America's Law Enforcement and Mental Health Project
Public Law 106-515
authorized the attorney general to make grants to state
and local governments to establish
demonstration programs addressing issues
relevant to non- violent offenders with mental illness,
mental retardation, and substance
abuse. These programs would include specialized training of
law enforcement and judicial
personnel, voluntary outpatient or inpatient
treatment, case management, treatment plans,
and service coordination. NCD recommends
that the Department of Justice issue an
overview and update on the implementation
and early results of this program, including coordination
between the criminal justice and mental health systems.
Pain Relief Promotion v. Assisted Suicide
The report emphasizes that
responsible and compassionate pain relief should
be the right of all people, but
provisions to guarantee this right must be
implemented in a manner that protects people with disabilities,
who may be more vulnerable than
others to the risks and dangers of assisted suicide.
Appropriately regulated alternative
pain management therapies, including
medications-controlled or non-controlled,
biofeedback, acupuncture, support groups,
visualizations, etc. constitute a humane and essential component
of medical care. NCD recommends the
creation of a national commission of leading
experts in the fields of law, medicine and
bioethics, along with representatives from
the disability community, to develop a
framework for legislative solutions to this
thorny issue.
Medicare
The current Medicare system
includes a large number of rules and regulations
that are potentially outmoded and far
too limiting in their range of reimbursable
services for individuals with disabilities. Thorough
examination of this program with an eye towards identifying and
removing unnecessary barriers is badly
needed. NCD recommends that CMS convene a
panel of experts, health care practitioners, and beneficiaries,
including individuals with
disabilities who are SSDI and Medicare beneficiaries. The
panel would review existing policies,
including national and regional coverage
decisions, regulations, manuals and all other
sources of administrative limitations
on coverage and recommend changes to eliminate
any undue and arbitrary limitations
on coverage for individuals with
disabilities.
Telemedicine
For many people with
disabilities who do not travel with ease, telemedicine
is a particularly appealing solution
to their inability to access essential
health care. Few, if any, reimbursement systems or funding
streams have undertaken a
comprehensive assessment of changes that will be necessary in
order to make telemedicine work in
their system. NCD recommends that Congress
hold hearings on the changes to the
insurance system, particularly to Medicare
and Medicaid, that would be required to make telemedicine work,
as well as on accessible design requirements needed to ensure
that technology of telemedicine can be
effectively utilized.
* NCD continues to advise
lawmakers on issues of importance to individuals
with disabilities on health related
legislation under active consideration in
the 107th Congress-Patients' Bill of Rights and Mental Health Parity.
* To more thoroughly
understand the utilization issues for individuals with
disabilities in Medicare, NCD will
conduct this year an in-depth study of the
system, with accompanying recommendations for legislative
and/or regulatory changes to ease the
barriers that currently exist.
* For a number of years,
NCD has recognized the harmful effects of
discrimination based on individuals' genetic
information and supported the need for
federal legislation prohibiting genetic discrimination as well
as the enforcement of existing
legislation that may prohibit certain types of
genetic discrimination. In March
2002, NCD issued a Position Paper on Genetic
Discrimination Legislation and Principles for Genetic
Discrimination Legislation, which are
being used as advisory tools for lawmakers with an
interest in this issue.
* NCD is currently
conducting an inquiry into effective systems of community
supports, including health care, for
American Indian and Alaskan Native tribal
members with disabilities. From that inquiry, NCD will develop
recommendations for sovereign tribal governments.
For more information,
contact Mark Quigley at 202-272-2004.
Source: National Disability
Policy: A Progress Report, December
2000-December 2001
www.ncd.gov/newsroom/publications/progressreport_07-26-02.html