News Feature

NCD #02-376
August 7, 2002
Contact: Mark S. Quigley
202-272-2004
202-272-2074 TTY
mquigley@ncd.gov

National Council on Disability Feature: Health Care and People with Disabilities

WASHINGTON-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.

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Source: National Disability Policy: A Progress Report, December 2000-December 2001 http://www.ncd.gov/newsroom/publications/progressreport_07-26-02.html