News Release

NCD #03-425
July 30, 2003
Contact: Mark S. Quigley
202-272-2004
202-272-2074 TTY
mquigley@ncd.gov

National Council on Disability Speaks Out on Health Care for People with Disabilities

WASHINGTON-The National Council on Disability (NCD) today released an excerpt from its annual report, National Disability Policy: A Progress Report (http://www.ncd.gov/newsroom/publications/progressreport_final.html), which highlights a number of issues related to health care for individuals 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 also makes a number of recommendations to remove barriers and create equity in our nation's health care system.

"It is essential that the existing reactive system of healthcare be transformed into a proactive system of health and wellness for people with disabilities. Health and disability are not mutually exclusive. People with disabilities can be healthy and avoid many secondary conditions with better access to appropriate preventative and medical treatments, medications and assistive technologies," said Carol Novak, NCD member.

Patients' Bill of Rights - As Congress continues to grapple with the Patients' Bill of Rights legislation, NCD's 2001 report references the following list of disability specific issues that must be included in the Patients' Bill of Rights:
* Prohibition on the denial of coverage based on disability;
* Access to specialized care for individuals with disabilities, including the right to consult a specialist of one's own choosing as a point of service option:
* Period of transition of at least 90 days, or longer, during a network change, allowing for established providers to be treated as members of the new network until an alternative provider can be located;
* A system of open referrals to specialists to accommodate the need for regular and predictable specialty care often required by individuals with disabilities:
* Requirements for effective communication with purchasers, beneficiaries, and practitioners, including provisions for written materials in accessible formats, sign language interpreters, and assistive listening technology:
* Instructions to the researchers in any clinical trials authorized in the Patients' Bill of Rights to develop procedures for registering non-pharmaceutical trials such as testing of safety and efficacy of AT and community-based interventions;
* Mental health parity; and
* Pilot research and demonstration projects on standards determining medical necessity and evaluation for proposed interventions.

Medicaid - The fiscal crises facing most states threaten Medicaid cuts that could result in a terrible meltdown in the quality of life and the safety and health of many people with disabilities. NCD recommends that Congress urgently and immediately hold hearings to examine the impact of state Medicaid cuts on the lives of people with disabilities, including hearings that assess the number of people likely to be forced into institutions as a result of these cuts and the costs to the program of such institutionalization. Congress should act to prevent this needless tragedy.

Pain Relief Promotion v. Assisted Suicide - In the past two annual reports, NCD has addressed pain relief and assisted suicide, and the report for 2002 says this issue remains unresolved, pointing out that "a national framework guaranteeing compassion pain relief to those who suffer has yet to be developed." To protect people with disabilities, who may be more vulnerable than others to the risks and dangers of assisted suicide, NCD renews its recommendation for the creation of a national commission of leading experts in the fields of law, medicine and bioethics, along with representatives of the disability community, to comprehensively assess the medical, legal and ethical issues as well as the support services and other complex issues to develop a framework for a national policy that ensures life with dignity for people with disabilities.

FDA Approval of Medical Equipment - In compliance with legislation adopted in 2002 by Congress, reforming the medical device approval process of the Food and Drug Administration (FDA), medical device manufacturers will now pay fees to the FDA to defray the costs of expediting device review. Because of concern that many of the companies that produce durable medical equipment (DME) and other assistive technology (AT) devices may be smaller or newer companies, NCD questions whether devices developed by companies that are not able to contribute to the new fund will still be eligible for review. To address this concern NCD recommends an evaluation of all medical device review procedures in terms of their impact on DME and other AT devices used by persons with disabilities. NCD further recommends that Centers for Medicare and Medicaid Services (CMS) and FDA review the legal issues surrounding the assessment and eligibility for insurance coverage of AT that may not fall within the jurisdiction of the FDA as medical appliances or devices but that is nevertheless evaluated under medical-device standards by health insurers or other third-party payors.

Consumer Directed Health Care Services - Recognizing and supporting the growing awareness of the need for consumer involvement in the selection of their health care services, NCD has issued a request for proposals for research on models of consumer driven health care. The NCD report also commends CMS for establishing open-door forums for public discussion of Medicaid issues; for the Independence Plus Medicaid waiver programs; and, for releasing significant comparative information on the quality of care in nursing home environments. NCD recommends that the administration reconsider its position on consumer directed projects, for which it requested a deletion in its FY 2003 budget proposal.

Medicare - It is important in the prescription drug coverage debates that people with disabilities be recognized as Medicare recipients. Many people over the age of 65 have disabilities, but Medicare also includes persons under 65 who are eligible for Social Security Disability Insurance (SSDI) as well as persons participating in several return-to-work programs. In light of the unfortunate precedent set in several states which have adopted senior citizen prescription drug programs, omitting or excluding recipients under 65, NCD recommends that Congress include a statement of findings in the prescription drug legislation with detailed demographic information on the number of people with disabilities included in the age, beneficiary or other categories of people covered by the new law, and the number likely to be included as time goes on. To ensure inclusive prescription drug coverage, the NCD report also suggests the legislation include the following provisions:

* Drug formulary that includes drugs needed by persons with low-incidence conditions;
* Requirements that complete information about the program and any options be fully accessible to beneficiaries with disabilities (including usage instructions, warning labels and package inserts);
* Requirements for effective communication (including sign language interpreters) for all informed consent forms or face-to-face discussions;
* Assurances that recipients with Medicaid subsidized Medicare Part B premiums will be covered in new premiums associated with the prescription program;
* Assurances that states will not use access to the new program as grounds for withholding pharmaceutical benefits under state Medicaid or related programs for those dually eligible for Medicare and Medicaid;
* Guarantees that if certain pharmacies are designated to handle drug dispensation, they are held to standards of accessibility or if not accessible will provide auxiliary aids and services to allow persons with disabilities to fully avail themselves of covered services;
* Provisions addressing economic disparities among Medicare recipients and protecting individuals with disabilities from economic eligibility standards that might be problematic for those with lower than average incomes; and
* If the new law establishes the use of managed care or other private health insurance companies as providers of prescription drug coverage, assurances that individuals with disabilities who might decline an insurance plan because it does not provide coverage that meets all of their disability related health care needs will still have access to prescription drug benefits.

The current Medicare system includes a large number of rules and regulations that are potentially outmoded and far too limiting in the range of reimbursable services for goods and services that are particularly important to individuals with disabilities. In the 2001 annual report, NCD recommended a thorough examination of this program with an eye towards identifying and removing unnecessary barriers. NCD restates this recommendation, adding that if CMS is not in the position to undertake a comprehensive review, Congress should get involved and take actions to make the appeals process more accessible and responsive to beneficiary concerns. Further, Congress should consider means by which Medicare beneficiaries who cannot afford to front the costs of needed technology or services without assurance of reimbursement can obtain advance determination of coverage and the right to an expedited appeal.

Mental Health - In this report NCD commends President Bush and the Administration for establishing the New Freedom Commission on Mental Health, but points out the difficulty of the Commission's task, especially the challenges in addressing thorny issues such as interagency and interdepartmental coordination that is required to implement the Olmstead mandate. NCD reports that it has communicated with the New Freedom Commission and pledges its continued efforts and resources to assist the commission in its vital work.

Mental Health: Parity in Health Insurance - NCD has called for an end to sharp distinctions between physical and mental illness in the availability and amount of health insurance offered to groups and individuals. This need for parity was reinforced by the General Accounting Office (GAO) study, Access to Health Insurance for Applicants with Mental Disorders, which reported that health insurance carriers would likely decline applicants with mental disorders 52 percent of the time. To address this issue and to ease the economic fears of the insurance industry about such parity, NCD repeats a recommendation from last year for research studies designed to determine the costs of parity for the insurance industry, as well as subscribers and purchasers of health insurance. Additionally, NCD notes that more than an increase in insurance coverage for mental health will be necessary to solve problems disclosed by NCD in a 2002 report on mental health issues, The Well Being of Our Nation: An Intergenerational Vision of Effective Mental Health Systems and Supports (http://www.ncd.gov/newsroom/publications/mentalhealth.html). To the degree that those problems involve institutions and service systems outside the scope of any health insurance, they will continue to require broad public health approaches and solutions that utilize insurance, not as a solution, but as a partner in the overall effort.

Mental Health: 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, including specialized training of law enforcement and judicial personnel, voluntary outpatient or inpatient treatment, case management, treatment plans, and service coordination. NCD reiterates a recommendation from last year's report that the Department of Justice issue an overview and update on the implementation and early results of this program, including coordination and effective interplay between the criminal justice and mental health systems. Additionally, at a time when rising prison populations are being scrutinized in states facing budget crises, measures that combine the protection of society with the more appropriate treatment of offenders are increasingly worthy of exploration and development. This is especially true for individuals with disabilities whose imprisonment is likely to accomplish little by way of meaningful punishment. NCD points out that such programs as the mental health courts should work to reduce the costs of incarceration, protect society from crime, and contribute to a substantial number of people being returned to full participation in society.