Position Paper on Patients’ Bill of Rights Legislation 

March 30, 2001 

National Council on Disability 

1331 F Street, NW, Suite 1050 

Washington, DC 20004-1107 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

Introduction

The National Council on Disability (“NCD”) is an independent federal agency that 

advises the President and Congress on issues affecting 54 million Americans with mental and 

physical disabilities. NCD's overall purpose is to promote policies, programs, practices, and 

procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the 

nature or severity of the disability; and to empower individuals with disabilities to achieve 

economic self-sufficiency, independent living, inclusion, and integration into all aspects of 

society. 

NCD has been engaged in the issue of improving access to and the quality of health care 

for people with disabilities for many years. NCD has prepared several reports in the past that 

address these important issues. These reports include: 

• Sharing the Risk and Ensuring Independence: A Disability Perspective on Access 

to Health Insurance and Health-Related Services. March 4, 1993. This report 

identifies the major issues of access to health insurance and health-related services for 

people with disabilities.

• Making Health Care Reform Work for Americans with Disabilities. July 26, 1994. 

This report summarizes the identified health care priorities of over 130 witnesses and 

hundreds of participants in five “town meetings” held by NCD during March and 

April of 1994.

• Achieving Independence: The Challenge for the 21st Century. July 26, 1996.

Achieving Independence is the follow-up report to NCD’s 1986 report Toward 

Independence. It offers an assessment of the nation’s progress in achieving equal 

opportunity and empowerment for people with disabilities in the last decade.

• From Privilege to Rights: People Labeled with Psychiatric Disabilities Speak for 

Themselves. January 20, 2000. In this report, NCD develops 10 core 

recommendations for improving the care of people with psychiatric disabilities.
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• National Disability Policy: A Progress Report. May 15, 2000. This report is a series 

of public policy recommendations designed to advance the inclusion, empowerment, 

and independence of people with disabilities.

 

As part of its health care agenda, NCD has long supported the enactment of a 

comprehensive and enforceable patients’ bill of rights. As far back as 1996, NCD argued that 

“all managed care plans, including those that service only privately insured persons, should be 

required to meet federal standards to ensure access to specialty care, adequate grievance and 

appeals procedures...and equitable utilization review criteria.” Achieving Independence (July 

1996). People with disabilities and chronic illnesses are often high users of health care services 

and devices and, as such, are a litmus test for assessing the effectiveness of patient rights 

legislation. In other words, if a patient's bill of rights protects people with disabilities, it is bound 

to adequately protect the rights of all health care consumers. 

NCD has identified the aspects of a patients’ bill of rights that are most important to 

people with disabilities and chronic illnesses. NCD does not endorse any specific legislation. 

Rather, NCD supports any approach that meets the principles that are identified and described in 

this document. It is our hope that members of Congress and their staff, other federal and state 

policymakers, and people with disabilities view this position paper as a valuable tool as Congress 

continues to debate this important issue. 

NCD Managed Care Reform Principles

Scope of Application of the Law

People with disabilities and chronic conditions have historically faced major hurdles in 

obtaining and maintaining private health insurance. However, NCD’s 1993 report Sharing the 

Risk and Ensuring Independence: A Disability Perspective on Access to Health Insurance and 

Health-Related Services, found that while private health insurance is difficult to obtain and keep 

for many in the disability community, particularly in the individual insurance market, it is still 

the major source of coverage for people with disabilities. 

A patients’ bill of rights, therefore, should cover all 161 million individuals with private 

health insurance in order to ensure that its protections apply to all people with disabilities. 

Application of the patients’ bill of rights to all privately insured persons will have the added 

benefit of establishing a uniform set of protections on which all privately insured Americans can 

rely, regardless of their employer or the state laws in which they reside. This includes the 48 

million Americans who receive group health coverage from their employers who self-insure as 

well as the additional 113 million Americans whose group or individual health coverage is 

subject to state law. 

Timely Access to Specialty Care 

The health care needs of people with disabilities and chronic conditions are best met 

when the focus is on maintenance of function, rather than on acute or post-episodic care. People 

with disabilities often require ongoing access to specialist physicians, specialty facilities, and 
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other specialty health care providers to maintain the functional ability required to be 

independent, participating members of society. In addition, the debilitating impact of many 

primary and secondary disabilities could be reduced or even avoided if specialty services and 

supports were available to people with disabilities on a routine basis. 

NCD recognized in its 1996 report Achieving Independence: The Challenge for the 21st

Century the importance of federal standards to ensure access to specialty care for people with 

disabilities in managed care health plans. In fact, improving access to specialty care is the 

highest priority for the disability community in the patients’ bill of rights. NCD reiterates its 

belief that all patients, especially individuals with disabilities, should have timely access to 

specialized medical services if they need them. Health plans should ensure that the specialist is 

appropriate to the specific condition of the patient. If an appropriate specialist is not available 

within a plan’s network of providers, the plan should be required to refer the patient to an 

appropriate specialist outside the provider network for no additional cost to the patient. 

Point-of-Service Option: 

 

NCD’s 1994 report Making Health Care Reform Work for Americans with Disabilities

detailed the challenge people with disabilities face when seeking appropriate medical care. 

Many adults with disabilities and parents of children with disabilities have testified that it takes 

them years to locate medical professionals who are competent in treating a particular disability. 

Any “closed panel” managed care plan should be required to offer a “point-of service option” to 

all enrollees, thereby permitting a person with a disability or chronic condition to access the 

patient’s specialist of choice with reasonable cost sharing. The availability of a point-of-service 

option is especially important to people with disabilities and chronic illnesses, since the 

specialized medical care they require is often not available within the existing network of a 

plan’s providers. 

Continuity of Care:

All health plans should be required to ensure the continuity of care for patients with 

ongoing, chronic conditions. This can be achieved by permitting an enrollee to continue to visit 

his or her network of providers for a reasonable period of time after a health plan discontinues 

operations in a particular geographic region or disrupts its provider network in other ways. In 

order to minimize the impact of these disruptions, consumers should have a right to an 

appropriate transitional period (such as 90 days) from the date of a provider’s termination from a 

network plan, except in cases where a provider is placing patients in harm’s way through poor 

quality care. This transitional period should be further extended for enrollees with terminal 

illnesses, pregnancies, or those who are receiving institutional or inpatient care, through death, 

birth and discharge respectively. 

Standing Referrals: 

Finally, consumers with complex or chronic conditions who require frequent specialty 

care should have the right to “standing referrals” without having to continually return to their 

primary care physician to secure approval. Standing referrals can be made as part of a treatment 
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plan developed by the specialist, primary care provider and patient, and approved by the health 

plan. Timely, and in some cases, direct access to specialty care will help foster higher quality, 

more efficient, and cost-effective health care of people with disabilities and chronic conditions. 

Timely and Accurate Comparative Information:

 In a market-based health care system, reliable and useful information is critical to 

effective decision-making. NCD strongly believes that all health care consumers, particularly 

people with disabilities, must have access to accurate, easily understood information to assist 

them in making informed decisions about their health plans, professionals, and facilities. All 

consumer-directed information should be available in alternative formats that meet the 

accessibility and communication needs of people with disabilities so that they are able to fully 

participate in this decision-making process. Health plans and providers should be required to 

disclose whether their facilities and operations are in compliance with the Americans with 

Disabilities Act (ADA) of 1990. 

Health plans and providers should be required to provide certain information upon 

enrollment and additional information upon request of the plan enrollee. Plans should provide 

information such as covered benefits and exclusions, lifetime and annual limitations in benefits 

and cost sharing requirements. Health care providers and facilities should provide information 

including experience rates in treating specific illnesses or injuries and accreditation status. 

Health care professionals should provide information including education and board-certification 

status. Health plans should also be required to disclose to providers and consumers drug 

formulary restrictions as well as exceptions when a non-formulary drug alternative is medically 

indicated. In addition, plans should include physicians and pharmacists in the development of 

drug formularies. 

Right to Participate in Treatment Decisions and to Refuse Treatment: 

NCD believes that all patients should be respected and afforded the opportunity to fully 

participate in decisions related to their health care or the care of a person under their legal 

guardianship. Patients should be provided with easily understood information on all appropriate 

treatment options and should be told about the risks and benefits of each treatment, including 

mental health services. All patients should also have the right to refuse treatment. Finally, 

health plans should establish specific policies assisting people with sensory, mental and other 

disabilities in order to maximize the degree to which they are active participants in the decisions 

related to their health care, including training health care providers to be aware of how to 

communicate with people with developmental, psychiatric and sensory disabilities. 

 

Elimination of “Gag Clauses”: 

NCD believes that health plans should be explicitly prohibited from restricting patientprovider communications in any manner. Providers should be allowed to inform patients of all 

medical options, not just the least expensive, without retribution from the plan. In addition, 

financial incentives designed to restrict patient-provider communications should be prohibited. 
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Providers should also be permitted to advocate on behalf of their patients, without retribution 

from the health plan. 

 

Emergency Room Protections: 

 Like all health care consumers, people with disabilities and chronic illnesses are in need 

of emergency room services on occasion. NCD supports a patients’ bill of rights that gives 

patients the right to visit the closest emergency room in an emergency situation, according to the 

“prudent layperson” standard. In other words, if a “prudent layperson” without medical training 

believes that he or she is experiencing an emergency medical condition and visits an emergency 

room, the health plan should be required to pay for this care. Prior authorization for emergency 

room care under the prudent layperson standard should be prohibited and the patient should pay 

no more for an out-of-network emergency room visit than if the emergency provider were in the 

plan’s network. Emergency room patient protections should extend to crisis intervention and 

emergency mental health services provided to people with acute mental illness. 

Access to Clinical Trials: 

The Medicare program recently announced that it would pay for the routine costs 

associated with a beneficiary’s participation in a clinical trial. “Routine” costs include items and 

services that Medicare would normally pay for, such as room and board during a hospital stay 

and health care services to treat the side effects and complications of the clinical trial regimen. 

NCD believes that this benefit should be extended to all patients who are covered by 

private insurance. Patients with chronic illnesses must have access to the full range, and all 

phases of, federally approved clinical trials. Therefore, individuals with life-threatening or 

serious illnesses for which no standard treatment is available should be allowed to participate in 

clinical trials. Any routine patient care costs incurred in connection with participation in the 

clinical trial should be covered by the health plan. 

Strong Grievance Procedures:

All patients, including people with disabilities, should have access to a fair and timely 

internal appeals process as well as an independent, unbiased external appeals mechanism to 

address health plan grievances and to help govern decisions about medically necessary 

treatments. Health plans should be held responsible for providing patients with timely, 

understandable notice of decisions to deny, reduce, or terminate treatment and the reasons for 

these decisions. All information about the grievance process should also be made available in 

alternative formats so that effective communication with enrollees with disabilities is ensured. 

NCD also believes that patients should have access to a binding independent external review 

process after they have exhausted the plan’s internal appeals processes, except in cases of 

urgently needed care. 
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Health Plan Liability: 

NCD is aware that the health plan liability issue has confounded Congress for several 

years and has led to an unacceptable delay in enacting a comprehensive and enforceable patients’ 

bill of rights. On the other hand, as stated in its recent Progress Reports, NCD believes that 

without adequate remedies, there will be no meaningful patient rights. Health plans should be 

held accountable for the medical decisions they make, especially when those decisions harm 

patients or lead to the patient’s death. However, the remedies within the patients’ bill of rights 

should instill accountability in the system without leading to sharp spikes in the cost of health 

insurance, thereby increasing the number of uninsured Americans. Therefore, NCD will support 

any thoughtful, balanced approach to health plan liability that holds plans accountable for 

medical decisions without excessively driving up plan costs. 

Patient Rights that Require Additional Attention

 There are a number of issues that impact the disability community significantly but have 

not been included in the patient rights debate to date for a variety of reasons. While NCD is very 

interested in seeing a patients’ bill of rights signed into law at the earliest possible opportunity, 

the following issues are of such great importance to the disability community that NCD will 

continue to work for their inclusion in the short and long term: 

Benefits/Medical Necessity Definition: 

One of the greatest threats to the quality of health care of people with disabilities is the 

restrictive trend in the breadth of most health plans’ benefit packages. This trend can be seen in 

two primary ways: The imposition of limitations and exclusions in benefits and the way in which 

the term “medical necessity” is defined by the health plan. All of the major patients’ rights bills 

completely omit this important issue. NCD believes that any definition of “medical necessity” 

should include the concept of not only improving, but maintaining the functional capacity of the 

patient, taking into account consumer choice, consumer lifestyle, and the long-term effectiveness 

of the intervention, service, or device under consideration. 

In addition, Medicare and Medicaid provide for in-home services critical for people with 

disabilities, such as physical, occupational, and speech/language therapy, as well as home health 

aides. Such coverage is often absent or inadequate in private health insurance. Also, most 

private health plans do not provide coverage for assistive technologies, which are crucial in 

helping people with disabilities return to work, improve their functional abilities, and live more 

active and independent lives. Finally, private health plans should be no more restrictive of 

mental health benefits than they are for physical health benefits. Private health plans should 

include these kinds of benefits for them to be truly responsive to the needs of all people with 

disabilities. 

Privacy and Confidentiality of Medical Records: 

NCD believes that patients should be able to communicate with their health care 

providers in confidence and should have the confidentiality of their individually identifiable 
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health care information protected. Patients should have unfettered access to their own medical 

records and be able to request amendments to their records to correct mistakes. 

ADA Application to Health Plans: 

NCD believes that health plans and providers with rare exception are subject to Title III 

of the ADA, including the requirement to provide reasonable modifications to their policies, 

practices, and procedures under Title III of the ADA. In addition, private health plans and 

providers that receive Medicare and Medicaid funds for the treatment of these beneficiaries are 

required to meet the nondiscrimination provisions of the Rehabilitation Act of 1973, which apply 

to federal contractors and recipients of federal funds. Full implementation of these laws by 

health plans and providers could significantly improve access to and quality of health care for 

people with disabilities and chronic illnesses.