Currently, there is no Patient Bill of Rights in terms of explicit legislation despite many attempts. The last effort was known as the Bipartisan Patient Protection Act (Senate S.1052) passed by both houses, and then by the Senate after amendments by the House, but it never came up for a final vote. Proponents believe failure was largely because various lobbying and special interest groups (AMA, pro-life organizations, and various state legislative systems) were reticent to cede control of medical care to the patient. That was in 2001.
There are many pseudo Bill of Rights, such as the Consumer Bill of Rights and Responsibilities adopted by the US Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998 (the Clinton administration) and which was known as the Patient’s Bill of Rights. It contained eight (8) key areas, one of which was “Respect and Non-Discrimination” (you have the right to considerate, respectful care that does not discriminate against you); however, it did not specifically address either accessibility or disability.
The Affordable Care Act has a so-called Patient’s Bill of Rights which deals mainly with consumer protections and the extension of medical coverage to the previously uninsured, but which currently does not contain anything pertaining specifically to accessibility or to persons with a disability (other than the various consumer protection issues, etc). The Departments of HHS, Labor, and Treasury all have issued implementing regulations. Current information is available at www.healthcare.gov.
The most definitive information constituting a patient’s bill of rights is contained in an ADA document entitled Access to Medical Care for Individuals with Mobility Disabilities dated 7/22/2010 and which has been promulgated by both the DOJ (Civil Rights Division) and the HHS (Office for Civil Rights). The document states:
Both Title II and Title III of the ADA and Section 504 require that medical care providers provide individuals with disabilities:
- Full and equal access to their health care services and facilities, and
Reasonable modifications to policies, practices, and procedures when
necessary to make health care services fully available to individuals
with disabilities unless the modifications would fundamentally alter
the nature of the services (ie alter the essential nature of the
Some of the specific requirements of Titles II and III and Section 504 are:
- Cannot refuse or deny medical service, nor give unequal care to people with disabilities and cannot develop eligibility criteria that in effect screens out people with disabilities
- Accessible routes throughout
- All doors at least 32” in width
- Clear floor and turning space
- Accessible (adjustable height) examination tables
- Adjustable height mammography machine
- Accessible scale with high weight capacity
- Elevators with Braille
- Allow bona fide service animals
- Appropriate communication means for patients who are deaf or hard of hearing and persons with vision impairments.
There doesn’t seem to be a lot of effort being made to move this situation forward. However, the following may produce some tangible results. By letter dated 3/1/2011, The Disability Rights Education and Defense Fund (DREDF), a national law and policy center that advocates the civil and human rights of people with disabilities wrote to the Agency for Healthcare Research and Quality urging them to develop and include measures in the Core Set of Health Quality Measures for Medicaid-Eligible Adults that will improve the quality of care for people with disabilities. Specifically, they recommended the following quality measures be added to the Core Quality Measures:
- Availability of wheelchair-accessible weight scale
- Availability of height-adjustable examination table with a minimum height capacity of 17 to 19 inches from floor to top of cushion
- Availability of mammography equipment for which the imaging receptor lowers to a minimum height of 24 inches from the floor to the top side of the imaging receptor platform; and with sufficient clear knee space from the stand to the front edge of the imaging receptor to enable wheelchair users to go into position for mammography without running into protruding imaging platforms or tube heads connected to the central stand
- Availability of patient print education and instruction materials in alternative formats, e.g., audio recording, large print, digital, Braille
- Availability of Sign Language Interpreters and assistive listening devices
Even though the above provisions and capabilities are prescribed by the ADA, general compliance has not been uniformly good. At a symposium held by the Society for Social Work and Research (SSWR) on 1/15/2011 a report on the finding of a study of Primary Health Care Settings for People with Disabilities reported (the study evaluated on-site accessibility data for 2389 Medicaid primary care provider offices in California):
“Among the findings, accessibility rates are highest for architectural elements, such as accessible parking (90,6%), path of travel in the office (98.8%), and examination room size (84.5%); however, two-thirds of the elevators fail the ADA standard for size. Only a small percentage of provider’s offices have height-adjustable exam tables (7.1%) or accessible scales (4.2%), both important to a basic medical exam. The qualitative comments indicate that in many instances of architectural non-compliance, the problems are not difficult to remedy. There is little variation by primary care specialty, perhaps because many of the provider’s offices are group practices”. (NOTE: The action by DREDF referred to above was prompted in part by this study).
So, what are the rights of a person with a disability when he/she goes to the doctor? Those rights are all prescribed in Titles II and III and Section 504 and have been described above. Will that person find the inclusive accessibility? Maybe yes, probably no. If no, what can be done about it? One of the answers can be found in an official U.S. government booklet entitled Your Medicare Rights and Protections by the Centers for Medicare and Medicaid Service (CMS). Section 2 Rights and Protections for Everyone with Medicare says:
All people with Medicare have certain guaranteed rights and protections, including the right to the following:
- Be treated with dignity and respect at all times
- Be protected from discrimination. Discrimination is against the law. Every company or agency that works with Medicare must obey the law. You cannot be treated differently because of your race, color, national origin, disability, age, religion, or sex.
If you think you haven’t been treated fairly for any of these reasons, call the Office of Civil Rights at 1-800-537-3697.
Beyond that, there are the normal remedies for ADA violations that can be taken by Fairfax County residents:
- Contact the Zoning Enforcement Branch of the Fairfax County Department of Planning and Zoning: 703-324-1300, TTY 711
- Contact the Fairfax County Office of Human Rights for Title III violations: 703-324-2953, TTY 703-324-2900
- Contact the Fairfax County Office of Equity Programs for Title II violations: 703-324-2207, TTY 703-222-5494
- Contact the US Department of Justice (DOJ), Civil Rights Division, Disability Rights Section for Title II or Title III violations: 1-800-514-0301, TTY 1-800-514-0383