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Disability Rights

Every individual should be able to lead a full, productive life and participate in community activities. For people with multiple sclerosis and other disabilities, there are many obstacles to full participation in transportation, employment, recreation, government, and other activities, such as cultural events. The National Multiple Sclerosis Society is dedicated to the removal of these barriers so people with MS can live with as much independence and self-sufficiency as possible.

Since the passage of the Americans with Disabilities Act (ADA) in 1990, considerable progress has been made in literally opening the doors of opportunity. Under the auspices of the ADA, the Society continues to support legislative, regulatory and judicial efforts to increase accessibility and independence, prevent discrimination, and protect the general well being of people with disabilities. (For additional information on the ADA as well as other laws and Supreme Court cases concerning accessibility, please see the Appendix.)

Federal Advocacy Opportunities

In conjunction with our disability coalition partners, the National MS Society will:

  • Support the continuing implementation of the 1999 Ticket to Work and Work Incentives Improvement Act (TWWIIA). This federal law removes some of the most significant barriers keeping disabled persons from returning to work.

  • Support federal and state legislation to prevent discrimination by insurers and employers based on an individual's genetic information.

  • Oppose judicial challenges to the ADA, particularly in cases to be heard by a federal appellate court or the U.S. Supreme Court.

  • Promote participation in the opportunities afforded by President Bush's New Freedom Initiative.

TWWIIA. The Society must continue to educate and encourage people with MS to take advantage of this law that allows people receiving Social Security Disability Insurance (SSDI) to return to work and retain their Medicare health coverage for 8.5 years. This is an extension of 4.5 years beyond earlier legislation. After the 8.5 years, individuals still can retain Medicare coverage for a premium of $343/month or $189/month. The lower monthly premium is available to those with a work history of 7.5 years, and all work during the 8.5 year Medicare extension period will be included in a person's work history.

One possible shortcoming of TWWIIA is if a person earns more than $810/month, he or she loses the entire Social Security Disability Income benefit. This may be an additional disincentive to employment. The Society supports a more gradual phase out of the disability income benefit.

People with disabilities also need to be informed about another opportunity under TWWIIA-the "Ticket" section. To help people with disabilities re-enter the workforce, individuals receiving SSDI or Supplemental Security Income (SSI) may use a "Ticket" to secure any of the following from an employment network of their choice: employment services; vocational rehabilitation services; and other support, such as assistive technology. The "Ticket" section of TWWIIA was phased in over a 3-year period, which began January 1, 2001. Thirteen states (AZ, CO, DE, FL, IL, IA, MA, NY, OK, OR, SC, VT, WI) were selected to participate in the first year of the ticket program. In November 2003, all 50 states were distributed "tickets" by the Social Security Administration. We are continuing to work with our coalition partners to advocate for any needed improvements to the ticket program.

Another section of TWWIIA gives states the option to allow working individuals with disabilities to "buy in" to Medicaid health coverage, with a sliding fee scale based on the person's income. We will treat this opportunity in the next section on state and local advocacy opportunities.

Preventing Discrimination Based on Genetic Information. Due to a possible genetic link in the onset of MS, individuals fear employers or insurers could one day discriminate against people with MS based simply on their genetic information. While there are provisions to protect the privacy of genetic information in the recently published implementation rules for the Health Insurance Portability and Accountability Act (HIPAA), they are not adequate to protect individuals from discrimination if genetic information becomes known for any reason.

President Bush also supports prohibitions against the misuse of genetic information via federal legislation that is fair, reasonable, and consistent with existing discrimination statutes.

The Society will continue to work closely with our coalition partners to support legislation that would prohibit genetic discrimination, and we will inform advocates of any needed action in this area.

Judicial Challenges. The Society has consistently worked to protect the full force and effect of the ADA. In this role, the Society occasionally will become engaged in federal appellate or Supreme Court cases involving disability rights if a decision would have a major effect on people with MS or if the interests of people with MS need to be represented.

In many instances, the courts are asked to clarify what was meant by the words "disability," "substantially limited," and "major life activities" in the original ADA legislation in order to determine whether a particular individual is protected by the ADA. Pending federal ADA cases are closely followed by disability rights organizations, and the Society often joins in "friend of the Court" (amicus curiae) briefs to safeguard the protections intended by the ADA. The ADA definition of disability and information about major US Supreme Court decisions concerning the ADA are contained in the Appendix.

Opportunities Under President Bush's New Freedom Initiative. In February 2001, President Bush pledged to implement over a dozen separate initiatives to help people with disabilities achieve greater independence and community integration. To support employment aspects of the New Freedom Initiative, the President is encouraging the development of assistive technologies. Assistive and universally designed technologies can be a powerful tool for millions of Americans with disabilities, dramatically improving one's quality of life and ability to engage in productive work. New technologies are opening opportunities for even those with the most severe disabilities.

In this endeavor, the Administration recently announced new "Systems Change Grants for Community Living" building on the goals of increasing community integration for people with disabilities. The program includes the National Technical Assistance Exchange for Community Living grant-$4 million to provide technical assistance, training and information to states, consumers, families, and other agencies and organizations. We encourage the Society's chapters to urge their states to take advantage of grant opportunities as they become available.

State and Local Advocacy Opportunities

Advocacy opportunities at the state and local levels in the area of disability rights are best illustrated by the following summary of chapters' successes in 2003.

  • Minnesota Chapter staff led high-level negotiations with Department of Human Services staff and House Health and Human Services Committee members in developing a compromise to lessen the effect of proposed gubernatorial reductions in the state's Medicaid buy-in program. The Governor proposed requiring all buy-in participants to pay a portion of their Medicare Part B premium, but through the chapter's efforts, only those with incomes in excess of 200% of FPL will be required to do so. Additionally, a premium payment of only ? percent on unearned income, such as Social Security, will be required as opposed to the 5 percent originally proposed by the Governor.

  • The Maryland and National Capital Chapter advocates' continued perseverance through three legislative sessions paid off. The Governor signed a bill directing the Department of Health and Mental Hygiene to consult with the Maryland Coalition for Work Incentives Improvement in developing eligibility criteria for a Medicaid buy-in program on May 22, 2003. The buy-in must be implemented by July 1, 2005.

  • Efforts of the Utah Chapter resulted in the creation of 15 percent "disability discounts" in the fees for entrance to Salt Lake County Recreation Centers, discounts previously available only to seniors. Working through a contact in the Mayor's office, with the County Recreation Director, and the Utah Sports Advisory Council, the chapter plans to collect data on the use of the facilities by people with disabilities and push to make comparable discounts available statewide.

  • Funding for Metro Mobility, the primary Para-transit services for the Minnesota Twin Cities was in jeopardy. Proposed reductions in services included fare hikes, reduced service areas and reduced hours including no weekend service. Minnesota Chapter staff and volunteers were invited to a planning meeting to prioritize various options for reductions. Ultimately, more than 200 people with disabilities submitted comments to the Metropolitan Council, successfully mitigating the effects of the proposed cuts. Half of weekend service was restored, and fares were increased by only 25 cents rather than the proposed peak fare increase of $1.00.

  • Idaho Division, working with the Consortium of Individuals with Disabilities, successfully advocated for revisions to laws dealing with child protection. These revisions grant a parent with a disability involved in a matter of child custody, child protection, termination of parental rights, adoption or guardianship the right to present evidence and information regarding the manner in which the use of adaptive equipment and supportive services will enable the parent to carry out the responsibilities of parenting a child.


Appendix

I. THE AMERICANS WITH DISABILITIES ACT
The Americans with Disabilities Act (ADA) of 1990 is described as the most sweeping anti-discrimination legislation since the Civil Rights Act of 1964. It promotes accessibility and protects against discrimination in the following areas:

  • Employment (Title I). The ADA prohibits employers with more than 15 employees from discriminating against any qualified individual with a disability. In addition, employers with 15 or more employees must make "reasonable accommodation" to the known physical or mental limitations of otherwise qualified individuals with disabilities, unless it results in "undue hardship."

  • State and Local Government Activities (Title II). The ADA requires all state and local governments, regardless of size or federal funding, to give people with disabilities an equal opportunity to benefit from all programs, services and activities. State and local governments also are required to follow specific architectural standards in the construction and alteration of buildings.

  • Public Accommodations (Title III). The ADA prohibits discrimination in public accommodations operated by private entities. These include restaurants, retail stores, hotels, movie theaters, private schools, convention centers, medical offices, public shelters, zoos, funeral homes, day care centers, recreational facilities, sports stadiums, and fitness clubs. Barriers in existing buildings must be removed where it is reasonable to do so without too much difficulty or expense.

  • Telecommunications (Title IV). Telephone companies or common carriers are required to establish interstate and intrastate telecommunications relay services (TRS) 24 hours a day, 7 days a week. These services allow callers with hearing and speech disabilities who use text telephones to communicate with people on a voice telephone through a third-party communications assistant.

  • Public Transportation. Public transportation authorities may not discriminate against people with disabilities in providing their services. Authorities must comply with requirements for accessibility in newly purchased vehicles, make good faith efforts to purchase or lease accessible used buses, re-manufacture older buses in an accessible manner, and provide a Para-transit system wherever a fixed-route bus or rail system exists (unless it would result in an "undue burden").

The ADA Definition of Disability. The ADA prohibits discrimination on the basis of a disability. With respect to an individual with a disability, the ADA defines "disability" as:

  • A person with a physical or mental impairment that substantially limits one or more major life activities (such as working), or

  • A person with a history or record of such an impairment, or

  • A person perceived by others as having such an impairment.

Shortcomings of the ADA. The ADA has increased public awareness of disability rights and has prompted real gains in the area of physical accessibility; yet, it has a number of shortcomings. While the ADA provides the necessary legal structure and institutional framework to resolve accessibility and discrimination problems, the ambiguity of certain important terms, such as "disability," "reasonable accommodation," and "undue hardship," causes confusion for the judicial and administrative agencies that enforce the law. This means obtaining satisfactory resolution of discrimination charges under the ADA can be very problematic. While most of the ADA provisions took effect in 1992, the body of law interpreting the ADA still is being refined through judicial action. The decisions in these cases could have a major impact on the interpretation of the ADA.

II. U.S. SUPREME COURT AND THE ADA

In May, 2004, the Supreme Court ruled by a 5-4 decision in favor of the rights of people with disabilities to sue states for monetary damages for certain violations under the ADA in the case Tennessee v. Lane, Jones, et al. Plaintiffs sued Tennessee for failing to ensure that courthouses were accessible to individuals with disabilities. At issue was whether Congress had the constitutional authority to require states to pay monetary damages for Title II violations. A Court ruling suggesting that Congress did not have the power to apply many of the core provisions of the ADA to state and local governments could have further eroded ADA protections. The Court appeared to limit its ruling to the fairly narrow sphere of courthouses and court services, but disability advocates believe the rationale could be used to allow private suits on other grounds.

In 2003, the Supreme Court rendered two decisions in support of ADA enforcement and applicability. In Clackamas Gastroenterology Associates v. Wells, the Court ruled the four director-shareholder physicians at the clinic were not considered employees; therefore, the clinic did not have enough employees to make it necessary for the clinic to adhere to ADA guidelines. In the second Supreme Court case, Raytheon Company v. Joel Hernandez, the Court determined Raytheon's no-rehire policy did not violate the ADA and it satisfied the requirement for being a legitimate, nondiscriminatory policy. Raytheon had an unwritten no-hire policy that would automatically eliminate potential rehires that were previously terminated by the company.

In 2002, the U.S. Supreme Court issued its ruling in the case of Toyota Motor Manufacturing, Kentucky, Inc. v. Ella Williams. The Court's unanimous decision focused on refining the definition of disability under the ADA. To be protected under the ADA, a person must have an impairment that "substantially limits one or more of the major life activities." This decision represents the Court's attempt to clarify what is meant by "substantial" and "major life activities" under the ADA.
The Court's narrow ruling of disability in Williams means an impairment that prevents one from completing a specific job does not necessarily qualify as one that "substantially limits one or more of the major life activities" under the ADA. Disability advocates have concerns over the impact of such a definition and the burden it may place on employees looking for accommodations and protections under the ADA. Many consider this to be against Congress' intent in the ADA.

The Supreme Court also determined "major life activities" are those that "are of central importance to daily life." The Court held that manual tasks, which may be central to a specific job, are not necessarily important to a person's daily life activities. In discussing other activities of central importance, the Court points to if a person can tend to their personal hygiene, perform household chores, bathe without assistance, and brush one's teeth.

Four additional cases were decided in 2002. In the first, Equal Employment Opportunity Commission v. Waffle House, Inc., the Supreme Court ruled that an arbitration agreement between an employer and an employee does not bar the EEOC from pursuing victim-specific judicial relief on behalf of an employee. The ruling affirms the EEOC's ability to assist people with disabilities in protecting their civil rights in the workplace.

In the second case, U.S. Airways, Inc. v. Barnett, the Court ruled the ADA does not ordinarily require the assignment of an employee with a disability to a particular position to which another employee is entitled under an employer established seniority system, but that it might in special circumstances. Unfortunately, the Court's description of reasonable accommodations as "special" and "preferential" reinforces the misconception that the ADA provides individuals with disabilities advantages over those that do not have any disabilities.

In the third, Chevron U.S.A., Inc. v. Echazabal, the Supreme Court decided it is permissible under the EEOC regulations for employers to refuse to hire applicants because their performance on the job would endanger their health due to a disability under the ADA. The Court's ruling allows the employer and their physicians to decide what are the perceived dangers for their employees with disabilities and if they are suitable to work in a particular environment.

In the final decision of 2002, Barnes v. Gorman, the Court ruled punitive damages are not available under Section 504 of the Rehabilitation Act of 1973 or Title II of the ADA.

In 2001, the Supreme Court ruled in University of Alabama v. Garrett, that state workers alleging job discrimination can no longer sue their employers in federal court for monetary damages under the ADA. The Garrett case involved two state employees in Alabama: Patricia Garrett, a registered nurse with breast cancer, and Milton Ash, a corrections officer with severe asthma. Both claimed they suffered job discrimination because of their disabilities. Some disability rights advocates feared the Supreme Court might use Garrett to overturn Title II of the ADA. Instead, the ruling was limited to Title I of the ADA and held that Congress, when it passed the ADA in 1990, exceeded its constitutional authority by subjecting states to federal employment discrimination lawsuits for monetary damages. By barring these discrimination lawsuits in federal court, the Supreme Court continues its trend of limiting the federal government's power over states.

The Supreme Court's 1999 decision in Olmstead v. L.C. directs states to base decisions on the delivery of long-term care and support for people with disabilities on what is appropriate for and desired by the individuals. While governmental programs must be offered "in the most integrated setting appropriate to the needs" of the people with disabilities, the Supreme Court also recognized the need for "taking into account the resources available to the states and the needs of others with disabilities." Future court cases are expected to clarify the responsibilities of the states under Olmstead.

Also in 1999, the Supreme Court rendered decisions in four more cases concerning the ADA. Three of the four cases, Sutton v. United Airlines, Murphy v. United Parcel Service and Albertson's v. Kirkingburg, concerned the ADA's definition of "disability"- the gateway to coverage under the ADA. The fourth case, Cleveland v. Policy Management Systems Corporation, examined whether an application for Social Security disability benefits can disqualify an individual from protection under the ADA.

III. OTHER LAWS CONCERNING ACCESSIBILITY & DISCRIMINATION
Prior to the ADA, three major laws pertaining to disability rights and accessibility were enacted:

Fair Housing Act. The Fair Housing Act, as amended in 1988, prohibits housing discrimination on the basis of race, color, religion, sex, disability, familial status and national origin. Provisions cover private housing, federally financed housing, and state and local government housing.

Air Carrier Access Act. The Air Carrier Access Act of 1986 prohibits discrimination in air transportation by air carriers against qualified individuals with physical or mental impairments. It applies only to air carriers that provide regularly scheduled services for hire to the public. Requirements address a wide range of issues, including boarding assistance and certain accessibility features in newly built aircraft and new or altered airport facilities.

Architectural Barriers Act (ABA). The ABA of 1968 requires buildings and facilities designed, constructed, or altered with federal funds-or leased by a federal agency-to comply with federal standards for physical accessibility. ABA requirements are limited to architectural standards in new and altered buildings and in newly leased facilities. The requirements do not address the activities conducted in those buildings and facilities.

For Additional Information

 
Last updated December 16, 2004