20 Years in Self Advocacy Disability Civil Rights Movement

Presented By:Maryland Disabilities Forum

20th Anniversary

Americans with Disabilities Act

Self-Advocacy as a Civil Rights Movement

• The self-advocacy movement is modeled after civil rights movements of the 1950s and 1960s.

• The emphasis on normalization and deinstitutionalization in the 1970s and the self-help movements of the 1980s spurred the emergence of the self-advocacy movement for adults with disabilities in the

United States. (Wehmeyer, Agran, & Hughes, 1998)

1990ADAPT

American Disabled for Attendant Programs Today

• ADAPT organizes a support demonstration

“Wheels of Justice” in Washington, D.C. for the passage of the Americans with Disabilities Act.

• Demonstrators occupy the Capital Rotunda and many protesters are arrested.

ADAPT for ADA

In a rally in Washington, D.C., before the passage of the ADA, demonstrators extend the frame of civil rights by incorporating slogans from the civil rights movement.

ADAPT for ADA

ADAPT Demonstrators gather in the Capital Rotunda to support the passage of the Americans with Disabilities Act.

Accessibility Demonstrations

Demonstrators for access to public

transportation and buildings.

Inaccessibility Continues

Moves Toward Accessibility • Secretary of Transportation, Sam

Skinner, finally issued regulations mandating lifts on buses.

• These regulations implemented a law passed in 1970 (The Urban Mass Transit Act) which required lifts on new buses.

• The transit industry had successfully blocked implementation of this part of the law for twenty years.

July 26,1990

President George Bush signing the Americans with Disabilities Act

1990• Americans with Disabilities Act (ADA) becomes federal law.

Extends protection of the 1973 Rehabilitation Act to private sector. Requires access and prohibits discrimination in public accommodations, state and local government, and employment. Requires reasonable accommodation, access to transportation and telecommunications. The ADA is specific where 1973 act was vague.

• IDEA—Individuals with Disabilities Education Act.

• Education for All Handicapped Children Act is reauthorized with amendments.

• A growing emphasis on the deinstitutionalization of state-supported institutions for people who are intellectually disabled or mentally ill opens opportunities to live and work in the community.

1991Changing Public Perception

Jerry’s Orphans

• Jerry’s Orphans, a group that protests against the Jerry Lewis Muscular Dystrophy Association Telethon, holds its first annual protest.

• The group is made up of former “Jerry’s Kids” and is critical of the event because of its focus on the “pity approach” to fundraising.

Changing Public Perception

Kemp contended that people with disabilities suffered far more from lack of jobs, housing -- lack of access to society -- than from the diseases MDA sought to ‘cure’.

The Telethon was urged to reform; to portray people with disabilities "in the light of accomplishments, capabilities and rights,” and to "inform the public of the great waste of money and human life that comes from policies promoting dependence rather than independence."

Evan J. Kemp, Chairman of the EEOC (1990-93) and an individual with a disability, in addition to many others, believed the telethon encouraged society to see people with disabilities as “childlike, helpless, hopeless, nonfunctioning and noncontributing members of society.”

Telethon Reform

• Telethons, such as the Easter Seals', United Cerebral Palsy's, changed their process by including adults with disabilities and offering more segments on things like "independent living" which those in the disability rights movement had urged.

1991SABE

• Self Advocates Becoming Empowered (SABE) was founded during the Second North American People First Conference in Nashville, Tennessee.

• The groups’ objectives included closing all institutions, making self-advocacy readily available, and working in conjunction with the criminal justice system to ensure people with disabilities know their rights.

SABE on Self Advocacy

• Self-Advocacy is About:

“…independent groups of people with disabilities working together for justice by helping each other take charge of our lives and fight discrimination. It teaches us how to make decisions and choices that affect our lives so we can be more independent. It teaches us about our rights, but along with learning about our rights, we learn about our responsibilities. The way we learn about advocating for ourselves is by supporting each other and helping each other to gain confidence to speak out for what we believe in (SABE, 1991).”

1994Self Determination and Self Advocacy

• Essential to Self-determination is "a combination of skills, knowledge, and beliefs” along with “an understanding of one’s strength’s and weaknesses enabling a person to engage in goal-directed, self-regulated, autonomous behavior. When acting on the basis of these skills and attitudes, individuals have greater ability to take control of their lives and assume the role of successful adults in our society" (Field, Martin, Miller, Ward, & Wehmeyer, 1998, p.2).

• Self-determination skills for students with disabilities was the focus of extensive research and development in the 1990’s. Field and Hoffman (1994) conceptualized self-determination as a process that includes:

• knowing yourself,• valuing yourself,• planning to reach goals,• acting upon those plans,

and• learning from the

experience.

• This simple model provides the framework for developing a specific type of self-determination skill, self-advocacy. The theme of these Self-advocacy Activities is self-knowledge and developing a sense of self-worth, the first two stages of the Field and Hoffman model.

Self Advocacy

• An individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions. (VanReusen et al., 1994)

• Self-knowledge is the first step towards advocating for your rights; knowing your strengths, needs, and interests.

Tips for Self-Advocacy• Know and understand your rights and responsibilities • Learn all you can about your disability, needs, strengths,

and weaknesses• Know what accommodations you need as well as why

you need them• Know how to effectively/assertively communicate your

needs and preferences• Find out who the key people are and how to contact

them if necessary • Be willing to ask questions when something is unclear or

you need clarification

1994Maryland Disabilities Forum

• Self-Advocacy Activists with disabilities involved with other disability advocacy organizations, formed the Maryland Disabilities Forum (MDF) in order to produce statewide systems change.

• The MDF holds a Gubernatorial Candidates Forum every four years, providing a platform for individuals with disabilities to hear about and engage in the policy issues that affect their lives.

Maryland Disabilities Forum

• Recommended and advocated for the creation of a Department of Disabilities, elevating the Governor’s Office for Individuals with Disabilities to a cabinet-level department.

• Assisted in writing the legislation for the proposed department, which included recommendations given by MDF for implementing the New Freedom Initiative for Maryland.

• On May11, 2004, Governor Ehrlich signed Senate Bill 188, thus creating the new state Department of Disabilities.

1995American Association of People with

Disabilities

• American Association of People with Disabilities is founded in Washington, D.C. by Paul G. Hearne with aid from disability activist Justin Dart and others.

• The group is “…The largest national nonprofit cross-disability member organization in the United States, dedicated to ensuring economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities.”

1996

• Not Dead Yet is established to protest assisted suicide of people with disabilities.

• The formation of the group was prompted by the acquittal of Jack Kevorkian for his role in the assisted suicide of two women with disabilities.

• The organization believes that a “right to die” could lead to a societal “obligation” to die.

• Of particular concern are calls for the “rationing” of health care to people with severe disabilities and the imposition of “Do Not Resuscitate” (DNR) orders for people with disabilities in hospitals, schools, and nursing homes.

1996Increasing Voter Awareness

• President Clinton’s challenge to the nation to establish a national disability policy based upon three simple creeds: inclusion, not exclusion; independence, not dependence; and empowerment, not paternalism wins the support of the disability community.

• More than ever before, disability self-advocates are pushing policy toward greater inclusion of people with disabilities into society.

1996

• President Clinton renews the call of his predecessors for greater community inclusion of people with intellectual disabilities by signing Executive Order 12994.

• President Clinton encourages America to see the abilities, not the limitations in every American, and to recognize the worth and dignity that every American contributes to the nation.

• The President’s Committee for people with Intellectual Disabilities answers this call with a series of reports, including “The Journey to Inclusion: A Resource Guide for State Policymakers” and “Collaborating for Inclusion: 1995 Report to the President.”

(U.S. Department of Health and Human Services)

1999

• Global Perspectives on Independent Living for the Next Millennium hosts an International Summit Conference on Independent Living in Washington, D.C.

• The conference brought 125 leaders of the Independent Living movement from 50 countries together to compare services and bring about additional cooperation.

1999Integrated Setting

• The United States Supreme Court rules on Olmstead v. L.C. and E.W. stating that the Americans with Disabilities Act requires public agencies to provide services in the most integrated setting.

• The case states services should not be provided in an institutional setting if a person with a disability can be served in a community- based environment.

1999

• Kids As Self Advocates (KASA), an organization created by youth with disabilities for youth to educate society about issues concerning youth with a wide spectrum of disabilities.

• KASA believes in supporting self-determination, creating support networks and proactive advocacy for all youth with disabilities in our society.

1999

• The Work Incentives Improvement Act (Ticket to Work) becomes law.

• Designed to increase beneficiary choice, remove barriers, and provide greater opportunities for people with disabilities to participate in the workforce and lessen their dependence on public benefits.

2001New Freedom Initiative

• The New Freedom Initiative is announced by President George W. Bush as a comprehensive plan representing an important step in working to ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, make choices about their daily lives and participate fully in community life.

New Freedom InitiativeThe Initiative's goals:

• Increase access to assistive and universally designed technologies;

• Expand educational opportunities; • Promote home ownership; • Integrate Americans with disabilities into the

workforce; • Expand transportation options; and • Promote full access to community life.

2001National Disabled Students Union

NDSU was formed to protest the fact that the Supreme Court said that people with disabilities who work for the state, [state government or state university] cannot sue the state for violations of the Americans with Disabilities Act.  

The National Disabled Students Union (NDSU) is a national, cross-disability, student organization founded in response to the U.S. Supreme Court decision limiting the enforcement of Title I of the 1990 Americans with Disabilities Act (Board of Trustees of the University of Alabama et al. v. Garrett et al).  

2002Help America Vote Act

• Its goals include the replacement of voting machines, voter registration reform, better access to voting for people with disabilities and poll worker training.

• To the disability community, HAVA is more than an election reform statute; it is a civil rights law. It gave individuals with disabilities what no other previous civil rights statute had given before: the right to participate in elections as other voters do and to cast a private and independent ballot.

With increasing accessibility to voting locations, individuals with disabilities are actively pursuing their rights as citizens to engage in the political determination of leadership.

The Help America Vote Act of 2002 required polling places to have at least one voting system accessible for people with disabilities.

2004• The development of group consciousness

among people with disabilities gave rise to the disability civil rights movement seeking to promote pride in the history, activities, and cultural identity of people with disabilities throughout the world.

• The first annual Disability Pride Parade marched in Chicago, IL.  It was the first national and worldwide parade about being Disabled & Proud!

2005Money Follows the Person Act

– Gives people the freedom to choose where they want to live and receive services. Promotes transition and community integration.

– ADAPT classified the MFP as “win-win” in that people with disabilities get the choice to live in the community and states get the needed resources to rebalance their long term service systems to increase the availability of community based services.

– MFP helps states comply with the ADA and the Olmstead decision, comparing nursing home costs to their waivers, and ICF-MR costs to their waivers.

– MFP provides respite care services for caregivers of adults with disabilities or long-term illness.

Money Follows the Person in Maryland

• The Maryland Disabilities Forum lead other disability advocacy groups in providing stakeholder input to the State for their grant proposal to the Center for Medicare and Medicaid Services for $3.5 million in federal funding, over five years, to change Maryland’s long-term care system.

2009Community Choice Act

• The Community Choice Act (H.R. 1670 and S. 683), part of the historic healthcare reform legislation provides a person with a disability the choice of where to live, rather than being forced to stay in institutional care.

Community Choice Act• The Community Choice Act provides Americans with

disabilities equal access to community-based services and supports.

• Provides individuals with disabilities in nursing homes and other institutional settings with options to receive community-based services.

• Helps address waiting lists by providing guaranteed access to a community-based benefit within Medicaid.

• Amends Medicaid to require state Medicaid plan coverage of community-based attendant services and supports for certain Medicaid-eligible individuals.

• States receive an enhanced federal matching rate for meeting certain benchmarks and for serving people whose costs exceed 150 percent of average nursing home costs.

Defending Our FreedomADAPT organizes a campaign to address massive state cuts during economic recession.

Defending Our Freedom: a three-prong national campaign aimed at organizing the disability community to:

• Demand that the Obama administration fulfill its duty to aggressively protect the civil rights of disabled Americans and enforce the Americans with Disabilities Act/Olmstead decision; • File complaints with the Health and Human Services Office of Civil Rights and the U.S. Department of Justice that document the violation of rights of individuals who have been forced into institutional settings and denied community services.• Document the disability community’s efforts to fight back against state cuts, rally others to join the fight, and hold public officials accountable when they do not support people with disabilities’ freedom.

A Movement Still in Progress

• This display offers a glimpse into the past 20 years of the disability civil rights movement and successful systems change tracing the evolution of self advocacy since the historic passage of the Americans with Disabilities Act in 1990.

• America has come a long way with advocacy for policies that improve the lives of people with disabilities and movements toward full social inclusion. The disability civil rights movement is still in motion. Advocates recognize the need for effective change is greater than ever, for even though progress has been made, social awareness is still evolving.

Presented By: The Maryland Disabilities Forum

• The Maryland Disabilities Forum is a non-profit cross-disability organization led by people with disabilities that provides leadership in facilitating systems change to achieve community inclusion, civil rights and equal opportunities for people with disabilities. The Forum achieves this by connecting people with disabilities, other individuals, and organizations; providing them with the opportunity to network and engage in public forums to increase awareness among people with disabilities; and enhancing their participation in the policy setting and implementation process by providing a wide spectrum of information.