20th Anniversary
Americans with Disabilities Act
20 Years in Self Advocacy
Disability Civil Rights Movement
Presented By:
Maryland Disabilities Forum
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)
1990
ADAPT
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 statesupported institutions for people who are intellectually
disabled or mentally ill opens opportunities to live and
work in the community.
1991
Changing 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
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.”
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."
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.
1991
SABE
• 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).”
1994
Self 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 selfdetermination 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
1994
Maryland 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.
1995
American 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.
1996
Increasing 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.
1999
Integrated 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 communitybased 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 selfdetermination, 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.
2001
New 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 Initiative
The 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.
2001
National 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).
2002
Help 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!
2005
Money 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.
2009
Community 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 communitybased 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 Freedom
ADAPT 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.