July 25, 2013
This week, people with disabilities across the country are celebrating the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA). This was the first comprehensive federal civil rights statute protecting the rights of people with disabilities. The ADA established that people with disabilities have equal opportunity in employment, state and local government, places of public accommodation, and telecommunications.
Despite the ADA’s promise of equal opportunity for people with disabilities, it is clear that more work must be done so that people with disabilities are to be valued as equal citizens and welcomed in all aspects of American life. Today, far too many people with disabilities are forced to live in institutions, forced to receive unwanted treatment, denied programs and services, or to be paid less than minimum wage. On a regular basis, our civil, constitutional, and parental rights are disregarded or stripped away.
Our lives and expertise are not valued equally – with dire consequences. Healthcare professionals refuse to communicate with us, overrule the decisions we make or those made by our authorized surrogates; law enforcement and the courts too often fail to treat those who kill people with disabilities the same as those who kill nondisabled people, particularly when an individual has been killed by a family member.
Our very freedom of movement can be deprived and our rights stripped from us on the basis of arbitrary and capricious decisions about our capacity. Furthermore, the voices of people with disabilities are frequently ignored in favor of parent and provider organizations that speak about us, without us. Policymakers have ignored our expertise about our own lives, issues and desires, instead of allowing providers, academics and family members to speak for us even though we may have very different priorities and interests. For those in the disability community from diverse communities, the discrimination that they face as people with disabilities is compounded by issues of race, gender, religious affiliation and sexual orientation.
CALL TO ACTION
The Americans with Disabilities Act became law because the disability community rallied together in an unprecedented way. We must now work together again to take the next step in advancing our rights, including the following:
· We must assure that America’s 57 million people with disabilities are able to participate fully in society by updating accessibility standards, including those related to nonvisual access by people who are blind and non-auditory access by people who are deaf or hard of hearing, to address newly developing technologies and assuring that people with disabilities have access to the modern assistive devices necessary to fully participate in American life, from hearing aids to screen readers to complex rehab technology.
· We must assure that people with disabilities have real economic opportunities by eliminating the discriminatory employment laws and rules that allow people with disabilities to be paid less than minimum wage, by creating incentives for employers for hiring and promotion of people with disabilities, by expanding customized, supported work opportunities including self-employment, paid community service, job restructuring and other flex arrangements and by fostering new opportunities for youth with disabilities transitioning from school that promote competitive integrated employment.
· We must strengthen the ADA’s integration mandate so that people with disabilities have the services and supports they need to live in their own homes and apartments in the communities of their choosing. We must end the institutional bias in the Medicaid program by requiring that every state participating in Medicaid pay for home and community based services so that every individual who is eligible for Long Term Services and Supports under Medicaid is guaranteed their federally protected right to a real choice in how they receive services and supports. We must reform the services and support systems that are now based on arbitrary medical or governmental labels to remove conflicts with the principles laid out in the ADA and assure that people with disabilities have the opportunity for full integration by developing and funding service and support approaches that promote the cross-disability and “most integrated setting” concepts that underpin the ADA.
· We must assure that people with disabilities – including those with chemical or electrical sensitivities – are able to access the full range of affordable, accessible and integrated housing options in the communities of their choosing. We must assure that all newly constructed, federally assisted single family homes and townhouses include basic accessibility so that these homes are not being built to exclude people with mobility disabilities.
· We must end our broken and arbitrary system of guardianship and substituted decision making, in accordance with Article 12 of the UN Convention on the Rights of Persons with Disabilities. For too long, the legal capacity of people with disabilities who require assistance with their finances and/or healthcare or who have expressed desires inconsistent with those possessed by their family members have been permanently stripped and denied to them. By putting in place a stronger infrastructure for supported decision-making, our community can facilitate the provision of support where people require it while not requiring a loss of legal capacity as a pre-condition for receiving such support. Additionally, we must work to restore the legal capacity and rights of the many people with disabilities who currently suffer under a system of guardianship with no acknowledgement of, or recognition for, the preferences of people with disabilities independent of their guardians.
· We must assure that the lives of people with disabilities of all ages are equally valued, protected, cared for and preserved as the lives of nondisabled people. Healthcare providers must always communicate with persons with disabilities including through interpreters and other auxiliary aids and services to ensure equivalent healthcare services. Healthcare providers must never use perceived quality of life judgments, the cost of care, or other factors to overrule the decision to receive life-sustaining healthcare made by a person with a disability or their authorized surrogate. Healthcare providers must also zealously provide suicide prevention services for people with disabilities of all ages that are equivalent to the suicide prevention services they provide for nondisabled people. As such, we should never encourage or provide the means for any individual to commit suicide.
· We must assure that violence in any form against people with disabilities is not tolerated, and the prosecution and sentencing for homicides of people with disabilities must be treated in the same manner as homicides of people without disabilities. With the recent addition of disability as a protected class under the federal hate crimes statute, federal investigators and prosecutors must work to bring cases against those who take the lives of people with disabilities because of their disability, particularly when the perpetrators are a member of the victim’s own family. We must assure that adequate funding is provided to support programs that assist people with disabilities who are victims of crime, including training for first responders, the creation of accessible shelters, and victim rights programs. We must ensure that the justice system is accessible to people with disabilities, using the ADA as a tool to support restorative justice. We must develop strong working relationships between the disability community and the justice system to address violence against people with disabilities.
· We must assure that the constitutional and civil rights of people with disabilities of all ages are safeguarded, particularly with respect to self-determination and direct communication. It is critical that these safeguards are in place regardless of the individual’s actual or perceived capacity to make and communicate their own decisions. People with disabilities should not be subjected to forced treatment – including forced medication and hospitalization, and disability should never be used as a reason to diminish or remove our rights as parents.
· We must protect children with disabilities from the use of aversives (painful stimulation used as negative reinforcement), as well as seclusion and restraints in schools by establishing strong, comprehensive national standards, an effective enforcement mechanism and the involvement of the disability community on effective alternatives for positive behavior change.
· We must protect and vigorously enforce accessibility requirements in the Help America Vote Act so that every American can vote privately and independently and so that poll workers have the training they need.
· We must create a bipartisan Congressional Task Force on human genetic technologies and disability rights to ensure that research and the results of research on these technologies include the voice of people with disabilities.
· We must confront and condemn organizations that speak about people with disabilities without us. Too often, organizations run without the voices of the people they purport to serve lobby policymakers to deprive the rights of people with disabilities, silence the voices of organizations run by people with disabilities and place their own ideologies and financial self-interests before the real needs and preferences of our community. Policymakers must acknowledge the necessity of hearing the voices of organizations run by and for people with disabilities as the primary stakeholder in policy discussions about disability, and people with disabilities must have substantive involvement in making the policy decisions that impact our lives. Finally, we must expand and support with funding the disability-led peer support and advocacy organizations that truly empower people with disabilities instead of channeling funds into outdated medical model organizations.
MOVING FORWARD
Since 2008, leaders from the organizations that make up the National Disability Leadership Alliance have developed strong working relationships with each other. We understand the power our community has by working together more effectively on a common agenda. We are preparing detailed recommendations that propose administrative and legislative approaches to achieve the goals we describe above. We are also expanding our national community by organizing teleconference calls to use them to promote greater understanding of these issues, to explain how we are all impacted by them, and to explore strategies to work together to achieve the necessary changes.
As we celebrate the 23rd anniversary of the signing of the ADA, excitement is already building and planning has already begun for the quarter century anniversary. Today, we call on policymakers to work with us to achieve this vision so that – on the 25th anniversary of the Americans with Disabilities Act – we will not just be celebrating disability rights victories from a quarter century earlier, but heralding a new day in our movement.
***
National Disability Leadership Alliance (NDLA) is a national cross-disability coalition that represents the authentic voice of people with disabilities. NDLA is led by 14 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.
The NDLA steering committee includes: ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Association of Programs for Rural Independent Living, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition for Mental Health Recovery, the National Council on Independent Living, the National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and United Spinal Association.
This week, people with disabilities across the country are celebrating the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA). This was the first comprehensive federal civil rights statute protecting the rights of people with disabilities. The ADA established that people with disabilities have equal opportunity in employment, state and local government, places of public accommodation, and telecommunications.
Despite the ADA’s promise of equal opportunity for people with disabilities, it is clear that more work must be done so that people with disabilities are to be valued as equal citizens and welcomed in all aspects of American life. Today, far too many people with disabilities are forced to live in institutions, forced to receive unwanted treatment, denied programs and services, or to be paid less than minimum wage. On a regular basis, our civil, constitutional, and parental rights are disregarded or stripped away.
Our lives and expertise are not valued equally – with dire consequences. Healthcare professionals refuse to communicate with us, overrule the decisions we make or those made by our authorized surrogates; law enforcement and the courts too often fail to treat those who kill people with disabilities the same as those who kill nondisabled people, particularly when an individual has been killed by a family member.
Our very freedom of movement can be deprived and our rights stripped from us on the basis of arbitrary and capricious decisions about our capacity. Furthermore, the voices of people with disabilities are frequently ignored in favor of parent and provider organizations that speak about us, without us. Policymakers have ignored our expertise about our own lives, issues and desires, instead of allowing providers, academics and family members to speak for us even though we may have very different priorities and interests. For those in the disability community from diverse communities, the discrimination that they face as people with disabilities is compounded by issues of race, gender, religious affiliation and sexual orientation.
CALL TO ACTION
The Americans with Disabilities Act became law because the disability community rallied together in an unprecedented way. We must now work together again to take the next step in advancing our rights, including the following:
· We must assure that America’s 57 million people with disabilities are able to participate fully in society by updating accessibility standards, including those related to nonvisual access by people who are blind and non-auditory access by people who are deaf or hard of hearing, to address newly developing technologies and assuring that people with disabilities have access to the modern assistive devices necessary to fully participate in American life, from hearing aids to screen readers to complex rehab technology.
· We must assure that people with disabilities have real economic opportunities by eliminating the discriminatory employment laws and rules that allow people with disabilities to be paid less than minimum wage, by creating incentives for employers for hiring and promotion of people with disabilities, by expanding customized, supported work opportunities including self-employment, paid community service, job restructuring and other flex arrangements and by fostering new opportunities for youth with disabilities transitioning from school that promote competitive integrated employment.
· We must strengthen the ADA’s integration mandate so that people with disabilities have the services and supports they need to live in their own homes and apartments in the communities of their choosing. We must end the institutional bias in the Medicaid program by requiring that every state participating in Medicaid pay for home and community based services so that every individual who is eligible for Long Term Services and Supports under Medicaid is guaranteed their federally protected right to a real choice in how they receive services and supports. We must reform the services and support systems that are now based on arbitrary medical or governmental labels to remove conflicts with the principles laid out in the ADA and assure that people with disabilities have the opportunity for full integration by developing and funding service and support approaches that promote the cross-disability and “most integrated setting” concepts that underpin the ADA.
· We must assure that people with disabilities – including those with chemical or electrical sensitivities – are able to access the full range of affordable, accessible and integrated housing options in the communities of their choosing. We must assure that all newly constructed, federally assisted single family homes and townhouses include basic accessibility so that these homes are not being built to exclude people with mobility disabilities.
· We must end our broken and arbitrary system of guardianship and substituted decision making, in accordance with Article 12 of the UN Convention on the Rights of Persons with Disabilities. For too long, the legal capacity of people with disabilities who require assistance with their finances and/or healthcare or who have expressed desires inconsistent with those possessed by their family members have been permanently stripped and denied to them. By putting in place a stronger infrastructure for supported decision-making, our community can facilitate the provision of support where people require it while not requiring a loss of legal capacity as a pre-condition for receiving such support. Additionally, we must work to restore the legal capacity and rights of the many people with disabilities who currently suffer under a system of guardianship with no acknowledgement of, or recognition for, the preferences of people with disabilities independent of their guardians.
· We must assure that the lives of people with disabilities of all ages are equally valued, protected, cared for and preserved as the lives of nondisabled people. Healthcare providers must always communicate with persons with disabilities including through interpreters and other auxiliary aids and services to ensure equivalent healthcare services. Healthcare providers must never use perceived quality of life judgments, the cost of care, or other factors to overrule the decision to receive life-sustaining healthcare made by a person with a disability or their authorized surrogate. Healthcare providers must also zealously provide suicide prevention services for people with disabilities of all ages that are equivalent to the suicide prevention services they provide for nondisabled people. As such, we should never encourage or provide the means for any individual to commit suicide.
· We must assure that violence in any form against people with disabilities is not tolerated, and the prosecution and sentencing for homicides of people with disabilities must be treated in the same manner as homicides of people without disabilities. With the recent addition of disability as a protected class under the federal hate crimes statute, federal investigators and prosecutors must work to bring cases against those who take the lives of people with disabilities because of their disability, particularly when the perpetrators are a member of the victim’s own family. We must assure that adequate funding is provided to support programs that assist people with disabilities who are victims of crime, including training for first responders, the creation of accessible shelters, and victim rights programs. We must ensure that the justice system is accessible to people with disabilities, using the ADA as a tool to support restorative justice. We must develop strong working relationships between the disability community and the justice system to address violence against people with disabilities.
· We must assure that the constitutional and civil rights of people with disabilities of all ages are safeguarded, particularly with respect to self-determination and direct communication. It is critical that these safeguards are in place regardless of the individual’s actual or perceived capacity to make and communicate their own decisions. People with disabilities should not be subjected to forced treatment – including forced medication and hospitalization, and disability should never be used as a reason to diminish or remove our rights as parents.
· We must protect children with disabilities from the use of aversives (painful stimulation used as negative reinforcement), as well as seclusion and restraints in schools by establishing strong, comprehensive national standards, an effective enforcement mechanism and the involvement of the disability community on effective alternatives for positive behavior change.
· We must protect and vigorously enforce accessibility requirements in the Help America Vote Act so that every American can vote privately and independently and so that poll workers have the training they need.
· We must create a bipartisan Congressional Task Force on human genetic technologies and disability rights to ensure that research and the results of research on these technologies include the voice of people with disabilities.
· We must confront and condemn organizations that speak about people with disabilities without us. Too often, organizations run without the voices of the people they purport to serve lobby policymakers to deprive the rights of people with disabilities, silence the voices of organizations run by people with disabilities and place their own ideologies and financial self-interests before the real needs and preferences of our community. Policymakers must acknowledge the necessity of hearing the voices of organizations run by and for people with disabilities as the primary stakeholder in policy discussions about disability, and people with disabilities must have substantive involvement in making the policy decisions that impact our lives. Finally, we must expand and support with funding the disability-led peer support and advocacy organizations that truly empower people with disabilities instead of channeling funds into outdated medical model organizations.
MOVING FORWARD
Since 2008, leaders from the organizations that make up the National Disability Leadership Alliance have developed strong working relationships with each other. We understand the power our community has by working together more effectively on a common agenda. We are preparing detailed recommendations that propose administrative and legislative approaches to achieve the goals we describe above. We are also expanding our national community by organizing teleconference calls to use them to promote greater understanding of these issues, to explain how we are all impacted by them, and to explore strategies to work together to achieve the necessary changes.
As we celebrate the 23rd anniversary of the signing of the ADA, excitement is already building and planning has already begun for the quarter century anniversary. Today, we call on policymakers to work with us to achieve this vision so that – on the 25th anniversary of the Americans with Disabilities Act – we will not just be celebrating disability rights victories from a quarter century earlier, but heralding a new day in our movement.
***
National Disability Leadership Alliance (NDLA) is a national cross-disability coalition that represents the authentic voice of people with disabilities. NDLA is led by 14 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.
The NDLA steering committee includes: ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Association of Programs for Rural Independent Living, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition for Mental Health Recovery, the National Council on Independent Living, the National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and United Spinal Association.
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