For those who are unfamiliar with the National Disability Leadership Alliance (NDLA), here’s the description from the website:
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 the United Spinal Association.
Originally created as the Justice For All Action Network, over the 2011 Martin Luther King Jr. holiday weekend, members of the steering committee held a retreat to determine the future of the network. The group formalized the network, adopted the new name and tagline, and adopted operational guidelines.
As indicated in the description above, NDY is one of the national organizations that leads the alliance.
We’re proud of our part in the Alliance and in the Statement on the 23rd Anniversary of the Signing of the Americans with Disabilities Act:
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.
The statement includes a Call To Action, asserting how we in the disability community must work together to assert our rights. Below are the action items that will be of the most interest to people passionate about NDY’s issues, but I urge people to read all the action items, as the are all vitally important.
• 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.
Please stay tuned – there is a lot happening these days.