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.
Almost all humans who live into old age become disabled and age-related disability also receives the protections of the ADA for obvious reasons, doesn’t it? I will need a wheel chair parking permit soon.
Violations of the ADA are civil rights violations with a private-right-of-action remedy but the denials of medical life-saving and/or life-extending treatment (implied as a right of the disabled in the ADA) as non-beneficial and medically futile are upheld by the state courts as NOT discriminatory and generally dismissed out of court. Is this true?
If this is true, is this because the 1991 Patient Self Determination Act (passed into law right after the ADA became law) prohibits discrimination in vague terms but unilateral, covert and overt Do Not Resuscitate Code Status that shortens life by limiting life-extending and life-saving procedures is NOT considered a civil rights violation under the PSDA. There is no private right of action if the prohibition of discrimination is violated.
No case law has been made since 1991 that addresses the “discrimination” that is prohibited in the PSDA. Unilateral DNRs appear to be treated merely as ethics violations that are mediated by in-house medical ethics committees who have a serious conflict of interest when CMS reimbursement protocols so often deny reimbursements for errors, mistakes, non beneficial overtreatments and the complications thereof.
Obviously, the failure to prosecute or to treat the prohibited discrimination in the PSDA as a civil rights violation with a private right of action is an intentional effect of the PSDA as implemented by the States that is confirmed when one realizes that “the claim by or on behalf of Theresa Marie Schiavo for the alleged violation of any right” had special treatment by the US Congress in 2005.
Professor Thaddeus Pope in his article in The Journal of Clinical Ethics entitled “Legal Briefing” The New Patient Self-Determination Act” Summer 2013, further indicates “Some Legislators may have been concerned that this law might imply that other patients were entitled to litigate PSDA violations. Accordingly, the Schiavo Act specifically provides that “nothing in this Act shall affect the rights of any person under the Patient Self-Determination Act of 1991.”
Apparently, the Congress in 1991 indicated in the force of the law of the PSDA that there is no civil right of Medicare/Medicaid patients and other patients to medical treatment to extend life and no civil right to refuse medical treatment and shorten life and die —but the PSDA did indicate that patients do have a legal right under the doctrine of “informed consent” and the “liberty” provisions of The Constitution to refuse unwanted medical care when hospitalized that will shorten their lives; shorten their suffering, and save money for Medicare and the private insurers.
Both the concept of “medical futility” and “fiscal futility” were problems for physicians and hospitals before the ADA and the PSDA were passed. Was the PSDA together with the Hospice/palliative Medicare entitlement law primarily an effort to bypass the problem of “medical futility” which has to be very narrowly defined under law with due process protection for both patients and the physicians/hospitals. Were all of the goals of the PSDA primarily a means to prevent over treatment of patients for profit and to save money for Medicare and the private insurers when patients elected to die at home or in residential nursing homes on Hospice/Palliative Care?
I personally think the Justice system should look into the epidemic of unilateral, default, covert and overt DNR code status that is a direct response to the reimbursement protocols of CMS and the private insurers that are a direct response to the problem of OVER TREATMENT of elderly/disabled Medicare/Medicaid patients by the for-profit suppliers of Medicare treatment, services and supplies.