As July 26, the 31st Anniversary of the Americans With Disabilities Act, approaches, the National Council on Independent Living is holding its annual conference. NCIL has announced that its annual Advocacy Priorities Guide is now available, containing “specific information on the national legislative and policy priorities identified biannually by the NCIL membership.”
NCIL’s Healthcare priorities include four key areas:
- Expanding Coverage
- Prohibiting Healthcare Discrimination
- Chronic Pain and Opioids
- Opposing Assisted Suicide
Here’s the section on:
Opposing Assisted Suicide
Assisted suicide laws pose major dangers to people with disabilities. Every national disability organization with a position on assisted suicide opposes it. Many national medical organizations also oppose it. This includes the American Medical Association and the American College of Physicians. Many states have repeatedly refused to pass assisted suicide laws as well. The reasons we oppose it include:
When assisted suicide is legal, it is the cheapest treatment available. This is attractive in our profit-driven healthcare system. This is dangerous.
Terminal diagnoses are often wrong, and it is nearly impossible to know how long someone has left to live. Assisted suicide laws lead people to lose good years of their lives.
If one doctor says “no,” people can “doctor-shop” (go from doctor to doctor) until they find one who will say “yes”.
The “safeguards” do not protect people. There is no independent witness when the lethal drugs are taken. There is no real enforcement, and no one is charged with investigating. Therefore, there is no protection against abuse or coercion.
Many other pressures exist that can cause people with compromised health to hasten their death.
Evidence shows that assisted suicide laws lead to “suicide contagion,” driving up the general suicide rate.
We already have the right to good end-of-life pain relief. This includes palliative sedation, if needed. Palliative sedation uses medication to decrease awareness to relieve suffering.
In 2019, the National Council on Disability released a report on Assisted Suicide. The report examined the effect of the country’s assisted suicide laws on people with disabilities. The report found that the laws’ safeguards are ineffective. It also found that there is no oversight of abuses or mistakes. Many of those abuses have been documented by the Disability Rights Education and Defense Fund (DREDF).
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NCIL also included the following critical priorities on discrimination.
Prohibiting Healthcare Discrimination
There is a lot of discrimination against people with disabilities in healthcare. This has serious consequences, like substandard care and less access to needed services. The COVID-19 pandemic highlighted this for us. States and hospitals created new rules that discriminated against disabled people. They developed plans for “medical rationing” that determined who does and does not get treatment and care. Some disabled people were denied treatment altogether.
Black, indigenous, and other people of color (BIPOC) have died at alarming rates during the pandemic. LGBTQIA+ people and many other marginalized groups have also faced discrimination. Discrimination in healthcare has always had deadly consequences. During the pandemic, it has meant drastically higher infection and death rates.
NCIL supports strong enforcement of nondiscrimination laws. We also support new laws to address discriminatory practices. Some of our biggest areas of concern include:
- Medical equipment in clinics, offices, and facilities that is not accessible;
- Failure to communicate or provide information in accessible formats;
- Discrimination involving pressure to refuse life-sustaining treatment;
- Discriminatory “futile care” policies allowing healthcare providers to decide not to give life-saving treatment to someone even if they want it;
- Discrimination in organ transplants; and
- Quality Adjusted Life Years (QALYs). Insurance companies use QALYs to decide how much – or whether – to pay for certain treatments and services. Different disabilities and health conditions are given different number values. These are used to calculate the “value” of the treatment or service.