There are so many disability advocacy organizations and little is happening. There is so much overlap and duplication of services, it becomes confusing who is advocating for what.
- ARC- federal, state, and local
- Consortium of Constituents with Disabilities
- American association of people with disabilities
- All the diagnosis specific organizations- Autism, Down Syndrome, Cerebral Palsy, Rare Disease, blind, deaf, and the list goes on
- American Association of Intellectual and Developmental Disabilities
- National Council on Disabilities
- Diversity specific and combined with disabilities such as with the LBGTQ+ community
- National Organization on Disability
- National Disability Rights Network
- Center for Independent Living
- Disability:In
- Invisible Disability Association
- National Disability Institute
- Not Dead Yet (new one for me)
- ADAPT
This is just at the federal level. Each state has even more organizations. I did not link the organizations. Wouldn’t this spread the money thinner? If someone understands this, I am willing to be enlightened.
I am so happy to report that the federal government did pass that physicians and other medical professions are not allowed to use QALS anymore.
H.R. 485 would prohibit the use of Quality-Adjusted Life Years (QALYs) and other similar discriminatory measures in all federal programs—an expansion from the current prohibition that only applies in a limited fashion to the Medicare program.
QALYs devalue the lives of people with a disability or those with chronic illnesses to determine whether the treatment is cost-effective enough to be paid for by the federal government. The use of QALYs is a clear form of discrimination. For more information- here is the link to the bill.
Now changing mindsets will be a separate battle.