It is wonderful to see disability organizations working together with advance care planning leader Respecting Choices.
Some disability advocates expressed concerns that certain Respecting Choices decision aids (regarding medical nutritional and breathing support) were incomplete and biased or misleading, and could result in uninformed decisions and harm to people with disabilities, including loss of life.
Once these concerns were expressed, the leaders of Respecting Choices recommended that representatives from Respecting Choices and these disability advocates work together to consider improvements to these two decision aids. This work was complicated and required an over two-year effort to form a balanced committee and exchange information and perspectives, as well as considerable back and forth dialogue concerning language to ensure effective communication.
The result of this work and collaboration, however, has been the development of two revised decision aids that address the concerns of both the disability advocates involved and the person-centered standards of the Respecting Choices program.