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thefamilycaregiver.org or 1-800-896-3650
They are a non-profit organization dedicated to the education, support and advocacy of Family Caregivers and they do a lot of political representation and action for us. It is free to join and a terrific group.
One glimmer of hope is Sen. Ron Wyden (OR) who is trying to pass a bill that would allow physician house calls for shut-ins and the diabled.
The major problem with being heard is that caregivers are generally too tired and busy to become "political." However, it does not take too long to write a letter. Every state has a website where you can make your wishes known. Many organizations that are in danger of being cut have "form letters" that you can use as a template for your letter.
I would highly recommend speaking up.