Below is a video we created at the Hermansky-Pudlak Syndrome conference. The Enhanced Healthcare Proxy is a project of the HPS Network. Many of us with HPS have a lot of doctors in different places. It's possible to want someone to help you make medical decisions, or help you deal with insurance, or pharmacies etc. but still be completely capable of making your own medical decisions. Yes, you can waivers etc. - but honestly, it's a real pain. There's a need for something between guardianship and a health care proxy that only comes into effect when you've lost the capacity to make decisions.
In my case, if my support system has to wait until I've lost capacity to be able to talk to my doctors and be informed - it's too late! HPS is complicated sometimes. I take a lot of meds every day. It's too much to come into and be truly informed only when things are bad!
Often remedies involve legal fees that many in our community simply can't afford. (Thankfully, there's a legal clinic that works with my doctor's office, but that's not common place.)
So, the HPS Network, (thanks to Donna Appell) has taken up the Enhnaced Healthcare Proxy project. Right now, it's in the New York Assembly. We hope to eventually take it to other states.
The idea is giving support and care shouldn't be hard - especially if that support and care is wanted. The below video will quickly explain the need.