Advocating for yourself or a HD+ family member is perpetual challenge. Just accept that you are going to be in it for the long haul. Prepare yourself by building and sustaining a network of support.
Support comes in the form of people providing needed skills and services. It also comes in the form of being able to get timely answers to your questions. And finally it comes in the form of someone simply listening to you and understanding what you're going through.
There are two excellent articles prepared by Marsha that I suggest that you read in order to have a solid foundation self-advocacy.