VOR visit and lobbying experience

For those of you who receive a copy of The Gazette by mail, this post is a bit of a preview of something you'll find in the next issue. It was written by PHA member and supporter Kathleen Miller after an interesting trip back East. Thanks for reporting back, Kathleen.

This year at VOR’s Washington DC initiative I was lucky enough to be joined by my daughter, Molly Dillon. We met on Friday and began with hearing reports from other states, many of whom are having similar pressures to those we experience. I spoke about how our recent bill, which was to allow DD individuals in the community to use SDC as an emergency placement rather than go to jails or other unsafe placements, was squashed by DDS.

Many of the families from Lanterman were there and there was staff from Lanterman as well. It was fun to talk with them but sad to hear their concerns as well as those of families from other states. The shining example of a program that does work is in the state of Virginia. There, the state program not only provides housing for those who need it, but also acts as a resource center for those living in the community. That wonderful vision was one we tried to copy here at SDC before DDS made it clear that they would withhold support from anything that made positive sense for SDC. I briefly considered a move to Virginia.

Much of what I heard was twofold:

1. There is an attack on families as the primary decision maker for their DD loved ones. This thinking has many sides. People First, a group that at first glance seems positive, is quick to lump all DD in one basket and maintains that DD individuals should be their own decision makers. This is great for those who have the capacity but for many who need support making life’s tricky decisions, this does not work as well. Many DD are often easy to manipulate or else totally unable to make any kind of decision on their own behalf. If families are not allowed to decide for those individuals then lawyers and politicos and vendors will be all too happy to step in, often while maintaining that the DD individual is choosing for himself! HR 1255 is a bill that attempts to limit lawyers’ voices in place of family. It allows family to be informed and opt out of class action lawsuits that attempt to close all developmental centers. Please call your federal legislator and ask for his or her support of this bill!
2. There is a massive nationwide effort to close all developmental and state run facilities. We here in California are but one of many in the crosshairs of those in opposition. With money as tight as it is, things are likely to get worse before anything gets better.

I appreciate the opportunity to go to Washington, DC and speak on behalf of families. It was good to meet with others who stand with us and will join in our quest to preserve needed services for our loved ones and our voice to speak out on their behalf!
~Kathleen Miller