Last week I attended the Disability Policy Seminar in Washington DC, the "other" Washington. The Arc of the US and five other organizations who advocate for individuals with developmental disabilities sponsored the seminar which wrapped up with a day of visits to congressional leaders in our nation's capitol.
The seminar provided fact sheets on a variety of issues. You can view them at www.disabilitypolicyseminar.org (click the General Info tab, then Attendee resources). You will find other useful information on this site too.
Here in Washington State, self advocates worked very hard and got the Respectful Language bill passed, which replaces the phrase "mentally retarded" with "intellectual disability" in all state language. In the "other" Washington they call this bill "Modernization of Disability Terminology". It essentially does the same thing at the federal level. There are two identical bills, S. 2781 (Rosa's Law) in the Senate and H.R. 4544 (Elizabeth A. Connelly Act) in the House. Contact your congressional representatives and ask them to support these important bills.
Other issues we discussed with congressional staff included thanking them for Health Care Reform, Long Term Services and Supports Provisions in Health Reform, Employment, Direct Support Workers, the 2011 Budget and Appropriations including continuing the increase in the FMAP, the D.D. Act, Education, the ABLE Act, Housing and Autism. You can learn more about these issues at the web site listed above.
Maria Cantwell was very gracious. She listened intently as Mike Raymond, a self advocate in our group, talked about growing up in Rainier School (one of our state's institutions). With tears in his eyes he told her the reason he hates the "r" word so much is because that is what the staff there would call him all the time. He asked her to please pass the bill like he helped do in our state.
It was a great trip and our group was glad to have the chance to thank congressional leaders for their work on passing the health care bill and to advocate for the programs and services most important to them.
On a final note, while we were in Washington DC our legislature at home finally passed a revenue package and a budget in the last days of the special session. Advocates for developmental disability issues were pleased that the final budget provided the funding for most of the services they were fighting to keep intact. Although the budget has not yet been signed by the Governor (where there is always the possibility she could veto part of it) you can see what was in the final budget the legislature passed as well as the bills that made it through the process at http://www.arcwa.org/leg_session.htm
Next year promises to be another difficult budget year so the time to start preparing is now. Thank you to everyone for your advocacy!
Diana Stadden
The Arc of Washington State
Advocacy Partnership Project
I'm really excited you have a blog. I'll make sure to pass it on to other families I know. Please feel free to follow mine also - primarily on autism. http://www.bluelightresource.blogspot.com Trying to get a following and create a community of parents with kids on the spectrum to gather local and national resources and provide hope to other families who devote their lives to their kiddos.
ReplyDeleteDiana,
ReplyDeleteI hope you will post a polite but opposing point of view.
HR12 55 leaves intact the system of protection and advocacy which includes litigation against facilities for human rights violations.
The provisions of HR1255
1)Provide for notice to parents/guardians of a lawsuit in which their child/family member/ward is named among the complainants.
2)Protect the choice of legal representatives of people who live in residential habilitation centers in Washington State and similar residential centers throughout the country to opt out of such class action lawsuits.
This is especially important, given the strong opposition that is brought to bear by your agency and others with similar biases against the residential centers that so many of us feel provide the highest quality of life for our wards... who, in most cases, are also our loved ones.
Your references to civil rights and ease make it sound like we don't care about our family members/wards. Of course, WE HAVE FOUGHT FOR THE RIGHT FOR THEM TO LIVE THERE PRECISELY BECAUSE WE CARE SO MUCH!
Federal dollars-tied-to-rigorous audits have, over the years, raised the standards of care and have caused it to be necessary for residential centers to provide the same rights and choices that The Arc advocates for in "community" living. Only for this reason can I agree that it might be easier in some cases for parents/families/guardians to assure high quality care in an RHC than in some community situations.
Finally, a word about why I have quotes around "community." It is because of the fact that residential centers are community resources and no less part of the community-at-large than are college campuses where students often live in dorms. Further, just as neighborhoods are often communities, so are residential centers with many of the same amenities. And just as students living in dorms on campus and people living in neighborhoods also participate in the greater community, so it is with residents of residential centers for people with dd. They participate in their greater communities, too. But someone else, trying to differentiate between people with dd, living in residential centers and others not living in them, started using "community" for those who don't live in residential centers; so we have that non-inclusive use of the word, "community." I just use quotes when using the word in this very specialized way.
Now I must be off to pick up my sister from her RHC home.
Thanks, Diana for the forum. Even though we disagree, it is good to be able to see all the various points of view.
Saskia Davis,
Sister & Guardian of an RHC resident