Thanks from The Arc to all of the families and self advocates who came out in force over the last two weeks of the legislative session to advocate regarding the Medicaid waiver language in the budget bill.
It is a wonderful feeling to have legislators come up and say, “I heard from a family today,” or “I am getting a lot of concerned phones calls from families on this issue.” The importance of personal stories can never be overlooked.
Yes, during the legislative session I am at the State House nearly every day. I am meeting with legislators and staff and helping to strategize throughout the session; but, it is the personal stories that legislators quote on the floor, talk about in conversations, and discuss in caucus that make the difference.
I realize it must be hard to open up your private life and discuss with complete strangers the struggles your family goes through. I realize it must be hard as a self advocate to talk to strangers about your fears and your needs.
When I talk with families I always stress that no one should be intimidated by legislators. They are people just like us. They are teachers, farmers, nurses, doctors, lawyers, business men and women, etc; but few have a background that allows them to fully understand the issues facing people with intellectual and other developmental disabilities. While they may be an expert on the legislative process (and it is important to have a basic understanding of the process), when it comes to discussing the impact of public policy and what will work and what may cause harm, it is families and self advocates who are the experts. That can never be denied or ignored.
I am so grateful that so many people rose to the challenge the last ten days of the session. We certainly would be far worse off then we are if families had not spoken out. Legislators who have never been engaged in our issues approached me with questions and gave support. Many looked forward to seeing the “public” in the hallway in the dreary days leading to the end of the session.
I was also moved by the support I received from my peers in the hallway, the other lobbyists. Nearly every sector or industry has a paid lobbyist representing them at the State House. The words of encouragement from other lobbyists and statements such as, “Yours are the issues that really matter; mine are minor in comparison,” show that there really is a lot of support for strong services and programs for people with intellectual and other developmental disabilities.
We have a strong network of self advocates and families that need to remain involved – not just when there is a crisis, but at all times; it absolutely makes the legislative process better and stronger.
So again, THANK YOU!
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