There is such a lot of troubling news on the national front. The House of Representatives has proposed a budget for the next fiscal year that would make drastic cuts in Medicaid funding, forcing the District and other jurisdictions to make wrenching decisions about how to support those in greatest need. And the Trump administration’s budget seems to take the same approach. It doesn’t mean everything is settled since the Senate hasn’t made its budget decisions yet, but the trends aren’t good. Even on the local front, I was disappointed to learn that the D.C. council’s committee on human services (http://dccouncil.us/committees/committee-on-human-services) has made cuts in the already-lean budget proposed for the Department on Disability Services (DDS): https://drive.google.com/file/d/0B489LE-2ltOgMWxWUHJjWHNxNW8/view?usp=sharing.
These proposed budget cuts, nationally and locally, make it even more essential to make our own communities as supportive as we can for people with disabilities and their families. I’ve been a part of the planning team for D.C.’s Supporting Families Community of Practice for some time now, but this was the first year I’ve attended the national-level Supporting Families conference, in Kansas City, Missouri. D.C. was among the original six jurisdictions receiving a national grant in 2013 “to develop systems of support for families throughout the lifespan of their family member with intellectual and developmental disabilities (I/DD).” Recently, eleven other states have joined the effort, and they participated along with the original six for the conference itself, followed by a day and a half of more in-depth sessions during which states shared their experience with the Lifecourse tools (http://www.lifecoursetools.com/planning) to help people and their families with individual planning. The District’s efforts to bring local families together to develop and expand our own sense of community were highlighted in a variety of the sessions, on topics such as employment, supported decision making, and cultural and linguistic outreach.
A key aspect of the Kansas City discussions involved keeping the person’s life goals front and center, ensuring that waiver or other government supports, in addition to supports from friends, family and community, are provided within the context of the person’s own goals. With my own son’s ISP meeting coming up, and given the frequent staff turnover that seems so much a part of waiver services, we’ve worked on his Employment Trajectory (http://www.lifecoursetools.com/wp-content/uploads/Life-Trajectory-Worksheet-updated-february-2017.pdf) and his Supports Star (http://www.lifecoursetools.com/wp-content/uploads/integrated-supports-star-worksheet-updated-february-2017.pdf) to guide discussion for the coming year. We put a two-year timeline on these to make clear that everyone in his life needs to make the effort, now, to help him move ahead.
Even if you use a different type of planning tool, the point is to make sure the focus isn’t just on day-to-day supports or DDS requirements, but rather on the needs of the particular person and his or her community of support, paid or unpaid. Also, when you’re dealing with the operational side of DDS, it’s a good idea for families and friends to inject this sort of planning into discussions, since even reforms that are being pushed by the State Office of Disability Administration (DDS/SODA) can be slow to get implemented by DDS operations personnel in DDA and RSA.
Families supporting families, and even creating more welcoming communities, can’t replace all the support that some people with disabilities need, though. So I urge you to contact your ward and at-large council members – especially if they are on the human services committee – to advocate against the cuts to the DDS budget. And if, by any chance, you are a reader who lives and votes outside of D.C. – where we don’t get voting representation at the national level – please let your senators know that you absolutely oppose cuts to Medicaid, which provides essential supports to people with disabilities and others who depend on this minimal “safety net” to get by.
It’s never been a more important time for advocacy, so step up.