Banding Together

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.

Small Change

Early in April, Mayor Bowser presented her “DC Values in Action” budget proposal for the 2018 fiscal year, which boosts funding for schools, housing and infrastructure but overall keeps a tight lid on funding increases even though the District is in extremely good shape financially.  In part this lack of ambition is because of the council’s decision three years ago to direct budget savings toward tax cuts rather than toward spending on D.C.’s neediest residents.  The D.C. Fiscal Policy Institute is proposing a “pause” in this approach and calls on concerned organizations to sign this letter to D.C. elected officials:  https://tinyurl.com/kcacw8y.

In line with the mayor’s priorities, the Department on Disability Services (DDS) has presented a steady-state budget representing only a 1.4% increase over the 2017 approved budget.  It’s a businesslike proposal that provides for continuation of core services.  Here is Andy Reese’s testimony which he presented at the April 25 hearing on the DDS budget: https://tinyurl.com/kcmv5kh.  You can view the entire hearing before the Human Services Committee on the D.C. council website, www.dccouncil.us.  I was out of town on the 25^th, but yesterday I submitted my written testimony - https://tinyurl.com/ld8ytcb – which expresses concern (as did others) about the continued failure of the mayor and the council to rectify the continued exclusion of developmentally disabled people without an intellectual disability from eligibility for waiver services.  Questioning by committee chair Brianne Nadeau on this subject, and Andy Reese’s response to her, focused exclusively on the cost issue, but here we are facing a budget surplus, so If not now, then when?

Andy told the committee that creating an Individual and Family Services waiver – focused on services with a lighter touch than under the present waiver - will lay the groundwork for plans to extend eligibility for Medicaid supports to the broader population of citizens with developmental disabilities in D.C.  DDS is currently focused on amendments to the current waiver which it will present to the federal CMS (see my page on acronyms for explanation) for approval in August.  (Incidentally, here is today’s Power Point presentation on the proposed amendments - https://tinyurl.com/lppupr6  - and comments are due back to DDS by May 21.)  Once this is done, DDS will finally turn its attention to developing the IFS waiver, which has long been in the works and will probably take years before it has CMS approval.  The way I see it, by the time the IFSS waiver can show a track record of lowered costs to “justify” expansion of Medicaid eligibility, another five years at least will have passed.  Meantime, folks with autism and other developmental disabilities in need of supports, along with their families, will simply be fending for themselves. 

It’s obvious that this issue doesn’t have priority for elected officials at this time.  Personally, I think it’s high time for local organizations such as Quality Trust (QT), the Developmental Disabilities Council (DDC), the Georgetown UCEDD and Disability Rights D.C. to get organized to push DDS on this, because things are simply moving too slowly for those who are outside the system.  Lip service is no longer enough.  And yes, I’m on the QT board and recently named to the DDC, so both will be hearing my views on this subject.