Saturday, September 24, 2016

Live and Learn

As I did around this time last year, I want to use this near-anniversary of my blog to look back and take stock.  What are some of the lessons I’ve learned over the past two years, my son’s first two years receiving disability supports from DDA and my first two years writing this blog?

There are plenty of acronyms in this posting so check the Acronyms and Organizations page!

-          When I started this blog I thought I had a lot of answers, answers to questions that others must be asking about how the D.C. Medicaid-waiver system works and how to work that system.  I thought I was a trailblazer, but I was wrong.  A lot of people have come before me, and are alongside me now.  They’re just advocating in different ways.  I’ve also learned a lot from families who have more experience with RSA than with DDA.  So I’m humbler now, but still very proud and happy when I learn my blog has helped someone better understand their choices or motivated some new folks to speak out.

-          I began my blog believing Laura Nuss, then director of DDS, was dragging everyone – DDA staff, existing providers – into the 21st century kicking and screaming.  There was some truth to that, but it’s more complicated.  The more I understand about the way things work, the better I can see some of the other actors – DHCF, the mayor’s office, the council, and above all, the federal-level Center for Medicare and Medicaid Services – that constrain and drive many of DDS’s actions.  I’ve also gotten to know a lot of dedicated folks working inside DDS and various organizations, and many are highly motivated to do the right thing and push for improvements (some have family members with disabilities themselves).  So now I see not just a big puzzle, but a lot of jigsaw pieces.

-          This doesn’t mean that everyone is equally well intentioned, or that change isn’t needed.  Those who work closely with me know I’m very determined, demanding in fact, about where I see room for improvement.  I talk often with others about their perspectives as well.  Even with the progress of the past few years – and there has been a lot of progress - over and over again DDA demonstrates that the right hand doesn’t know what the left hand is doing, and this causes wasted effort and extra stress and strain for provider organizations that already are stretched thin.  And the providers have immense difficulties of their own, in particular with internal coordination – in part, though not totally, because of high staff turnover.

-          And speaking of turnover - I’ve also learned over the past couple of years that the world of disability services in this city can get pretty incestuous.  Even though I understand why it happens, it worries me a little each time that someone moves from a provider agency into DDS.  It makes me wonder whether they were lobbying for the job for a long while, and whether that colored their decisions and performance.  More broadly, sometimes I feel things get too “cozy” in our small, city-based system and I wish there were more organizations and individuals bringing independent voices to the table.

-          I try to be careful about this myself.  Once you “raise your hand” and start coming to meetings, advocating, and testifying, you start getting invited to every event and onto every board, committee or working group that’s formed.  There are a lot – a dizzying number - and although they’re all worthy efforts, the way they all relate to one another can be very unclear.  Beyond that, I weigh my interest in participating, advocating, and staying informed against the need to stay independent so I’m not seen as a mouthpiece for DDS.  Because, let’s face it, 90% of the time it’s DDS that’s convening all these groups and meetings.  This is my problem to resolve, but I hope I do a good enough job in this regard.

-          And then there’s me as a parent.  Because I am.  And quite a lot of the advocacy I’m doing day to day is personal, on behalf of my son.  I look for the right balance in that regard, too.  I look for the balance between advocating for him, and pushing him to advocate for himself.  I gauge where and when I should be involved directly and when I should be relying on his support agencies to step up - because, as we all know, we won’t always be here.  And what I’ve learned is that while DDS and providers are looking to be family-centered as well as person-centered nowadays, there isn’t yet a good system for how to make that real.  There are no natural entry points for family involvement in the ISP process and most documents are shared through electronic systems to which families don’t have access, so you just have to keep asking for hard copies and have your say the best you can.  It’s messy for everyone, even with the best of intentions.

And maybe that’s the thought I should end on. Like many others, I was until two years ago accustomed to school-based services under the IDEA.  The world of Medicaid waivers and vocational rehabilitation is indeed a completely different planet, and “messy” is the best adjective I can come up with.  But that’s for those getting supports, and for those who need but don’t get them the problem goes way beyond messy.  And that may be the most important lesson of all.

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