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!
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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.
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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.
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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.
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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.
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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.
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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.
