Hi, All!
I know, to paraphrase
Shakespeare in this post's title in such a common way seems unfair, but this past month of playing “Whack-a-Mole” between understanding ‘what
is meant’ and ‘what is’ has been a confusing adventure… and I know I am not
alone. Since my daughter’s birthday
is coming soon and I am in an area that is not yet under NC Innovations, I was
thrown into the usual yearly planning frenzy in a gear that I try to rarely
pull out…
Yes, we are talking the gear of 2nd-3rd Overdrive…;)!! I wasn’t even sure I had that in me anymore
to be honest… and leaving me with the definite knowledge that at some not too distant future
point I will for sure sputter out.
My arms
flailing as I turn page after page of info, fingers tapping on the keyboard
hunting latest answers… hoping I have addressed all the foreseeable concerns to
make it through the transition and beyond… and bless my daughter’s team, they
hung in there with me… altogether we worked for that one wonderful, elusive
main goal… yes, irony to be sure, as all
that kinetic energy poured into helping my daughter be as stable and to have as
much potential energy as possible during the transition and hopefully beyond…
for her to be able to navigate as best she can so she can continue work towards
her life goals.
I wonder how
many of you out there feel similarly… we
work so hard to scan the horizon, plan long-term, put appropriate goals
into place, support the team effort to pull together, follow-up with needed
pieces that multiply by the hour, phone calls, emails, be the 24/7 back-up, ever
the while the long-term becomes more and more short-term, etc… all to help our loved ones & others have
lives in the community with opportunity to develop friendships, support the
causes important to them in their own ways, work on their own life goals, and
yes, even to dream, to take reasonable risks, to achieve, to fail, to learn, to
grow, to build that elusive something special even… resilience, community bonds
of true interdependence, etc. Okay, so I
dream, too… and I know I am not alone in that either…;). Without
that vision of opportunity to work towards, how will we know how far we as a
society can go?
So, with
that said, my travels this past month
have highlighted a similar “Whack-a-Mole” pathway tumbled with the importance
of the election. I followed the
trail of various statements by those aspiring for our votes and sharing his/her
vision of what NC could be… and the state and others sharing ‘what we believe in’ for the NC System
of Care for people with disabilities, which truly ring of heart toward greater
purposes… these belief statements that I do feel oftentimes are heartfelt and
reflect what ‘we want to be.’
Of course,
what we see on the ground is where our great visions have failed along “implementation
way.” This leaves us in the land of “reality
check” and represents ‘what we actually
are.’ In the recent national UCP ranking
for Medicaid services for people with intellectual/developmental disabilities
reveals, NC ranked 44th,
meaning only 7 states rank worse than NC in helping people with intellectual / developmental
disabilities to be included in community living. (Note: my math is not off…they included the
District of Columbia as a separate area making the total of 50 states and DC =
51…for the quick list & full report link go to: www.disabilityscoop.com/2012-state-medicaid-rankings/
)
How does this happen?
Great intentions, wanting to believe the best in ourselves, mixed with
practicalities of program needs, staffing issues, clinical oversights,
liabilities, funding, and throw in one of the biggest wild cards of all… politics. Decision-makers, at the stroke of a pen, can
cause havoc through unintended consequences or worse, with intent, in an overly
complicated system.
Now, what is the requirement of such important
decision-makers, you ask? Certainly,
they must be well-versed in understanding people with disabilities, their
needs, their lives, especially the roughly 2% who have intellectual / developmental
disabilities to the extent that they are solely dependent on the state to
receive services, surely EVERYONE knows they are served first at the table, we
would NEVER leave them out, etc… No?!. Then,
it comes as such a shock when reality hits and waiting lists, penetration
rates, and other such indicators are revealed, and we are faced with the hard, sad truth that what we want to be is not what
is.
When the only true requirement of these
decision-makers is popularity from the masses, it stands to reason our
issues will continue. It is hoped by
many that popularity represents the confidence of the people in the elected
person that she/he can and will do a good job overall for every voter need in
NC during her/his term of office…. And generally, this elected person wants to
earn your vote again in the next term… so
exactly how are our most vulnerable population with long-term needs represented
in this short-term-minded machine on either side of the aisle?
So, as they
say, to change is easy, but to improve is hard…
To truly
improve system of care in NC, improvements
not only come from within the system but also have to come from those outside
the world of disability… from our public, our politicians… elected
officials charged with the care of our collective population… they become
the top decision-makers in our state as elected by we, the people of the state,
through our votes. When they make recommendations,
they should also have to look in the mirror to see if they are holding true to
the values they want to uphold in their own recommendations to others, meaning they should be sure to include and
genuinely listen/heed the advice of the same cross-section of expertise they
know is needed when making decisions affecting people with disabilities in the
state at the more local management levels.
And improvements need to come from we,
the people of our state, who need to hold accountable our decision-makers by
being informed, voting, and participating as fully as we can. Are we going to go for the funniest ad, the
most popular opinion, the best looking, the this, the that… or are we going to
get to the soul & heart of what needs to be done for long-term success, and
can we make that the real conversation that holds overall attention for longer
than 8 seconds, the new average attention span time of Americans online? (ref: http://www.statisticbrain.com/attention-span-statistics/)
In summary,
I put these thoughts out there during this election season and on Trick or
Treat day in hopes of making tomorrow better.
As we cast our ballots for our
champions at the decision-making tables of our nation, our state, & our
communities, I suggest we might ask three questions not only of those seeking
our vote but also of ourselves:
1.
Who will demonstrate ‘level of care’ by actively doing their best to participate and help others participate in finding quality solutions?
2.
Who will be present at the table when
input is needed and key decisions are being made?, and
3.
Who will follow our state motto, ‘to
be rather than to seem’ on key issues to move us forward from where we are?
Treat (to
be) or Trick (to seem/not to be), now that is the question… and one I will be pondering as I cast my vote and as I look in the mirror working to become the person I always want to be...
Anna…
p.s. also, thinking of friends, family, all those near and far, who are dealing with the effects of Hurricane Sandy during this difficult time...
