Welcome to our blog! -- the place to be to learn about growing up with pediatric brain injury and a wonderful little girl named Sarah, as told by Sarah's Mom!

End The Wait Now! Campaign

Ordinarily, I try to focus on the positive in this narrative -- but this time, it's not possible. For starters, I'm filled with sighs and "OMG! . . . how could I have . . .?" laments for having failed to save my work that I was developing in Notepad to post to this blog. I didn't, I encountered a fatal system error, everything was lost, and this will be a very short post.

It originates in my frustration over the past several days to locate any timely, accurate, complete, and RELEVANT information at my State or County levels regarding help needed for Sarah. Already my husband and I had earlier reached our health plan's out-of-pocket expense (or "catastrophic coverage") limit for Sarah's medical and dental care. Meanwhile, however, the State had also determined her to be eligible for Medicaid as her insurer of last resort, even to pay toward necessary in-home care.

So in pursuit of what we hoped to help with our continual hemorrhage of money, it seems, I expended hours on the phone with State and County service providers. I also drilled down on their Websites, searching for information to better equip myself to navigate the maze. My goal was to "connect" her service determination, which was acknowledged to be "in the system," with receipt of a bona fide check or a funded service or item that she needs.

Well, despite the polite promises of those I talked to or the fine-sounding "Mission Statements" on their Websites, it turns out it was all shameful puffery. At best, good intentions, perhaps, but nothing more. The bald facts are these, and they aren't pretty (as I found out elsewhere on my own initiative):
As of September 2009, there is a waiting list of just over 19,000 individuals with severe developmental disabilities, including cerebral palsy, intellectual/cognitive deficits, autistic spectrum disorders, neuromuscular diseases and more in the State of Maryland! Many of them are in crisis situations, and 94% are in need of at least one service immediately.

Developmental disabilities are those that are significant, life-long, and begin at birth or during childhood (through the age of 21). BUT, while Maryland is a wealthy State, with the lowest rate of poverty nationally, it ranks 43rd for monies spent for assistance to this very same population. For the 22,000 affected individuals currently receiving help of some kind, State appropriations for the 2010 year were recently slashed $30 million, with additional budget cuts expected this month.

On its face, it seems clear to me that it's the "least among us" who are the most vulnerable and who are bearing disproportionately the cutbacks in State and local services due to our struggling economy. So my questions are two. First,"Oh c'mon! Why don't the government agencies involved just put on their Websites straight out 'Abandon hope all ye who enter here!' and instruct their people to be honest on the phone about a crisis situation." And second, and more importantly, "Why don't our State legislators attach some urgency to this and work to build out system capacity to end the multi-year wait?"

For more information, including personal stories, pictures, and videos, or to advocate on behalf of all those in Maryland with severe developmental disabilities, go to "End the Wait Now!" campaign, a targeted effort by the Developmental Disabilities Coalition.


ferfischer said...

Oh - how I hear you. If MD is 43rd - I think CO is 48th. If that makes you feel any better. We're lucky to have found a waiver that didn't have a wait list - but most are 3-5 years long. Blech!