I have put off writing about this for awhile. I wanted to wait until emotions were a little less raw and to respect a certain period of necessary grieving. During that time, I have had the pleasure of getting to know Gale Boonstra, Aaron’s mother, as she has worked diligently to turn this tragedy into opportunity. You can read more about her impressive and inspiring efforts here.
Gale’s goal is to “build a bridge for adults with disabilities to safely navigate their independence.” As I have followed her progress, and as I have learned from her during this time, I have come to a disturbing realization about myself and many others of us in this state working to provide services for individuals with a variety of intellectual and developmental disabilities. The sad reality is that we became complacent about the waitlists for services for adults in Colorado. While I don’t know of anyone who was comfortable with the existence of a waitlist, many of us (and I put myself on the top of that list) had become so used to it that we simply accepted the fact that some adults just wouldn’t receive services until their situations became desperate. Aaron’s unnecessary demise is proof of how wrong we were. The waitlist isn’t, and never has been, OK.
Now, to be fair, even before this tragedy, efforts were underway to lessen or eliminate the wait for services many Colorado adults with intellectual and developmental disabilities. Many of those efforts have their own shortcomings, however.
For example, it is true (and commendable) that the most recent budget approved by the Colorado state legislature included a significant increase in Supported Living Services (SLS) resources for adults. Unfortunately, those resources only meet part of the need, and many of the individuals waiting for services have needs beyond those which SLS resources will be able to meet.
There has also been substantial progress on the creation and introduction in the legislature of a bill to establish a plan to end the waitlist by the year 2020. While this is exciting news, I fear that so far the discussions surrounding the bill only go part of the way in truly addressing the problem. As they stand, current rates don’t really match the cost of doing business for many service providers. Furthermore, restrictions on services which are attached to much of the current funding mechanisms mean that even a person with funding might not be able to get the services that he or she truly needs to be able to navigate the community successfully. The restrictions also frequently fail to take into account the growing labor shortage among service providers or the possibilities that technology bring to service provision.
I can’t say that if Aaron had been receiving services rather than languishing on a waitlist this horrific tragedy wouldn’t have happened. I simply don’t know. But I know for certain that the fact that he wasn’t able to receive any services even though he qualified was, and is, unacceptable. And I, among many others, pretended for too long that it was acceptable. Inspired by Aaron’s memory and Gale’s drive and purpose, I pledge to never accept waitlists as part of doing business again, and I exhort my colleagues throughout Colorado to pledge the same.
Let’s not have any more stories like Aaron’s. We can’t bring him back, but we can act in such a way to ensure we are doing everything we possibly can from preventing it from ever happening again.
Then again, what do I know?
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Where were you, your CCB and the rest of the CCBs during the years-long effort to get NOEWAIT (the National Organization to End the Waitlists) started these past few years? 12,000 parents signed the petition, but not an iota of support from the CCBs.ReplyDelete
Where were you and most of the CCBs when parents valiantly tried to get Amendment 51 - to end the Colorado waitlist- passed? We didn't even have enough $$ for TV ads. I gathered many signatures and provided training classes on how to gather petition signatures. Did you or your CCBs? Or were they afraid that "Too many folks off of the waiting list would 'flood' your system?"
This bill to count who is on the waiting list and prepare a plan is nothing but a farce. I've been around this system for 45 years, and I know duplicity when I see it.
Are you going to REALLY lead the charge, or is it more and more fluff once again?