Tuesday, March 1, 2011

For Those About To Die, We Salute You

There was a movie that came out in 2009 called “The Box.”

According to the Internet Movie Database (IMDb), here’s the movie’s storyline:

Norma and Arthur Lewis, a suburban couple with a young child, receive a simple wooden box as a gift, which bears fatal and irrevocable consequences. A mysterious stranger delivers the message that the box promises to bestow upon its owner $1 million with the press of a button. However, pressing this button will simultaneously cause the death of another human being somewhere in the world, someone they don't know.
It wasn’t a great movie, but the premise was interesting and raised some profound questions about one person benefitting from the death of another.

As shocking as it may sound, the Colorado system of funding and services for individuals with one or more developmental disabilities has its own version of “The Box.” If you are a frequent reader of my blog, you may be aware that there is a substantial waiting list for adults in our State who qualify for funding for services, but who aren’t receiving any funding.

What you may not know is that the only way for an adult to move off of that waiting list is through attrition. In other words, in order to receive funding through the State for services, someone else who currently has a funding resource must either move out of the State, or die.

You read that right. Currently, the State has no appropriations or way of funding to get anyone off the waitlist. Or, for that matter, for any emergency situation (such as an adult with a developmental disability living with parents who find they are no longer able to care for their child), or even for situations that we know are going to occur (such as a child transitioning from foster care services to adult services).

Does it really make sense to have a public policy that essentially says one person must die before another can receive a benefit? I can’t think of any other publicly funded institutions that have similar draconian requirements. Prisons don’t accept new prisoners only when another is released or dies. Utility companies don’t require one house to stop receiving electricity before a new house can start. Schools don’t try to ensure that every kindergarten class has the same number of students starting each September as graduated the previous May. Those systems would be practically impossible to work around.

And yet, that is exactly the system those of us in the developmental disabilities field face.

Those of us in the developmental disabilities field operate because there is a public consensus policy that the services we provide benefit communities. None of our services are an entitlement. Everything we do is optional – if public consensus policy changed then we would no longer be in business. But as long as that consensus policy exists, can we really say that it is a reasonable policy to require those waiting for services to wait until someone else dies before they can benefit as well? Is this really a path we want to stay on?

The number of people waiting for services is growing by leaps and bounds. There is no way for us to catch up to their needs using attrition as the way to manage the demand. The time to change is now.

Then again, what do I know?


  1. My son died in 9/09. He was about to receive a Children's Extensive Support (CES) slot. One of the first things that I thought of after his death was "at least another child will move up on the waitlist." A friend whose son was on the waitlist noted that her son went up a number on the waitlist. We both cried.

  2. Robin
    I was concerned about the stark nature of this post, but I felt it needed to be stated out loud. Thank you for your sincere and honest comment.

  3. As a parent of an 18 year old on the waiting list for Adult services, I continue to be amazed at how many "involved" citizens are unaware of the situation here in Colorado. I seem to spend an enormous amount of my "social" time with friends, neighbors, people I meet about this.

    I keep hoping by "spreading the word" that at some point, I will hear of some really cool idea to begin figure out how to remedy the situation. But at least I am reaching a few that didn't know-- and I mean they really had no clue!-- which is always dumbfounding to me. In the meantime, my husband and I do our best to keep a positive outlook on things and the wonderful gift our daughter is in our lives.

  4. We have promising news that the Colorado Legislative Joint Budget Committee has recognized the need for addtional resources for adults waiting for services in Colorado. With that promise we hope to see 161 additional adults receiving services during the next fiscal year.
    Let's keep our fingers crossed.