The Person-Centric Theory of the Universe

I’ve been feeling nostalgic recently.

Not for the glory days of my youth, which were mostly spent ski jumping and listening to Three Dog Night.

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Nope, I’ve been nostalgic for the days when self-determination was the buzz and self-directed services was the practice for those with intellectual and developmental disabilities (I/DD). Some 15-20 years ago, there was big push in our field for self-determination: putting resources in the hands of the people who were in the best position (meaning closest to the individual receiving services) to determine how to best use those resources. And with self-direction, this meant the individual, or the family and loved ones, were in control of how funds were spent.

And do you know what? It worked. In fact, I’d argue that it was the best use of resources I’ve seen during my decades of working at Imagine!. Families knew exactly how much they had to spend each year, and were armed with the necessary knowledge to direct the funding wisely. Money was rarely overspent and never “reverted” back to the State. Decisions were made at the closest, most local level possible.

It would have been great for the people in service if it had continued. Of course, it didn’t. You may ask, “why?” From my point of view, the disintegration of the self-determination model came from a lack of trust. In order for a self-determination model to succeed, there has to be a level of trust that the families and the individuals making the decisions about what services they need are knowledgeable and informed. That is the sort of trust that needs to be continually cultivated.

Unfortunately, around 2008, that kind of trust was in short supply. It was determined at the Federal and State levels that there needed to be more “accountability” for how funds were spent; not accountability to the individual being served or to the outcome of those services, but for the funds themselves. Funds were replaced with units. I suppose that makes sense on the surface, but the results were entirely predictable. Control moved from the person needing service to State administration. The move to a fee-for-service funding model and the corresponding rationing of services that came with it meant that those in service received fewer services customized to their needs. Imagine going to the doctor with a broken leg and being told, “We can’t address your leg completely but we do have some time to look at your wrist.”

That’s the world we operate in now, and we at Imagine! have made it work to the best of our ability. But simultaneous with this shift away from the self-determination model, there has been a strong move to promote Person-Centered Thinking from the Federal level down to the local level.

I’m probably going to get some flak for what I am about to say, so let me start by saying that I’m not opposed to the concept of Person-Centered Thinking.

However, I am baffled by the fact that we took the control away from the very people resources are intended to help due to accountability (which, by the way, could have been built in) and replaced it with a conscious effort to think about it instead. Let’s see … on the one hand we had self-direction, and on the other hand we have a conscious effort to think about if you had self-direction, what would you do? And this is progress?

I don’t know the answer to the question above, but I don’t feel great about the path we seem to be taking. There are more efficient and effective ways to fund and deliver services to individuals with I/DD. They have been demonstrated to work and accountability can be built. I just wonder if we’re willing to cultivate the trust necessary to make them work.

Then again, what do I know?