Flirting With Responsibility

Having been in the field of serving individuals with intellectual and developmental disabilities (I/DD) for more than 30 years, I have watched with interest how the definition of “success” in our services has changed over the years, especially residential services.

When I first entered the field, it was generally agreed that successful outcomes meant that the individuals we served were able to live separately from their parents upon reaching adulthood; sort of the expectation we have of all young adults. Residential services were set up to support the philosophy that as adults, individuals with I/DD were able to live their own lives separate from their families. The most common living situations for adults with I/DD living away from their parents or other family members at the time were group homes – anywhere from two to ten individuals living together. While this was certainly a positive move away from institutions, the end result was still congregate settings where people lived together on the basis of their disability instead of common interests.

As time went on, and the costs of supporting both the transition into and maintenance of an adulthood lived separately from family changed, so did the definition of success. Having younger adults with I/DD stay with their families as long as possible became the goal, and having individuals living separate from their families as adults become a “last resort” option, essentially considered an unsuccessful outcome. For those individuals who weren’t able to stay with their families, the preferred residential setting became host homes – an attempt to recreate a family type setting outside of the real family.

It should be noted that during this time of trying to create a family type residential setting for those adults who couldn’t stay with their actual family, the idea that the actual families could or should be paid to provide services was considered absurd in many circles. So we were paying to reconstruct something that we were unwilling to pay for when it occurred naturally.

Recently, however, that attitude has changed as well. The family care model, where family members are paid to provide services for their loved one with an intellectual disability, may very well become the predominant model, and the model that is considered the most successful possible outcome from a cost standpoint (at least as it pertains to their living situations).

Now, I’m not using this post to offer my opinion as to what I think the definition of a successful outcome for our services should be. I have strong opinions on that, but that is for another post at another time.

Instead, I’d like to point out what has been missing throughout this changing and evolving view of how residential services should be delivered, and what constitutes successful outcomes from those services. That missing element is establishing responsibility for determining success. We have shifted our definition of services and successful outcomes several times without once tackling a key underlying issue – who is ultimately responsible for designing and defining those successful outcomes?

Is it families? Is it the government? Is it the courts? Is it the community? Is it the providers?

Without the answer to that one question, the question of how services should be delivered and how we measure if they are successful is almost impossible to answer. We can’t deliver services that work if we can’t establish who is ultimately driving the design of those services. It reminds me a little bit of those old electric football games. You can set up your players in a certain formation, but once you turn the game on and the board starts to shake and vibrate, you don’t actually have responsibility for, and therefore control over, what happens next.

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We’ve been flirting with this question of responsibility for too long. It has made it difficult to design services and to implement them in a way that is beneficial for all involved. I have to wonder how we can move forward productively, creating services and defining outcomes that are meaningful, without the thoughtfully addressing the question of responsibility.

Then again, what do I know?