I Owe My Soul To The Company Store

One has to wonder: what if we didn’t rely on Medicaid, in its current form, to fund services and supports for people in Colorado with intellectual and developmental disabilities (I/DD)?

The decision to go with Medicaid in a waiver format three decades ago was primarily driven by the need for money to serve a growing waitlist, and to fund people moving from institutions to community settings. Colorado didn’t have the bucks, the Feds did. What better place to go looking than the federal government?

That decision brought a good deal of money to the table, and quite frankly, a good deal of baggage. The baggage continues to grow, and not surprisingly, doesn’t fit in the overhead compartment any more. You have to place it around your feet or hold it in your lap, and soon in your neighbor’s lap. The medical model baggage that comes with the money insists we continue to look to the person and poke and prod at various manifestations until we “heal” or “correct” or “repair” whatever disability is represented. Providers are only paid if they continue to focus on whatever a disability manifests. If the disability that manifests ever goes away, the provider might go out of business. So they continue to work on a “fix” that probably doesn’t exist. The outcome, in this case, is that the individual owes his soul to the company store.

Perhaps I’m too much of a purist. I believe we may be focused on the wrong outcome. The outcome we want is a community where having an I/DD is not the most important thing about a person, and does not get all of our attention (as currently required by Medicaid).

I have a very fundamental belief about the individuals we serve at Imagine! – that every single person who accepts services from us has something valuable to offer to our community. Key to that belief is that the community plays a role in identifying, valuing, supporting, and accepting what those individuals have to offer. We could be focusing on the community first: removing barriers, misconceptions, and demonstrating successes.

Instead, we focus on . . . well, I’m not always sure what we focus on, or why. For example, recently it was decided it is important to punish community members who fail to report mistreatment of adults who may be at risk. I don’t have a problem with this legislation, and I appreciate both the reasoning behind it and the fact that it isn’t Medicaid money being spent to encourage community engagement in services for people with I/DD.

However, I can’t help but wonder: as we move toward community rule-making of this nature, should this be the first thing we address out of the gate? Is it possible that this will actually incentivize community members to stay clear of adults who may be at risk? Will the new legislation demonstrably reduce risk or improve services? And the most important question: is this kind of rule-making really where we should be focusing our time and energy, instead of identifying, valuing, supporting, and accepting what individuals with I/DD have to offer? I hope not.

Instead of focusing on risk and/or disability, perhaps we’d be better off if our focus was on doing everything we can to ensure that the people with I/DD are successful within their community. By recognizing and strengthening natural supports (an old sustainable solution not recognized or funded in the Medicaid model), the community comes to life. Neighbors are recognized, employees thrive, and what do you know? – the cost of the support system goes down. People are just that – people who live and work nearby. Risk is reduced organically.

There remains an important element to this approach. It requires that the needs of the community are taken into account when designing services. Medicaid doesn’t fund community needs – only people’s shortcomings. If service design is based only upon the needs of the people in services, the people in services will always be in need. They will be “special” but they won’t be equal.

My purist outlook leads me to feel that just like with the term “vulnerability,” a one-sided approach to services will inevitably highlight disabilities instead of abilities. One thing is for sure, the cost of the Medicaid model for I/DD support will only rise unless a very serious adjustment is made at the federal level.

A simple suggestion: let’s carve out funds from the giant Medicaid pool specifically to support community inclusion, not to specifically address a person’s manifestations from disabilities. Let’s close down the company store.

Then again, what do I know?
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