For the nearly forty years I have been a professional supporting people with intellectual and developmental disabilities (IDD), a debate has been raging. Do people possess something like ownership of their supports and services? For the folks living in their own apartments and working or volunteering with staff assistance, it would seem like people with IDD sit at the head of the table. There is backslapping and lots of jargon about person-centeredness, but who are the players at the table? And what are their motives? How does the system balance the need for continuity and consistency with people’s unique preferences? How is it then that supports and services work? And, when they don’t, how is it that alternatives become new realities?

At the center of the complex web that produces where and with whom a person with IDD getting services lives, works, and plays is the DC Developmental Disabilities Administration (DDA) within the DC Department on Disability Services (DDS). DDS provides funding and oversight of a vast network of private providers. Medicaid, which is administered by the DC Department of Health Care Finance (DHCF), is billed for the direct supports people rely on. Because Medicaid does not pay for the costs of rent, food, and certain provider overhead, the District meets this gap through contracts called Human Care Agreements (HCA) through which local dollars are used to pay providers for those expenses.

There are approximately 2500 people in the DDS “system.” Close to 960 of those people (38%) live in apartments through a service called “supported living.” The money to pay rent on those apartments is contained in the HCAs. There is a cap on how much can be spent on rent for each person. The provider typically becomes the lessee. The people who live in the apartments do not. Not only is this a missed opportunity to create credit histories – the first step toward autonomy for the people who live in the apartments – but it also leads to a significant imbalance. If you don’t like your provider anymore, you can’t transition to a new one without moving to another apartment currently leased to your new provider.

Our advocacy experience with people and their families when life changes require service changes has taught us how services “really work.” In fact, without that knowledge, our ability to help people transition would be greatly reduced. Even with our vast experience, we consistently encounter a central failing of our system: lack of urgency and transparency. Assisting someone with a move or change of provider often requires up to a year to accomplish even when we identify conditions that involve serious questions about a person’s health and safety. From the person’s perspective, their wishes and needs are known from the beginning and rarely change over the course of the transition. So, it’s logical for people, their families, and advocates to ask why it takes so long to do simple things?

The short answer is there are no simple things. The long answer is that the way we do things makes simple things complicated. The opaqueness that surrounds the behind-the-scenes negotiations between providers and DDS only invites more questions. As people, their Service Coordinators, and providers meet to discuss the person’s options, a parallel set of negotiations occurs between DDS and at least one and typically multiple providers. Once those negotiations are concluded to the satisfaction of DDS and the provider(s), a transition can happen. That fact in and of itself should make it clear who is at the head of the table. It’s not the person.