What's Your Backup Plan?
Lately I’ve been in a number of states as they work on amending waivers and program offerings for people with intellectual and developmental disabilities. In each location, we seek to move systems from “care-taking” models to services that encourage and support employment and independent or supported living options. I’m concerned about her health and well-being. If she needs to come and live with me one day, my concern is that we can co-exist in our living space and that she’ll listen to me when it comes to the serious stuff.”
Many individuals in these systems still live at home and many are in facility-based employment or day settings. In conversations or public comment forums in which we participate, what we hear most about from families is concern for the safety of their family member and their exposure to risk if they transition to new services and supports.
At dinner a few weeks ago with a good friend and fellow “single woman of a certain age,” I relayed these conversations and it caused us to consider our own safety and level of risk. Frankly, we wondered how many days it would be before someone found us if we suddenly dropped dead in our own apartments? I work from home and travel each week and so does she. Eventually in each of our cases there would be a round of phone calls from people wondering why we missed a meeting or a flight, but who would eventually show up at our doors? Both of us have constructed backup plans for other people, she for the consumers she plans for, and me for Mia. But what about us? What is our backup plan?
It was supremely ironic when I realized that Mia is my backup plan, because she calls me every morning at 8:00 am and every night at 8:05 pm (I get called after Ruthie!). A couple of missed connections and she would be telling somebody I wasn’t answering. It occurred to me I need to cascade my backup plan from these regular calls.
There is a tension and balance between safety and risk. We learn to navigate it as we grow up, hopefully guided by people who love us. Most of us are allowed to keep broadening our circles of engagement, testing our boundaries, and when we retreat, it’s usually because we have determined our own limits. For many people we support, we have decided for them what the boundaries and limits of engagement are, even as adults.
Changing this calculus is hard for parents, and it is also hard for providers who have financial and legal accountability. But in starting from an assumption of risk and vulnerability, we have limited the ability of individuals to engage in the community of support that would keep them safest.
Here’s a question one of our consultants asked in a workshop I participated in with a team preparing to roll out significantly more liberating home and community-based choices for people. They are anticipating resistance from parents. She said, “Let’s assume you are safe. Now what would you like to do?”
Of course we cannot abdicate our responsibility to keep people from harm. But once we have established reasonable safeguards, let’s ask the question. “Now, what would you like to do?”
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