Preserve Self-Determination

The Olmstead Sub-Cabinet is charged with a momentous task – to ensure that all Minnesotans have access to lives of their choosing. The issues are complex and involve coordinating systems statewide. The state is also charged with finding cost-effective, reasonable plans for change. I have deep respect for those who are dedicated to the task of achieving these sometimes seemingly contradictory objectives.

Yet to date, something is missing in the language of the Olmstead Plan for Minnesota, and in the plans that will impact thousands of individuals and their family members throughout the state.

That missing language has to do with choice. What if we added just two words to the mission of Minnesota’s Olmstead Plan? Minnesota will be a place where people with disabilities are living, learning, working, and enjoying life in the most integrated setting they choose. 

If we are to achieve the spirit of the Olmstead decision, we must set aside our own agendas and preferences to allow people to choose the lives they want to live. We must recognize and challenge our own assumptions: If I choose to live by myself, does that mean everyone would choose to live alone? At what point is it appropriate for adults with disabilities to choose to live somewhere besides with their family of origin? And, most importantly, “Who Gets to Decide?”

We must be honest about our intentions: Who will have access to services and supports, and who will not? What can we afford? How do we balance serving the MOST people, while also ensuring the most vulnerable, those with the highest needs and their families, can access services and supports?

It’s not about housing. It’s about respect.

Housing is at the core of how we all choose to live. There isn’t nearly enough affordable housing, not for the general population, and not for people with disabilities. Without adding the numbers of people with disabilities who aren’t in the numbers, the United States has affordable housing for 25% of those in need of it. Currently in Minnesota, we need at least 600,000 more units (statistic from Mary Tingerthal, Housing Commissioner, Affordable Housing Summit, June 2015). Funding to address additional housing development does not exist. Many people with disabilities have very low incomes and even fewer options for affordable housing. Section 8 voucher waiting lists open once annually at best.

Our political and bureaucratic response to this increased need is to eliminate and create limitations on housing options: current statutes require a 25% cap for people with disabilities who receive services living together; moratoriums on expansion ensure that the number of congregate settings, whatever their size and regardless of need or desire, don’t increase; existing “beds” are being reduced; rules limit who and how many people can live together in settings of the person’s choice. These rules and restrictions create barriers for a vulnerable population, preventing individuals from having real choices.

From the observer’s deck, the message in current statutes and the Olmstead Plan is this: We don’t really want to give people choice. We say people can choose, and we judge them when they do. We’d prefer to tell them what choices are appropriate. We want to eliminate or curtail options we don’t like. Those actions fly in the face of the spirit of the Olmstead decision.

The original Supreme Court decision leading to the Olmstead decision was about choice of individuals to live a life of their choosing. The implementation of the Minnesota Plan must be about choice as well. Limiting choices based on our own ideas is a sign of disrespect for the person. Telling people where they have to live, regardless of how right we think we are, is wrong. It was wrong in the institutional era, and it’s wrong now.

With the great variety of choices available, let’s make sure we are looking for the best possible outcomes. Let’s make decisions from a place of security and confidence rather than out of fear. We have indeed come a long way, and we should stay on that path, preserving choice and dignity.

Removing barriers, not creating them.

We are familiar with a phrase attributed to physicians – “First Do No Harm.” That directive applies here too! We must be careful in our legislation that narrow and restrictive policies don’t undermine the very purpose of the original Olmstead decision. We must remove artificial barriers created by rules and regulations that limit individuals’ choice about where and with whom they can live. Instead of regulating size and location, ensure that people are being treated as they need to be: like every other citizen. Who would want their housing options dictated to them? We must ensure that we are listening to individual hopes and dreams, not holding tight to our images of what people want.

Let’s be sure in moving forward with the Minnesota Olmstead Plan that we hold true to the original spirit of this ruling. Let’s hold true to choice – that those with disabilities may pursue a life of their choosing, not ours. Let’s provide lives of dignity and respect for every person.