In my 45 years of working with the disability community, the decision-making capacity of people with intellectual or developmental disabilities has been hotly debated. How you feel about this topic spills into voting, managing one’s financial affairs, and sexual expression.
Depending on where people stand on this issue, I’ve witnessed guardians, state officials, and program staff:
- Encourage or restrict visitation
- Obtain various resources so adult children could develop more self-advocacy skills or alternatively been controlled in their daily routine
- Encourage dating or restrict dating
- Encourage community travel or restrict any steps to develop safety skills in the neighborhood
Decision making is central to so many aspects of life, and yet it can be a lesser priority given our busy lives. How much do we teach “typical” kids about making decisions? Do schools have this as a course? As a rule, it’s something we pick up through our daily lives. But if our child or young adult has a more limited daily routine what he or she learns will likewise be limited.
Recently two trends are having a positive impact on decision making. Schools are required as part of transition to build self-advocacy training into the curriculum. Secondly in legal circles, “supported decision making” or SDM is touted as an alternative to guardianship regardless of a person’s level of impairment. Guardianship is a very blunt instrument. I’ve witnessed adults with a disability prevented from interacting with other family members due to a guardian’s control.
In a recent article, a professor from the University of Melbourne says SDM will give voice to those with cognitive disabilities. “The right to decision-making affects the rights to liberty, equality and political participation…These rights are not contingent on a test of functional capability for people without a cognitive disability.”
In Massachusetts, there has been an active project on SDM since 2013 (learn more here). There is much to learn and do in this area. Let’s prioritize decision making as we do other aspects of daily life.