Decision Making

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.



  1. Thank you for your thoughts. I want to give another perspective on Guardianship. For parents of children with severe autism, guardianship comes after years of high stress, sacrifice and learning to live out the truth that only love matters. Guardianship can be an insulting instrument to parents who have given up their whole lives to enable their children’s voices to be heard. We often are their translators and interpreters. We exist in a high alert state and our eyes are forever trained on the dangers ahead because this world is not a comfortable place for our children. Please take care to see us as the valuable partners we are.

  2. Wonderful article. I heard about shared decision making at a Shared living/AFC conference and was very impressed by the work done in Massachusetts. I hope the education of this practice becomes more widespread. I am an AFC case Manager; I see all types of guardianship and some without guardianship practicing their own type of shared decision making without any court interventions.

  3. Catherine Carpenter, M. Ed.

    In my previous professional work with babies and young children who had multiple sensory and cognitive challenges, I made sure that every one of these learners (including the young babies) is helped by family and other professional providers to make and communicate important decisions. This requires adult caregiver willingness to ‘read’ non-verbal expressions and very subtle attempts to communicate that every infant-adult learner is naturally indicating. Inconsistency in recognition, shaping and responding to non-verbal infant-adult communication involving choice or desire undermines the learner’s ability to feel valued and to fully utilize his/her rights to choose and to participate in decision-making opportunities throughout their lives.

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