By Marcella Schieffelin

As parents, we strive to nurture, guide, and protect our children, especially those with intellectual or developmental disabilities (I/DD). When considering their future, the Supported Decision-Making (SDM) concept can feel daunting. Unlike legal guardianship, which transfers decision-making authority to another person, SDM empowers individuals with I/DD to make their own choices with the support of trusted people. While research shows SDM fosters independence, confidence, and a better quality of life, embracing it can stir fears, including concerns about safety, societal judgment, and the unknown.

SDM aligns with a broader movement toward recognizing the rights and autonomy of individuals with disabilities. It ensures they have the support needed to make informed decisions without legal restrictions. Rooted in frameworks like Person-Centered Planning, Universal Design for Learning, and Rights-Based Approaches, SDM extends the principles of dignity, self-determination, and inclusion across all areas of life, reflecting universal human values.

Parents already support decision-making in everyday life. As parents, we ask, “Would you like the striped or polka dot shirt?” or “Do you want to clean up your toys now or in five minutes?” Parents can empower children with I/DD to participate in decisions, build autonomy, and develop problem-solving skills by adapting questions to their abilities. When considering guardianship versus supported decision-making, I asked myself the following questions: 

• How do I treat my children similarly and differently? Why?
• What can I learn from those who use legal guardianship?
• What happens if someone with I/DD doesn’t have legal guardianship?

These reflections sparked a journey of introspection, planting a seed of growth and understanding that led me to embrace SDM as a better path forward.

Our Experience with SDM

My daughter, Lilly, has been using SDM for over four years, adapting as her needs evolve. Initially, I was her primary supporter, and her older sister was her co-supporter. Over time, her support team expanded to include an Adult Advocate from The Arc, a host home provider, residential support staff, a case manager, and an employment specialist. We developed a “Memorandum of Understanding” to outline roles, responsibilities, expectations, and a Decision-Making Template to guide important decisions. Here is an example of the use of the Decision-Making Template 

This collaborative approach has allowed us to address challenges and prepare for the future, ensuring Lilly and her sister develop the skills to support each other when I’m no longer here. While SDM requires effort upfront, it leads to a more fulfilling and empowered life. Our family has found many benefits of using SDM. These include: 

• Creative and flexible
• No court intervention is needed
• Person-centered approach
• Accountability and transparency
• Trust-building and adaptability
• Empowerment and autonomy

When thinking about mitigating risks in SDM, we used the following tactics:

• Choose Trusted Supporters: Ensure they have the individual’s best interests at heart.
• Provide Training: Educate supporters and individuals on effective SDM use.
• Implement Safeguards: Use periodic reviews and oversight mechanisms to prevent abuse.
• Raise Awareness: Advocate for broader legal, financial, and healthcare recognition.
• Consider Hybrid Approaches: Combine SDM with limited guardianship if necessary.

For families thinking about SDM, we recommend: 

• Start Small: Allow your child to make low-risk decisions, like choosing meals or clothing.
• Create a Support Network: Involve trusted family, friends, and professionals.
• Use Tools and Resources: Develop SDM agreements outlining collaborative support.
• Model Decision-Making: Demonstrate how to weigh options and make informed choices.
• Be Patient: Growth takes time, and every step forward is progress.

Letting go of fear is hard, but by embracing SDM, you give your child the gift of self-determination and confidence. Trust in their potential and the power of support to guide them toward a fulfilling and independent life.

My daughter’s 17. For most of her life, I was going to do guardianship. Even talked to a lawyer a few years ago about it. Had it all planned, and then I started to have second thoughts about it. Then somebody told me “Well, they can’t vote.” I thought “Wow to take that.” We’re a very politically active family. I am taking that away from my daughter, the right to vote when we talk about politics all the time and yet I’m saying “You’re not allowed to do that.” It really started to make me rethink the whole process.

Colorado does not currently revoke voting rights for individuals under legal guardianship, but like any law or policy, this could change in the future. https://www.ndrn.org/wp-content/uploads/2023/07/Primer-on-Voting-Rights-of-Individuals-Subject-to-Guardianship-AC071223.pdf