Opinion | HB 5485 Will Give People With Disabilities A Voice

by Danielle M. Middlebrooks, The Arc Connecticut

For decades, people with disabilities and older adults in Connecticut have often been excluded from making decisions about their own lives. Many have lost fundamental rights like decisions about where they live, how they spend their money, or what medical care they receive.

It’s not because they were incapable, but because our system failed to offer meaningful alternatives. The Arc Connecticut, and our Supported Decision-Making Coalition partners including, organizations like the Connecticut State Independent Living Council (CTSILC), Disability Rights Connecticut, The Connecticut Legal Rights Project, The Connecticut Council on Developmental Disabilities and countless advocates, believe there is a better way.

Under HB 5485, An Act Concerning Supported Decision Making, people with disabilities will be helped to make their own decisions with assistance from trusted supporters, like family members, friends, or professionals. Rather than removing a person’s legal rights, SDM provides the necessary tools and support needed to understand choices, weigh options, and make decisions. It recognizes something we all know to be true, everyone relies on support at different points in their lives.

In many ways, SDM formalizes what families have been doing for years, offering guidance while respecting an individual’s voice. The difference is that SDM preserves autonomy and dignity, instead of court-ordered control.

Guardianship and conservatorship can be necessary and even lifesaving in certain circumstances, and families should always have access to them when truly needed, but the consequences of relying too heavily on these means are profound. They should not be the first, or more likely the only solution. When used unnecessarily, guardianship and conservatorship strip individuals of rights and limit independence and self-determination.

When people lose decision-making authority, they often lose opportunities for employment, relationships, and community participation. We have heard stories from many individuals and families who want support in decision-making. They want systems that build skills and confidence, not ones that assume they are incapable or have no voice.

Too often, guardianship and conservatorship remain the default response, even when less restrictive options would better serve the person. Not only is this about rights, but it is about quality-of-life.

Research and lived experience consistently show that people with disabilities do better when they are empowered to make decisions about their own lives. Supported decision-making promotes self-determination, strengthens community living, and aligns with the principles of the Americans with Disabilities Act and the landmark Olmstead decision, which affirm the right to services in the most integrated, least restrictive setting.

That is why more than half of the U.S., including New York, New Hampshire, and Rhode Island have passed laws recognizing SDM as a legitimate alternative to guardianship and conservatorship. These states have acknowledged that people thrive when they are supported, not replaced, in decision-making.

As an organization dedicated to advancing inclusion and protecting the rights of people with intellectual and developmental disabilities, The Arc Connecticut strongly supports expanding the use and understanding of Supported Decision-Making across our state. This includes educating families, judges, attorneys, educators, and service providers; ensuring Supported Decision Making is meaningfully considered before guardianship and conservatorship; and investing in the community supports that make informed decision-making possible.

People with disabilities are not problems to be solved. They are individuals with preferences, goals, and the right to shape their own futures. Supported Decision-Making does not eliminate the need for help, rather it ensures that help enhances independence instead of replacing it.

Connecticut has the opportunity to lead by fully embracing Supported Decision-Making and HB 5485. We urge policymakers and the broader community to reaffirm a simple but powerful truth: with the right supports, people with disabilities and older adults can and should direct their own lives.