Supported Decision-Making for Families
As people with disabilities gain more independence and self-determination, families and other supporters learn and grow as well. On this page find answers to your questions, learn more about your role as a supporter, hear from other families, and find out how to take the first steps.
What is Supported Decision-Making?
Supported Decision-Making is the collection of tools and practices a person uses to gather and understand information then consider their options and choices before making a decision.
Supported Decision-Making can be used as an alternative to guardianship. Instead of having a guardian make a decision for the person with the disability, the person with the disability makes their own decisions with the help of a network of supporters..
People with disabilities may need assistance making a variety of decisions, but they do not automatically need a guardian to make those decisions for them.
A trusted network of supporters can answer questions and review options to help the person with the disability make their own decisions. Supporters are selected by the person with the disability. They can be family members, co-workers, friends, and past or present providers. The individual should select supporters who know and respect his or her will and preferences, and who will honor the choices and decisions the individual makes.
Supported Decision-Making is flexible, and can be changed to meet a person’s needs. No two Supported Decision-Making Plans will look the same; it varies from person to person.
How does the role of a parent change?
It’s important to keep in mind that “parent” and “SDM supporter” are two separate roles. Parents have a different set of responsibilities, and it can be challenging to keep the boundaries clear. All parents have long been in the role of decision-maker for their children and eventually need to transition into more of an advisor or consultant role as their child moves towards adulthood and becomes their own decision-maker.
This is a tough transition for all parents. For parents of children with disabilities, this can be even more difficult to navigate as their child might need a variety of support even in their adult life. However, the shift in mindset is not that different. Parents will gradually be moving out of the role of decision-maker as they strengthen and equip their young adult to take on that role.
Parent AND Supporter
When children are very young, parents make all the decisions. As children grow, parents offer choices and eventually ask for opinions and consider preferences, but ultimately parents make the decisions and are responsible for the wellbeing of their children. During early adolescence parents often begin to build on decision-making skills and offer more opportunities for children to make decisions and mistakes. This shift towards becoming a supporter or advisor is gradual and can seem natural or invisible. Building this awareness is important to help parents and young people prepare for the transition to adulthood.
Becoming the Decision-Maker
Young adults need to learn decision-making skills and have opportunities to practice (and fail). During this time parents should support their young adult to make choices, express opinions and think about the results of their choices. Giving options and choices within limits while exploring the results together helps young people take a more active role in their life. This transition can be challenging for all families, including those who have children with disabilities, but is a necessary path to adulthood. Children with disabilities may need more or different help and parents will need to think of ways to make adjustments and accommodations so they learn decision making skills.
Parents Become Advisors
All parents start in the role of decision-maker for their children and eventually need to transition into more of a consultant or advisor as their child moves towards adulthood, and becoming their own decision maker. Parents will need practice just as much as young adults in their new role. Practicing Supported-Decision-Making can provide the framework everyone needs to navigate this new path.
Changing the Mindset
Parents share their fears and the pressure they felt to get guardianship, before learning another way. Listen as Joan and WC open up about what they learned and how they’ve grown as their sons pursued Supported Decision-Making.
This video highlights one parent’s journey from guardian to Supported Decision-Making supporter featuring Joan.
This video reflects on Supported Decision-Making, an alternative to guardianship, from a family’s perspective featuring WC.
Frequently Asked Questions
Learn how you can support your family members and loved ones in the process of Supported Decision-Making.
Not yet. However, even if there is not a law about Supported Decision-Making in your state you can still use it. Supported Decision-Making is simply an agreement between people about assistance with decision making. You do not need a court to make or use a Supported Decision-Making agreement. There are many other civil rights laws that would help to ensure a person can get the accommodations they need through a Supported Decision-Making agreement.. In states where there are no Supported Decision-Making laws, the biggest challenge is usually making sure others understand what Supported Decision-Making is and how it works for you. We have tools to help you inform the people in your life about SDM.
We all do! Supported Decision-Making is the typical process most people use to make decisions and it can be used by many people regardless of their disability. This includes people with age related cognitive impairments, mental health disabilities,people who use AAC and people who are regarded as having significant or complex disabilities. SDM is flexible and can include a variety of supports to meet individual needs.
Yes, but it can lead to complicated issues that the individual, the guardian, and all supporters should be aware of before using this arrangement. When there is a guardianship in place, the guardian retains the legal authority to make decisions in the areas that have been designated by the court. We don’t suggest creating a new guardianship with this intent, but it has been a helpful strategy to move towards restoration of rights.
Yes, a guardianship can be reversed and often called restoration of rights. It is usually a lengthy and difficult process that involves all of the court proceedings to create a guardianship. In many states the burden of proof shifts to the person with a disability to prove they do not need a guardian, which can be a challenge. There are many success stories but starting a guardianship with a plan to seek restoration in the future isn’t prudent or necessary. You can work to build and implement the appropriate support now.
No, each Supported Decision-Making Agreement will be different. People with and without disabilities often seek out different people for advice on different topics, so if a person with a disability asks one supporter to attend medical appointments and help explain medical information but asks a different supporter to attend service planning meetings and give advice on picking a service provider, that is fine. Some people may have one or two trusted supporters they turn to for all decisions, it is up to the person to choose what works best for them.
Yes, many families worry about ensuring a person with a disability has the support they need across their life and especially after a primary caregiver has passed away. Supported Decision-Making offers the opportunity to develop a network of supporters who will be available to assist with decision-making in the future.
Guardianship gives power to the court, not the family, to make decisions on behalf of the individual. It requires continual court involvement to make changes and adjustments, which can be costly and time consuming.
No, creating a Supported Decision-Making Agreement doesn’t require an attorney in GA (although it may in other states).
Beyond Guardianship: Towards Alternatives that Promote Greater Self Determination
Read the report published by the National Council on Disability regarding guardianship, the treatment of individuals with disabilities within the legal system, and alternatives.