For many years, Guardianship was the “go-to” for a lot of Family Caregivers, as it was believed that adults with Down Syndrome could not make decisions on their own. Over the years, though, families started realizing that their loved ones do have the capacity to make some decisions on their own and thus, a lot of effort has been made to honor that and not have the rights of their loved ones removed. So, instead of making a bee line to Guardianship, many caregivers are searching for alternative ways of supporting their loved ones. Some of the options currently identified and employed by Family Caregivers include Adult Adoption, Durable Power of Attorney and Supported Decision Making.
What Is Supported Decision Making?
Supported Decision Making (SDM) is a process by which an individual with Down Syndrome (DS) chooses various persons to assist them to make decisions. For example, an adult with DS can choose their father to help them with medical decisions and choose a trusted family friend, who has a background in finances, to help them make financial decisions. In SDM, the person with DS is the Decision Maker and the person chosen to assist is the Supporter.
We all need help to make certain decisions in our lives, so why would persons with Down Syndrome be any different? Supported Decision Making emphasizes the right of the person with Down Syndrome to actively determine what their life looks like.
The Role of the Decision Maker
The person with Down Syndrome is responsible for:
- choosing their Supporters.
- deciding what areas they need help in. For example, education, healthcare, finances, relationships, where to live, etc.
- deciding what kind of help they need. For example, they could need help to do research and gathering information relating to a particular decision that needs to be made; or they could need help to understand information already presented to them.
The Role of the Supporter
A Supporter can be anyone… a family member, service provider, friend, neighbor, co-worker, etc…as long as the Supporter agrees to serve in this role. The job of the Supporter is to assist the person with Down Syndrome to make their own choice, not the Supporter’s choice.
The Supporter is responsible for:
- communicating to the person with DS in such a way that the person clearly understands the information presented,
- presenting all options to the person with DS,
- outlining the pros and cons of all options presented,
- allowing the person with DS to make their own decision without coercion.
Chances are the person with DS will ask the Supporter for their opinion and maybe flat out ask them what they would do in that particular situation. As a Supporter, it is fine to give your opinion if asked, however, you should emphasize to the Decision Maker that the choice is theirs to make and not yours.
Tips for Supporters:
- Be patient when listening to the Decision Maker.
- Presume competence when listening to the Decision Maker.
- Do what you can to facilitate communication between you and the Decision Maker. Sometimes this may mean using visuals, sign language, assistive technology, etc. to communicate.
- Distinguish when you are guessing what the person with DS is communicating vs. when you are clear as to what their desires are. Sometimes, the Decision Maker may not be clear in their communication or be non-communicative (this can be attributed to various things: the environment they are presently in, they may not be feeling well or up to fielding questions at the time, it may just not be a good time).
- Remember that your efforts are appreciated and your best is good enough.
Benefits of Supported Decision Making
Supported Decision Making is all about self-determination (the process by which a person controls their own life). It is built on the belief that persons with Down Syndrome should be given the opportunity to decide (as much as is possible) what is important to them, and with the help of the persons around them, set goals and work to achieve these goals to ensure that they live a fulfilling life.
Supported Decision Making supports the idea that decision-making is a skill that can be learned by persons with Down Syndrome and by making decisions for themselves, persons with DS will learn to manage and avoid risks. This in turn fosters independent living, advancements in employment, financial independence and possibly most important, self-advocacy.
Making It Work
In an effort to make SDM work, the following are recommended:
- Supporters should not assume that the person cannot make a decision now due to the fact that they failed to make the same decision in the past.
- Focus on what a person can do, not what they can’t. Making bad choices does not disqualify an individual from making decisions all together (we would all be disqualified). If needs be, contact disability agencies/foundations and see if they can assist with skill building or technical assistance to help the individual with Down Syndrome learn decision-making skills.
- Explore the use of assistive technology. E.g., Apps to remind them to take their medication or perform hygiene tasks or manage their money.
- Supporters should not assume that decisions never change. The Decision Maker will make a particular decision at that particular time under those particular circumstances. Circumstances and people change, thus decisions will change too.
- Supporters should always prepare the Decision Maker before attending particular appointments. E.g., If you are visiting the doctor about a particular issue, you can go through the information that you have so far about the issue and discuss possible questions to ask or concerns the individual with DS may have.
- Supporters should ensure that the person with DS is present at all meetings and that they do not talk over them.
- Have a Supported Decision Making Agreement (SDMA). Make it formal. The following is an example taken from “supported decisions.org”:
This agreement will clearly indicate who is a Supporter and what area each Supporter can or cannot advise the Decision Maker in. This document quickly and clearly shows professionals, e.g., doctors, that the individual with DS is using SDM.
If your family is currently employing Supported Decision Making, let us know what the journey has been like thus far. Help other Family Caregivers by sharing your experience!