What is Supported Decision Making (SDM)?
Historically, people with disabilities lived in institutions. Now, there is a movement that is shifting away from institutions and group homes to living integrated in the community. The Support Decision Making concept helps people with disabilities have more control over their life and focus on creating supports to help them make informed decisions for daily living needs. It's not much different in how we all use this practice when talking with others before making important decisions. It's just someone may need much more advice and supports to help them under stand all the aspects of their decision. There are times when the person may need others to make a decision for them because they are unable to understand it fully. These people are referred to as "substitute decision-makers."
Why is Supported Decision Making important?
In the past, people with disabilities often times had no say in how they were able to live their life or have control of what procedures were done to them. This approach is a way for them to retain some legal capacity and express what is most important to them, with the help of others work towards achieving their aspirations to live their best life. When people with disabilities are given choices and assistance with understanding how to make those choices in a way they can understand, their behavior often improves because it alleviates frustration of people making decisions for them. Supported Decision Making helps people manage risks and problems which is necessary for building self-determination and self-esteem. This includes living with as much independence as they have the ability to have, gainful employment and fulfilling relationships in their life.
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What is Substitute Decision-Making? Where Support Decision Making supports the person's decisions. Substitute Decision-Making is giving authority to another person if the person with a disability isn't able to make decisions for themselves, for example, someone with a severe intellectual disability.
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This is why it's sooooo important to develop self-advocacy skills at a young age and give someone the skills to communicate (i.e. through a device, writing, typing) their wants and needs. No one wants someone else to make every single decision for them. If someone is non-verbal, it's critical to persistently try to find an alternative communication method in which they can self-advocate.
What is the difference between Supported Decision Making (SDM) and Guardianship?
The main difference boils down to the right to make lifestyle choices. It's mainly based on "consent" and "capacity" of the person with disabilities to make their own decisions. Just because someone has a diagnosis of an intellectual disability doesn't automatically mean that they can't make any decisions that affect them.
A Guardian makes all the decisions about the person's life. In SDM, the person has supports in place in areas of limitations that help guide their decisions can but they still make the final decision. The person can change their supports at any time but the court has to be involved if there is an issue with the Guardian or if the Guardian passes away.
SDM isn't formally recognized under PA law so it's a more informal practice. However, informal SDM does have relevance in the state of Pennsylvania due to a PA Supreme Court decision In re Peery. Some states are leaning away form Guardianship towards less restrictive alternatives like SDM.
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Another difference is a Guardian can make a decision of the person's needs without being challenged but in Supportive Decision Making, the person has a direct influence on decisions with the support of others who can help guide them towards a good decision. For example, if the person has to make a financial decision, a support can be a financial planner that is part of the team or an accountant. Just because a person makes a poor decision doesn't mean they are unfit to make any decisions. Everyone needs to learn from failures to grow.
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Every situation is different. For some, Guardianship makes more sense to those individuals who need higher assistance. It's also a good idea to try least restrictive supports first and work back towards more support until you find a balance in the persons abilities and the things that are too hard to do.
How is SDM different from a Durable Power of Attorney? Durable Power of Attorney identifies the person who will be a substitute decision-maker if a person becomes incapacitated. A Supported Decision-Making Agreement identifies the people and tools that will support the person in making their own decisions and it goes into affect as soon as it's signed.
How does it work?
It begins with having informal conversations around what the future is going to look like for the person with a disability. Helping a person learn decision-making skills with choices that affect their immediate and distant future. If it's helpful, you can document what is discussed so there is a written record called a Supported Decision-Making Agreement that everyone can refer back to.
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Think about:
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What skills have the already mastered?
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What type of job would they like to prepare for?
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What living arrangements would they prefer?
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What are their thoughts about having a significant other and/or children?
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How will they manage their money?
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What will they be able to do with their free time?
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To what capacity will they be able to make important decisions on their own?
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Click here to download a copy of options about various decision making needs by www.supportmydecision.org
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What major areas does the person need support in?
Think about the major areas where the person with disabilities needs support. This includes finances, healthcare, education, work/college, life plan (living with as much independence as possible) and legal which includes advocating for their rights.
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Then break the tasks down by focusing on what tasks they can do and where they need help in those categories. Do they need support in research/gathering information when making decisions? Do they need support in understanding the information? Do they need help in understanding the consequences of their decisions? Knowing the answers to this simple framework, you can figure out the types of willing people who's strengths can fill in the gap.
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Click here to download a free copy of a Supportive Decision Making Checklist.
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What are some challenges with Supported-Decision Making in PA?
Besides not being legally recognized, SDM can be challenging for the support network when the person with a disability won't accept help. This can compound to the point that the person can succumb into a state of neglect or their safety is compromised. This is a relatively new concept so there isn't many models in place to take ideas from. Another potential challenge is that the support network isn't legally tied to the person so you are depending on someone's free will which can be like building a foundation on sand. Circumstances change, people's priorities change and this can have a negative impact on the person with a disability to have consistent support within their network.
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What is the most important skill to teach someone who needs Supportive Decision Making?
Self-advocacy is invaluable whether you are fully verbal or non-verbal. All people with disabilities should have a way of communicating their wishes and needs when they are going through the transition into adulthood, whether it's verbally or through any type of communication device.
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Begin creating a community around the things that the person needs the most support in. Do you have friends and/or family members will be to supportive? If there is very few people, then look into therapists, teachers, caregivers, students, neighbors and other community people who have developed a great relationship with your child over the years. How much time and effort are they willing to give? Where can they provide support?