The bond between siblings is unique and lifelong. From childhood through adulthood, siblings help each other grow, build confidence and independence, and make everyday decisions. When your sibling has a disability, your role may grow beyond that of a traditional sibling relationship – you might be their advocate, supporter, and ally.
Siblings Support Each Other Throughout Their Lives
As a sibling, you can offer a different perspective from your parents or other trusted adults. You might:
- Make sure your sibling is able to choose what they want to do and is being included.
- Help your sibling to access and understand information.
- Help explain different options to your sibling.
- Help others understand how to communicate with your sibling and serve as a model.
The Importance of Communication
People with disabilities communicate in many different ways. Not being able to speak with words doesn’t mean a person has nothing to say. Your sibling may use gestures, pictures, or a communication device. As their sibling, you can help them communicate in the way that works best for them and encourage others to speak with them directly and respectfully.
Formalizing Your Relationship
Later in life, if your sibling wants you to assist them in a more formal way, supported decision-making may make sense since you have already spent years building a foundation for this type of relationship. If they choose, you can continue to assist your sibling to be independent through a formalized arrangement detailed in a document called a supported decision-making agreement.
What is Supported Decision-Making?
Supported decision-making (SDM) allows a person with disabilities to make their own decisions. It is an alternative to guardianship. Supported decision-making is flexible in how it is applied from individual to individual and even how it is applied to the same individual over time.
A person using supported decision-making identifies what types of decisions they want help with. This might include decisions related to where and with whom they want to live, what services, supports, or medical care they want to receive, and where they want to work. The person with disabilities chooses people they trust to help them understand, make, and communicate those decisions. These trusted people are called “supporters”. Supporters may include trusted friends, relatives, neighbors, co-workers, providers, volunteers, or community members.
Through a written supportive decision-making agreement, the person with disabilities legally designates which supporters will help them make which decisions.
If your sibling asks you to help support them in a formal way:
- Do you and your sibling work well together or do you fight and disagree a lot?
- What kind of support does your sibling want and are you able to provide it?
- Example: They want support with money management. Ask: are you good with budgets?
- How does your sibling want to be supported and are you able to do so?
- Example: They use American Sign Language. Ask: are you able to sign? Can you help your
sibling communicate and express their opinions to others?
- Would a formal supported decision-making agreement make sense at this time?
In addition to a supported decision-making agreement, your sibling may want to consider using a healthcare proxy, power of attorney, and/or advance directive. For more information about these visit drcnh.org/issue-highlight/supported-decision-making.
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