Many people with disabilities need assistance making decisions about health care, life choices, and financial matters, but they do not necessarily need a guardian to make those decisions on their behalf. When individuals with disabilities direct their own decision-making process, they gain confidence and become better self-advocates. By expressing their preferences and exercising their right to decide, individuals with disabilities get the chance to interact with people in their community — shopkeepers, landlords, bankers, and doctors. This allows people with disabilities to make the social connections that define community life.
With support, an individual with a disability can open his own bank account, decide how to spend her money, and make health care decisions. As one of the leading authorities on disability law and policy points out,
This is how we positively express our freedom. This is how we can see legal capacity as a sword to forge our own way. And this has been largely denied to persons with disabilities throughout the world.
Supported decision-making is empowering:
- By using SDM, the individual retains his or her legal rights
- SDM increases self-esteem, self-worth
- SDM allows for personal growth and experiences
- SDM reduces stigma
- Using SDM means that individuals with disabilities are viewed as more capable of contributing to society because they are in charge of their own lives
Supporters can include family members, friends, caregivers, mentors, and other community members. They are chosen by the individual. Supporters know the person’s goals, preferences, and values, and respect his or her autonomy.
An individual can have as many supporters as is right for him or her. Some individuals in our pilot projects have had as few as two supporters while others have as many as ten. Most people have had four to seven. The individual can designate specific supporters for specific issues. For instance, one supporter may only help with financial decisions, while another could help with relationship decisions.
Supporters assist the person with the disability so he or she can make his or her own decisions. Supporters help the person understand the choices at hand, and review options — the pros and the cons — of the pending issue. The supporters may also assist the person in communicating his or her intention to others. Supporters may attend appointments or other meetings with the individual with the disability if the person with the disability wants the supporter there.
It is up to the individual with the disability to decide who he or she wants as a supporter. Supporters should be people that the individual would normally go to for advice or for help with a problem. Sometimes, the person with the disability wants to choose a person who is paid to work with them to be a supporter because this person knows him or her best. The person with the disability may wish to discuss this choice with another supporter who is not paid to work with them so that they can get support with the decision to select the supporter.
Some states with supported decision-making laws have restrictions on allowing certain paid staff to act as supporters. If you live in a state with a supported decision-making law, you should get advice from a lawyer in your state about this.
People with disabilities who use supported decision-making make their own choices. Sometimes a supporter will believe that the individual is making a good choice for him or herself, and other times a supporter might believe the individual is making a bad choice. The supporter can always share his or her view with the individual, but ultimately it is always up to the person with the disability to decide for him or herself.
For example, imagine that a young woman using SDM decides to drop out of a cooking course that she has already paid for. One of her supporters may disagree with this choice because the supporter believes she should have given the course more time before dropping out and that she is wasting money. The supporter can offer the woman advice and explain to her the pros and cons of dropping out of the course. But ultimately it is up to the woman to decide. The same applies to decisions where the stakes may appear higher or more complex, such as choices about surgery or buying a car. In these examples, similarly, a supporter can always share his or her view, but the person with the disability always gets to decide for him or herself.
Giving the individual with the disability the opportunity to experience the dignity of risk is one of the core tenants of SDM.
Yes. You can use supported decision-making even if there is not a law about SDM in your state. At its core, supported decision-making is an agreement between people to provide assistance with decision making. A court does not need to make an SDM agreement official. Where there are no SDM laws, the biggest challenge is often making sure other people understand what SDM is and how it works. For example, where there is no SDM law, a doctor may not know or understand what SDM is. If this happens the person with the disability and his or her supporters may need to educate the doctor about what SDM is.
Yes. Someone under a guardianship can try using SDM to see if the model of support is a good fit for the individual. However, it is extremely important that the individual, the guardian, and supporters understand the difference between SDM and guardianship and are clear about how decisions will be made while a guardianship is in place. More information about how to begin exploring SDM for someone under a guardianship is available here.
SDM has been widely used by individuals with intellectual or developmental disabilities (I/DD), but the model been implemented less extensively by individuals with mental health disabilities. However, SDM principles and concepts should apply equally to both groups and there are some pilots that have focused on using SDM for people with mental health disabilities. While our our pilot projects have focused on serving individuals with intellectual and developmental disabilities, many of the people we have worked with also had co-occurring mental health diagnoses.
Supported decision-making recognizes individual autonomy. By practicing supported decision-making, a person with a disability is practicing making his or her own choices consistent with his or her will and preferences. Just like with any person, disabled or not, people will make both good and bad decisions. Consistent with that, if the person with the disability makes a choice that others believe is “bad” or “dangerous,” it is that person’s right to make that choice and experience the consequences. By experiencing the dignity of risk, the individual has the opportunity to learn from his or her decision-making, rather than having all aspects of his or her life prescribed by others. Note that one person believes is “bad” choice may not be a bad choice to another due to cultural, generational, or other life factors.
Supported decision-making does not always result in a perfect decision, but it empowers people with disabilities to exercise the maximium amount of autonomy possible.
A health care proxy is a person you choose to make decisions for you if you become unable to make a decision for yourself. Health care proxys are recommended for all adults, and we recommend designating a health care proxy if you decide to use supported decision-making. Choosing a health care proxy allows you to decide in advance who you would like as a decision-maker if there is an accident or emergency. Many people using SDM choose one of their supporters as their health care proxy. There is no conflict between using SDM and choosing a health care proxy: SDM is a system you can use to help you make your decisions every day, while a health care proxy is something that only gets used if there is an emergency that caused you to be unable to make decisions for your self.
You can read more about health care proxy in Massachusetts and get forms in English and Spanish at this website. There is also more information about SDM and health care proxies here and in our Getting Started guide.
Anyone can apply the concept of SDM to his or her life, regardless of the person’s age. However, people under 18 are not legal adults and have certain restrictions on their decision-making under the law because of age (not disability). If you think SDM might be a good option for you as an adult, you can certainly try out the model before you turn 18 with the understanding that your parent or guardian is still legally responsible for caring for you.
Do you still have questions? Have you already read our getting started page?