Assisting Individuals with Disabilities in Decision-Making 

Article |

According to the Special Olympics, it is estimated that 6.5 million people in the United States have an intellectual or developmental disability (IDD).Typically, IDDs appear during childhood and can affect an individual’s ability to learn, reason, problem-solve and move.   

As much as possible, people with IDDs should be encouraged to make their own decisions – both big and small – about their daily lives. Being able to make choices can help them stay active and engaged and give them a greater sense of control over their environment and life. 

Supported Decision-Making 

While some people with IDDs can make their own day-to-day decisions about what to wear, what to eat and where to go, others may need a little extra help.

For example, they may need someone to: 

  • Explain their options to them 
  • Describe the consequences of a choice they have to make 
  • Break down information given to them by a doctor, lawyer or employer 
  • Help tell other people what they want or need 

Substitute Decision-Making 

In situations where an individual with an IDD can’t make their own decisions, they will need someone to make them on their behalf. This type of substitute decision-making is intended to protect them from making decisions that could harm their health and wellbeing. Keep in mind that if a person with an IDD has a natural support system of family, friends and advocates that can help them with decision-making, then formal or legal arrangements aren’t usually needed.  

But if an individual doesn’t have a support system in place, then substitute decision-making can be considered as a last resort.

Some of the people involved include: 

  • Representative payees – These people manage a person’s social security income (SSI) and other social security benefits. 
  • Power of attorney – They can make decisions about money, disability services and more. 
  • Power of attorney for healthcare – These authorized agents, representatives or proxies manage an individual’s healthcare needs. 
  • Guardianship/conservatorship – A court appoints these people to help make decisions about a person’s body, property or money. 

As a parent or guardian of someone with an IDD, you can empower your young child or adult child to make daily decisions. For example, you can ask them to choose between two cereals at breakfast, two shirts to wear or even between two activities to do. Allowing your child to make as many of their own decisions as possible will help them continue to grow and become more independent. 

California State Resource

Established in 2020, the Disability Thrive Initiative helps navigate changes in services and supports Californians with developmental disabilities.