Planning for the Future When Your Adult Child Has a Disability

If you’re the parent or caregiver of an adult child with autism spectrum disorder (ASD) or an intellectual and developmental disability (I/DD), you probably have concerns about their future. But with a little extra time spent planning now, you can help ensure a smoother transition during the next stages of their life.

Here’s how to get the ball rolling: 

1. Include your adult child in planning as much as possible. Studies show that the more people with disabilities are involved in decisions about their futures, the better they feel about themselves. Talk about the types of decisions that they may need help with in the future and who they’d like to help them with. 

• Come up with a decision-making agreement with possibly the help of a lawyer. You can contact the protection and advocacy program in your state if you’re unable to pay for legal services. 

• Let other people know about the plans for future decision-making. This could include family, friends, doctors and others involved in supporting your adult child. 

• Have regular check-ins with your adult child to make sure you take their thoughts and ideas into account on how they want to make decisions. Be ready if and when the decision-making plan you’ve made with them needs to be changed or put into action. 

• Reassure your adult child that you’re there for them when their decision-making abilities begin to falter. Fear and anger are common emotions when this happens – let them know you’ll always listen to and value their opinions. 

• Discuss decision-making alternatives such as: 
  
  
• Supported decision-making arrangements. Individuals with disabilities make their own decisions with the help of someone they’ve selected. 
  
  
• Limited powers of attorney. People with disabilities choose someone to make specific decisions for them for a limited time. 
  
  
• Durable powers of attorney. Legal arrangements can be made for someone to take over decision-making if or when a person with a disability is unable to make decisions in the future. 
  
  
• Advance directives for healthcare decisions. Legal documents can be drawn up to make healthcare decisions for a person designated by the individual with a disability. 

Even though it’s important to plan for future changes that could impact your adult child’s decision-making ability, it’s equally important to encourage and respect their independence. To learn more about how to create, review and adjust a decision-making plan, visit The Arc’s Center for Future Planning.