Learn about decision-making options and the importance of building decision-making skills.
People with intellectual and developmental disabilities (I/DD) often seek guidance from trusted family and friends to help with making some daily and major life decisions. These decisions can range from making simple purchases to managing a budget to talking to a healthcare provider about medical care. It’s important to recognize a person’s ability first when determining the level of support needed in making these decisions.
Who is involved? What are the options?
Identify a trusted family member, friend, or a professional trustee who will play a role in decision making and who will respect the wishes of the person with I/DD.
Here are some ways that people with I/DD can receive support in making decisions:
- Representative Payee: A person, agency, organization, or institution that helps the person with I/DD to manage funds received from public benefits. The most common benefits systems using representative payees are SSI and Social Security benefits.
- Durable Power of Attorney for Financial Decisions: Someone to represent the person with I/DD on financial decisions.
- Durable Power of Attorney for Healthcare Decisions:Someone to represent the person with I/DD on health care decision-making. A person authorized to make health care decision is also known as a Health Care Agent.
- Authorized Health Care Representative:Someone to help the person with I/DD make decisions about Medicare and other health insurance coverage and to pursue claims related to coverage.
- Supported Decision-Making:The person with I/DD chooses a team of people to help him/her make decisions. The supporters have agreed to be available for advice and assistance.
- Guardianship/Conservatorship:A guardian or conservator is authorized to make decisions on behalf of the individual with I/DD and can be granted general or limited guardianship. When a guardian is appointed, the individual with I/DD loses the authority to make those decisions for him or herself. Every state has its own process for appointing guardians.
Evaluating Level of Support Needed
Talk to the person, family, disability professional, and legal advisor to determine what decision-making option is appropriate. If guardianship is necessary, then it’s important to recognize the person’s ability when deciding between limited or full guardianship.
Consider consulting with a lawyer to navigate the legal process of these decision-making options. It’s important that the lawyer understands person-centered decision-making for people with I/DD. If your family can’t afford a private lawyer, consider working with a legal assistance program such as Legal Aid. Contact The Arc’s national office through our online form or at 202-617-3268 for more information.