As teens grow, they need to prepare so that they get ready to be adults. They need to practice some of their own decisions. Usually they may start with small decisions, like what to wear or what to eat for dinner. Other later decisions might be bigger, such as choosing where to live or where to work.
Parents or caregivers have been in charge of their children’s healthcare decisions as they have grown. To build skills in making decisions, teens must learn from their parents and from their own experiences. They need to get involved and talk more with their doctors. They need to learn to listen and understand, to ask questions when they don’t fully understand, to weigh their choices and then hopefully make the right decisions for their own future.
In Indiana, the responsibility for legal decision making changes from the parent or caregiver to the young adult at age 18. Young adults need to learn about healthcare privacy rights and understand they make the choice to accept or refuse care for themselves. The responsibility of signing healthcare consents switches into their hands. This doesn’t mean others can’t be involved. But it does mean the young adult decides who can be involved in their care and health discussions. We call this “autonomy”.
“Natural supports” are the people in your life, such as family members and friends, who are good help to you when you need to make decisions. It is important for young adults to learn that even when they are old enough to make decisions on their own, they can still ask for additional help from others when they need it.
What are the steps in making good healthcare decisions?
- Learn about the options. Consider someone who has just twisted their ankle. Their options might be to call and get advice from a doctor, or go to a healthcare center immediately, or to wait and treat the injury at home to see if they really need further help.
- Weigh the pros and cons. The person in this example may base their decision on what they know about ankle injuries and their use of other helpful information like someone at their medical home, or their family and friends or even the internet. They might also have to consider the cost of getting treatment. They should also think about the risks of the choice they are making: “Do I know what to do without further help? Can I control my own pain? What could happen if this is serious and I don’t do anything right away? Should I still walk on it? What will make it worse?”
- Pick one of the options. The person then makes a choice about their ankle because they have thought about the different pros and cons for each option and found the best fit for them right now. In this example, the young adult called their medical home, talked to the nurse and felt comfortable with their choice. The nurse had explained: “If you are able to walk on your twisted ankle without much discomfort and it isn’t very swollen or discolored, then it sounds safe to elevate it, use ice, and take some acetaminophen.” She recommended that if it wasn’t feeling much better in two days or got worse, to call back. Using this information, the young adult chose to treat the injury at home.
- Explain why the choice was the right one. Living with your own choice is the next step. It is a good idea to be able to explain, at least to yourself, why you made the choice you made. For example, the young person made the choice to wait and take care of the ankle injury at home, but then the pain got worse later in the day. The original choice to stay home included the reasoning that the pain was well controlled. The choice now might need to change to get that ankle checked out at the doctor’s office.
Teens may face a number of health decisions. Parents and caregivers can help them work through the answer to some of these common questions: How will I know if I’m too sick to go to school? What is enough pain to take medicine? What is sick enough to need to visit the doctor? What is sick enough to call an ambulance?
A teen can practice making these decisions, weighing the pros and cons of the options to make good choices. A parent or caregiver can help in this process. For example, a parent may give the teen the responsibility to take medicine prescribed for an illness. If the exact time is not important for the medication, a teen then could decide when they will take the medicine each day. Of course, parents or caregivers can still provide safety nets such as ways to have reminders and other supports to ensure teens are making good decisions.
Additional Decision-Making Support
Some teens may develop their skills in decision-making more slowly than others. They may need to explore using additional supports. Others may need legal help for making decisions as an adult. Parents do not automatically keep the legal right to make decisions for an 18-year-old who needs extra support unless special legal steps are made. Power of attorney and guardianship are examples of legal supports.
- Guardianship is the process by which a person (the guardian) receives legal responsibility from the court to make decisions for another person (the ward). The ward is a person who is unable to show the capacity to make decisions, usually due to an intellectual, neurologic or emotional disability. Ideally guardianship decision-making powers are limited as much as is reasonable. The ward should be encouraged to exercise as much advocacy and choice for self as is safe and possible.
- Power of attorney for healthcare, or a health care representative, is another form of legal support. It requires a person to choose to give someone else permission to make healthcare decisions for them, either at the current time or in the event of the person’s loss of their own ability to do so. A person must have the decision-making capacity to understand this concept to give someone else this permission.
- An advocate is a person who agrees to help someone and to stand up for that person's rights when they need help.
- A support person is a more unofficial role, such as helping when asked in making a decision or maybe even sharing a checking account together. This support person can be a family member, a trusted friend or a hired professional.
Visit the trusted websites below to learn more about this topic.
- National Resource Center for Supported Decision Making. This organization supports people with disabilities to have a voice in making their own decisions.
- PACER Center – Self-Determination: This page on PACER’s National Parent Center on Transition and Employment website provides self-determination education and resources.