Decision Making for Young Adults With Intellectual Disabilities

Tony, a 17-year-old who attends a school for students with moderate intellectual disability, takes fluoxetine for depression co-occurring with autism. Prior planned gradual reductions in his medication left Tony unable to attend school or work on coding his video game. However, Tony says he “doesn’t feel sick” and plans to stop his medication when he turns 18 in three months. Tony’s parents ask you whether he should be allowed to make these decisions.

Many patients with developmental challenges have trouble with specific capacities (ie, making important medical, financial, and relationship decisions). Others have a global lack of competence, which can be memorialized by a court order to ensure the person has the oversight they need in decision making. Clinicians need to understand the assistance options available to patients to guide them and their families.

Levels of assistance

Assistance options range from fully substituted decision making to supported decision making.

Guardianship/conservatorship

Legal guardianships involve minors or disabled persons who require someone to make personal decisions for them but might make financial decisions too. Conservatorships are usually for adults who need a legally responsible party (conservator) to make financial decisions for them but might also make personal decisions. There is a lot of overlap between the two terms, and the precise definitions differ from state to state. For our purposes, we will use the terms interchangeably. In a guardianship, a court assigns another adult or agency to make all decisions for someone who lacks the capacity to make those decisions (www.tinyurl.com/3c6ufxeu). This helps ensure that persons with developmental ­challenges:

• Take necessary medication
• Avoid agreements that they may not comprehend
• Live safely

Guardianships are criticized for undermining the autonomy and wishes of the person (www.tinyurl.com/2p9ap32u). They may also lead to financial abuse when the guardian has access to the individual’s funds and can strain family relationships when the guardian is a family member.

Limited conservatorship

Limited conservatorships preserve some autonomy for the person by listing specific decisions the guardian can make. Depending on the situation, the guardian may be empowered to make decisions for the individual regarding:

• Where to live
• Medical care
• Education
• Finances
• Entering contracts
• Consenting to sexual activity
• Marriage
• Voting
• Owning or carrying firearms

While he has trouble with finances and using public transportation safely, there is no reason to impede Tony from voting or choosing what classes to take at the local community college, so a limited conservatorship might be best if you can’t help him understand the benefits and risks of medical treatment.

Healthcare power of attorney (HPOA)

An HPOA (also called “medical power of attorney” or “health care proxy”) is typically a notarized document but does not require court approval. It allows a designated individual to make medical decisions for the person if they become incapacitated. HPOA is especially helpful for persons with co-occurring conditions, such as psychotic disorders or degenerative neurological conditions (eg, predictable dementias with trisomy 21).

Supported decision making

New approaches to decision making for disabled adults, such as supported decision making agreements, have come with the rise of self-advocacy among neurodiverse individuals. These are signed, often notarized, agreements to have other adults assist the person in making important decisions. The person retains all their rights; however, this documentation serves to reassure clinicians, bankers, attorneys, and others that the individual can make their own decisions and that their decisions should be respected. They might make some bad decisions, and families need to accept this.

The role of the psychiatrist

Planning for adulthood

Begin talking with patients and families 18–24 months before the patient becomes a legal adult. These are necessary, emotionally challenging, and technically complicated conversations about care options, financial trusts, and planning for when parents will no longer be able to care for the person. Track how your patient is developing their ability to make adult decisions. Courts move slowly, and families often need the help of attorneys.

Informal assessment

• Assess decision making during informed consent (eg, for medication).
• Check the person’s ability to understand, explain, and communicate rational decisions.
• Obtain specific examples of how the person functions in daily decision making through cognitive testing and collateral information from family members and other professionals.

Tony does not recall ever feeling depressed. You show Tony his medical record, including times when he became depressed during efforts to gently reduce the fluoxetine; however, Tony only talks about the video game he is creating when it’s his turn to talk.

Practical accommodations

Whatever their legal status, help your patients understand decisions and communicate their wishes. Many are not accustomed to being listened to. Here are some techniques to try (Sullivan F and Heng J, Can Fam Physician 2018;64(Suppl 2):S32–S36):

• Use simple language: Use words that any 8-year-old might understand to clarify concepts and avoid jargon.
• Review pros and cons: Say “Let’s write down the good and bad things that might happen if you do this.”
• Slow it down: Wait patiently, even counting to 10 in your head. Patients need time to process and respond.
• Use statements instead of questions: For example, instead of “Why are you feeling sad today?” try “I don’t know why you are sad today. Please tell me.” This helps patients feel more relaxed.
• Use AAC/SGD devices: For non-speakers, an augmentative and alternative communication (AAC) device, usually a tablet or laptop, which is sometimes a speech-generating device (SGD), can help a person who would otherwise always say or nod yes to express their thoughts and wishes more fully.
• Hold private conversations: Make time to talk with the patient alone to hear their wishes with less immediate influence.

You draw a simple “program” diagram for Tony showing “happy” when he is on medication, changing to “sad” when he is not, and looping back to happy when he is back on medication. Tony’s mother loads this onto Tony’s tablet and waits patiently for Tony to read it. Tony states that he does not want to be sad again and decides to stay on his medication when he turns 18.