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A Publication about Visual Impairments and Deafblindness for Families and Professionals

TX SenseAbilities Spring/Summer 2017

By Caroline Nelson, Austin Area Parent

Abstract: In 2015, the Texas 84th Legislature passed two bills establishing supported decision making (House Bill 39 and Senate Bill 1881). This legislation allows families who have an adult with a disability a continuum of decision-making supports that extends beyond guardianship. The author, a parent of a young man preparing for transition, shares four main factors families and self-advocates should consider when developing an individual support plan. To learn more about supported decision making, please visit https://www.disabilityrightstx.org/resources/supported-decision-making.

Key Words: Family Wisdom, transition, guardianship alternatives

Reprinted with permission from Texas Parent to Parent 2016 Fall Newsletter. If you have not had the pleasure of connecting with Texas Parent to Parent before, we invite you to do so by visiting their website at http://txp2p.org/.

Young adults on a typical developmental path don't immediately begin making every decision, and assuming every responsibility, the day after they turn 18. There are a variety of supports for decision-making, both formal and informal, that parents of all young adults can consider, regardless of the young person's disability or level of independence. Decision making supports can apply to medical, financial, educational and personal decisions.

There are four main factors to consider in order to make a meaningful support plan for your individual young adult with his or her own unique needs. The factors are: autonomy, capacity, responsibility for consequences, and protection.

Think about the young person you support. How much decision-making autonomy is wanted and needed? How capable is the individual of predicting and taking responsibility for the consequences of decisions? Consider the capacity for meaningful decision making or understanding the consequences of decisions. Is protection from undesirable consequences needed?

There are a variety of decision-making supports and tools to choose from, depending on the unique answers to these questions. These supports fall into four categories: Autonomous decision-making, joint decision-making, decision-making on behalf of the student, and guardianship.

Autonomous Decision Making

For a young adult with the most decision-making capacity and ability to handle the responsibilities and consequences that come with autonomy, parents may choose to put nothing formal in place, relying instead on parental leverage, or "power of the purse." An example of this would be when the parent sets a boundary around paying college tuition or providing a car if their child chooses (or doesn't choose) a given course of action.

Joint Decision-Making

For a young person who might benefit from help understanding decisions, interacting with professionals, and communicating wishes, but who ultimately has the capacity to make the final decision, a Supported Decision-Making Agreement or Power of Attorney might be appropriate. Both mechanisms assume capacity on the part of the student (including capacity to revoke the agreement or decide contrary to parents' wishes). These tools are permission-oriented. In other words, the young person gives the parent (or supporter) permission to assist with decision-making, but does not give away the final decision. A joint bank account serves the same function in that it allows independent decision-making by the young adult, but with the support or monitoring by the parent or joint account holder.

Decision-Making on Behalf of the Student

As we think more about the young person's capacity to make sound decisions or to deal with consequences, parents may consider mechanisms that do not allow their adult child access to certain types of decisions, in particular, financial decisions. Examples of these mechanisms could include becoming, or naming, a Representative Payee for social security benefits, or putting assets in trust with a trustee as decision-maker on behalf of the young person as beneficiary.

Guardianship

The final category, guardianship, supports a young person who lacks capacity to make meaningful decisions about adult needs and responsibilities. Unlike the other types of decision-making support, a guardianship removes the adult rights from the person, and vests them in the guardian. A person under a guardianship (a "ward") functions as a decision maker the way a minor (under 18 year-old) does: choices such as marriage, voting, entering into contracts, or making medical, financial or educational decisions ultimately are the guardian’s to approve. A young person under a guardianship is also the most protected from the consequences of decisions made independently.

In conclusion, each of these levels of support and protection can be changed, as a young adult continues to mature. The most important thing is to consider your student's unique decision-making and support needs as he presents today. There is no one right answer.