Article

Frontline Initiative Choice, Direction, and Control

Choice, direction, and control. How do I support these in my duties as a DSP?

Author(s)

Desiree Loucks Baer is Director ofProgram and Member Services atthe New York State Association ofCommunity and Residential Agencies(NYSACRA). She is working with theNYS Developmental Disabilities PlanningCouncil Grant and CUNY/Hunter Collegeto develop and pilot a supporteddecision-making model throughout NewYork State. Contact her at desireelb@nysacra.org.

As direct support professionals (DSP), we support people every day to make informed decisions. How will people spend their time? With whom will they spend their time? How do they want to dress? How do they want to decorate their personal space? What and when do they want to eat? We support people to make large and small decisions about their lives. Supporting people to make informed decisions is one of the most important responsibilities we have as a DSP. We encourage people to have choice and control over their lives. We also recognize that decision-making is a skill. We support people to learn and practice this important skill. This is especially important if they have had limited chances to do it in the past. All people use supports to make decisions in their lives. When I recently purchased a car, I chose my husband and son to support me. They helped me to understand what I needed to know in selecting a car. They both have more knowledge about cars than I do. I used that knowledge to choose a car that would best meet my needs. I made the decision for myself, but I used the support of people I trusted to help me make a good decision. As DSPs, we have lots of opportunities to support the decisions that people make.

Guardianship

Sometimes we work with people who have been appointed a guardian by the courts. When a person has a guardian, the court has determined that the person lacks capacity to make certain decisions for themselves. When a guardian is appointed, he or she has been given the legal responsibility to make decisions for the person. The decisions guardians make should be based upon what that person would decide if they were capable of making the decision. Courts can appoint a guardian to make different types of decisions. For example, they may make decisions about money or healthcare. Guardianship may help protect a person from exploitation or harm. When a guardian is doing their job well, they always follow the person’s expressed wishes. They engage the person to ensure they understand what those wishes may be. Guardianship can also have some negative consequences. Removing a person’s rights may result in loss of independence, self-expression, and dignity. In some cases, it can result in exploitation of the person by the guardian.

Supported decision-making

In the movement to help people with disabilities live more self-determined lives, people with disabilities and their families around the world have started to explore alternatives to guardianship. The United Nations Convention of the Rights of Person with Disabilities has recognized Supported decision-making (SDM) as a tool that supports the decision-making abilities of people with disabilities. SDM is a series of relationships, practices, arrangements and agreements that are designed to assist an individual with a disability to make and communicate to others decisions about the individual’s life.1 The person exercises self-determination to the greatest extent possible. When making a decision where the individual has limited experience they choose people they trust, such as family members to support them. The people they choose may fill a specific role, such as helping to understand information relating to the choice to be made. Or, a supporter may also help communicate the decisions the person makes. Formal agreements can be developed between the person making the decision and the person(s) they choose as supporters. The agreement helps define (1) on what types of decisions they would like support, and (2) how that support should be given (e.g., providing information, communicating the decision). This can be used as a tool by the person when working with others. Professionals and others outside of the agreement may not understand or respect the person’s ability to make decisions. Formal documentation of the agreement can ensure that the person maintains choice, direction, and control. SDM is new to the United States. Texas and Delaware are the only states that currently recognize SDM agreements. Howev1 From “Implementing Legal Capacity Under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,” by R. D. Dinerstein, 2012, Human Rights Brief, 19, p. 8. er, a handful of other states have statutes being considered in their state legislatures. A few states are trying SDM models with hopes of legal recognition in the future. As a DSP, how can you support a person who is utilizing SDM? The key to SDM is the empowerment that comes with decision-making. Decision-making is a skill. Therefore, it needs to be taught, learned and practiced. It is important that as DSPs, you — • Recognize that people make hundreds of decisions every day. • Assist the people you support to practice making informed decisions as often as possible. Everyone has the right to make a bad decision. • Support the learning that comes from those bad decisions. • Recognize that the greatest learning can come from our mistakes. • If you are supporting a person who has a guardian, respect the role of the guardian. However, remember your first allegiance is to the person you support. Help the person you support to communicate their expressed wishes and the decisions they want made on their behalf. The support you provide as a DSP may be key to helping that person live a more empowered life.