Frontline Initiative Choice, Direction, and Control

A well-known saying states, if all you have is a hammer, everything looks like a nail. Guardianship was the hammer for too long in the fields of intellectual and developmental (IDD) disabilities. Every time an adult with a mental disability needed assistance in decision-making, guardianship was seen as the solution. For some time, there have been alternatives to guardianship for people with disabilities. Limited guardianship can help a person who needs some level of assistance in decision-making. But it does not require the guardian to make all decisions for a person. There are other alternatives to guardianship that allow people with IDD to maintain some control over their decisions:

• Healthcare proxies are documents that let a person name someone else to make health care decisions on the person’s behalf if the person cannot speak for him or herself. Sometimes healthcare proxies have specific limits.
• A power-of-attorney is a legal document in which a person authorizes another to make decisions on the person’s behalf in a broad range of areas (financial, etc.).
• A representative payee arrangement allows someone to receive governmental benefits on the person’s behalf and for the person’s benefit.
• A direct deposit arrangement with a bank can make it easier for the person with IDD to make sure that funds can go directly into the person’s bank account without running the risk of losing a check or having to travel to the bank to deposit it.
• A joint bank account with a friend or family member can permit the person with IDD to take advantage of the co-owner’s access to the account to make it easier to enter into financial transactions.

These arrangements can allow a person being assisted to maintain choice, direction, and control while also receiving support.

One of the newest alternatives to guardianship—new to the US at least—is supported decision-making (SDM). In other publications, I have defined SDM as —

Supported decision-making can be defined as a series of relationships, practices, arrangements, and agreements, of more or less formality and intensity. . . [These are] designed to assist an individual with a disability to make and communicate to others decisions about the individual’s life. . . [S]upported decision-making [relies] on peer support (for example, ex-users of psychiatric services for people with psycho-social disabilities), community support networks and personal assistance, socalled natural supports (family, friends), or representatives (pursuant to a representative agreement) to speak with, rather than for, the individual with a disability.1

Central to SDM is the idea that all people have capacity to make decisions, although some people may need support to do it. Equal recognition of all people in the law means that people have the chance to make decisions for themselves. SDM is based on concepts developed in Canada, Australia, and Europe. SDM received a boost when it was adopted by the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) in 2006. The United States has not ratified the CRPD. But, SDM has become increasingly influential with legislators, courts, advocates, and legal commentators in the US.

There is a key difference between guardianship and SDM. In guardianship, the guardian is the decision-maker. The guardian is supposed to use input from the person under guardianship. In SDM, the person being assisted remains the decision-maker. The person is free to rely on their supporters or not. SDM is a way of providing decision-making assistance, but it does not allow someone else to take control of the person’s life without their permission. It is increasingly likely that direct support professionals (DSPs) will come into contact with people with disabilities who are using SDM. These relationships may require additional flexibility and investment of time from DSPs, since guardians may no longer be the points of contact. For some decisions, the DSP will need to interact with the person and one or more supporters. Different supporters may be called upon for different decisions. But if we are serious about the importance of person-centered planning and services, SDM should be embraced. DSPs can play an important role in making SDM a reality for the people they serve.