There are many alternatives, depending on why people think guardianship may be desirable in the first instance. For example, if the issue is financial, there are alternatives including representative payeeships for SSI payments, authorized representation for Medicaid benefits, joint or limited bank accounts, credit or bank cards with predetermined limits, and powers of attorney. For healthcare, the persons with I/DD may execute a healthcare proxy. Also, New York’s Family Healthcare Decisions Act permits involved family members to make decisions on behalf of persons with I/DD without guardianship.
Supported decision-making is also an alternative to guardianship. Supported decision‐making allows persons with I/DD to choose trusted others, often family members, to support them in making their own decisions. Supports may include gathering information, helping persons with I/DD evaluate the information and understand the consequences of a decision, communicating decisions to third parties and supporting persons with I/DD in taking responsibility for their decisions.
Often the arrangement will be reduced to writing in a contract called a “supported decision‐making agreement.” Some institutions, like schools, may agree to accept such agreements instead of guardianship as, for example, is the case in Washington, DC. Some states, like Texas and Delaware, now have laws requiring private third parties (like doctors, financial institutions, or landlords) to accept supported decision‐making agreements. While New York does not yet have such a law, SDMNY hopes to develop evidence that will support legislation, regulations, and policies that will make supported decision-making a more readily available alternative to guardianship in the future.
How to Provide Support
A supporter is someone that generally a DM knows and trusts. Generally, good supporters have an understanding of the DMs’ abilities, learning styles, and personality and are aware of how the DM’s strengths and weaknesses may affect her decision-making process. When supporting a DM, a skilled supporter:
- listens more than talks;
- repeats, reviews and simplifies information for a DM;
- observes the DM’s body language;
- encourages purposeful conversations led by the DM;
- asks open-ended questions;
- helps the DM to give authentic responses instead of those that a supporter prefers; and
- focuses on the DM’s strengths rather than weaknesses.
Importantly, supporters do NOT rescue. A “rescuer” gives advice, controls, knows best, disempowers, jumps to conclusions, doesn’t listen, and talks a lot. By contrast, a skilled supporter listens, respects, reflects, explores, assists, empowers. A “rescuer,” for example might try to complete a task for a DM, instead of allowing her to assume the responsibility for completing that task, despite the possibility that she might not do it successfully—or at least as well as the would-be “rescuer”—and that the DM might face unwanted consequences. Instead, a supporter believes in the “dignity of risk,” which means that sometimes a DM’s decisions will not go in the way that DM or supporters prefer, but that every “poor” decision may present a valuable learning opportunity that will help the DM in the long run. In the words of Robert Peske, “To deny the right to make choices in an effort to protect the person with disabilities from risk is to diminish their human dignity.”
Last, support can come in many different forms, and supporters should always be aware of and respect the kinds of support that DMs prefer. Supporters can help DMs by:
- gathering necessary information,
- educating the DM about that information,
- identifying possibilities and alternatives,
- aiding the DM in weighing choices and understanding consequences,
- communicating the DM’s decision to others, and
- helping to implement the DM’s decision.
Supporters should offer the kinds of support specified by the DM and provide support ONLY in the decision-making areas desired by the DM. For example, for a DM who has specified in her supported decision-making agreement that she only wants one parent to help her gather information about financial decisions, that parent should not then try to advocate for one option over another. Also, if she wants another parent to explain to her what the information gathered by the first parent means, then only the second parent should do that. And the second parent should not gather additional information, unless the DM decides to modify the terms of her supported decision-making agreement.
Myths About Guardianship
Parents are often given confusing or misleading information about guardianship and/or the need to obtain guardianship over their children with I/DD. Here are some of the most common:
1. If you don’t get guardianship when your child turns 18, you will no longer be able to participate in her/his IEP meetings or other educational planning.
This is untrue. Your child may authorize you to continue your involvement without guardianship.
2. You need guardianship in order to obtain benefits for your child or otherwise to advocate for your child, or negotiate with OPWDD.
This is untrue. There is no such requirement.
3. Getting guardianship is the best way to protect your child with I/DD.
This is untrue. Guardianship is no “silver bullet”, while studies show that enhancing self-determination enables people with I/DD to better protect themselves.
4. There is no downside to getting guardianship; everyone does it.
This is untrue. Many parents are unaware that guardianship totally removes all of their child’s legal and civil rights and leaves her/him a “non-person.” If people with I/DD are not given opportunities to make their own decisions and have those decisions recognized they will not grow and are far less likely to live self-determined and inclusive lives.
5. “Good” parents get guardianship because their children with I/DD will always be “children” and they need to remain in a parental role.
This is untrue. Over time, perceptions of, and expectations for people with I/DD have changed dramatically, and the goal is now for children with I/DD to grow into self-determined adults who live rich and inclusive lives.