Photo Credit: The NY Alliance

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.

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.