How Soon is Now? Building Foundations for Supported Decision Making (SDM) as Early as Possible for Children with IDD/DD

Posted in Disability Policy  |  Tagged

by Mona Ghuneim and Jennifer Berzok (GU LEND ’23)

As a nurse, disability advocate and consultant, as well as the parent of a now adult man with autism and a significant mental health disorder, Marisa Brown never once considered guardianship over her son. He is his own decision maker, she says, and they have been using supported-decision making (SDM) even before she knew the official term. She, her husband, and the rest of her son’s support team, which he chose himself, are there for him when he needs them. In fact, when her son came to her, of legal age, stating he wanted to have sex and presented her with the information for where and how he could do that legally, she supported him. She and her husband helped him make that happen. Supporting his decision and working with him, he was able have a meaningful, safe and probably fun first experience. It was what he wanted and thought best for himself.

            We all want what’s best for our children. Parents, caregivers, and the family work with their communities to nurture and prepare children in a way that enables them to eventually be self-sufficient, self-determined, self-assured and most of all, self-decisive adults. As a society, we hold as a very high priority the ability to make our own individual decisions. As parents and caregivers, we know that one day we will not be there for our adult children. So we teach, we communicate, we model, and we support them from a young age on this trajectory to determine their own futures.

            We raise our children with the idea that they are capable and competent, giving them choices and many times allowing them to “mess up” in order to learn from their mistakes. Let them make bad decisions. That’s part of growing up. That’s normal. And shouldn’t every member of society be allowed to go through that wonderful, embarrassing, exciting, heart-breaking, bitter-sweet experience of maturing and making their way into adulthood?

            Yet there lurks in society a different way of thinking when it comes to people with disabilities, particularly those with an intellectual or developmental disability (IDD/DD), and it pervades all aspects of the disabled person’s life. Doctors, other health professionals, lawyers, financial advisors, teachers, education specialists – they all tend to presume the person is incapable of making most or all of their own decisions. Parents, caregivers and family members are often guilty of this bias with their own disabled children, particularly if the disability is “severe”.

            According to David Ervin, CEO of Makom, a Washington DC metro area organization that was created by families and works with adult children with IDD through housing and other support programs, we need to ask our children: How do you want to live? And if that requires finding better ways to communicate with them, then so be it. He believes there are alternatives to guardianship when it comes to legally constructing a network of decision making supporters.  According to Ervin, Often, for no other reason than the presence of DD or IDD, we presume incompetence, and we are influenced by what the system imposes on us.”

            He says society, and communities in particular, need to get serious about teaching children, with or without disabilities, self-advocacy on a systemic level. Far too many of us wrongly have this presumption of incompetence and we have to change the mindset – it is not about what they cannot do, but rather what they can do.

            We must shift the way we view people with IDD/DD to a model that presumes competence, that allows for a strengths-based, person-centered, inclusive approach no matter the severity of the disability. And we have to do this early. Even before the child starts school.

            Sue Swenson, a former disability policy maker in the US government, current disability advocate, and mother of a child who had profound disabilities, says change has to happen at home before advocating elsewhere. She relates that her son, who was nonverbal, liked opera, that he could read and understand more than he was ever given credit for and that it wasn’t on him to be understood. “We had to get better at understanding him,” she said. Schools need to be part of the solution as they decide on suitable programs, the use of technical assistance and facilitated communication, and find ways to support students with disabilities to make their own decisions.

            Yet school, even today, is still the environment in which parents first learn about guardianship, or conservatorship as it is known in some states. Rather than having parents learn about guardianship, why aren’t more and more school staff and educators telling families as early as possible about supported decision making?

            Did you know that Sweden, where SDM had its origins, abolished full guardianship and moved to a two-tier system of support?  While not eradicating guardianship, several Canadian provinces shy away from it, encouraging supported or shared-decision making models instead. Are you aware that Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRDP) “mandates that SDM or other equivalent supports be provided” and that Texas, of all the states, legally recognizes supported-decision making agreements (SDMA) as an alternative to guardianship?

            While we are not suggesting that we follow the Scandinavian model and drop guardianship all together, despite those countries always topping the best places to live in the world, or be exactly like our neighbors to the north, we are thinking that maybe Texas might be doing something right…

            According to the Association of University Centers on Disability (AUCD), research consistently shows that people with disabilities who have more self-determination and control in decisions that affect their lives have more positive postsecondary education experiences, employment, independent living, and community inclusion.

            It’s never too soon to lay down and build on the foundations that pave the way for children with IDD/DD to be included and be successful, self-sufficient and productive adults. They deserve, and have the right, to make their own decisions and choose their circle of support. And they too will want to have sex. After all, it’s their decision.