Approximately 1.5 million adults are under active guardianship or conservatorship, according to Bloomberg Law. An unknown number of these adults are young adults with disabilities, often intellectual and/or developmental disabilities (I/DD). These young adults are often funneled into guardianship by what the National Council on Disability (NCD) in its 2018 report called the “school-to-guardianship pipeline,” a phenomenon where schools are, by default, recommending to parents that they start the process of assuming guardianship over their disabled child before they become an adult. The NCD stated that schools often recommend guardianship due to the widespread and erroneous belief that people with disabilities are less capable of making autonomous decisions. This line of thinking is unnecessary, Jonathan Martinis, Senior Director for Law and Policy, Esq., J.D. at Syracuse University’s Burton Blatt Institute, said in an interview with the American Bar Association’s Commission on Disability Rights, because it frequently strips adults capable of making their own decisions of their rights.
“What rights are the most important to you?” Martinis asked, rhetorically, then enumerated some examples of freedoms that the average American has, such as the freedom of speech or to determine one’s living or work arrangements. He added, “If those rights are important to you, then that answers the question” of why guardianship should not be the default for students who have reached the age of majority. “Because, by definition, guardianship takes away rights from people.” Studies have shown that when people with disabilities have more control over their lives, when they have self-determination, they tend to thrive at school, work, and in their communities.
Schools should be suggesting alternatives to guardianship to parents instead, Martinis said. He is best known for his work on Supported Decision-Making (SDM), an alternative to guardianship and a process of making decisions with the support of one’s community. Through SDM, adults with disabilities can make informed decisions, maintaining their autonomy and independence, and fulfilling one of the mandates of the Individuals with Disabilities in Education Act to enable students to “be prepared to lead productive and independent adult lives, to the maximum extent possible.”
Martinis secured a major victory for proponents of SDM more than a decade ago. On August 2, 2013, a judge declared that Jenny Hatch, then a 29-year-old woman with Down syndrome under a temporary guardianship she did not want, could, after one year, regain decision-making authority. Most significantly, the Court determined that, while in guardianship and after the guardianship terminated, Hatch should use SDM. Since then, more than half of the states in the U.S. have changed their laws to recognize SDM as an alternative to guardianship. Particularly noteworthy, six states and D.C. have passed laws that recognize SDM within transition planning and transfer-of-rights discussions for students with disabilities approaching the age of majority.
Asked how parents, many of whom don’t have the money to hire an attorney, can determine whether guardianship is necessary, Martinis responded that they can ask the school, “Where is my child needing support?” Once it’s clear what those needs are, parents and school can start to address them. And it’s best to include the student, who can use SDM to develop a plan, Martinis said.
The District of Columbia Public Schools created the first education policy on SDM. “They talk about working with kids in pre-K on building networks to help them make decisions,” Martinis said. “I always say it sounds like a joke. You have a three-year-old trying to decide between cookies and crackers or orange juice and apple juice. But here’s why it’s brilliant. Because if you take a pre-K student and tell them that they have a choice to make, and [that] it’s their choice to make, and that they should seek help and support in making that choice, what you’ve done is you’ve started a habit. And as decisions get tougher, as they get older, they’ll use that habit, and they’ll know that decision-making is important, and that support is important, and those things carry through the rest of their lives.”
Rebecca Smith-Hill, Ph.D., serves as Associate Director, Center for Transition Research and Leadership at the University of South Carolina, and is a social worker, a former middle school and high school special education teacher, and an adjunct professor. She agrees that teaching students SDM skills early on is critical. She said that the issue at the heart of the pipeline is “the over-protection of people with disabilities—in particular, those with an intellectual disability.” Smith-Hill added that “the whole idea of low expectations for people with disabilities, particularly intellectual disabilities, must be changed for the guardianship conversation to change substantially.”
Smith-Hill has written about the role of social workers in improving transition outcomes through alternatives to guardianship. She noted that there are “so many alternatives to guardianship—and there are alternatives along a continuum as well,” including medical or financial power of attorney. Social workers should learn as much as they can about SDM and then share their knowledge with other social workers, professionals, teachers, and parents. Smith-Hill added that “social workers who are doing direct service/support work with students with disabilities can empower these folks by giving them opportunities for and teaching them skills toward self-determination,” and that their parents should be educated on their importance.
Shawn Ullman serves as the Chief Executive Officer at Quality Trust, a DC-based nonprofit advocacy organization dedicated to ensuring that people with intellectual and developmental disabilities have the supports and services they need to live full and meaningful lives. In an interview with the Commission, she stated that lawyers working with young adults with disabilities and their families “have a responsibility to ensure they understand and are guiding their clients through the wide array of decision-making options available beyond guardianship.”
Quality Trust helped create the National Resource Center for Supported Decision-Making, launched in January 2015. For more than a decade, the Center has trained thousands of people throughout the country on SDM and continues to provide training and technical assistance. They also assist young adults residing in the District of Columbia to execute legal documents that implement alternatives to guardianship, such as SDM Agreements and Powers of Attorney.
Funding cuts to federal programs and other legislative decisions could exacerbate the school-to-guardianship pipeline, Ullman and Smith-Hill said. For example, if Medicaid is cut or restructured, fewer services funded through Medicaid such as in-home care will be available, which could “roll back decades of advocacy for people with disabilities and a possible regression to large, congregate facilities where people are isolated from their families and support networks, have limited if any choices, and little opportunity for employment or growth toward independence,” Ullman explained.
In conclusion, where guardianship is being considered for special
education students who age out of IDEA eligibility (usually age 21 or
upon graduation), it is essential that schools, parents, social workers,
and lawyers explore alternatives such as SDM that empower individuals
with disabilities to make informed choices about how they want to live
their lives.
Full Article & Source:
Addressing the School-to-Guardianship Pipeline
