How people with disabilities loose their rights
Odds are that most Rhode Islanders with significant developmental disabilities don't enjoy the basic rights of choice, freedom and the authority that advocates call "self-determination", something everyone else takes for granted.
Family members, program directors, or even strangers have been given authority over the lives of thousands of vulnerable Rhode Islanders through guardianship proceedings during which a judge finds them to be incompetent, often without much evidence.
"There's no reason to pay any attention to what the person with a disability wants if someone else has been given that authority," says Dohn Hoyle, executive director of the Arc of Michigan.
"We end up enforcing a loss of dignity by treating a person as less than a full human being."
Guardianship, he says, ensures that people with disabilities will not have control over very important aspects of their lives, such as where they live, with whom, how they will spend their time and their money. At other times, selections are limited. Individuals may be able to choose who their roommate will be, but not whether or not they will have one. True choice is being able to pick from the same wide variety of lifestyles, goals, and individual preferences most people enjoy.
"Representation in court for those who are the subjects of guardianship petitions is weak, if present at all. If the court appoints an attorney, he or she typically has no background in disability nor does the judge. The brevity of hearings, usually only a few minutes, speaks volumes about the lack of due process and care with which guardians are appointed. Lady Justice, blindfolded and evenhandedly weighing evidence and individual rights, is clearly absent from most courtrooms during guardianship proceedings."
Hoyle made these observations during a recent conference on alternatives to guardianship sponsored by the Rhode Island Developmental Disabilities Network, an alliance between the Rhode Island Developmental Disabilities Council, the Rhode Island Disability Law Center and the Sherlock Center on Disabilities.
(401-737-1238) publishes a guide that can help families consider alternatives to guardianship as they help their child plan for life as adult. The Rhode Island Transition Resource Directory, published by the (401-456-8072), is another publication that parents, teachers and students with disabilities will find useful as they become involved with transition planning.
Among those participating in the conference were special education teachers from Rhode Island high schools. The guardianship issue is an important one for educators since teens with disabilities, not their parents, are responsible for their education program when they turn 18, the age when they become adults with all the rights and responsibilities - the right to vote, to sign contracts, to make decisions on health care, to stay in school or not, to decide where to live, and how to spend money.
Hoyle said that in his experience, school professionals typically have little understanding of the impact of guardianship on the lives of people with disabilities as they live some thirty to thirty-five years beyond their parents' lifetimes. "Yet parents are often frightened into believing they will lose the ability to control their child's educational program and even to receive information regarding their child unless they become their son or daughter's guardian. This time could, and I believe should, be spent instead with the school and parents working collaboratively with the student towards self-determination, employment options, transitioning to post-secondary education alternatives, and the like. And, if necessary, preparing the alternatives to guardianship for the student for when he or she does reach the age of majority."
"We don't know how many families are faced with this very significant decision," said J. David Sienko, of the Office of Special Populations, Rhode Island Department of Elementary and Secondary Education and the facilitator for the Rhode Island Transition Council, which provides assistance in the transition of students with special needs from school to adult life.
"Last year there were 2,930 students between 17 and 18 in special education and the families of as many as 500 of those might be faced with the guardianship issue."
He added that teachers feel "very compromised" because they are being asked by parents for advice about guardianship.
While he said that teachers should avoid giving families advice about guardianship he said that the conference was a "call to action" to reach out to those families who are likely to need counseling about it.
"Rhode Island is a small state, we could make those phone calls over the course of a year."
Echoing Sienko's call for action was Claire Rosenbaum, of the Sherlock Center's Family Support 360 Project that is involved in transition planning for teens with significant disabilities.
"Many families have already chosen to obtain guardianship for their son or daughter before they contact us," she said. "Often they'll say a neighbor, a friend, another family, a lawyer or someone at the school has told them that guardianship is the way to go. So getting really good information about alternatives to families in a timely way is critical."
She also said that long before they have to consider the guardianship issue, families need to begin to help their child with a disability develop decision-making skills. Too often, she said, when she meets with families and teachers about transition, the student isn't there. But students need to be involved in any discussions about themselves. "If we do that when they're younger, then they will be better able to help make some decisions about transition when they reach 18."
Sienko emphasized that schools cannot teach self-determination skills in the classroom because they are developed through real lessons learned in the community.
