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
"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.
The Rhode Island Disability Law
Center (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 Sherlock Center on
Disabilities (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.
The Rhode Island Developmental Disabilities Council
John Susa, Chairperson
Mary Okero, Executive Director,
400 Bald Hill Road, Suite 515 Warwick, RI 02886
401.737.1238 (Voice/TDD) Fax: 401.737.3395 e-mail: