The Globe and Mail, editorial
                Tuesday, February 26, 2002 – Print Edition, Page A20

                Stephanie Jobin was 13 years old and suffered from a
                severe form of autism. Her death in an Ontario group
                home raises questions that cut to the heart of how
                Canada cares for its most disabled children.

                Stephanie suffocated in her Brampton, Ont., group
                home after she was "restrained" for 20 minutes -- a
                beanbag chair on her chest, a staff member sitting on
                the bean bag, another staffer holding down her feet. No
                inquest was called. As The Globe's Victor Malarek
                reported on Saturday, her father was never told the true
                cause of her 1998 death.

                The questions touch every facet of the system. Staff
                training in crucial areas at the privately owned,
                for-profit residence was minimal. The turnover was
                ludicrous: 35 workers in the last few months of
                Stephanie's life, in a group home with just four
                residents. The use of restraint was unspeakable: more
                than 1,000 minutes of it in one month alone. Drugs
                were pumped into Stephanie indiscriminately. What
                official oversight occurred was often detached to the
                point of denying her humanity. She was visited by
                workers who did not bother to learn her name.

                But by focusing too closely on all these questions, we
                may obscure the fundamental issue. The group home is
                not a home. It's an institution. A home is that place
                where one's family is, with the type of oversight that
                money can't buy and regulations can't create.

                When Stephanie's family wanted to keep her at home,
                the government offered only a part-time respite worker.
                In the group "home," the government paid all
                Stephanie's costs, which were at least $215 a day --
                $78,475 a year.

                Other deaths have raised similar issues. Last month,
                Maurice and Belva Baulne of Kelowna, B.C., took the
                life of their disabled adult son Reese, and their own
                lives. They had reportedly wished to care for Reese at
                home, but found that government subsidies were
                available only if they institutionalized him. Their act
                was terribly, criminally wrong; but the underlying issue
                needs attention. Severely disabled children and adults
                need an individual plan of care, a plan flexible enough
                to allow for home support.

                What are the objections to permitting such flexibility?
                The main one is the floodgates argument: that if the
                state paid for one, it would have to pay for all,
                including those whose families now bear the costs of
                support.

                Families are thus forced to choose. Keep your children
                at home and receive minimal support, or send them off
                to an institution where they can receive intensive care
                paid for by the state. Underlying the reluctance of most
                provinces to provide extensive home support may be a
                moral inhibition about having the state pay families to
                do what families are supposed to do: take care of their
                children.

                But Stephanie's case provides a strong argument for
                letting the money follow the child, rather than the other
                way round. At $215 a day, the state was already paying
                heavily; it might have been less costly to keep her at
                home. It is illogical that society accepts financial
                responsibility for severely disabled children such as
                Stephanie but insists they be taken from their parents as
                a condition of that support.

                The Ontario government has taken the shameful
                position that privacy legislation means it cannot speak
                publicly about Stephanie's death or about Digs for
                Kids, the agency that housed her. This official silence
                underscores the need for an inquest. Had one been held
                at the time, another 13-year-old, William Edgar, might
                not have died a year later in another Ontario group
                home. He stopped breathing after being sat on by a
                250-pound staff worker.

                Forty years after long-term hospitals for disabled
                people began opening their doors and returning their
                residents, adults and children, to the "community,"
                Stephanie's death suggests we haven't travelled far at
                all. This country should begin to look homeward for
                the answers.