Looking for inclusion: as a minority group, people with disabilities, and their families, are fighting to have their needs met, and to be seen as part of society.

Scott Starson lives in a medium-security psychiatric unit at the Royal Ottawa Hospital. He is said to be a brilliant physicist with extraordinary potential. But he also thinks former Prime Minister Pierre Elliott Trudeau was killed by aliens, and that he will soon marry comedienne Joan Rivers who he has never met. Diagnosed as psychotic, Mr. Starson was originally locked in a small maximum-security cell and forcibly treated with drugs. He claimed the right to be spared the brain-dulling medications so his mind would be clear to pursue his research even though this meant the loss of his liberty. He said that returning to "normal" would be "worse than death" for him.

In June 2003, the Supreme Court of Canada ruled six to three that Mr. Starson does have the right to refuse treatment. The justices stressed that the onus is on doctors to show why treatment must be forced, and that their arguments in this case were not convincing.

The ruling raises questions about how society accommodates the needs of the mentally ill.

In April 2000, the Ontario government introduced tough new legislation covering mental health. The new rules made it easier to force treatment on people with serious mental illnesses who pose a risk to themselves or others. Under community treatment orders, a person with a severe mental illness, after being released from hospital, has to undergo a treatment regime as specified by a doctor. If the person is deemed incapable of consenting to such treatment, someone else would be authorized to make the decision. But, Erick Fabris, spokesman for the No Force Coalition, which represents those opposed to community treatment orders, said the move is "a form of chemical imprisonment."

"We feel it's unconstitutional, irresponsible, and we are going to challenge it," he said. "You can't force people to heal."

Ted Fielding, president of the Schizophrenia Society of Ontario has a different view. He says the legislation is similar to that in Manitoba, Saskatchewan, and British Columbia. "This isn't about sweeping the streets," he says. "It allows people who are mentally ill to get the treatment they need and haven't been getting."

It's not surprising that a lot of people are shouting about protecting the rights of developmentally handicapped people. As recently as the 1960s they were simply locked up in large institutions, living in grim, overcrowded, and often-abusive conditions. Very few families kept their handicapped children at home.

The Woodlands Institution didn't close its doors until 1996 as part of a continent-wide move away from institutionalizing the mentally ill and disabled. A recent report on Woodlands, in New Westminster, B.C., confirmed what former residents and their families had been saying for years; that sexual and physical abuses were rampant, with staff preying on their highly vulnerable charges. The abuse went largely undetected and underreported. Nobody was going to listen to complaints from people who could so easily be dismissed, or discredited.

Starting in the 1950s, parents were encouraged to raise theft children at home, and continue to do so when they became adults. Many people who are now cared for by their families would have been institutionalized had they been born a generation earlier.

When institutional care was phased out, governments set up supportive community-based programs for some of these children. And, in 1985, Bill 82 in Ontario was among legislation that gave them the right to educational support in elementary and secondary schools. Then came the government cutbacks. Now, there are fewer programs, and support services that families need to keep their adult children at home after high school, simply are not there. It's a very difficult adjustment for everyone. And families often can't cope on their own, either financially or physically. So, the question is, what is society's responsibility.

Rehabilitation International (RI), an advocacy organization for the disabled, believes that every handicapped person should receive the rehabilitation services needed "to optimize mental, physical, and functional well-being, thus ensuring the capacity of the disabled individual to life as independently as any other citizen."

RI points out in its Charter for the Third Millennium that, "In developed and developing countries, in the North and South of the world, segregation and marginalization have placed disabled people on the lowest rung of the social and economic ladder. In the 21st century, we must insist on the same human and civil rights for people with disabilities as for everyone else." And that requires "dismantling all environmental, electronic, and attitudinal barriers to full inclusion in community life ... (and creating) compassionate policies that respect the dignity of all people and the inherent balance and benefits derived from the wide diversity among them.

"... In the third millennium, it must become the goal of all nations to evolve into societies that protect the tights of people with disabilities by supporting their full empowerment and inclusion in all aspects of life."

But the reality now is that funds are painfully short for people with developmental handicaps. In Ontario, for example, most receive only enough support for a few hours a week of assistance or programs. A 2001 provincial survey showed as many as 17,228 people on waiting lists for financial support, day programs, or residences. And, very little of what funds are available goes to individuals in need. This despite the fact that it costs far less to help caregivers keep handicapped people at home than it does to support them in group homes or institutions.

According to one report, Ontario government funding is set up so parents who choose to keep their children at home and take care of them themselves receive far less financial support than facilities or share home placements would. For example, it would cost the government a minimum of $60,000 to take care of an individual with severe developmental disabilities in an adult group home setting. Institutionalization would cost about $100,000 a year. On average, most individuals receive the Ontario Disability Pension, which is less than $1,000 a month.

In any event, many parents don't see group homes as an option. They're getting together to fight for their children's right to have a life as members of their families and their communities.

Programs such as Project Hope in London, Ontario, are what these families are looking for. The project is a day program designed for young adults who have a combination of physical, developmental, and medical challenges, and need 24-hour support while living at home (because they're no longer eligible for educational support when they're finished high school). The government agreed to provide about $350,000 (after twice refusing) to fund 12 severely developmentally disabled young adults under the project that was launched in May 2003. The program provides consistent care by a trained caregiver. It will cost about half what the province would pay for individuals to be supported in a residential facility, less than a third of the cost of long-term care, and specific individuals will receive care and support suited to their own needs.

It took four years to develop the program but as one parent says, it will mean that her daughter "will have friends and something to look forward to each day."

There have been numerous tragic cases of desperate parents killing their handicapped children, and themselves. Usually, this is because they couldn't get the assistance they needed, or they simply wanted to end their child's suffering. But, advocates for the disabled say these caregivers deserve no sympathy. Maurice and Belva Baulne killed their mentally handicapped son Reese and themselves in January 2002 by carbon-monoxide poisoning. At the time, a spokesman for the Council of Children with Disabilities said, "There's a problem when we see caregivers as victims in these situations." The couple had financial and health problems, were unable to receive government aid, and did not trust anyone else to care for their son. Nevertheless, the Council says: "You cannot justify murder because the government did not provide enough support."

So, in one of the most publicized cases, Robert Latimer of Wilkie, Saskatchewan was sentenced to a minimum 10 years in prison for killing his 12-year-old daughter Tracy in 1993. Tracy was unable to walk, talk, or feed herself, and Mr. Latimer said he wanted to end her suffering. Danielle Blais of Montreal received a 23-month suspended sentence for manslaughter in 1997 after drowning her six-year-old autistic son Charles-Antoine. Ms. Blais slashed her wrists but survived.

But, regardless of their tragedies, critics are adamant that these parents committed murder, violating their children's security and right to life.

Meanwhile, advocates say families need more programs like Project Hope.

SUGGESTED ACTIVITIES:

1. A British Columbia mother thought she was doing the right thing for her severely handicapped 25-year-old son when she authorized an operation to sterilize him. Sandra Crockett's son has a mental age of four. His speech is limited and he can't look after himself. But, in June 2002, the province's public guardian sued Ms. Crockett saying what she did was "unlawful, unethical, high-handed, arrogant, and demeaning" to her son. Others say it was a gross violation of his human rights. She says without the operation he probably would be in an institution. An earlier lawsuit tried to have Ms. Crockett declared unfit to make personal decisions for her son. But the court was on her side, saying: "She seems to have provided all the care one could ask of anyone." The 2002 action was settled out of court with the doctor who performed the surgery (who was also sued) offering to pay Ms. Crockett's son $150,000. With that the case was closed, but she planned to counter-sue the public guardian in an attempt to help other parents of mentally handicapped children. Discuss this case, and write a follow-up report on it.

2. Rehabilitation International (RI) is a worldwide network of people with disabilities, service providers, and government agencies working together to improve the quality of life for disabled people and their families. Founded in 1922, it now has more than 200 member organizations in 90 nations, with the aim of eliminating what it sees as the "ignorance, prejudice, superstition, and fear (which) still govern much of society's response to disability." Do a report on some of the organization's activities.

3. In 2001, families of severely disabled children launched a $500 million class-action lawsuit against the Ontario government for denting funding and services that their lawyers say they are entitled to under provincial law. A provision in Ontario's child-welfare law calls for special-needs agreements to be negotiated between the province and families of children with serious disabilities. But the special-needs agreements were cancelled in 1997. One lawyer said the lack of government support has left families without the financial and emotional reserves to care for extremely needy children with no option but to surrender them to children's aid societies. The lawsuit went to court in February 2003. Find out how it ended.

WHAT THE DISABLED THINK

The Council of Canadians with Disabilities believes in the following:

Citizenship: Persons with disabilities hold the same rights and responsibilities as other Canadians. Barriers to our participation discriminate against us and must be removed.

Self Determination: As full citizens, we assert our right to direct our own lives and make our own decisions.

Consumer Control: We must be centrally involved in the decision-making processes that affect our lives.

Equality: The Charter of Rights and Freedoms guarantees equal benefit and protection of the law and prohibits discrimination based on physical or mental disability. All other legislation must be brought into line with the Charter.

FACT FILE

Statistically, at least 10 percent of any society is born with or acquires a disability, and about one family in four includes a disabled person, according to Rehabilitation International.

FACT FILE

In 2001, the Toronto Association for Community Living had group-home beds for 280 adults, and 900 families on the waiting list; some families sit on the list for 20 years.

FACT FILE

The Halifax School Board alone made $11.5 million in budget cuts in the summer of 2000, resulting in the elimination of 60 educational assistants who helped physically and learning disabled students.

Websites

The Council of Canadians with Disabilities--http://www.ccdonline.ca

Rehabilitation International--http://www.rehabinternational.org