By: Kim Goggins
As Wendy Richardson’s 21-year-old son, Nathan, was led to an ambulance in handcuffs, he asked her for a kiss, not knowing if he would ever see her again. The incident marked the end of several weeks of Nathan spiralling into a state of “unreality,” explains Wendy, where he took on the personalities of characters in a game. When he became irrational and then violent towards his brother, she had no choice but to call 911.
As someone with autism, Nathan appears and speaks well but is very anxious about change and has trouble relating to others. When he is fearful he can be more aggressive, but his family had never seen this behaviour before. He had seen a psychiatrist regularly since he was 13 but had never been hospitalized.
Nathan was taken to the emergency department by police and then transferred to a local hospital’s psychiatric ward. But Wendy felt that the attending psychiatrist didn’t believe Nathan was in crisis. “We got the impression that the psychiatrist thought we just dumped Nathan at the hospital,” says Wendy. The psychiatrist did ask about events leading up to the crisis, but we knew he wasn’t really listening. He had a preconceived idea of the situation.”
The Richardsons’ ordeal is not unique. It is estimated that between one and three per cent of Canadians have a developmental disability, and that 30 to 40 per cent of those have co-occurring mental health issues known as a dual diagnosis. In fact, developmental disability is the most common disability in psychiatric hospitals; yet the needs of people with a dual diagnosis are largely unmet, with gaps in services and a need for more trained professionals.
However, the situation is slowly changing, prompted in Ontario by a study that looked at how to better match psychiatric services to the needs of individuals with dual diagnosis. In 2003, Dr.Yona Lunsky, research section head of the Dual Diagnosis Program at the Centre for Addiction and Mental Health (CAMH) in Toronto, spearheaded a three-year study that examined the needs of approximately 1,700 individuals with a dual diagnosis out of almost 13,000 inpatients and outpatients using Ontario’s psychiatric hospitals. The study brought together staff from the nine psychiatric hospitals involved, as well as families, policy makers and community mental health and developmental services. “In some regions, the focus group led to more advocacy and co-ordinated efforts between the mental health and developmental services sectors,” says Lunsky.
It was at one of those focus groups in Thunder Bay that Janet Sillman, vice-president of Mental Health and Addiction Services at St. Joseph’s Care Group, sat down for the ﬁrst time with people from the developmental services and mental health sectors to discuss how they could work together. “That was the start – not only recognizing the target population but also recognizing the value of working across sectors,” says Sillman.
Representatives from both sectors came together in 2005 as the Northwestern Ontario Dual Diagnosis Working Group and continued to meet quarterly for two years. Part of their focus was to follow up on the study’s recommendation for specialized level 4–type services, which involve community-based residential treatment with a strong rehabilitation component. The group also led to the establishment of a high-support home where people with developmental disabilities who were longterm inpatients of Lakehead Psychiatric Hospital could be supported in the community.
This home, Evergreen, opened its doors in January 2008, becoming home to ﬁve people with dual diagnosis who had lived at the hospital and did not meet the criteria for other highsupport residences. “They are living like they would in a family environment,” said Sillman. “They’re going to community centres for craft clubs; they’re integrated into that community. And these are people who were living in a hospital for up to 10 years.”
Five months after the the ﬁrst phase of the study was completed, the Ministry of Health and LongTerm Care announced funding for communitybased services, including crisis response, early intervention in psychoses and assertive community treatment teams. “This funding is allowing community agencies to hire staff with expertise in dual diagnosis,” says Alex Conant, manager of the Dual Diagnosis Consultation Outreach Team in Kingston, part of Providence Care Centre Mental Health Services. One such position provides triage through the system and determines whether clients need the services of the outreach team.
Intended for shortterm treatment and in its ﬁfth year, Conant’s team did not exist when the study began but has since expanded to include ﬁve clinicians – a psychologist, occupational therapist, two nurses and a social worker – as well as two parttime psychiatrists.
Conant also applauds the four Community Networks of Specialized Care that were established across the province in 2006/2007 as part of the transformation of developmental services. Funded by the Ministry of Community and Social Services, its purpose is to enhance service to adults with developmental disabilities who need specialized care for coexisting mental health and/or behavioural issues.
“These networks are very important because they’re developing a continuum of services,” says Lunsky. “They’re linking the health and social services sectors and trying to integrate service coordination. The networks are also integrating research and education and training, a need we highlighted in the initial report.”
Lunsky notes that the study helped to draw attention to the plight of people with dual diagnosis, which became an advocacy issue for the Ontario Ombudsman’s ofﬁce and other groups.
The study’s ﬁndings reﬂect the situation across the country, where other provinces also struggle with interministerial funding and a shortage of expertise and services, as reﬂected in a 2005 national survey about dual diagnosis that involved specialists in mental health and developmental disability, advocates and family members and policy makers. The survey, led by Lunsky, showed that specialized crisis services, inpatient services and emergency room expertise were limited across the country. The major challenges identiﬁed by survey respondents were lack of services, shortage of expertise and limited funding.
However, innovative programs throughout Canada are addressing such gaps in service and expertise. In 2003, the Arnika Centre opened in Calgary, Alberta, providing outpatient psychiatric services to people with developmental disabilities with a referral from a family physician. In a team environment that includes a psychiatrist, nurse coordinator and social worker, as well as access to a psychologist and a neurologist, the program aims to stabilize clients in the community, reducing the need for hospitalization. Of the 440 clients the centre sees in 1,200 clinic visits annually, approximately 105 are new assessments and there is a threetosixmonth waiting list.
Funding is always a challenge, says Dr. Susan Carpenter, Arnika’s medical director and founding psychiatrist. “This population is a very low priority, except when someone gets stuck in an inpatient bed,” she says. “Suddenly it’s high priority to get them out.” Carpenter says that a spectrum of services is needed in Alberta, from the most intensive stabilization in hospital to communitybased services and rehabilitation models.
While Alberta and Ontario are still in the process of closing their remaining institutions for people with developmental disabilities, British Columbia has long since closed its institutions and has been serving people with dual diagnosis for 12 years in the community. “We have very wellorganized community mental health teams, which are funded through each of the ﬁve health authorities in the province,” says Dr. Robin Friedlander, a clinical associate professor of psychiatry at the University of British Columbia.
However, Friedlander, who is also chair of the Developmental Disability Section of the Canadian Psychiatric Association, points to the lack of specialized beds (only eight beds for adolescents and adults) as a problem. “We need specialized mental health beds for this population because when people in crisis are sent to the local hospital for several weeks but don’t get
better and there is a long waiting list to get into one of the specialized beds, patients ﬁll beds without getting proper treatment,” says Friedlander, adding that the Fraser Health Authority would like to put together its own resource for this population but does not have the necessary commitment from other agencies to comanage the resource.
This lack of resources within communities and hospitals to provide a continuum of service is the one challenge highlighted in Lunsky’s Ontario report that is the most difﬁcult to implement throughout Canada. “People are trying to take on that general recommendation of the full spectrum of services, but there are also the challenges of having trained people and being able to fund the services,” she cautions.