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Catching Up with Reality: Recognizing and Valuing the Family’s Role in Recovery

Network, Fall 2006

Over 600 million dollars are spent every year in Ontario by the provincial government on community mental health services alone. Hundreds of millions more are dedicated to hospital-based psychiatric services. Despite this investment, access to a full continuum of care for every individual with serious mental illness is lacking in every community in Ontario.

When people in crisis can’t access services, when they are turned away at emergency rooms or told that a waiting list is closed, where do they turn? In many cases, to the people they can always rely on, any time of night or day – their family.

‘When you’re talking about community support, like supportive housing, and you’re dealing with a system where there’s not enough of it, far too often community support means relying on family support,’ says Emily Collette, a community outreach worker from FAME, the Family Association for Mental Health Everywhere.

FAME is a community mental health agency that is organized for and by families to support them in their role as caregivers. Three of the four community outreach workers at FAME discussed the issues facing family involvement in the mental health system with Network magazine. Mary Jursinic says that she and the other workers support families ‘in their roles providing emotional, practical and financial support’ to the family member with a mental illness. FAME’s services include providing professionally facilitated peer support groups, one-to-one support, and educational events. They also run psychoeducational groups for young children with a family member with a severe mental illness and youth support groups.

Despite the reality that families provide support, and for many people are the main caregivers, families as a group have little formal role in the mental health system and receive almost no government funding. The Canadian Mental Health Association’s position paper A Framework for Support states that ‘Families are the single largest group of caregivers, often providing financial, emotional and social support, although their role generally goes unrecognized…. It is ironic that professional service providers…receive almost 100 percent of the mental health dollars, while families, who also provide care and support, receive virtually no financial resources.’

Families want that to change. They say that the time is right during the current transformation of the health care system in Ontario to ‘make the case’ for recognizing the role that families play.

‘Our concern is that families are a critical part of the mental health and addiction systems but are often not included, either in the planning of the system itself, having services dedicated to families or sufficient financial support for family self-help,’ says Ursula Lipski, director of policy and research at the Schizophrenia Society of Ontario. The Schizophrenia Society provides support and education to improve the quality of life of families affected by schizophrenia. Through the provincial office and their network of chapters across Ontario, they promote community awareness and seek to empower families.

One of the first steps toward formally involving families is to recognize the degree to which family caregiving is essential to our health care system.

Families struggle to fill the considerable gaps that exist in the system, starting with the period when a person first becomes ill but isn’t yet connected with mental health services. Marta Campos of FAME says, ‘We support families even when there is no formal diagnosis, when someone doesn’t want to see a doctor but the family doesn’t want to ‘form’ them [fill out a form under the Ontario Mental Health Act which allows the police to take a person to a hospital for psychiatric assessment]. We take the time to meet with these families where, even though there is no diagnosis, there may be involvement with the police or Children’s Aid services, or the person may have an addiction or be homeless.’

The family’s role in the system may involve connecting the ill person with both acute-care hospital services and with the needed community supports afterwards. ‘A lot of people don’t go into the system willingly,’ observes Jursinic, ‘so when you see that someone is unwell, it’s the family member who has to get the Form 2 [which must be signed by a justice of the peace], who has to call the police, and go to the hospital, and help get them admitted.’

After a stay in the hospital, there is still work to be done. ‘A lot of people when they’re discharged from hospital don’t want to talk about housing or ODSP [government income support],’ says Jursinic. Family members will often step in to assist in filling out the forms, and get people on the waiting lists, so that when their loved one is ready, the services will be in place for them.

A key piece of the work of family organizations like FAME is educating families about the array of mental health services and supports that are available. ‘Navigating the system,’ says Campos, ‘is like starting at ‘square one” for family members who have never been exposed to it before.

But even when people are connected to services, families are still involved. ‘I think it’s important to note,’ Jursinic reminds us, ‘that although the government is putting more money into the mental health system, such as investments in case management and assertive community treatment teams, the family still plays a big part. Whether it’s taking their loved one to the psychiatrist, reminding them about appointments or helping with groceries,’ families are there.

Beyond the practical and emotional support, there is also the reality of families financially supporting their loved ones. ‘If you’re on ODSP, even if you’re in supportive housing, unexpected costs come up. How can you afford a phone? Clothes?’ Jursinic asks. ‘It’s families who ‘chip in,” Jursinic answers, underscoring the fact that an underfunded mental health system is relying on families to make up the gap between the needs and the available resources.

The Schizophrenia Society and FAME are members of the Family Mental Health Alliance. Together with other family groups and individual family members, the Alliance ‘raises the profile of families, to get more services for families, and to get greater acknowledgment for the work that families do,’ explains Lipski.

The Alliance and other groups are collaborating on an advocacy paper that will be launched in the fall of 2006. ‘Families: Partners in the Mental Health and Addiction System’ describes the impact mental illness and addictions have on families, outlines their role and contribution – to both the recovery of their loved ones and also the formal health care system – and explains what families need. CMHA Ontario, the Ontario Federation of Community Mental Health and Addiction Programs and the Centre for Addiction and Mental Health are also partners in the project.

‘It’s a tool, an advocacy document to really make the case for families,’ Lipski of the Schizophrenia Society says. ‘It’s an opportunity to stake our ground in this shifting landscape in health care right now.’

What are families asking for? Lipski identifies four broad areas that are described in detail in the advocacy paper. Families need services dedicated to families. They need peer support, the opportunity for families to learn from each other. They need health care providers to recognize families as partners in their loved one’s care, rehabilitation and recovery. And finally, they need recognition by government and health-care planners of their role as partners in system planning and decision-making.

‘It sounds very basic,’ says Lipski, but when the Alliance tried to find out exactly how much funding the Ontario government was investing in family services, no one could provide an exact dollar figure, as it’s such a small sector. As Collette says about FAME, ‘an organization like ours, which focuses exclusively on family support, is really unique.’ The Alliance says that more of these unique organizations are needed, and that funding from the government is required.

Funding would allow family organizations to provide increased opportunities for professional one-to-one support, peer support and family-to-family educational programs. These investments are needed, Lipski says, ‘because if you don’t look after families, they can go through crisis themselves, with their own health compromised. When they’re not well, they can’t be effective caregivers for their loved ones.’

Families are available 24 hours a day, 7 days a week, putting great stress on them. Jursinic says that family respite services are desperately needed to help families safely take a break without worrying about their family member. Collette says flexibility would be essential for these services. ‘I’ve heard families say they want a 24-hour telephone support line that’s specifically for them.’

Recognition for their role in their loved one’s care, treatment and recovery is also one of the needs identified by the Family Mental Health Alliance. ‘We have to start with the very basics and open the lines of communication,’ Collette says. Privacy concerns are one of these basics. ‘I can’t believe how many family members are still being told that they aren’t even allowed to speak with the doctor,’ Collette says.

While family organizations are actively educating both families and professionals about the reality of privacy legislation and its impact upon them, this isn’t something that can simply be mandated, Lipski says. ‘We need an attitude change, a mind shift with some professionals, so that they can spend even ten minutes with a family. They don’t have to break confidentiality. There’s a lot that professionals can do to educate the family without going into the specifics of a situation.’

Finally, families need to be involved at a systems level, to be able to participate in the transformation of the health care system. ‘Family members have a ‘front-row view’ of the system, how it works and how it doesn’t,’ Jursinic says, which makes it essential that their perspective is recognized. Involvement, however, has to take into account the reality of families’ lives. As Lipski says, family members are often working and providing care to their ill relative. ‘Then to expect them to be involved, whether it’s at planning tables, sitting on committees or running peer support or psychoeducational groups – there’s only so much that individuals can do.’

‘If we want families to be meaningfully involved,’ Lipski continues, the system has to accommodate them. That can mean holding consultations after work or on weekends, providing honorariums for attendance and paying for transportation costs.

Family advocates say that change is happening, but that the pace is slow and uneven. ‘There’s beginning to be recognition that we do have something to contribute,’ Lipski says. They’re planning to use the advocacy paper to continue to push for increased recognition.

Recent consultations organized by Ontario’s Local Health Integration Networks (LHINs) have demonstrated some of the successes and ongoing challenges family advocates face. LHINs are the new organizations created by the provincial government to transform the health care system. ‘There have been opportunities and openness with some of them,’ notes Lipski. The Family Mental Health Alliance successfully advocated for the Toronto Central LHIN to specifically include families in community consultation events. ‘If we didn’t have the family organizations, we wouldn’t necessarily be on the radar,’ says Jursinic. ‘We put families on the radar so that our issues get to people.’

Family advocates are cautiously optimistic. Commenting on the Toronto Central LHIN consultation process, Lipski observes, ‘It was quite a success to go from them not even knowing that we are a stakeholder to being seen as a fairly major stakeholder.’ As a result of this activism, the LHIN ‘allocated 20 percent of the spaces at a mental health and addictions planning day to families.’

Despite these successes, observes Collette, ‘we’re just at the initial phase of acknowledging that families are very often the main caregivers, and the system needs to catch up with that reality.’ Catching up to the reality is important not only for family members, and not only for the professionals who provide formal treatment and support, but most especially for the person with a mental health or addiction problem. ‘Family members play a key role in a person’s recovery process,’ Campos reminds us, ‘because your family are the people you can always count on.’

Heather McKee is a community mental health analyst with CMHA Ontario.

» Return to Network, Fall 2006 – Contents