Setting the Table for Recovery
Network, Fall 2005
When George Smitherman announced his government’s plan to transform the province’s health care system, it sounded to some like a step towards their ideal goal — a recovery framework for mental health services. In his speech on September 9, 2004, before an audience of health-care policy-makers, providers and advocates, Ontario’s Minister of Health and Long-Term Care outlined the essence of this transformation: “The ultimate goal is a system that embraces keeping people well and caring for them when they are sick.”
Recovery has become an important concept in mental health. Given the appropriate supports, people with mental illness can and do lead productive, fulfilling lives. Recognition of this fact should be central to the delivery of mental health services. A recovery framework encompasses all aspects of the individual’s health — not only their health care needs, but also their basic needs for shelter, food and clothing. It involves the health of the individual’s body and mind, their social networks, their community, and their spiritual and emotional life. Most importantly, recovery necessitates active participation by consumer/survivors in every aspect of the mental health system, from service design to delivery.
Mental health service providers still have some distance to go to make this philosophy a reality, but a recovery framework has become a widely accepted model for mental health care. “Recovery is the objective we all agree upon,” notes David Reville, a consumer/survivor and social policy and community development consultant, in a recent supplement inCanadian Public Policy. “But recovery comprises many different elements and there is no one-size-fits-all formula.”
With the transformation agenda, the provincial government seems to be embracing the idea of putting health care consumers first in health care planning. During his speech, Minister Smitherman spoke about a system driven by the needs of the patient. But not everyone in the system is sure that the results will bear out this promise. For many involved in the mental health field, from consumer/survivors to service providers, the critical question is, Will the transformation agenda support or inhibit a recovery framework for mental health services?
Of the several initiatives undertaken by the transformation agenda, none seems more relevant to consumer/survivors and mental health service providers than the development of Local Health Integration Networks (LHINs).
LHINs are regional bodies set up to plan, administer and eventually fund health care services within communities. The policy of regionalizing health care planning is a widespread one, with almost every province across Canada currently employing some type of regional model. But the jury is still out on the impact of regionalization on mental health care. Some feel that LHINs may serve to more accurately reflect local needs, allowing service providers to be more responsive and collaborative. Others express concern that LHINs might focus too exclusively on a medical model of health care, overlooking other necessary conditions for recovery: stable, affordable housing, appropriate income supports, employment, educational and training opportunities, and peer and social supports.
Shawn Lauzon, executive director of the Ontario Peer Development Initiative (OPDI), a provincial association of consumer/survivor organizations and initiatives, sees the potential of LHINs. “I believe that’s where the transformation agenda is going — to make sure that there is a holistic approach to health that will include housing, education, income, the determinants of health.” On the other hand, Diana Capponi, a psychiatric survivor and coordinator of the Employment Works! program at the Centre for Addiction and Mental Health, says, “My fear is that [the LHIN model] is very much a medical model, and that the gains we have made [in the community sector] will be lost.”
The concern some providers have is that if LHINs don’t incorporate an understanding of the broader determinants of health, they will be unable to truly support a recovery model of mental health care. Brigitte Witkowski, executive director of Mainstay Housing, the largest non-profit provider of supportive housing in Toronto, says, “We look at the biomedical needs, but the biomedical system is not set up to look at social and environmental issues. If the response to the question ‘What are my health needs?’ is, ‘I need not to have shootings in my community,’ then the doctor listening will say, ‘Well, nothing for me to do here!’”
In some ways, the language of the transformation agenda underscores the concern — language such as “patient.” Witkowski notes, “People need access to medical treatment, particularly if they are living with severe and persistent mental illness. But if you are coming from community supports, you are only a ‘patient’ while you’re receiving that treatment. The rest of the time, you’re a tenant, an employee, a citizen.”
If the LHINs do focus on the traditional medical model of health care, the need for community mental health agencies to compete with high-profile organizations within the system for resources is worrisome to many. LHINs will eventually allocate funding for much of the health care system, including hospitals, long-term care facilities, community care access centres, community health clinics and addictions agencies. As Reville notes, “Part of the problem for consumer/survivors is that the health field is extremely competitive and survivors don’t have the sexiest stories to tell, because of the stigma. So sometimes it’s easier to tell the cancer care story.”
“I don’t see myself able to compete with MRIs, cancer care or any of the other things Ontarians want from their health system,” agrees Victor Willis, executive director of the Parkdale Activity and Recreation Centre, a community centre offering support to consumer/survivors. “We have report after report that identifies the need for community services to be available and accessible. But how does that pan out when the competition for health care dollars is pretty steep, and when push comes to shove, MRIs and knee replacements take precedence?”
The other question is whether a medical model that emphasizes measurable results will take into account the more difficult to measure qualitative outcomes of many community programs. For example, Witkowski sees the quality of life experienced by consumer/survivors living in her organization’s housing improve through their participation in a tenants association. “These are health strategies that have an outcome, and the challenge of measuring them is that they are on an individual basis in a group setting. We know that their health outcomes are improving — they are interacting better with other areas of the health care system. It can measure that they don’t go to the hospital as much, but it doesn’t measure other aspects that are incredibly important. We are talking about people’s self-perceptions and their ability to navigate the world around them.”
Not only does a recovery framework require an understanding of health care that extends beyond purely medical types of treatment, it fundamentally requires the active participation of the system’s users. But while mental health care service providers had a strong presence at the LHIN consultation workshops that were held in the months following Minister Smitherman’s initial announcement, it remains unclear whether, or how, health care consumers, and specifically psychiatric consumer/survivors, will be consulted. A community engagement process has been promised, and on September 16, 2005, the ministry announced a series of public information meetings about the LHINs, but no consultations with those who actually use the services have been scheduled.
Even if those consultations take place, as Willis notes, for many consumer/survivors, coming to the table isn’t easy. “How do you tell people who have been told they are irrelevant for so long to turn around and be their own advocate and demand that they get what they need to live… We need to focus on developing the skills and abilities of the people who can speak to it directly. It’s where the focus has to be for a LHIN, I believe.”
Another challenge is finding the resources consumer/survivors require to get to the table — travel costs, child care and other expenses. So far, the ministry has provided no funding for any organization or individual to participate in consultation about LHIN development. While some consumer/survivor organizations did participate in the consultation workshops, for many, the costs were too high. “The operating budgets of consumer/survivor initiatives don’t have high travel lines, and they have lower numbers of staff, so their ability to participate is hampered in that way,” says Lauzon. When the workshops were taking place, he continues, “the ministry was asked if there were going to be any reimbursements to support some of the under-resourced organizations. There were none.”
Consumer/survivors are challenging the ministry to do the difficult work necessary to bring representatives to the table, using consumer/survivor initiatives (CSIs) as a model. “Consumer/survivor initiatives by their very nature have always been membership-driven, community-based organizations, and there’s always a dialogue between the membership, staff and board to ensure everyone is online,” notes Raymond Cheng, a peer advisor at OPDI. “If everyone that is participating in the LHIN process wants to make sure that they are speaking for a patient-centred system of care, it would be appropriate for them to think about the way [CSIs] operate, the way we try to be responsive, and to consider whether they are taking the same stand.”
However consultation happens, it’s a necessary component of a recovery framework. As Willis argues, “A recovery system has survivors at every level. Will the LHINs have survivors involved at every level, and who are they going to be? The table has to be set for them.”
Integration has been a theme of the transformation agenda from the beginning. That critical September 2004 speech by Minister Smitherman referred several times to the need to “build a more integrated, patient-centred health care system.” The mental health sector has responded to this call for greater collaboration with enthusiasm. The 14 community workshops held in November and December of 2004 allowed community mental health service providers to work together in an unprecedented fashion, with very positive results — according to the ministry, mental health and addiction services were named as a priority in each one. The process has helped organizations within the sector build stronger relationships, something that everyone agrees is a positive outcome.
According to Shawn Lauzon, the workshops “alerted a number of CSIs to start looking at their community partners and joining in to make sure that mental health was a strong focus in the outcomes of the consultations.” As a result, he says, collaboration between organizations “occurred and can continue.” Diana Capponi also feels that partnerships are key for the success of both consumer/survivor organizations and service providers: “CSIs need to ensure that their partners are integrating the recovery message, and get them talking about the importance of their initiatives.”
While one of the early outcomes of the transformation agenda is that community partners have taken positive steps toward better integration and collaboration, it is not clear that those in government are taking similar steps. More than one ministry is responsible for the various programs that are so important to ensuring the health of consumer/survivors — in addition to mental health services funded primarily by the Ministry of Health and Long-Term Care, income support and disability issues fall to the Ministry of Community and Social Services, affordable housing is funded through Municipal Affairs and Housing, and children’s mental health services are provided through Children and Youth Services.
The latest addition to this list is the new Ministry of Health Promotion, which will focus on health promotion and illness prevention. Mental health care is generally thought to exist on a continuum, with acute care at one end and mental health promotion and illness prevention at the other. The government’s commitment to health promotion is appreciated by many in the field, but health care providers also wonder about the wisdom of creating what could be two different silos at opposite ends of the continuum. Raymond Cheng puts it this way: “Health promotion, in and of itself, is a very good thing, but right now, if it’s taken away from the transformation agenda, that might in the long run cause the mental health sector to focus more on the acute care and disease management aspect of mental health, and that may not ring true to some people who envision that recovery can go further than something that goes with an OHIP health card.”
The distance between silos is often reflected in the nature of the care an individual receives. His or her needs may be segmented by a system that does not see a whole person. According to Reville, “The siloing of the sector means that the people who are prescribing medication don’t know anything about employment issues, for example.” Capponi is also skeptical about the degree to which LHINs will be open to the importance of employment for consumer/survivors: “I worry about consumer-run businesses. How are the LHINs ever going to understand the importance of that?” Capponi sees a need to bring the government’s various ministries together around mental health care. “It’s well past due that there needs to be a ministry to coordinate all the silos that are created… Recovery isn’t going to happen if all these interests are siloed.”
Willis notes that the need for this function was identified by regional task forces set up by the province to examine mental health care in Ontario, which submitted their final reports in 2003. “The task forces identified that there needs to be inter-ministerial communication, and the LHINs don’t address that. A person in Ontario who has a disability isn’t siloed — they’re a whole person, and they need housing, income support, health care.”
The key to ensuring that recovery has a place on the transformation agenda is a unified, strong consumer/survivor voice, supported and encouraged by the entire mental health sector and the Ministry of Health and Long-Term Care. Reville calls for a reinvigorated consumer/survivor movement, but notes that it might not be an easy task. “One of the dilemmas for any grassroots movement is what mechanisms are in place to help you decide what your agenda is. There are many possible agendas, and it’s totally appropriate for people to be working on different things.”
The lack of funding for CSIs also continues to be an issue. “They have really limited resources,” according to Capponi. “They started far behind the line to begin with, and they’re getting further behind each year.” Willis adds capacity-building to the community’s list of needs. “We need to do some work to develop people so that they can participate equally. If you want a recovery-based system, you need to invest some resources to bring your people up to speed. It’s a great deal of responsibility to be a representative of the larger community. You need to encourage people to make the commitment, provide training opportunities.” Lauzon agrees: “There need to be processes in place to help build the capacity for people to participate in the most meaningful way.”
With strong and meaningful consumer participation, and a LHIN paradigm that recognizes the importance of the determinants of health, recovery may indeed become a fixture of the transformation agenda. “The survivor community has benefited from the advocacy it did with the bureaucracy of the ministry years ago, so it will depend on whether the LHINs are aware that the paradigm has shifted, which would be a good thing,” says Reville. “Or they will revert back to a strictly medical model.”
What consumer/survivors and all stakeholders in the mental health system cannot afford to do is wait and see, because the transformation agenda is progressing apace. As Minister Smitherman said when he announced the transformation agenda, “Is now the time for change? Without a doubt in my mind.”
“Recovery is a journey that must touch all aspects of the internal and external life of a person. The self is at the centre of this journey. Caring for and about the self includes meeting basic needs such as those for shelter, food and clothing, as well as attending to one’s physical and emotional health. But it also includes acquiring sound judgment, perspective and maturity. It is a journey of social and relational connection — to home, family, friends and community. It entails discovering one’s life purpose through work, education, volunteering, or social activism. Finally, it involves an active spiritual relationship with manifestations of the universal that may be pursued through formally organized religion, through reconnection with culture, or though secular pursuits such as music, art and nature.” — CMHA Ontario, “Recovery Rediscovered: Implications for the Ontario Mental Health System,” March 2003
Liz Scanlon is the public relations and policy coordinator for CMHA, Ontario.
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