Remodelling the Village: Supporting Parents with Mental Illness
By Donna Hardaker
Network, Winter 2007
‘It takes a whole village to raise a child.’
– Yoruba proverb
This familiar proverb describes the duality of the life stage of parenting: when adults who are raising dependent children are themselves dependent on their community for resources, time, help and knowledge. When parents have a mental illness, what does the ‘village’ look like? For some it is a ghost town of isolation, poverty and fragmented resources. For others it is a comprehensive and rich network of people and services pulling together to support the fledgling family. This disparity exists in Ontario because there is no formal or integrated system of assistance, education and support for parents who have a mental illness. Parents manage as best they can with available supports, a situation that for many creates an uphill battle to provide materially and emotionally for their children.
What does it mean to be a parent and to have a mental illness? Research shows that parents who have mental illness are at greater risk of poverty and isolation, two significant social determinants of health. Poverty occurs because of difficulty maintaining steady employment through episodes of illness, and subsequent reliance on government income supports. Isolation happens because of breakdown in social supports: extended family may be estranged, friends may have drifted away, and marital relationships may not be able to withstand the strain when a partner has a mental illness.
Parents with mental illness feel as much boundless joy, boiling frustration and bone-deep worry as other parents. And they often experience this with an extra layer of guilt, fear and loss that other parents may not experience – guilt for not being like other parents, fear of losing their children, and loss of the dream of offering their children a ‘normal’ childhood.
Angela Perin (not her real name) was a loving, patient and joyful mother. She was in a stable and loving marital relationship with her children’s father, who was well-employed and devoted to her and their children. She had supportive friends and extended family. Her boys were healthy and thriving. Perin had severe anxiety which she hid from the outside world as she coped with it, coupled with depression due to post-traumatic stress disorder (PTSD) that surfaced shortly after the birth of her second child. She organized her life with her two small children so that she could stay inside when she needed to, screen phone calls, and limit social time. She and her husband searched for a house that had a large, fenced backyard so that her two boys could play safely while she watched from inside the house.
Perin was terrified that her children would be taken away from her by child welfare if they knew about the extent of the anxiety and depression she lived with every day. She was afraid to tell her psychotherapist about her suicidal and homicidal thoughts. ‘I lived in a personal hell, bravely smiling through the day and playing Lego with my boys while battling the chattering sounds in my head. At that time I believed that medication was for crazy people and crazy people were not allowed to keep their children.’ The stigma and the fear of being marked unstable forced Perin into a form of hiding. It would be years before she received the medication she needed to begin to truly feel well.
Perin’s fear of losing her children was not unfounded even though it was unlikely in her case. Removing children from the parent happens too often when parents have a mental illness, according to Eliana Suarez, who worked until recently on an Assertive Community Treatment team at the Canadian Mental Health Association (CMHA), Toronto Branch. Now a PhD student in social work at the University of Toronto, Suarez believes that adult mental health services can play a key role in keeping families together, if mental health workers integrate parenting into the treatment plan for their clients. Mental health agencies, as members of the village surrounding the parent, can view their clients not just as people with a mental illness, but also as parents. In an unpublished research paper, Suarez suggests a model of case management that uses parenting as an element of recovery, where the client develops structured plans and goals. Just as the ability to maintain stable housing, maintain self care and symptom control, build social relationships and find meaningful activity are aspects of recovery already used in case management for people with serious mental illness, so parenting could be added to this list. Parents could be identified, assessed for need, and supported to develop competence, especially in the ability to coordinate services for their families between the mental health and the child welfare systems.
The fractured village that surrounded Wendy Houle did not meet her family’s needs. Houle believes that her family fell though the cracks between adult mental health services and children’s aid services. Houle has severe depression, physical ailments and also has been through a transgender experience. Houle fathered four children in a marriage before transgendering from male to female, and battled severe depression during the separation and divorce from the mother of the children. Houle then received custody of the children, and as a single parent with severe depression, found that social service agencies were fragmented and seemed to be fighting against each other instead of working together to help her family stay intact.
‘The social worker just crossed her arms and asked me, ‘So what can we do for you?’ and I had to ask her back, ‘What do you have to help us?’ But there was no answer. Their services sound great on pamphlets, but it was like pulling teeth to find out what they can do for you. The Ministry of Community and Social Services recommended more service time for us, but we never got it.’
When Houle needed hospitalization because she was suicidal, the children were taken into care by the children’s aid society. Wendy believes that with greater cooperation between the service agencies, her family could have had fewer separations and trauma. Her children, who are now all over 18, have said that Houle’s depression was more troubling to them than her transgender process. Houle currently uses services at CMHA, Sault Ste. Marie Branch, where ‘the staff are wonderful,’ she says. ‘They know about me and they know my children. They are very supportive and understanding.’
The primary goal of the child welfare system is protection of the child, says Michael Shultz, City of Toronto branch manager for the Catholic Children’s Aid Society (CCAS). But ‘the child protection worker wears two hats,’ he continues. ‘There’s the authority role that is engendered in the power to remove a child. Then there is the helping role. The art of being a good child welfare worker is being able to balance those roles. Removal of children is viewed as a last resort.’ According to Shultz, most families that CCAS is in contact with are intact.
Shultz sees his workers facing significant challenges. ‘There are times when others in the community expect child welfare to deal with all these complex issues that require a teamwork approach with collateral community services.’ He believes that communication between service agencies is key. Yet there are no formal cross-system structures to ensure this communication takes place in all cases. His staff often need to create their own links between service systems. One child welfare worker, for example, attends meetings that include the parent and the parent’s mental health worker, to guarantee that they are all ‘on the same page.’ Shultz says that this kind of engagement, although highly effective, is also very time-consuming and eats up the limited resources of his agency. It also is dependent on the energy, resourcefulness and creative thinking of individual staff. Not all families may be so lucky to be assigned a worker who can apply this kind of effort.
David Clodman, a social worker at the Centre for Addiction and Mental Health (CAMH), agrees that the separate hierarchies, budgets, standard operating procedures, responsibilities and accountabilities of the mental health and child welfare systems present significant barriers to integration in service delivery. There doesn’t seem to be a focused effort in Ontario to overcome those barriers, he observes, unlike the transformation initiative in British Columbia, where the BC Ministry of Children and Family Development has implemented legislation and policy devoted to the integration of family services. He says it’s hard to convince administrators of the value of labour-intensive programs that bridge the two systems when the successes are evident mostly in the long term.
In the meantime, Clodman says, ‘We need to work harder at trying to integrate services by training our [mental health] workers to ask basic questions like: ‘Is there a child at home? When you leave the hospital will you be moving back into the role of caring for someone else?’ I don’t think our system is traditionally geared to asking these kinds of questions.’
These questions may be the perfect place for adult mental health workers to start implementing Suarez’s ideas about parenting as a recovery issue and a rehabilitative factor in the outpatient treatment plan.
When formal supports don’t exist in the ‘village,’ people with mental illness must create their own or find alternatives. Jeanette Law of Sault Ste. Marie, a single mother of two, was diagnosed with clinical depression, seasonal affective disorder (SAD) and PTSD when she was 24. She had no family supports and relied on a friend to take care of her children while she was hospitalized.
‘My friend was amazing. She had little ones of her own, but took mine while I was in the hospital. And when I got out and if she didn’t see me for a while, she might come over and do dishes for me, or she might sit with me while I did my dishes. She might remind me that I needed a bath because self-care was a big problem. Or she’d say, let’s go do something with the kids. She helped me so much. I don’t know what I would have done without her.’
Law describes the fear of losing her children: ‘If you are in the hospital for four to six weeks and you’re afraid that your kids won’t be there when you get out, you’re going to be sicker for longer. That stress is there. So a lot of people don’t say ‘I’m suicidal’ and ‘I need hospitalization.’ They just stay home and suffer, and the kids are suffering in the long run.’ Law believes that many parents don’t get the treatment they need and the hospitalization they may require because they are afraid of losing their children.
Law also credits a program of parental relief provided by the Children’s Aid Society with preventing more frequent hospitalizations. Every few months she would request parental relief and her children would be taken to a foster home for the weekend so she could get some rest. As a single parent she was ‘on duty 24-7’ and desperately needed the break. ‘They let me check out the foster home and make sure it was nice. I wasn’t going to leave my kids just any place.’
Jennifer Jacobson, who has bipolar disorder, relies on her parents. She has experienced the trauma of being separated from her son while hospitalized during a manic episode when he was just 18 months old. ‘My parents brought my son to the hospital and at first it didn’t faze me because I was so manic, but when I got back under control, I was very embarrassed. It was terrible.’
Jacobson was separated from her husband at the time of her hospitalization and relied heavily on her parents for support. She lived with them until she was able to return to work and eventually purchase her own home. She still keeps a room in her parents’ house with spare clothes for her and her son. She is able to maintain her privacy and independence, with the security of having a safe place to stay if she becomes unwell.
Sandy Russell of Sarnia, Ontario, lives with anxiety and depression. She also parents a child with severe mental illness. Russell has three sons, and a daughter who has been diagnosed with schizophrenia. When Russell was hospitalized for depression when the children were young, it was very hard on the family, especially on her daughter who relied on Russell for almost all her needs. When asked if she experienced any discrimination because of her depression, Russell mentions reactions from her daughter’s school: ‘They occasionally dismissed me as a flake in the school system because they knew of my depression.’ But Russell believes that parents with mental illness need to be open about their illness and, even though it can be difficult, to ask for help.
Doris Bazinet would agree. She is a client of CMHA, Cochrane-Timiskaming Branch and the mother of two daughters. Her severe anxiety and agoraphobia, which hit when her eldest daughter was two years old, have prevented her from doing many things that most parents take for granted. At one point she didn’t leave the house for three years, and she still doesn’t go outside her house alone. Her mental illness began very suddenly and changed her life drastically: ‘I had been a very outgoing person, then I became just this person at home. If someone came to the door I wouldn’t answer it. Strangers were a no-no. Even now I can see the strain this puts on my husband.’
Bazinet feels sad and very guilty that she wasn’t able to participate in her children’s lives the way she wanted to. ‘I wasn’t one of those parents always helping out at the school. And I feel now that I kind of interfere with my children’s plans – I mean, here’s mom and she can’t do anything outside on her own.’
Robin is Bazinet’s 19-year-old daughter, in her first year at Nipissing University. Robin believes that her childhood was pretty normal. ‘I was too young to know my mom any differently.’ Robin’s experience of her mother’s significant challenges and needs are balanced by what Robin perceives as rewards. Whereas many of Robin’s friends regretted not having time with their parents, those friends thought that Robin was lucky to have a mom to hang out with. ‘I’m really thankful because a lot of my friends’ parents are hardly ever home. My mom is around for everything, and she’s my best friend.’
Bazinet and her family are very open about her mental illness. All Robin’s friends know about it, as do their neighbours and friends. Robin says it’s not embarrassing at all, and she did research on her own to better understand what her mother was going through. Bazinet suggests that families be open and not ashamed of the parent who has the mental illness. ‘It’s amazing how many other people you find when you’re open about it, people who appreciate your openness. They often tell me that it’s nice to know that somebody else is going through it too. I’ve always been a very caring person who likes to help others. I’ve missed out on so much of that. I hope sharing my story can help somebody.’
While mental health researchers and clinicians have developed a better understanding of mental illness as a family issue, our adult mental health, children’s welfare and legal systems have not changed in stride to meet family needs. The separate and sometimes adversarial nature of these systems is a far cry from the model of a whole village working together for the well-being of children – and their parents. It will be difficult to integrate, but not impossible, as the British Columbia experience has shown. A way needs to be found to educate, encourage and support informal relationships of family, friends and neighbours, in order to minimize the need for formal services. Whether a parent has social supports in the community should not be based on luck.
Ontario needs to overcome the challenges of building ‘villages’ so that every child, especially those whose parents have a mental illness, can receive the uninterrupted nurturing of a caring community.
Donna Hardaker is a community mental health analyst with CMHA Ontario.
In her work with adults with severe and persistent mental illness, Eliana Suarez found that generally mothers never gave up trying to keep connected to their children and expressed a keen desire to be competent parents. Sadly, she rarely found that fathers with mental illness stayed in contact with their children. ‘Fathers seem to accept a concept of themselves as being unable to work, unable to support themselves and unable to be a father.’
David Carmichael, who does not fit this common male pattern, found that he had to fight to be recognized as a father by social welfare systems. When Carmichael was first diagnosed with severe depression, he didn’t believe he was ill enough to apply and be accepted for long-term disability benefits from his employer. Instead he ended up on welfare, and eventually on the Ontario Disability Support Program (ODSP).
Carmichael has joint custody of his two daughters and has had his battles with ODSP officials to be recognized as a participating parent in their lives. Initially, on welfare he received benefits for a single male, amounting to $361 per month. David appealed and eventually received additional benefits to support his daughters. On ODSP, he applied for and received benefits to help with his daughters, until another hearing determined that David was overpaid, even though legally he has to live in a two-bedroom apartment to meet the requirements of the family court ruling. As a result of the unfavourable ODSP hearing, the program demanded the return of thousands of dollars in benefits, which David is paying back at $50 a month. The family court system and the income support system are clearly at odds in David’s case. David laughs grimly: ‘The ODSP arbitrator commended me on being such a devoted parent, then ruled against me.’
PARENTING RESOURCE GROUPS
David Clodman runs a group at the Centre for Addiction and Mental Health called Getting Ready for Kids that educates and supports people with mental illness who are planning for or expecting a child. He says he teaches members to interact with the child welfare system ahead of time, to possibly prevent some of the anger, frustration and helplessness that clients often feel when they interact with Ontario’s confusing legal and social support system. He found that it was difficult to get clients who were already parents to attend a parenting group, as referrals were made based on ‘two strikes against them: they had the stigma of having a mental illness and they were identified as having difficulties with parenting. One of our objectives is to try and build up some positive experience with members that it’s safe and okay to interact with the mental health system.’
For more information about Getting Ready for Kids, contact David Clodman at 416-535-8501 ext. 7559.
The Child Development Institute runs a group called Mothering after Trauma, for mothers who have experienced childhood trauma or domestic violence as adults. Michael Shultz says that this group helps meet the needs of many parents they see at the Catholic Children’s Aid Society who have experienced major trauma in their lives through abuse or because they are products of the child welfare system themselves, and bear scars from this experience. A history of trauma is common among people with mental health and addiction issues.
For more information about Mothering after Trauma, contact Michael Shultz at 416-395-1600.
» Return to Network, Winter 2007 – Contents
The Canadian Journal of Community Mental Health has released a special supplement issue focused on the Systems Enhancement Evaluation Initiative (SEEI). SEEI evaluated the impact of a $167 million investment made by Ontario’s Ministry of Health and Long-Term Care towards community mental health services in the province. Mental Health Notescontinues to explore the articles from the special issue, today looking at studies involving police and crisis services.
Participants are being sought for a formative evaluation of the Mental Health Commission of Canada (MHCC). The evaluation, which will include focus groups and key informant interviews in addition to the survey, will assess the MHCC’s early achievements in relation to its five key strategies, effectiveness and impact. The process is required by the MHCC’s funding agreement with Health Canada.
As part of their broader consultations on human rights and mental health, the Ontario Human Rights Commission (OHRC), in partnership with Rainbow Health Ontario, is hosting two consultations for lesbian/gay/bisexual/transgender/queer (LGBTQ) communities. The discussion will focus on the rights of LGBTQ people with mental health disabilities and addictions to be free from discrimination in employment, housing and services. The information gathered from these consultations will inform the policy work of the OHRC.
The Ministry of Community and Social Services (MCSS) is currently accepting public feedback on the proposed Integrated Accessibility Regulation (IAR) and proposed changes to the Customer Service Regulation. The public feedback process is required under the Accessibility for Ontarians with Disabilities Act, 2005 (AODA).
A paper submitted by the Canadian Mental Health Association, Ontario to the Minister of Health and Long-Term Care regarding the findings and recommendations contained in the reports of the Minister of Health and Long-Term Care’s Advisory Group (MAG) and the Select Committee of the Legislature on Mental Health and Addictions. (February, 2011)
The Mood Disorders Association of Ontario (MDAO) wants input to inform the creation of a new website called Mental Health M.A.P. (short for My Action Plan). The website will support people with depression, anxiety or bipolar disorder in their recovery. Individuals can participate in an online survey, with all comments being held in strict confidence. To show their appreciation, MDAO will randomly draw five e-mail addresses to win an autographed copy of the book Dancing in the Rain: 25 Stories of Hope, Healing and Recovery. To be eligible for the draw, complete the survey by February 11, 2011. To participate in the survey, visit www.themindsuite.com/online. You will be asked for a survey code (enter “MDAO”) and password (enter your e-mail address or “MDAO”; if you use your e-mail address, you will be able to return to complete the survey at a later time).
The Accessibility Directorate of Ontario has launched a series of online videos to share Ontario’s accessibility success stories. The videos, available through a free YouTube channel, all feature original content about accessibility from across the province and in a range of settings. Viewers are encouraged to participate by leaving comments and linking to their own success videos. It is also possible to embed the website’s content on other websites. The channel will also feature monthly themes and accessibility news. To view the Accessibility Directorate of Ontario YouTube channel, visit www.youtube.com/accessontario.
John Howard Society of Ontario has released a new fact sheet, Fetal Alcohol Spectrum Disorder and the Criminal Justice System: A Poor Fit. The fact sheet provides an overview of fetal alcohol spectrum disorder (FASD), and shares statistics and key issues relating to individuals with FASD who come into contact with the justice system. Tips for assisting individuals with FASD are also highlighted. To access the fact sheet, visit www.johnhoward.on.ca.
The Center for Psychiatric Rehabilitation (Boston University) is now offering a Canadian version of the Certificate Program in Psychiatric Vocational Rehabilitation (PVR-Canada). The goal of PVR is to support individuals to choose, get and keep the employment and educational roles and settings of their choice. The PVR-Canada program is designed to enhance the skills and knowledge of employment and vocational practitioners in their work with people with psychiatric disabilities. The first PVR-Canada class will be delivered between May 2011 and April 2012, consisting of three training institutes (one week each) taking place in Toronto, with the rest of the program completed in the student’s home agency. (Organizers are currently exploring connecting to the training institutes with videoconferencing for students unable to travel to Toronto.) Application deadline for the 2011 class is March 15, 2011. For more information about the program, and how to apply, visit www.bu.edu.
The National Network for Mental Health (NNMH), a national, non-diagnostic consumer/survivor-driven mental health organization, has released its 2011 strategic plan. The document details the feedback received by NNMH from a pre-planning survey. The survey identified the need to strengthen the original mandate of the NNMH and forge a new role in the context of larger mental health strategies that are weakening the voice of consumers in directing mental health services. The overall strategic direction outlined in the plan is to: build a sustainable, responsive and accountable, member-driven organization; deliver a strong, unified and credible national consumer voice; and strengthen NNMH’s influence by working with key organizations. See “NNHM &mdash Strategic Planning Process: Final Report Draft,” October 30, 2010, available at www.nnmh.ca.