A vital role in system navigation
Reprinted from "System Navigation" issue of Visions Journal, 2014, 10 (1), p. 18-20
I'm a Parent in Residence (PiR) with The FORCE Society for Kids’ Mental Health (see sidebar). A PiR is a parent who has lived experience of having a child or youth with mental health challenges, and who provides other parents with support, mentorship and assistance finding resources. We work directly with parents/caregivers and service providers to create stronger relationships and collaboration between the two.
For this article, I wanted to find out about parent and caregiver experiences navigating the mental health services system. We also wanted to know about how helpful peer support from a person with lived experience of navigating the system can be for someone trying to get needed care for their child.
What is system navigation? Simply put, it's where and how you find the information and services you need to support your family.
The topic of navigating a complex system can be challenging, and everyone is different. What works for some families doesn’t always work for others—you must pick and choose what speaks to you.
The following information represents my own experience and the experiences of families I support as a PiR and of the families I interviewed for this article.
Frustrations in finding help
Unlike a physical disability, mental health challenges are often invisible and can appear to be a behaviour challenge. When should a family in crisis reach out for help? Where does a normal behavioural challenge end and a mental health challenge begin? How does a parent or family member determine the difference? One parent said:
One of the most frustrating aspects of system navigation (other than limited resources) was convincing our contact that there is an actual mental health challenge and it's not just a parenting issue
When I first began trying to find help for my son's mental health issues, I had no idea what services were available. And I had no idea where or how to begin searching for services. And now there are so many websites you can go to, but first you need to know what you're dealing with, so you can search for the appropriate services.
How do you find the services you need? Some things parents suggested would be helpful:
A centralized guide or directory of all mental health services and mental health practitioners in each area geographic location including specialist therapies
Having one identifiable person to help create a plan and work throughout the bureaucracy that we so often come up against
When families were asked what they found least helpful about navigating the system and finding the right help for their loved one, one family member said:
Some services that are needed and would be optimal are not available everywhere. For example, a mood disorders clinic in one community offers an agenda booklet with information on resources and on their "best practice": that is, a team of people assisting the client to function in society. But this best practice isn't provided in all BC communities.
Another challenge parents face—especially when you have a child/family member who hasn't been diagnosed or who has multiple diagnoses—is "gated services," or those that require a professional referral.
Some agencies have "gate keepers," who make sure that every avenue has been tried by the families before they will refer them to some other agencies that may meet their needs.
Yet another challenge families have faced is that, once they've received the services, there's a lack of follow-up. One parent noted:
There was one assessment, but then only minimal follow-up afterward, and no ongoing supports or queries to determine how things are going.
When your child becomes an adult, the information family members receive can be reduced due to privacy issues put in place to protect the individual.
We don't always know what is going on with regards to care/treatment plans, and have to continuously ask our loved ones questions.
Some specialists/health care providers are great at communicating with us and telling us what is going on. However, with others, my mom or I will attend meetings with my dad so the issues that need to be raised with the doctor are communicated and we fully understand the next steps.
What is helpful
Some of the things families found most helpful during their journey to access services for their family member was connecting with service providers who were knowledgeable, non-judgmental and who understood what they were going through.
They took the time to understand the complexities of my son's illness and to get to know us as a family.
Most of the programs I've learned about have been through outreach groups, including The FORCE and ACT BC—Autism Community Training. I consistently refer people to these organizations as sources of information, but they are only a starting point.
Peer-to-peer support, the Internet for information gathering and online support, and support groups such as BCSS (BC Schizophrenia Society) and The FORCE are all assets.
Peer support is crucial
Families were asked if they'd had an opportunity to talk with other parents or family members in a similar situation, and if so, to say how and why this helped them. Most people said talking with others in a similar situation can help with the isolation and frustration many parents face. But they also said that peer support was crucial in getting the support they needed for their family.
Almost all the help, personal support and information I have ever received has come directly through peer support groups and one-on-one discussions with others dealing with the same issues. Because they have lived these experiences, they seem to care more and understand that your child/family member deserves help and services as much as anyone else.
Unlike many professionals in the health community, peers never judge you personally or assume that your bad parenting has somehow caused or contributed to your child's mental health challenges.
When a family is in crisis, it's often overwhelming. They don't know where to begin and who to turn to. But when families have an opportunity to talk with other parents or family members with lived experience, they can receive information about options for resources and support to navigate the system. Parents expressed:
Talking with persons who fully understand the condition and can empathize is extremely helpful in dealing with the exasperation of the condition and learning to accept the condition.
I was accepted by other families walking a similar path as mine; there was no judgment, just understanding. They understood the chaos, trauma and uncertainty that surrounds a diagnosis of a serious mental illness. No situation is exactly the same, but hearing another person’s story helped me see solutions and approaches that might work for our situation.
With shared experience regarding the lack of services, inadequate existing services and the long wait-lists...you don't feel as alone. And you realize that the frustration felt at the lack of services is not due to a negative outlook, but to the reality of the situation.
The FORCE PiRs assist families to feel connected to, and capable of accessing, the services their family needs. One family said it like this:
My relationships with them have been so important, particularly during times of stress combined with a need to make medical decisions. They get it!
My family has experienced some of what I would call wrap-around care. The service provider asks what's working and what isn't working, while considering our whole family dynamics. At the same time, this service provider collaborates with us to support our son, by putting services in place that are specific to his needs. This kind of wrap-around service benefits not only the individual with the mental health challenge, but the entire family.
I believe the mental health system has progressed, but we still have a long road ahead of us. My hope is that one day we’ll see all families and caregivers, wherever they reside and whatever their financial barriers, collaborating with service providers to engage in “wrap-around care.”
the FORCE society for kids' mental health
The FORCE Society for Kids' Mental Health is a provincial organization that serves families who have children with mental health challenges. The FORCE supports and empowers families, providing opportunities to speak with other families who understand and may offer support or advice on what has worked for them. The FORCE also works collaboratively with professionals and systems toward better understanding and meeting the mental health needs of families.
About the author
Moira is a Parent in Residence with The FORCE Society for Kids' Mental Health in Coquitlam, Port Coquitlam and Port Moody, and is the mother of children ages 9 and 12. Her older son has struggled with mental health challenges since he was a young child