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Visions Journal

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Empowered Transitions

If, in fact, your ill relative refuses to sign consent forms, family caregivers still DO have the right to important information about their loved ones, even without the person's consent. Any information caregivers need to provide follow-up care can be disclosed.under the Freedom of Information and Protection of Privacy Act. See (Guide to the Mental Health Act, Appendix 13)

Submitted by jduval on Thu, 10/16/2014 - 19:07 Permalink

When your child becomes an adult

Victoria Keddis

Reprinted from "System Navigation" issue of Visions Journal, 2014, 10 (1), pp. 34-36

“Transition” seems to be a bit of a buzz word lately. Transitions occur many times throughout our lives—going to a new college, starting a new career, making new friends or discovering life as a young adult are all very exciting stages of life. But they can also seem very overwhelming—particularly if you’re a young adult struggling with mental health issues, or their parent/caregiver. With planning and knowledge, however, transitions can be much smoother.

The ‘buzz’ started for me two years ago in my role as Parent in Residence (PiR) with The FORCE Society for Kids’ Mental Health. The FORCE is an organization that supports families with children or youth experiencing mental health challenges. I sat across from a very scared mom who was worried about getting her son all the mental health services possible before he turned 19. This mother’s fear was based on reality—when her eldest son, who also struggled with mental health issues, aged out of youth services, there were no mental health services in place to meet his needs.

Unfortunately, this was not a one-time encounter. Many families were expressing the same fears. And not only were parents fearful for their young adult’s future, but they were feeling hopeless. It’s challenging enough to convince our young people to agree to get help—often, they’re not able to take the steps or make choices that lead to healing.

The fact is, there are only very limited resources available for our youth once they become adults at age 19. As children and youth, their mental health care is provided through Child and Youth Mental Health (CYMH) in the Ministry for Children and Family Development (MCFD). But when they turn 19, they come under the Ministry of Health’s mental health and substance use programs for adults.

The intention of CYMH is to provide youth and their families with a prior six months of transition assistance. However, this didn’t happen for the families I was meeting, and there are a few reasons for this. Most often it’s because the case workers are under incredible pressure with their overwhelming caseloads. And sometimes there just aren’t any services to move on to.

Much of adult mental health services are for serious and persistent chronic illness. There seems to be a gap in adult services between providing knowledge and providing support for extreme needs, which leaves families as the primary care and support for their adult children.

Transitioning to transition

If accessing mental health services has been a part of your life, either as a young person or a family member or caregiver, it is an adjustment to discover that what you came to expect in youth services is no longer available. Preparing for the transition from youth to adult services will take time— and curiosity.

There is, currently, recognition happening around how important both transition to services and family involvement are. The Children and Youth Mental Health and Substance Use Collaborative Learning Session held in March 2014, an initiative in the Interior Health region of BC, is an indication of this recognition. The collaborative aims to improve the coordination and service integration for children and youth with mental health and substance use challenges.

This project invited health care professionals, service providers, community groups, educators, and youth and their families to be involved. I was invited to the March 2014 Learning Session because of a document I was working on to inform families, youth and professionals about what each wants the others to know. I’d been curious about what services existed around transitions, so began to do research, on the Internet and speaking to staff at various community service agencies. I found some great resources directed to vocational training, supported living and the medical system, but none for the mental health system.

I also connected with families and youth who were already accessing the system, and with professionals who were providing the service at both youth and adult levels. My co-workers at The FORCE were an incredible resource. Not only do they have their own personal experiences, but they are also familiar with the experiences of many other families.

At the Learning Session, I presented and distributed my document. The parents in attendance expressed how grateful they were that everyone was hearing how important a collaborative process is in caring for their children. This theme was shared in discussions and on panels led by youth with lived experience. The youth voices, as well as their parents’ voices, were valued. The organizers and other presenters and participants consistently referred to us as the “experts in the room.”

This is what I learned...

What youth want their families and professionals to know...
  • Youth don’t want to be talked about as though they aren’t in the room. Include them in treatment discussions and plans.

  • They want to be acknowledged and have professionals take the time to get to know them as a person, not just as a case. Find out what excites them. What do they do to pass time? Build a relationship with them— be curious.

  • Youth want to be informed about their health and wellness. Help them understand how they can help themselves—don’t do it for them. How does it affect their body? Their emotions? What limits does it put on them?

  • Know that if they could do better, they would.

  • Youth are not a ‘disorder.’ They are your child. Have a relationship with them—they need you.

  • Don’t protect youth from the truth. Be honest with them.

What professionals want families and youth to know...
  • Services are not always ideal. There are inconsistencies, such as staff changes or time off, or variations in the length of time service is provided. A private community-based counsellor or service can provide more consistent therapy and a trusting relationship that is longer term; services are based on your need, not on a mandated timeline of service.

  • Communicate with your youth service providers long before their service ends. Begin planning proactively with present supports. Ask them to connect you with appropriate services in the adult system and ensure files are transferred.

  • Know that there are gaps in service provision.

  • Research your community services and find out what does exist. Be prepared and informed so you don’t have to do this when in a crisis. Access services before it gets to that point.

  • With youth and young adults, family engagement by professionals tends to be limited; parents and siblings are not often included. Youth and parents should discuss how they each want the other to be involved in care, treatment planning and support. They should put this into writing so the service provider will understand the agreed-upon level of sharing and involvement.

Families don’t have to be alone in facing this challenge, and they don’t have to know it all. When you come from a place of strength and curiosity, you will be empowered to discover what is out there to meet your needs as a family. Reach out to others for ideas and support. And remember, you are the expert on what works for you and your child.

Through my research and sharing, I found this core truth: every professional, parent and youth want the same thing—for there to be services in place to meet needs.

About the author

Victoria is a Parent in Residence (PiR) with The FORCE Society for Kids’ Mental Health, and she has a background in social work. Victoria’s two children have been her greatest teachers, providing her opportunities to learn new ways to face life’s challenges with grace and gratitude

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