My People

Choosing people to be in your crew or could be seen as care partners if you need help. These would be people who make you feel safe and respected, can communicate honestly, support you unconditionally, allow you to set healthy boundaries, show you kindness and empathy, and allow you to be yourself without fear or pressure. Here are some ideas for choosing your crew and care partners.

• Show respect by valuing your opinions, choices, identities, and personal space.
• Communicate openly by talking honestly, listening to you, and working through misunderstandings without fear.
• Support you by showing up, encouraging you, and sharing in your successes.
• Help you set healthy boundaries for physical and emotional support.
• Treat each other with care, patience, and understanding.
• Are like-minded, meaning they have similar values, beliefs, and views about the world as you.
• Support your independence by encouraging you to do all that you can.
• Make you feel safe and comfortable to express yourself and not feel pressured or harmed.
• Enjoy fun by laughing together and feeling good when you spend time with each other.

• Go ahead – make a list, you may be amazed at the number of people you have in your village.
• Put a star beside people that might be in your crew as well. The people that you call on regularly and can help you with personal stuff.
• Make a Circle of Support. Take a piece of paper and draw a small circle in the middle with your name or picture in it. In the closest ring, write people who influence you the most. In the outer rings, list people who influence you a little or only sometimes.
• Add other symbols or headings to your list like the things you need support with—rides, advice, health stuff, schoolwork, emotional support—and then write down who helps you (or could help you) with each one.

• Think about who’s in your corner – this includes personal relationships, like family and friends, as well as professionals like teachers and health care professionals.
• Identify who you trust and who has the right skills to help, like a parent, trusted adult/ teacher, school counsellor, nurse, or doctor, and who will respect your privacy.
• Make a list of what you need help with. Talk to family, friends, neighbours, etc. about how they can help with things like rides to appointments, organizing meds, helping out with errands, professional services, or even just someone to vent to.
• Identify a trusted adult at your school (where you spend most of you day) – maybe 2 people – who you can share your health journey with and call on them when needed.
• Let these people know what independence means to you – you are allowed to ask for help and still have independence and control over your life.
• Be clear about your personal boundaries, when and how you want help, and your need for privacy and confidentiality.
• Explore ways care partners can offer comfort and assistance from ideas in the resource kit.
• Check out the Mywell Health MyCare Partners fillable PDF tool to list your care partners list and what they can offer to help.
• Create a contact list on your phone to keep track of who is helping you with what and when they are available.

• Think about how you feel about having family members and others involved in your health and lifestyle choices – what feels helpful vs what feels like too much?
• Learn about personal boundaries and privacy and confidentiality in the resource kit.
• Make sure the people helping you understand your personal values, beliefs, and cultural needs.
• Be clear about your wishes and boundaries with caregivers. That might include how much they talk, where they sit or spend time when not helping you, and/or the amount of noise they make.
• Use emails, texts, or phone apps to update people when your health changes or when you need help.
• Be clear about what you can physically do for yourself and how you need help.
• Make sure you put your emergency plan in a place (like beside or on your fridge) where all your crew & caregivers know where to find it!
• Check in with your support people too! Ask your family and care partners about their own limits and boundaries – like time, space, health, and financial issues.
• Not sure how to talk about all of this? Chat with others who have caregivers or a professional such as a clinical counsellor for advice and strategies.

1. Would you be willing to learn about my health condition, treatments, concerns & problems?
2. Do you have the time and ability to take me to appointments if I should need your help?
3. Can you understand me easily?
4. Are you comfortable talking to physicians, nurses and other health
5. care professionals?
6. Do you have any past experience dealing with the health care system?
7. Will you keep things confidential / private?
8. Can you write down information in a way that is easy to read and understand?
9. Will you help me even when my choices are different from what you think is in my best interests?
10. Do you see me as an individual capable of making my own decisions?

• A TDSM is an adult who can make health care decisions for you temporarily, if you are unconscious or unable to speak for yourself.
• You don’t legally name a TDSM –  if you cannot speak for yourself, your physician must choose someone from your TSDM list, usually starting with your parent, then your partner/spouse, your sibling(s), or other adults you have named.
• Learn more about how TSDMs work and their responsibilities in the resource kit.

• Know that your SDM must be an adult who you trust and to make health care treatment decisions for you if you are unconscious or unable to speak for yourself, that match your wishes.
• An SDM is someone you officially list to make health decisions for you if you have a long-term or serious condition that keeps you from being with yourself (basically the same criteria as for a TSDM except without the temporary part).
• Learn more about the difference between a TSDM and an SDM in the resource kit.
• Know that if you’re living with chronic, debilitating, or life-limiting health condition, you should definitely think about naming a formal substitute decision-maker.
• Be aware that to make it official, you need to create a representation agreement with help from either a lawyer or a notary.
• Know that your SDM can make decisions on your behalf about health care treatments, starting or stopping care, or housing placement.
• Save a print and digital copy of your representation agreement in your Mywell Health files and on your phone, so it’s easy to find when needed.

• Know that you have the right and responsibility to be involved in decisions about your own care.
• Work at asking questions, speaking up about what matters to you, and working WITH your health care team.
• Practice being a partner in your own care with the professionals who are helping you.
• Learn more about partners in care in the resource kit.

• You have the right to access to insured health care services, without discrimination.
• You can say yes or no to treatments at any time.
• You get to make informed decisions about your care – with the support of others as needed.
• Your personal health info is private and should never be shared without your permission.

• Let people know how you want to be addressed, including your name and pronouns.
• Share complete, honest, and accurate details about your medical history, symptoms, and lifestyle.
• Stick to your treatment plan and attend follow up appointments (and call to let them know if you can’t!).
• Ask questions if something isn’t clear – it’s your right to understanding your treatment plans.
• Treat health care staff and providers with respect courtesy, respect, and kindness, just like you’d expect in return.
• Keep appointments by arriving on time and simply call to let them know ahead of time if you need to cancel or reschedule.

• Know that adult systems (in health, education, home care, and finances) work differently.
• Be ready for physicians, health care professionals, educators, and others to ask you questions and expect your answers and choices.
• Know that as your reach 19 years of age, and you can understand what is asked of you, you are responsible to give your consent. Of course, you can ask for guidance from your parents/ guardians – but you sign or make the decision.
• Ask about who your adult care and service providers are going to be, their location, and how to contact them.
• Make sure referrals are sent and ask how to follow up if you don’t hear back.
• Keep a list of names and phone numbers for your new adult health and service providers in your Contacts app.
• Learn what health care and other services are covered and what may cost money.
• Ask if your medications are covered by Pharmacare when you turn 19.
• Ask about extended benefits you are entitled to past 19 years of age.
• Learn about disability benefits, if needed.
• Check out other topics and activities in Mywell Health like My Education & Workplans, My Financial Plan, and My Place to Call Home to learn about how other services change as you reach adulthood and how to get yourself organized.

• Decide who supports you at home and for your personal care (parents, partner, trusted adult, care partners).
• Map out all the services that may change for you at 18/ 19 years of age.
• Check out the ‘Transition Timeline’ from BC Children’s Hospital – a goodpreparation tool to follow.
• Choose a health advocate if you want help with decisions or appointments.
• Know your rights to privacy and confidentiality as an adult.
• Understand your responsibilities for decision-making and providing consent.
• Ask your care partners to help you learn about all these system changes.
• Keep practicing and using your voice in making decisions. Use your skills to seek out information so that your choices are informed and right for you.