Getting ready for for adult health care care Learn how things work. Learn how things work. client & family reviewed
Getting ready Getting ready a time of transition a time of transition Becoming an adult brings Becoming many changes. adult brings One change many is changes. where you One receive change health is where care. you receive health care. Moving to a new adult health-care Moving team can to bring a new mixed adult emotions health-care team including can bring excitement, mixed fear, emotions relief including or sadness. excitement, You have probably fear, relief gotten or to know sadness. many You of have the people probably who gotten to work know at Holland many of Bloorview the people Kids who work Rehabilitation at Holland Hospital. Bloorview When Kids Rehabilitation making the switch Hospital. to new When service making providers, the it switch helps if to you new know service more providers, about how it things helps work. if you know more about how things work. Children s health organizations Children s provide family-centred health organizations care. provide We involve family-centred your in care. We decision involve making. your family in decision making. Adult care is patient-centred. Adult It focuses care on is patient-centred. your needs and It wishes. focuses You on are your the needs one making and wishes. the decisions. You are the one making the decisions. You can expect to be alone You when can you expect see your to be adult alone when health-care you see providers your adult health-care during your providers visit. If you during want your your parents visit. If or you want someone your else parents to be or with you, someone you can request else to that. be with you, you can request that. 2
Tips for adult health care Give information Give information Know about your medical Know history about and current your medical history medications. and current Tell your team medications. what works best Tell for your you. team what works best for you. Listen to Listen suggestions to suggestions Your new team knows a lot Your about new adult team health knows care. a lot about adult health care. Ask questions Ask questions Write questions down before your Write visit so questions you don t down forget. before If youyour visit don t so understand you don t forget. something, If youask don t again. understand There are no something, silly questions. ask again. Get all There the information are no silly you questions. need. Get all the information you need. Decide on a plan Decide on plan Choose a plan that is good for Choose your health a plan and that works is good best for with your health lifestyle and for works school, best work with your and family. lifestyle for school, work and family. Do it! Do it! Get involved with your care. Get Stay involved involved. with Always your take care. your Stay medications involved. and Always attend take your your medications medical appointments. and attend your medical appointments. GLADD is from Talking with Your Doctor GLADD and Other is from Health-care Talking Professionals with Your Doctor and used with and permission Other Health-care from the author, Professionals John Reiss, and PhD used with permission (Health Care from Transition the author, Initiative John Reiss, at the PhD University (Health of Florida): Care http://hctransitions.ichp.ufl.edu/gladd Transition Initiative at the University of Florida): http://hctransitions.ichp.ufl.edu/gladd 2 Getting ready for adult health care 3
It s important to continue your care You probably already know from your own experience that catching problems early makes a big difference. People with physical disabilities stay healthier if they have lifelong follow up. It is important to keep in contact with your primary care provider regularly (at least once a year even when you are healthy). Your primary care provider might be your family doctor or a nurse at a community clinic. After you turn 18 you will no longer be able to use the emergency services at children s hospitals. Talk to your health-care team about the best place for you to go in an emergency. You may have questions about becoming an adult Some common concerns are: Relationships and sex Family planning: contraception, planning a healthy pregnancy/ fathering a child, parenting options Health insurance (to pay for medications and personal care supplies) Post-secondary education Managing finances (working, income supports, funding) Moving out on your own Managing health care Where to get community supports and services These questions and concerns are normal. Discuss them with your health-care team. TIP: Carry your health card with you at all times. It s also a good idea to keep your MyHealth Passport with you. You can make a MyHealth Passport by visiting: www.sickkids.ca/myhealthpassport 4
Preparing for adult clinic visits Remember this is YOUR health-care appointment. Your questions and concerns are important. Plan ahead and take responsibility for what you need to take to the appointment. Plan ahead Bring a support person or family member to the clinic if this will make you feel more comfortable. Make sure you have everything you need use the Appointment Checklist (page 6). Think about how you will get to your first appointment. Find out how to get to the building and into the clinic. Ask about parking if you will be driving. Give yourself enough travel time to get to your appointment and to check in when you arrive. Be in charge of your medications Keep a list with names and dosage amounts of your medications including vitamins, supplements and over-the-counter medications. If you are put on a new medication write it in your MyHealth Passport. Before your appointment check your prescriptions for the number of repeats. If you only have a few repeats be sure to ask your doctor for a refill prescription. TIP: If you use special transit services such as Wheeltrans or ParaTransit, allow extra travel time in case of traffic or appointment delays. Before booking your rides, call ahead to the clinic to find out how much time you will need for your appointment. Let the staff know your pick-up time when you check in for your appointment. Getting ready for adult health care 5
checklist Appointment checklist Appointment checklist Your health card Your Hospital health or clinic card card (if you have them) Hospital Name and or address clinic card of primary (if you have care them) providers and specialists Name A list of and questions address of or primary issues you care want providers to talk and about specialists A Your list current of questions medication or issues list with you want your pharmacy s to talk about Your phone current number medication list with your pharmacy s Your phone Any medical health number card or personal supplies you may need Any Knowledge medical about: or personal supplies you may need Knowledge Your condition about: Hospital Your condition past or clinic procedures card (if and you surgeries have them) Your past medications procedures and surgeries Your Any other medications medical problems you have Don t Any be other afraid medical to write problems information you have down Name Don t to help be and you afraid address remember to write of primary information care providers down and specialists to Your help MyHealth you remember Passport (you can create this by visiting Your www.sickkids.ca/myhealthpassport) MyHealth Passport (you can create this by visiting www.sickkids.ca/myhealthpassport) A book a magazine to help the time while you are waiting. book list of or questions a magazine or issues help you pass want the time talk while about A snack or some cash to buy something to eat or drink. you are waiting. A Your snack phone or some cash to buy something to eat or drink. Your phone Your current medication list with your pharmacy s TIP: will be asked to make decisions and give consent to treatments. Bring a support person or family member with you if this will make you feel more comfortable. TIP: You will be asked to make decisions and give consent to treatments. Bring a support phone person number or family member with you if this will make you feel more comfortable. 6
Taking charge of your health-care appointments If you realize an appointment time is not convenient for you, it is your responsibility to book a new appointment time. Make sure you keep track of your appointments (phone, agenda, calendar, etc). You most likely won t get reminder phone calls. (You could ask about this if reminders help you.) If you miss an appointment it will be your responsibility to rebook. Make a list of all the team members at the clinics you visit. Know their names, their roles, and how to contact them. Ask who is in charge of scheduling appointments. Talk to this person if there is more than one health-care provider that you would like to see on the same day. Follow-up after two weeks if you have not heard about things you discussed during your visit: test results, referrals, or new tests bookings. We wish you the very best in this important step towards adulthood! From your health-care team at Holland Bloorview Kids Rehabilitation Hospital TIP: If taking charge of appointments sounds hard to you, talk with your health-care team. 6 Getting ready for adult health care 7
Resources Community Care Access Centre (CCAC) Resources téäëáíéw=www.ccac-ont.ca müçåéw=pnmj``^`=epnmjoooof Community `çååéåíë=ééçéäé=ïáíü=üé~äíü=å~êé=~åç= Care Access Centre (CCAC) téäëáíéw=www.ccac-ont.ca ëìééçêí=ëéêîáåéë müçåéw=pnmj``^`=epnmjoooof Ontario Disability Support Program `çååéåíë=ééçéäé=ïáíü=üé~äíü=å~êé=~åç= téäëáíéw=www.mcss.gov.on.ca/en/mcss/ ëìééçêí=ëéêîáåéë programs/social/odsp Ontario ÚfåÅçãÉ=ëìééçêíÛ=~åÇ=ÚÉãéäçóãÉåí=ëìééçêíëÛ Disability Support Program téäëáíéw=www.mcss.gov.on.ca/en/mcss/ éêçöê~ãë=ñçê=éäáöáääé=ééçéäé=ïáíü=çáë~äáäáíáéë= programs/social/odsp March of of Dimes Canada ÚfåÅçãÉ=ëìééçêíÛ=~åÇ=ÚÉãéäçóãÉåí=ëìééçêíëÛ téäëáíéw=www.marchofdimes.ca éêçöê~ãë=ñçê=éäáöáääé=ééçéäé=ïáíü=çáë~äáäáíáéë= péêîáåéëi=êéëçìêåéë=~åç=ñìåçáåö=ñçê=ééçéäé= March ïáíü=çáë~äáäáíáéë of Dimes Canada téäëáíéw=www.marchofdimes.ca National Education Association péêîáåéëi=êéëçìêåéë=~åç=ñìåçáåö=ñçê=ééçéäé= of of Disabled Students Ekb^apF ïáíü=çáë~äáäáíáéë téäëáíéw=http://www.neads.ca/en National péêîáåéë=~åç=êéëçìêåéë=ñçê=éçëíjëéåçåç~êó Education Association of ÉÇìÅ~íáçåI=ëÅÜçä~êëÜáéë=~åÇ=ÉãéäçóãÉåí Disabled Students Ekb^apF téäëáíéw=http://www.neads.ca/en Developmental Services Ontario (DSO) péêîáåéë=~åç=êéëçìêåéë=ñçê=éçëíjëéåçåç~êó téäëáíéw=www.dsontario.ca ÉÇìÅ~íáçåI=ëÅÜçä~êëÜáéë=~åÇ=ÉãéäçóãÉåí müçåéw=urrjptojpuru= Developmental `çååéåíë=~çìäíë=ïáíü=çéîéäçéãéåí~ä=çáë~äáäáíáéë= Services Ontario (DSO) téäëáíéw=www.dsontario.ca íç=ëéêîáåéë=~åç=ëìééçêíë=áå=íüéáê=åçããìåáíáéë müçåéw=urrjptojpuru= Centre for for Independent Living E`fiqF `çååéåíë=~çìäíë=ïáíü=çéîéäçéãéåí~ä=çáë~äáäáíáéë= téäëáíéw=www.cilt.ca íç=ëéêîáåéë=~åç=ëìééçêíë=áå=íüéáê=åçããìåáíáéë müçåéw==qnsjrvvjoqru Centre oéëçìêåéë=ñçê=ééçéäé=ïáíü=çáë~äáäáíáéë=áååäìçáåö for Independent Living E`fiqF téäëáíéw=www.cilt.ca áåñçêã~íáçå=~äçìí=~ííéåç~åí=ëéêîáåéë=áå=íüé=dq^ müçåéw==qnsjrvvjoqru ~åç=låí~êáçjïáçé= oéëçìêåéë=ñçê=ééçéäé=ïáíü=çáë~äáäáíáéë=áååäìçáåö The Anne Johnston Health Station áåñçêã~íáçå=~äçìí=~ííéåç~åí=ëéêîáåéë=áå=íüé=dq^ téäëáíéw=www.ajhs.ca ~åç=låí~êáçjïáçé= müçåéw=qnsjqusjusss The `çããìåáíójä~ëéç=éêáã~êó=üé~äíü=å~êé=ëéêîáåéë Anne Johnston Health Station téäëáíéw=www.ajhs.ca ~åç=üé~äíü=éêçãçíáçå=éêçöê~ãë=ñçê=ééçéäé=ïáíü müçåéw=qnsjqusjusss éüóëáå~ä=çáë~äáäáíáéë `çããìåáíójä~ëéç=éêáã~êó=üé~äíü=å~êé=ëéêîáåéë ~åç=üé~äíü=éêçãçíáçå=éêçöê~ãë=ñçê=ééçéäé=ïáíü éüóëáå~ä=çáë~äáäáíáéë Acknowledgements Acknowledgements Healthcare Connect téäëáíéw=www.health.gov.on.ca/en/ms/ healthcareconnect/public Healthcare müçåéw=ummjqqrjnuoo Connect téäëáíéw=www.health.gov.on.ca/en/ms/ eéäéë=låí~êá~åë=ñáåç=~=ñ~ãáäó=üé~äíü=å~êé=éêçîáçéê healthcareconnect/public müçåéw=ummjqqrjnuoo 211 Ontario eéäéë=låí~êá~åë=ñáåç=~=ñ~ãáäó=üé~äíü=å~êé=éêçîáçéê téäëáíéw=www.211ontario.ca müçåéw=onn 211 fåñçêã~íáçå=~åç=êéñéêê~ä=íç=åçããìåáíó=~åç= Ontario téäëáíéw=www.211ontario.ca ëçåá~ä=ëéêîáåéë= müçåéw=onn fåñçêã~íáçå=~åç=êéñéêê~ä=íç=åçããìåáíó=~åç= Easy for for You to to Say: Q&As for for Teens Living with ëçåá~ä=ëéêîáåéë= Chronic Illness or or Disability EOMMRF=^ìíÜçêW jáêá~ã=h~ìñã~åi=héó=mçêíéê=_ççâëk=^î~áä~ääé=~í Easy éìääáå=äáäê~êáéë=çê=íüêçìöü=ã~àçê=äççâëéääéêë for You to Say: Q&As for Teens Living with Chronic Illness or Disability EOMMRF=^ìíÜçêW jáêá~ã=h~ìñã~åi=héó=mçêíéê=_ççâëk=^î~áä~ääé=~í Resources éìääáå=äáäê~êáéë=çê=íüêçìöü=ã~àçê=äççâëéääéêë for people with disabilities Resources Spinal Cord Injury Ontario for téäëáíéw=www.sciontario.org people with disabilities Spinal Cord Injury Ontario téäëáíéw=www.sciontario.org müçåéw=uttjqoojnnno Spinal Cord Injury Ontario Persons téäëáíéw=www.sciontario.org with Disabilities Online müçåéw=uttjqoojnnno téäëáíéw=ïïïkéïçjçåäáåéköåkå~ Resources about transition to adult health care Person with Disabilities Online téäëáíéw=ïïïkéïçjçåäáåéköåkå~ Resources Good 2 Go Transition about Program, transition to adult health care Good 2 Go Transition Program, The Hospital for for Sick Children téäëáíéw=www.sickkids.ca/good2go Good 2 Go Transition Program, The Health Hospital Care for Transition Sick Children Initiative téäëáíéw=www.sickkids.ca/good2go téäëáíéw=http://hctransitions.ichp.ufl.edu/gladd fåñçêã~íáçå=çå=üçï=íç=í~äâ=ïáíü=üé~äíüjå~êé Health éêçñéëëáçå~äë Care Transition Initiative téäëáíéw=http://hctransitions.ichp.ufl.edu/gladd fåñçêã~íáçå=çå=üçï=íç=í~äâ=ïáíü=üé~äíüjå~êé Got Transition.org éêçñéëëáçå~äë téäëáíéw=www.gottransition.org Got Transition.org téäëáíéw=www.gottransition.org qüáë=appledéííáåö=oé~çó=ñçê=^çìäí=`~êéò=äççâäéí=áë=êéîáëéç=~åç=êééêççìåéç=ïáíü=ééêãáëëáçå=ñêçã=íüé=dççç= O=dç=qê~åëáíáçå=mêçÖê~ãI=aáîáëáçå=çÑ=^ÇçäÉëÅÉåí=jÉÇáÅáåÉ=~í=qÜÉ=eçëéáí~ä=Ñçê=páÅâ=`ÜáäÇêÉåK= aéîéäçééç=äów=qüé=^ååé=gçüåëíçå=eé~äíü=pí~íáçåx=íüé=dççç=o=dç=qê~åëáíáçå=mêçöê~ãi=aáîáëáçå=çñ qüáë=appledéííáåö=oé~çó=ñçê=^çìäí=`~êéò=äççâäéí=áë=êéîáëéç=~åç=êééêççìåéç=ïáíü=ééêãáëëáçå=ñêçã=íüé=dççç= This ^ÇçäÉëÅÉåí=jÉÇáÅáåÉ=~í=qÜÉ=eçëéáí~ä=Ñçê=páÅâ=`ÜáäÇêÉåX=eçää~åÇ=_äççêîáÉï=háÇë=oÉÜ~Äáäáí~íáçå=eçëéáí~äX Getting ready for adult health care booklet is revised and reproduced with permission from the O=dç=qê~åëáíáçå=mêçÖê~ãI=aáîáëáçå=çÑ=^ÇçäÉëÅÉåí=jÉÇáÅáåÉ=~í=qÜÉ=eçëéáí~ä=Ñçê=páÅâ=`ÜáäÇêÉåK= Good 2 Go Transition Program, Division of Adolescent Medicine at The Hospital for Sick Children. péáå~=_áñáç~=c=eóçêçåééü~äìë=^ëëçåá~íáçå=çñ=låí~êáç aéîéäçééç=äów=qüé=^ååé=gçüåëíçå=eé~äíü=pí~íáçåx=íüé=dççç=o=dç=qê~åëáíáçå=mêçöê~ãi=aáîáëáçå=çñ ^ÇçäÉëÅÉåí=jÉÇáÅáåÉ=~í=qÜÉ=eçëéáí~ä=Ñçê=páÅâ=`ÜáäÇêÉåX=eçää~åÇ=_äççêîáÉï=háÇë=oÉÜ~Äáäáí~íáçå=eçëéáí~äX péáå~=_áñáç~=c=eóçêçåééü~äìë=^ëëçåá~íáçå=çñ=låí~êáç