Your Transition Toolkit

By /

Arthritis color logo
Back to top ▴

Table of contents

    • Your Transition Toolkit

    For Parents and Caregivers

    As your child or teen prepares to transition to adulthood, you will want to be informed and involved as well. Your teen will probably need your help with reading and planning. The goal of this toolkit is to help your child build the skills needed to manage his or her health independently. Your guidance and encouragement is an essential part of this process. All good drivers need driver’s education, and you are the driving coaches!

    Tips for Preparing your Teen for the Trip to Independence

    Start early and be positive about the future:

    • Focus on your teen’s strengths and skills
    • Dream big….encourage being all he or she can be
    • Talk with your teen about what he or she wants in the present and the future
    • Encourage your teen to express his or her opinions
    • Encourage reading, writing, and working with numbers
    • Help your teen learn to problem solve
    • Let your teen take some risks and deal with the consequences
    • Build responsibility by having your teen do chores and volunteer work
    • Encourage your teen to have friends
    • Talk with your teen about friends and activities
    • Encourage your teen to practice talking with people of all ages
    • Remember that you are a role model for your teen
    • Invite others into the planning process

    Build independence at home. Teach your teen:

    • Personal care and hygiene
    • How to prepare meals
    • Household cleaning and maintenance
    • Care and washing of clothing
    • Shopping and money management
    • How to use basic tools and appliances

    Work with health care providers:

    • Encourage your teen to talk with health care professionals
    • Let your teen spend time alone with his or her health care providers
    • Encourage increasing self care, independence and responsibility for health matters
    • Help your teen understand his or her health condition
    • Help your teen keep health records
    • Help your teen plan for emergencies and disasters
    • Plan for a smooth transition to adult health care
    • Explore health insurance options during the transition years

    Work with the school:

    • Encourage your teen to do his or her best in the classroom
    • Encourage involvement in extra-curricular activities
    • Talk about your teen’s strengths, hopes and dreams with teachers and counselors
    • Explore options for education, work, living arrangements, transportation, housing
    • Encourage your teen to be involved in developing transition plans
    • Learn about the resources that are available for transition
    • Be your teen’s advocate for services and resources

    Help your teen become involved in the community:

    • Encourage hobbies and leisure activities
    • Find volunteer or work opportunities
    • Participate in community events
    • Build a sense of community spirit, pride, and involvement
    • Explore independent transportation options

    Learn about transition resources in your state and community:

    • Talk with teachers, counselors and health professionals
    • Talk with other families who have been through the transition process
    • Find resources using the internet

    Read through this toolkit with your teen and talk about hopes and dreams for the future. Use it to ask questions and get information about health care, school, work, transportation, money, and fun. Work through the transition activities together. Hopefully, you and your teen will have exciting adventures on the road to the future.

    Life is always an adventure, and we wish you the best!

    –The Arthritis Foundation Transition Team

    Your Transition Timeline

    Life Area For Parents For Youth: Age 12-15 For Youth: Age 16 years & up
    General

    • Encourage your child to express their needs and wants.

    • Support your child’s increasing need for independence.

    • Learn about the members of your child’s health-care team. Become part of the team.

    • Remember your child’s condition is not who they are; expect them to change and grow.

    • Be consistent so your child knows the consequences of their behavior and choices.

    • Ask questions, talk about your needs and how you feel about your condition with your parents and health-care providers.

    • Find people you can trust to help you learn to manage your condition.

    • Find role models you can relate to and look up to.

    • Practice budgeting and banking skills.

    • Think of yourself as a role model and a mentor to younger children.

    • Learn about the impact of your condition on sexual health and reproduction (for example effect of disease in pregnancy).

    Medical

    • Help your child to learn about their condition, such as the names of medications and treatments. Use reading materials and pictures to increase their knowledge.

    • Teach your child about symptoms related to their condition that need to be share with an adult immediately.

    • Make a list of questions and concerns with your child before their appointments.

    • Encourage your child to speak directly to team members for part of their appointment.

    • Understand how your child’s condition will affect the way they develop through puberty.

    • Create a Medical Summary together with your child.

    • Have your child select a Medic Alert identification to carry with them.

    • Keep a record of your child’s condition, treatment, and medications.

    • Increase your knowledge of your condition and understand reasons for tests, procedures, and medications.

    • Find people you can trust to help you learn to manage your condition.

    • Ask for private time with your health-care provider for part of your visit.

    • Prepare questions and concerns you want to discuss.

    • Talk with your health-care team about birth control, drugs, alcohol, and changes related to your condition as you grow.

    • Discuss your future care in the adult health system.

    • Talk with your health-care team about birth control, drugs, alcohol, and changes related to your condition as you grow.

    • Discuss your future care in the adult health system.

    • Create or update your own Medical Summary.

    • Be able to explain your condition and special health-care needs to others.

    • Make a plan for how your medication and treatments will be paid for in the future, as some insurance plans or payment programs end at age 18 or 21

    • Prepare questions and concerns you want to discuss.

    • Find an adult rheumatologist and adult primary care.

    • Connect with others who have already made the transition to seeing adult health-care providers.

    • Know your prognosis and future care plans.

    • Update your medical summary.
    Self-Care

    • Prepare your child to perform activities such as taking their own medications when visiting friends.

    • Promote healthy eating and encourage your child to participate in meal planning and preparation. Use this time to teach your child about any dietary restrictions that may accompany their condition.

    • Use correct medical names and set goals for more independent care.

    • Praise your child for self-care and increasing independence.

    • Set up your own routines, such as taking medications and telling your parents when you are running out.

    • Keep track of your prescriptions, test results, procedures, and appointments with help from your parents and your health-care team.

    • Learn about your community and find resources related to your condition.

    • Take charge of preparing and taking any medications or treatments on your own.

    • Plan ahead to fit your daily care into your schedule so you can hang out with friends, participate in sports and clubs, and attend school.

    • Keep track of your appointments with a calendar or your cell phone.
    Education

    • Keep track of your child’s progress in school. If your child is having difficulties meeting expectations, seek help from guidance counselors or teachers.

    • Set homework time and encourage independence while also being available when your child needs you.

    • Talk to your child about what they want to be when they grow up.

    • Have your child practice using age-appropriate websites together with you.

    • If your child has difficulty with school or in social settings, consider speaking to your child’s doctor about seeking a formal educational or behavioral assessment.

    • Ask your child’s health-care team about the need to discuss your child’s condition with their school.

    • Practice explaining your medical condition to teachers, camp counselors, and nurses who need to know.

    • Develop a 3-Sentence Summary of your condition.

    • Talk about career interests and begin to set goals for after high school.

    • Take part in meetings about your education.

    • Get to know your school guidance counselor.

    • Look for volunteer or part-time job opportunities.

    • Go for career counseling, shadow someone at their job, attend a job fair.

    • Speak to your health-care team about scholarships that may be available through your program.

    • Going to college? Register with the Disability Office on campus.
    Social

    • Encourage your child to make new friends.

    • Coach your child on how to talk to their friends about their condition.

    • Support your child’s continued involvement in activities to develop their interests.

    • Ask your child about teasing and bullying.

    • Encourage your child to speak to somebody they can trust if they are having trouble with their peers.

    • When your child visits friends, give parents a basic understanding of your child’s condition if necessary.

    • Celebrate your child’s achievements.

    • Connect with other families and consider joining support groups in your area or through the internet.

    • Join teams and clubs at school or get involved in activities such as camps and community programs.

    • Think about with whom you would like to share the details of your condition.

    • Hang out with friends.

    • Learn to plan ahead for being away from home by preparing any medications you might need to take with you.

    • Look for young adult support groups in the community.

    • Continue to participate in activities at school and in your community.

    • Get involved with your local Arthritis Foundation office. Many offices have camps or education days you can get involved with and meet others just like you while helping children with arthritis and related rheumatic diseases.

    • If you are dating, decide when you are ready to talk about your health condition with your partner.

    Taking Medications

    Things to Know about Your Medicine

    • Make sure you know the exact name of the medicine(s) you take (brand and generic).

    • Learn why you need to take each medicine (how it treats your condition).

    • Ask your doctor or pharmacist if you have questions about taking your medicine.

    • Let your doctor know if you have trouble taking your medicines (hard to swallow, forget to take, upset stomach, other problems).

    • Side effects can be bothersome and dangerous – make sure you know what side effects to look for. If you aren't sure, ask your doctor or pharmacist.

    • Don't take too much or too little medication. Know how much to take, when you can take more, and which medicines can be taken together.

    • Whenever you go to a doctor or to the hospital, always bring your medications or a list of your medications, including non-prescription medications.

    • Keep track of when you need to refill your medicines and call the pharmacy for your refills.

    • Keep your list of medicines with you.

    Find ways to Remember to Take Your Medicines

    • Take your medicine at the same time every day. Taking your medicine at a specific time, such as 10:00 p.m., might be better than bedtime if your bedtime changes. Work with your doctor to set a schedule that works for you.

    • Take your medicine at the same time you do another daily routine (with breakfast, brush your teeth, watching a daily TV show).

    • Use a pill box to organize your medications, and to keep track of whether you took them. Pill boxes come in different shapes and sizes, and can be bought at any drug store.

    You may want to use medication reminders:

    • Set up a cell phone alarm.

    • Use an alarm-vibrating pillbox, pill organizer, automatic pill dispenser, and/or alarm watch. To find the right system for you:

      • Ask your pharmacist
      • Check with your local medical supply stores.

    • Try one of the FREE online programs that can help you keep your medication list up to date and remind you to take your medications:

      • Go to http://mymedschedule.com/ to get reminders by email or text.
      • Download a medication reminder app for your smart phone. There are lots to choose from and most are free. Try a few and choose the one you like best!
        • MediSafe
        • MedCoach
        • Med Minder
        • …and others!

        Adapted from http://internet.dscc.uic.edu/dsccroot/parents/milestones_teens.asp

    Do your HOMEWORK!

    Choose one of the following activities to improve your medication-taking skills!

    • Assignment #1: Make a chart of all your medications. Include the name of the medication, how much you take, when you take it, why you take it, what to do if you miss a dose, and what the possible side effects are. If there is information that you don't know, ask your parent or health care provider. Post the list somewhere that you will see it regularly, to help you learn it. Put a copy in your wallet or inside your phone case so you will have it with you in case of emergencies.

    • Assignment #2: Try a new system to help you remember to take your medications. Decide when you will take your medications, where you will keep them, and how you will remind yourself to take them. Try using some of the toolks and suggestions above. For the week after you start your new system, keep a chart of how many times you forgot to take your medications and see if you are improving.

    Finding and Using Adult Health Care

    As young people grow from childhood in to adulthood, may well move from care by pediatricians into adult medicine. Moving to a different town due to school or a change of employment will also create a need to find a new doctor, especially if you happened to grow up with chronic health issues. So, how do you find a doctor who will meet your medical needs, that will be covered by your health plan, and who will give
    you the care you are looking for?

    Before you start looking for a new doctor, think about what you want:

    • Is where the office is located important?

    • Will you need help with transportation?

    • Do you need an office that is wheelchair accessible or do you need other special assistance in the doctor’s office?

    • Are office hours convenient?

    • How do you contact the doctor at other times?

    • What hospital do you want to use, and is this doctor on the staff there?

    • Do you want someone who will take time with you during an office visit or are you comfortable being seen by someone who is “good” in his or her field but perhaps does not have the best bedside manner?

    • Is it important that this new doctor is knowledgeable about your special
      health care needs or do you think you can provide that information or
      connect the new doctor with those who could provide medical insight?

    Ways to look for a new doctor include:

    • Ask your current doctor

    • Check out the doctor your parents or other family members see

    • Call a family support group or adult disability agency and check around

    • Ask adults who have health needs similar to yours for recommendations

    • Refer to your health insurance company booklet of approved providers

    • Ask a Vocational Rehabilitation or Independent Living Center counselor

    • Find a university health center (sometimes there are research studies going on which offer free care)

    • Contact your local Medical Society, American Academy of Family Practitioners, or Internal Medicine Society either through the Yellow Pages or on their national websites

    Since your wellness depends on the medical services you receive, it is important
    that your comfortable talking with your new doctor and feel that he or she
    understands your concerns. Consider scheduling a “get-acquainted” interview before you make a final choice of a new doctor. You will have to pay for this visit, as it is NOT covered by insurance benefits. An ideal time is about 15 to 30 minutes and should not waste your time or the doctor’s. The best time to see a new physician is when your health condition is stable so you aren’t asking for crisis care while seeing if you
    can develop a working relationship.

    Think about (and write down) questions that are important to you:

    • Is the doctor knowledgeable about your health issues and/or willing to learn from you and from previous doctors?

    • Do you like the communication style with the doctor and in the office?

    • Are you satisfied with office practices and access during an emergency or in urgent situations?

    • Do you have access to hospitals and specialists if I need them?

    Doctors who like to care for children are different from doctors who like to care for adults. For this reason, young adults seeking health care need certain skills:

    • Ability and willingness to tell the doctor about your history, current symptoms, lifestyle, and self-care in just a few minutes (including carrying your own records and a summary of your medical history).

    • Ability to ask questions about your condition and how it will affect your school, work, recreation, and social life.

    • Ability to tell the doctor about your needs for education, technology, and accommodations and how your condition affects or might be affected by these.

    • Willingness to follow medical recommendations that have been mutually developed by you and your doctor.

    • More independence in following up with referrals and keeping all agencies informed.

    • More involvement in keeping yourself well with diet and weight control, exercise and recreation, following medication, treatment and hygiene regimens, limiting risk-taking behaviors (such as drinking alcohol, smoking, taking non-prescription drugs, or unsafe sexual practices), and getting help when you feel angry, lonely or sad for long periods.

    • Being more aware of your physical and mental symptoms and health needs before you have a serious me dical crisis and knowing when to inform your doctor.

    • Developing a plan for action for when you need emergency care: when to consult with the doctor, what hospital to report to, what care you want and do not want, and naming someone who can let your wishes be known if you cannot (health care surrogate).

    • Understanding how the health care benefits/insurance plan you have works for you: when to call for pre-approval, how to get reimbursements, what services are not covered, and how to file an appeal if you do not agree with decisions from the plan.

    • Recognizing that as you become more capable in directing your care that you, not your parents, should make medical appointments, be the most knowledgeable about your health needs, know when to seek guidance in solving problems, and demonstrate that you are capable and competent and ready for adulthood!

    Source: KY Commission for Children with Special Health Care Needs: KY TEACH Project. http://chfs.ky.gov/ccshcn/ccshcntransition.htm