New Responsibilities 12-14

Doctor using a stethoscope to examine a patient in a medical office to promote personal health responsibility.

Written for Ages 12 – 14

Elementary school is behind you and you are now in middle school. This move has meant many changes in your life including new freedoms and new responsibilities. One of the changes that you may have experienced in school is more responsibility for keeping track of assignments and homework. You are probably using a planner to write down and keep track of assignments that you have to do for school and other things you need to remember. This shift in responsibility is to help prepare you for high school, work, college, and future independence. Now is also a good time to take more responsibility for your health care.

You know that you need to be as healthy as you can in order to go to school, be with friends, and do the things you want to do. Up to this point, your parents have probably taken care of most, if not all, of your health-related activities such as reminders to take medications, working with doctors, or paying for the health care that has kept you healthy. In order for you to take over these responsibilities and have a job, go to college, and/or live independently when you are an adult (18-21 years of age), it is necessary for you to learn about your health condition or disability. You need to begin to take responsibility for some of the activities that help to keep you healthy.

So what can you do right now and over the next few years to be come responsible for managing your health care?

First, learn as much as you can about your health care needs. Do you know your diagnosis? Can you list your medications and when they are taken? Do you know what you have to do to stay healthy?

Second, try to do as much as you can. Do you carry out the tasks that keep you healthy? How much help and how many reminders do you need? Can you do these things independently? If there are activities or tasks that you cannot do, can you direct others to do them for you? There may be things that you will never be able to do all by yourself, but you can still learn how to tell someone else how to do these things for you. This is a great skill to have if you are away from home and need to ask someone for help, or if you are working with a new personal care assistant. This skill will also be helpful if you go away to college or want to live independently.

Third, actively participate in your health care. How much do you have to say during your doctor visits? Do you ask and answer questions during doctor visits or do you let your parents do that? Do you spend some time alone with your pediatrician? Do you agree to treatments and participate in health care decisions as an equal partner?

These questions and the ones in the checklist will help you determine the areas where you can be practicing responsibility. One of your goals over the next few years is to become an expert in your health condition and to become responsible for all the activities that help to keep you healthy. This may seem like a lot to learn. However, if you start now and take one step at a time, you will be amazed at what you can accomplish over the next few years. By taking responsibility for managing your health care, you will be working toward achieving the future goals you set out earlier in the “Envisioning a Future” section.

Tips for Parents

Young people with disabilities and chronic health care conditions are often at a disadvantage when it comes to getting a job, despite the fact that these young people want to work. Early work experiences, particularly part-time work, are very important. These experiences make a young person more attractive to future employers and help get young people to think about themselves as members of the workforce.

A survey of youth 12-18 years old conducted for the Social Security Administration found that these youth, even those with health conditions, reported being very interested in getting a job. Of all the age groups surveyed, young adults’ ages 13-14 with disabilities were most interested in career readiness programs. Seventh graders with special health needs actually had higher scores for positive attitude, interest, and competency toward work than those without disabilities. However, as the young people surveyed aged, scores decreased compared to healthy youth. This study tells us that pre-vocational programs and opportunities for part-time work should be targeted at those 13 and 14 years of age who are most interested in work.

So how do you take advantage of this interest and channel it into focused work at school and ultimately productive employment?

Begin with chores around the house. The successful completions of chores are an excellent way to demonstrate personal independence and gain early work experience.
Encourage and work with your child to participate in volunteer activities in the community. Your child might start by working for a disability advocacy group such as the Sickle cell Disease Association, Spina Bifida Association, or the March of Dimes. Other opportunities for volunteering include the public library, animal shelters, church, and recreational programs.
Explore and participate in pre-vocational and vocational support activities. Encourage your child to speak with vocational rehabilitation counselors and Independent Living Centers in your community. Check with the guidance counselor at your child’s school for these and other resources.
Encourage part-time work experiences. Use volunteer activities as work experience and as a spring board to paid employment.
Discuss the relationship of good health, educational success, and future employment as a means of achieving personal goals.

Tips for Youth

What kind of a job do you want to have when you are an adult?

Now is a good time to find out if your health condition or disability might limit the kind of work you can do when you become an adult. This will help you pick out the best course in high school and help you decide what kind of training or additional education you might need. It’s also a good time to find out if you are eligible for services from Florida’s Division of Vocational Rehabilitation (Voc. Rehab.). Voc. Rehab. can start to work with people as young as 14 to help them figure out what they are good at, and what kind of job they would like to have. This state agency may be able to help you pay for special services and supports that you need while you are in high school to better prepare you for the world of work. Sometimes they can also help find the best vocational or technical school or college for you and pay for some of the costs of going to that school. Remember, it never hurts to ask.

Transition Checklist (check the items that are true for you.)

I can describe how my disability or health condition affects my daily life.
I can name my medications (using their proper names), and the amount and times I take them.
I answer at least one question during a health care visit.
I have talked with my doctors or nurses about going to different doctors when I am an adult.
I manage my regular medical tasks at school.
I can call my primary care doctor’s or specialist’s office to make or change an appointment.

Download: Transition Planning Timeline Checklist

Production Team Members: Robert W. Gibson, Ph.D, MSOTR/L – Author; John G. Reiss, Ph.D.- Author; Narayan D. Raum – Project coordinator, Designer, Photographer

Florida Department of Health, Children’s Medical Services: Susan J. Redmon, R.N., M.P.H.- Contract Manager
Acknowledgements: Jane Warner & Christine M. Burke, Med, CHES – Keene State College

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