According to a recent survey, as teenagers with disabilities mature, they become more vocal with their feelings and opinions, saying they want and need a greater voice in their own healthcare. "Adolescents Want Control of Their Healthcare" reports on the findings of the survey, in which teens with a disability indicated what they want to know in order to be participants in their care. The accompanying article, "Aid for Adolescents Who Want to Take Charge," highlights ideas about what young people need to learn to manage their care. Both articles are adapted from original pieces that appeared in the Spring 2000 issue of "Window on Wellness," a health and wellness publication for people with disabilities. 

Adolescents Want Control of Their Healthcare

by Carole Igoe

What do teens and young adults with disabilities say about their health and health care? They say they want to be in charge!

Like all adolescents, these teens also want to find out who they are, cut the apron strings, belong to their own group and be independent. In the past, parents and health care professionals often felt that they had to keep this responsibility and protect their children and patients. They focused on the disability or long-term health condition and overlooked typical adolescent life tasks that all teens need to try to master.

Today, we are changing this attitude: we are recognizing that all teens have the right to envision and plan their futures. The new Individuals with Disabilities Education Act (IDEA) legislation for transition requires that special education students be taught about the legal rights and responsibilities that all American citizens receive when they reach age 18. Among organizations that are important resources in the movement toward more independence in health management are:

• PACER Center in Minneapolis (see Resources box next page). For almost a decade, parents at the center have helped young people with disabilities and their families speak out for health.

• Healthy and Ready to Work (HRTW) projects. Funded by the federal Maternal and Child Health bureau, seven HRTW projects help states develop adolescent transition services that include health care. In Cincinnati, Ohio, for example, there is Career Connections for Students at Lighthouse Youth Services. The WISH project at Shriners' Hospital serves young people in Lexington, Kentucky. For the nearest HRTW project, call the Institute for Child Health Policy at (352) 392-5904.

Teens speak out

Teens speak out What does "taking charge of health care" mean for teens and young adults with disabilities? In 1997, the PACER Center surveyed young people aged 14 to 25 in Minnesota. They had chronic illness or sensory, physical, learning or cognitive disabilities. Young people said they want to know:

• How to pay for their healthcare;

• More about their disability or chronic illness;

• What can happen if their condition becomes worse.

• How to make an emergency plan if their condition does get worse;

Teens want adults to talk to them about their healthcare

• They want someone to talk to about how to make their own medical decisions (less than 50 percent said they have someone to talk to).

• They want to meet someone with a similar disability who is working and living independently, who can be a mentor and guide.

• They want to be able to talk about health promotion and risk behaviors and concerns, such as:

1. Sexuality

2. Smoking

4. Feeling really angry or sad

5. Hurting oneself or being hurt by others

6. Family planning

• They want their medical providers to give them information about medical issues and their disability or chronic condition.

When Shriners' Hospitals surveyed adolescents and young adults in Florida, Kentucky, Utah, and Hawaii, the young people described two barriers to taking charge: their own fears and overprotection of their parents. For these teens, healthcare includes health skills, such as:

• Taking medications;

• Having information about specialized resources;

• Gaining self-knowledge about their maturing bodies and about their long-term conditions; and

• Gradually taking over responsibility.

One participant said, "We have the same basic needs as anyone in this age group: however, we also have extra considerations and limits that may be placed on us as we work towards independence."

"For me, one of the hardest things during my teenage years was that I wanted to challenge and defy my parents, as many teenagers do. However, because I was physically dependent on them for my personal care, my desire for independence seemed thwarted. There are many other special problems you may encounter that add to the difficulty of this transitional age. For example, if your chronic illness or disability is severe, you or your parents may think it is futile to plan for the future. If your disability or chronic disease is hidden, it can seem easier to deny, hide or ignore the needs of your health."

Aids for Adolescents Who Want to Take Charge

Learn about yourself

• Find out more information about your illness or disability: talk with your parents and doctor; get books and videos; meet others with your condition.

• Find out about your body: determine what you can do for yourself; what you need help to do; get sex education.

• Figure out your strong points: try school clubs, church groups, sports, and hobbies.

• Figure out which accommodations you need to learn and work: ask therapists, special education teachers, other people with your condition, or a vocational counselor.

Take care of your health

• Learn to handle your medicine: use a medication box; contact the drugstore to fill your prescriptions; use your insurance card at the doctor's office

• Speak up for yourself: remind your parents to let you talk to the doctor; plan ahead what to say; find a way to use a record book to share your health history.

• Make medical appointments: put together a list of your doctors and therapists and their phone numbers; explain your symptoms; use a calendar for appointments; access books from PACER such as Speak Up for Health and Workbook for Teens with Developmental Disabilities

• Plan for adult medical services: get names and adult primary and specialty doctors; learn about health insurance and SSI (Supplemental Security Income).

Teens speak up, learn

Teens and young adults are finding their voices to speak for themselves, master their self care, even help their parents understand what they want for themselves. Teen talk groups provide a sounding board to give them insight, courage and strategies to make these changes. Teens are surfing the Web to find out about their conditions and to meet other teens. There are chat rooms, online connections for hospital patients,

There are books for teens to help them understand their disability. There have been patient-education and self-management programs for some time for diabetes and asthma Now self-management education extends to other conditions; for example, the book Spinabilities: A Young Person's Guide to Spina Bifida

Parent's role

How do teens with disabilities and chronic conditions learn to take charge of their health? Like all transitions from adolescence to adulthood, this is a process, not an event. It is a process that is best begun by parents in early childhood, but it is never too late to start. It includes teaching children about their disability and talking about puberty and sexuality.

The process should gradually grant children an active role in their healthcare, helping them learn to talk to their doctors, developing their responsibility for making appointments, and planning with them to transfer to adult medical providers. Historically parents and providers have focused on treatment and habilitation and overlooked typical childhood development.

A life span, developmental approach helps parents support independence and loosen control. This approach emphasizes capability, experiential learning, autonomy and letting go. Parents who have had to live with health risks and other challenges their child has faced often find it difficult to allow typical adolescent risk-taking. Here are two helpful resources for parents about the developmental approach to teaching their children self-management skills in healthcare:

• A free brochure railed "Paving the Road to a Brighter Future" (see Resources box at end of article).

• The chapter called "The Impact of Chronic Illness and Disability on Adolescent Development," in Speak up for Health: A Handbook for Parents (see Resources).

Physicians' Role

Physicians are key players in the process. Dr. Kathleen Charvat and Dawn Nebrig at Cincinnati Children's Hospital gave this description of the role of the physicians: 

Visionary – Growing up is the goal.

Guide – Start anticipatory guidance before 12 years of age.

Teacher – Educate teens about their disability.

Coach – Build self-advocacy skills in your office.

Resource – Provide names of adult providers and discuss insurance coverage.

Cheerleader – -Support families through the process.

Physicians themselves report that this is a difficult shift. It is difficult to:

• Address chronic, even life-threatening health conditions with adolescent patients

• Change the role of parents.

• Address a typical developmental change like puberty, when the disability affects development.

• Deal with the lack of adult providers.

It's worth it

Young adults who have achieved independence – with the support they need – say it is worth the struggle. Nicole Robert, a young woman with muscular dystrophy, describes her achievement: "Today I live in my own apartment. I have an attendant who provides me with the care I need to live independently. I make my own decisions about my healthcare, and I train the people who help with my healthcare treatments. With freedom comes responsibility, and like everyone else, my life has its share of challenges. However, owning my own life is worth any challenges I encounter along the way."

This article is adapted from a brochure called "Transition to Independence," a publication of Career Connections.

Carol Igoe is a special educator, behavioral psychologist and family support specialist in the field of developmental disabilities. Ms. Igoe is also Program Director for the Ohio Healthy and Ready to Work Project, Career Connections for Students at Lighthouse Youth Services in Cincinnati and a parent of a child with disabilities.


Spinabilities: A Young Person's Guide to Spina Bifida is available through Google Books at books.google.com/books/about/SPINAbilities.html?id=VdMEAAAACAAJ

Transition to Independence is developed by the Health Care work group of the Southwest Ohio Transition Roundtable 1999, with funds from the Ohio Developmental Disabilities Council. Visit ddc.ohio.gov/Resource-Library/Publications/Transition-to-Independence

Free copies of Transition to Independence and Paving the Road to a Brighter Future are available by calling Lighthouse Youth Services, Inc., at (513) 475-5500.

Speak Up for Health and Workbook for Teens with Developmental Disabilities can be ordered through the PACER Center: PACER Center, Inc. Phone: (MN only) (800) 537-2237 (nationwide) (612) 827-2966 Web site: pacer.org E-mail: pacer@pacer.org