Preventing Secondary Conditions Associated with 
Spina Bifida or Cerebral Palsy Symposium 
February 17-19, 1994, Crystal City, Virginia

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Recommendations for Young Adults


THIS WORKING group focused on the realities of life for young people with cerebral palsy and spina bifida; the group's recommendations were therefore developed with the demands and limits of the real world in mind. The group first produced a list of conditions associated with cerebral palsy and spina bifida; these are called secondary conditions. The group then arranged these under three headings-physical, psychological, and social.

The most important issues for prevention in each category were then identified:

• Physical
  pain
  incontinence
  limited mobility
  problems with hormonal changes (sexuality)
• Psychological depression
  obesity, eating disorders
  lack of confidence, low self-esteem, poor body image
  learning problems
• Social
  interpersonal, sexual, relationship problems
  lack of vocational preparation, unemployment, lack of education
  access problems, transportation problems
  limited recreational opportunities

To generate recommendations, the group then asked, What can young adults do about these conditions? How can young adults prevent them, or at least reduce their impact on the quality of their own lives and on the lives of their peers?

PREVENTING SECONDARY PHYSICAL CONDITIONS
The first actions that young people with spina bifida or cerebral palsy might take to reduce the incidence of secondary physical conditions center on themselves. A surprising number, however, also focus on the world beyond the young adult's immediate sphere. These are some things that we believe young adults can do:

1. Monitor and control your own health.
a. Make sure you have a good, basic understanding of your disability.
b. Keep a record of your medical history, including conditions, operations, or treatments (dates, doctors, recommendations, and so forth). It is hoped that your parents will have begun this record already, and if so, you can continue it.
c. Take responsibility for making your own medical appointments, order-ing your own supplies, and so forth.
d. Insist that the health care team members that you consult talk to you about your results; also, ask the team to communicate among themselves so they don't give you mixed or confusing information.
e. Speak up for the development of interdisciplinary clinics, as well as the use of community hospitals in health care. This may include mobile clinics in addition to wellness centers. Encourage these clinics to use the Spina Bifida Association of America (SBAA) health care guidelines (available from the national office of SBAA) so that you can feel more confident about the level of care you are receiving.
f. For women, it is important to find physicians who understand the needs and concerns of women with cerebral palsy or spina bifida.
g. Make changes in your diet as your body changes, and work to keep an appropriate weight for your mobility and general health.
h. Develop a pattern of exercise for yourself. Find someone (a physical trainer) to help you, or advocate the inclusion of a physical trainer in an exercise or fitness program.
i. Beyond exercise, involve yourself in sports to help your physical condition and fitness as well as your social participation.
j. Realize that being able to get around and communicating with others are more than simply walking and talking-that is, make it your goal to be able to use those skills for greater independence.

2. Learn more about your own health by serving as a resource person for spina bifida or cerebral palsy clinics. As you gain more confidence in controlling your own physical condition, you might participate in a big brother or big sister program. You might also serve as a mentor at a spina bifida or cerebral palsy camp or conference.

PREVENTING SECONDARY PSYCHOLOGICAL CONDITIONS

Members of the young adults working group agreed that, as with secondary physical conditions, the key to reducing the impact of secondary psychological conditions on the lives of young adults lies with knowledge. Young adults need to learn why things happen; they can do this through the networks, the peer support groups, and the counseling services of local associations and schools. Specific recommendations for preventing the psychological problems associated with developmental disability:

3. Communicate with each other, your parents, and professionals to find out information about:
a. the signs of social and emotional problems that often accompany developmental disability, such as feeling depressed or isolated;
b. ways of coping with feeling depressed or isolated;
c. sexual roles and sexual functioning.

4. Take good care of your own mental health and encourage peers to do likewise.
a. You are a consumer. You have a right to ask for what you need. Be assertive!
b. Take time for personal enjoyment: hobbies, leisure time, shopping, Paralympics, quilting, sports, and so forth.
c. Accept your own sexuality and don't hesitate to ask for more information about what is sexually appropriate.
d. Help your parents and professionals realize your need for privacy and respect for your own body.
e. Request educational forums on topics related to mental health, in-cluding respect, confidence, values, sexuality, and similar topics.

5. Be aware of specific problems that may arise.
a. Recognize learning problems that may interfere with school performance or a job.
b. Learn about the effects of alcohol and drugs.
c. Learn to identify appropriate and inappropriate touching, whatever the setting.

6. Learn about the people in your community who can help you with psychological problems, such as psychologists and social workers. Use and encourage peers to use these professionals, as well as counseling services in schools and local mental health associations.

PREVENTING SOCIAL SECONDARY CONDITIONS

The secondary conditions rooted in social behavior and affecting the social relationships of the person with cerebral palsy or spina bifida can be reduced or prevented by such actions by young adults as the following:

7. Participate in peer support groups, both for your own and others' sakes.
a. Use rehabilitation counselors and peer counseling programs through independent living centers.
b. Participate both as consumers and as mentors in programs like the Adolescent Vocational Readiness Center in Washington (1-202-884-3203). These programs are beginning to be replicated across the country.
c. Participate in associations concerned with learning problems (Association for Children with Learning Disabilities, Council for Exceptional Children).
d. Encourage cross-disability groups for collaboration and socializing.

8. Encourage the integration of disabled persons with the broader community.
a. Work for progress in your community by volunteering to serve on committees in areas such as transportation, jobs, and health insurance.
b. Learn to use advocacy services and learn about client assistance pro-grams through Vocational Rehabilitation.
c. Promote a consumer empowerment focus as part of education.
d. Lobby for affordable, accessible health insurance that is not job dependent and that eliminates "pre-existing" conditions.
e. Communicate with government officials at all levels about your needs.
f. Encourage leaders in local and national advocacy organizations to include people from insurance and business, architecture, and fashion and interior design so that professionals in these fields will better understand the broad needs of persons with spina bifida or cerebral palsy.

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