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

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Recommendations for Parents and Families


EACH DAY THIS working group examined the assigned issue: psychosocial secondary conditions, mobility problems, or body systems. At the end of the third day the group then developed statements regarding the overall focus of the entire three days, in the belief that many of the ideas and recommendations that emerged from the discussion of each one of these areas overlapped with those from the others. The general themes relating to all three days were therefore gathered together and are presented in the concluding section of this report.

WHO ARE THE PARENTS?
The focus of this report is on what parents and other family members can do to prevent secondary conditions associated with spina bifida and cerebral palsy. Families represents a broad group of people, including not only biological parents, but also foster parents, guardians, siblings, and significant others who have an ongoing emotional tie to the child or adult in a personal, not professional, relationship.

WHAT ARE THE MODELS FOR THE BEST SOLUTIONS?
As this working group listened to the presenters and discussed the issues, they became aware that these deliberations did not fully address the cultural diversity that exists in the United States and, more importantly, among persons with spina bifida or cerebral palsy and their families. Although the following recommendations can be seen as biased toward middle-class white families, we urge users of this document to adapt these recommendations for use by people of all colors and ethnicities, rural and urban families, and families of all economic and educational backgrounds. This working group charges that efforts to implement the recommendations that emerge from this conference address this critical matter of access for all.

WHAT ARE THE ISSUES?
This working group endorses the issues outlined by the presenters on secondary conditions under the rubric of psychosocial issues, mobility issues, and body systems health and function. The problems that young adults with cerebral palsy or spina bifida face don't begin once they reach adulthood, but can often be traced back to early childhood. Therefore, the role of the parent and the opportunities he or she presents to the child are critical. With this in mind, much of the discussion of the major issues and the recommendations focused on the relationship and the interactions of the parent with the child or young adult who may still live at home. This is not to imply that this group did not understand and appreciate the role of the family, and particularly the parent, throughout the lifetime of the individual who has cerebral palsy or spina bifida, no matter how close or far away they may live.

Psychosocial
The group identified the leading psychosocial problems that young adults with disabilities face: learned helplessness, depression, learning problems, frustration and anger, and low self-esteem. The central dilemma for the parents of young people with developmental disabilities is that these same issues confront every adolescent, and it is therefore extremely difficult to know when or how to intervene.

Problems that are more specifically those of the disabled adolescent were also identified:

• coping with prejudicial responses by the public about one's disability,
• low expectations regarding the ability to socialize and to achieve intimacy with others,
• problems centered in the lack of privacy and in developing sexuality, and
• a skewed sense of independence and a related confusion about what he or she needs a personal attendant to do.

Career planning is a most acute problem for adolescents with disabilities; problems in this area are often manifest in the young adult's lack of personal momentum, lack of goals, and inability even to think about career choices.

Mobility
A useful assessment of the mobility problems of anyone with a developmental disability can never be simple; the whole family has to be taken into consideration:

• Emotional and physical limitations of the parents may directly impact the mobility of the young adult.
• Parents need training in body mechanics; some may need equipment to assist with lifting.
• Financial considerations are critical, and often complex. For example, if the young adult is independent, he or she may earn enough to live on but then fail to qualify for any services or reimbursements. As a consequence, when durable medical equipment is needed, it has to be purchased with what he or she earns; if the equipment is too expensive, the person may be faced with the decision to do without or relinquish some independence to be able to get funding.
• Accessibility within the home may be a problem. Can the child or young adult even get into the closet to pick out his or her own clothes for the day? Get into the kitchen to fix a snack? Get into the bathroom to take a bath or use the toilet unassisted? Go outdoors unassisted? Or must he or she wait for someone else to help before doing any of these things?

Body Systems
Health care for anyone, including those with developmental disabilities, is a lifelong process; because something works at one age doesn't mean it will continue to work. This is the reason that medical care for persons with cerebral palsy and spina bifida needs to be continued after 18 even though funding may run out. All too often, under the current situation, a crisis must occur before a person can receive services. Good health care should include preventive care-routine health exams, dental check-ups, pap smears and breast exams (for women), evaluation of mobility devices and needs, orthotics, and so forth.

Coordinating general or basic health care with the special health requirements of the person with a disability is usually not done well, if at all. Repeated examination by different persons can be a problem; a child or young person may be unwilling to tell his or history again and again, to be prodded or made an example over and over, and so may balk at going once more to a health care provider.

Family members and persons with the disabilities may deny or ignore defec-tive body parts, ignoring symptoms as they arise. This and other problems may be exacerbated by misconceptions and confusion about what the disability is and what may be other or additional health problems. In view of these concerns, parents need to be given continual opportunities to learn about and more fully understand their child's disability(ies).

The optimum level of exercise is difficult to determine, even when mobility and access problems have been addressed and solved. As families we know too little about the long-term costs and benefits of any exercise regimen to joints and muscles, or even how to define fitness for the person with a disability. We don't know how to factor in the natural aging process. We don't know appropriate target heart rates, calorie expenditures. In addition, community-based fitness and recreational programs that may be appropriate for persons with disabilities are lacking.

THE UNDERLYING PROBLEM: THE "SYSTEM"
The fragmentation and piecemeal approach to health care and social services seems intractable. These "systems," for example, are based on the assumption that the need for specialized care for the child with cerebral palsy or spina bifida ceases when he or she reaches the age of eighteen. Clinics and practitioners focused on adult care for people with cerebral palsy or spina bifida are almost nonexistent. Furthermore, interdisciplinary preventive care focused on secondary conditions is virtually unheard-of.

Persons with disabilities face a "system" riddled with jargon, no coordination, and an appalling lack of knowledge, skill, or positive attitudes. For instance, physicians and others who become frustrated by a situation too often ignore it rather than continue to try to deal with it. The barriers erected by poor communication among and nonexistent links between the parts of the "system" are the worst barriers facing persons with disabilities and their families.

As the young adults get older, they are less likely to go for continued care if they have to go to multiple sites and search for physicians who will care for them. Moreover, they may not know exactly what they need, especially if they have learning disabilities. Case managers are extremely important, in fact, necessary. So, too, is a multi-disciplinary model to ensure the best continuity of care.

The role of parents and other family members, as well as the person with the disability, in solving this set of problems can be, and often is, an important one. Families often spend a great deal of energy as advocates working hard for reforms in the "system." This level of advocacy is certain to continue, and to be necessary, until these needs are met.

THE MAIN ISSUE AND PRIMARY RECOMMENDATION

1. The parents' goal should be to work themselves out of a job as the direct care provider. The emotionally supportive relationship continues, but the adult child must manage his or her own life. Only then can the parent and child carry the torch together to promote the achievement of all of these recommendations.

THE OVERALL RECOMMENDATIONS
2. Parents and family members need to have expectations and provide opportunities for their children (at all ages) to make decisions (helpful or not) and accept consequences (success or failure), especially those pertaining to daily activities and personal preferences.
3. Parents should maintain a journal or life record of the major events in the child's life. This should be reviewed periodically. The record should be shared with and passed on to the child during adolescence or at an age-appropriate time. This information is for families and individuals, and sharing is at their discretion. This record should include:

• health issues/problems
• major developmental milestones
• family structure/dynamics (major changes)
• therapy and service record (provider and type of service)
• changes in function
• ongoing concerns
• assessments
• formal reports, i.e., individualized educational plans (IEPs), individualized family service plans (IFSPs), individualized transitional plans (ITPs), individualized program plans (IPPs)
• insurance information and financial information like Social Security Insurance (SSI), trust funds
• legal matters, i.e., living wills
• equipment and vendors

4. Because parents and other family members are role models for the child at all ages, they must take good care of themselves. Their actions or inactions teach their child. Parents and family members must not only advocate healthy behavior but also provide healthy role models in the following areas:

• fitness and exercise
• personal care
• education
• self-esteem and pride
• empowerment
• advocacy for equipment and services
• educating professionals and practitioners
• personal safety-refusing to be victims of violence, crime, substance abuse

5. Parents need to teach their children (at all ages) the basic life skills, providing ample opportunities for them to practice problem-solving and management skills. These life skills must be rooted in knowledge, attitudes, and behavior (actual performance). These life skills include:

• time management
• money management
• energy management
• stress and coping management (self-care, how to handle teasing, spiritual self-care)
  information and resources management (including access to these)
  people and systems representatives management: the ability to be an assertive, effective advocate on one's own behalf
• self-care techniques related to activities of daily living, instrumental activities of daily living
• development of social life
• health and wellness care, to include nutrition and fitness
• personal safety and self-defense

6. As a natural outcome of these personal activities, parents and families must seek to impact existing organizational structures and promote changes in the "system." They must make demands on themselves and on the "system" to bring about basic changes:
a. Promote parent-to-parent sharing and training, forming a network to express satisfaction and dissatisfaction clearly to health care providers and others.
b. Form linkages with leadership in medicine and other health care fields to provide consumer input; focus on medical schools, universities, and programs that train other health care providers, as well as the professional associations these people belong to.
c. Let vendors know what equipment, videos, programs need to be developed to meet the needs of families of disabled persons.
d. Provide opportunities for children and adults with disability to share, mentor, and educate others.
e. Become politically involved through letter-writing campaigns and other means.
f. Promote comprehensive services, i.e., adult clinics, remembering that although early intervention is important, it is never appropriate to give up because it's "too late"; each person's problems need to be addressed regardless of the kind of parenting or health care they have received before.

7. Parents and other family members are also part of the system and also experience the consequences of their child's disability; therefore, they should:
a. Advocate on behalf of themselves.
b. Work with professionals.
c. Educate others.
d. Take care of themselves and their own health.
e. Seek support and respite with regard to their own physical, spiritual, and emotional needs.
f. Remember that it's okay not to be a superparent.

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