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

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Recommendations for Health Care Professionals

THE TASK of this working group was to recommend actions by health care professionals that would decrease the incidence and negative impact of secondary conditions on persons with cerebral palsy or spina bifida. Some of the recommended actions are intended to be indirect, that is, to encourage behaviors by persons with cerebral palsy or spina bifida that would decrease or prevent secondary conditions.

PERSONAL AND INTERPERSONAL BEHAVIORS

The Secondary Conditions

The psychosocial secondary conditions considered included:

The Inability to Develop Social Skills. The lack of social skill develops in a young child who is isolated from social opportunities.

The Inability to Take Charge of One's Own Health Care. Helplessness and passivity can result when health professionals are insensitive and fail to communicate with persons in their care. The problem may be manifested in the person's avoidance of decision making about his or her health, not expressing preferences and needs, and not being informed about choices.

Depression. Depression is the consequence of isolation, lack of information, fear of the unknown, fear or feelings of failure, dependence, lack of opportunities to socialize and express sexuality, and feelings of rejection and alienation. Confusing and changing messages about the relative benefits of inclusion as opposed to associating only with others with disabilities can contribute to depres-sion.

Medical and functional problems that result in time away from productive activities and extended recovery times contribute to isolation. Changing one's mode of mobility can feel like failure, especially when health care professionals (among others) indicate that anything other than ambulation is less acceptable.

Dependence Following Attempts to Be Totally Independent. Finding an appropriate balance between independence and dependence is extremely difficult, and the consequent stress and exhaustion can help produce ultimate dependency.

Low Levels of Expectation. A person's low self-expectations are often the consequence of the low expectations of others and of overprotection, which prevents their discovering strategies for accomplishing their life goals.

Family Adjustment Problems. The fundamental problems for families are time and financial restraints, sibling interactions, and lack of information or resources at appropriate times.

Learning Disabilities. Learning disabilities may be primary or secondary to a lack of appropriate experiences and may not be dealt with promptly because of concentration on early intervention in mobility problems.

Lack of Opportunity to Make Choices. Choices may be limited by poverty. The high cost of optimal solutions would tax even those families with high levels of income and insurance coverage.

The Recommendations for Health Care Professionals

For Physicians, Therapists, Nurses, and Others

1. Provide information that is condition-specific at multiple points in the life span. Review of the same information may be necessary again and again. Give information at appropriate developmental stages, points of transition, and when the person is ready or needing to hear it. Packages of information should include videotapes and interactive media, as well as print materials. They should include information about support groups.

2. Take a holistic perspective that combines typical health and development issues with those specific to the person.

3. Address the person directly and ask about needs and preferences. Allow the person to assume personal responsibility for health and wellness.

4. Provide resource lists, referral sources, and opportunities to learn about alternatives.

5. Provide a single point of entry to a system that coordinates the needed care. Effective clinics have multiple disciplines, knowledge of useful resources, and an attitude that demonstrates respect for individual decision making and acknowledges when knowledge is deficient for making informed decisions about care options. Pediatric care providers should also facilitate appropriate transitions to adult care. Specialists should educate nonspecialist professionals about how to manage the care of persons with disabilities, including appropriate sources for consultation.

6. Promote the idea that the physiatrist is the most appropriate primary care physician for people with physical disabilities.

7. Provide families with the opportunity to use peer counseling and other families as resources.

8. Be sure that adults become aware of new assistive technology that may be better than previously used methods.

9. Encourage families to develop a positive attitude about impairments and functional limitations.

10. Train health care technicians in appropriate handling and communication techniques for persons with disabilities.

For Professionals in Rehabilitation

11. Provide consultation by telephone, computer, or other media to health care providers who are not experts in the care of persons with disabilities.

For Educators of Health Professionals

12. Develop and provide curriculum experiences that expose students to practical experience in the daily lives of people with disabilities who are coping successfully with challenges. Assign students to follow a family with a member with disabilities over an extended period of time. Encourage students to join consumer organizations, to become more informed about disability issues, and to visit community services and agencies for persons with disabilities.

13. Provide students with ideas for making their future offices more accessible and comfortable for use by persons with disabilities.

14. Provide professionals who work in rehabilitation but who do not have the appropriate educational background with inservice or postgraduate education.

15. Provide students with information about sexuality issues for persons with disabilities.

The Recommendations for Research and Educational Programs

Agencies that will fund research on the psychosocial impact of disabilities include the National Center for Medical Rehabilitation Research, National Institute for Disability and Rehabilitation Research, and the Centers for Disease Control and Prevention (CDC). Other agencies and organizations with relevant interests in research and education include the U.S. Department of Education, the Spina Bifida Association of America (SBAA), and the United Cerebral Palsy Associations (UCPA).

For Public and Private Agencies

16. What is the extent of secondary disabilities, such as depression and learning disabilities, in persons with cerebral palsy or spina bifida? What is the extent of latex sensitivity in persons with spina bifida? Have life expectancy and years of chronic secondary conditions changed over time as some persons have had the benefit of various types of early interventions? Research should investigate the extent of these problems in the population at large, not just in clinical samples, and in subgroups within populations, such as persons with different levels of myelodysplasia or different types of cerebral palsy, e.g., spastic diplegia versus athetosis. How are outcomes affected when multiple conditions exist?

17. To what extent are persons with cerebral palsy or spina bifida employed, living independently, driving, and so forth? What are the barriers to, and costs and benefits of, various options in these areas? How can persons with disabilities develop skills to make themselves employable? What are the comparative effects of various models to promote employment?

18. What is the impact of social networks and opportunities on the prevention of secondary disabilities?

19. How can families best prepare a child to develop personal and interpersonal behaviors that prevent the development of secondary conditions?

20. What are the correlates and predisposing conditions of depression in persons with disabilities? Who copes successfully? What are the behaviors that reduce the incidence of secondary conditions?

21. What are the effects of various models for coordinating health care for persons with spina bifida or cerebral palsy?

22. How do sources of medical insurance coverage impact on the development or prevention of secondary conditions?

For the U.S. Department of Education

23. Investigate the effectiveness of health professionals (e.g., physical therapists and occupational therapists) in the public schools in preparing persons with spina bifida or cerebral palsy for adult roles. What are the effects of different models of service provision by these professionals? What are the effects of different educational models (e.g., inclusion versus segregated classrooms) on personal and interpersonal behaviors?

24. Encourage state education departments to study the impact and outcomes of decreasing numbers of health professionals (nurses, physical therapists, occupational therapists) in public schools.

25. Study ways to encourage and enable young people with cerebral palsy or spina bifida to participate in the development of their individual educational plans (IEPs). How effective are various types of IEPs in preventing secondary conditions?
26. Measure the impact of vocational counseling and job placement activities.

For the SBAA and UCPA

27. Identify the characteristics of a model clinic for adolescents and young adults with spina bifida or cerebral palsy and disseminate information on how such a clinic can be developed and funded.

28. Develop educational materials on sexuality and intimacy for persons with spina bifida or cerebral palsy and their health care providers.

For All the Named Agencies. All agencies named above should cooperate to:

29. Develop a national speakers' bureau of people with disabilities.

30. Foster a coalition of national organizations that represent disability issues to work collectively on the development of curriculum materials for edu-cating health care professionals, parents, siblings, and consumers with disabilities on health promotion and the prevention of secondary disabilities.

31. Develop information on basic growth and development parameters and life- span issues for persons with cerebral palsy or spina bifida.

For the National Institutes of Health and the National Center for Health Statistics

32. Fund the analysis and dissemination of results of the National Health Information Survey Disability Supplement, which addresses many of the questions listed above regarding the incidence and prevalence of secondary conditions.

FUNCTIONAL MOBILITY

The task here was to recommend actions by health care professionals that would directly or indirectly decrease the incidence of secondary conditions that reduce the functional mobility of persons with cerebral palsy or spina bifida.

The Secondary Conditions

The secondary conditions considered included:


The Recommendations for Health Care Professionals

For Physicians, Therapists, Nurses, and Others

33. Enhance clients' opportunities for choice among alternatives for mobility by helping to organize consumer showrooms demonstrating assistive technology and technology fairs such as Ability Expo, and by providing opportunities to look at and try equipment of various types and to view options in catalogs.

34. Offer alternatives and respect choices for modes of mobility made by persons with disabilities. Do not view the use of alternatives to ambulation as failure.

35. Immobility can be thought of as a disease in and of itself. Make mobility issues a high priority in the planning of both inpatient and outpatient treatment for other illnesses, and do not fail to consider the interrelatedness of conditions. For example, the person with a primary disability who sustains an injury that might be minor in a nondisabled person may experience a negative impact on many aspects of life that are still present long after the initial injury has resolved, e.g., increased weight, muscle atrophy, skin breakdown, bowel and bladder problems, deconditioning.

36. Learn and communicate typical life-span development of persons with spina bifida or cerebral palsy.

37. Use alternative modes of mobility earlier and consider energy costs in the overall plan. Help the person avoid feelings of failure if mode of mobility changes to allow the person to conserve energy for productive activities.

38. Use peer counseling.

39. Reinforce education with written information that is developmentally appropriate. View such materials as a means of anticipating and guiding the person's choices of types of mobility.

40. To assure that assistive technology prevents secondary disability, ask consumers what has worked for them and what therapy has facilitated (or inhibited) their everyday functioning.

41. Develop mobility clinics that provide access to professionals from many disciplines, peer demonstrations of mobility equipment and counseling, and opportunities to see and try out various types of equipment.

42. The paucity of information about the management of tethered cord syn-drome has often caused distress for families and persons with spina bifida. Professionals must admit that they do not have all the answers but also must provide better education for parents regarding this problem.

Therapists should be aware of the need to do periodic, detailed muscle testing to monitor strength and to document function over time; careful records can aid in prompt identification of the need for further workup.

43. Help families find ways to recycle mobility devices; become better educated about consumer needs and available supports. All states except Arizona provide access to needed devices, but the laws vary from state to state. (New Hampshire has a new model law; write Marion Pollock, 10 Ferry #14, Concord, N.H., for information. Toby Lawrence can also provide information on state technical assistance acts at [202] 205-8736.)

44. Develop referral networks that help adults with disabilities identify experienced providers. Develop guidelines for consumers to aid them in finding expert sources of services.

45. Develop state-of-the-art summaries for health professionals to alert them to changes in early intervention and assistive technology.

46. When considering the prescription of seating devices, consider both needs related to functional performance and to prevention of scoliosis and other deformities.

The Recommendations for Research and Educational Programs

47. What are the interrelationships among secondary conditions, especially those that lead to a vicious cycle of decreased mobility and deconditioning? Ways to avoid the cascading effect of a minor injury or illness in a person with a disability should be identified. What are the components of success-ful avoidance of secondary conditions in persons with spina bifida or cerebral palsy?

48. Do mobility clinics decrease the cost of assistive technologies and therapies by avoiding incorrect or inadequate prescriptions?

49. Can assistive technology prevent secondary conditions?

50. Identify the best ways to educate families about life-span issues.

51. Compare educational models for effects of caregiver "burnout."

52. Compare models for maintaining health-related physical fitness in persons with disabilities.

53. How do outcomes considered desirable by persons with disabilities compare with outcomes typically studied by researchers and reported in the literature?

54. The effects of selective posterior rhizotomy, intrathecal baclofen, and surgery for release of tethered cord need study with controlled experimental designs. Who will benefit, and what are the short- and long-term outcomes, both positive and negative?

55. How does physical activity and use of seating devices relate to onset and prevention of scoliosis in persons with spina bifida or cerebral palsy?

56. Compare models for treatment of scoliosis in populations with neurologic conditions.

57. Develop comprehensive research and training centers for adults with spina bifida or cerebral palsy like those developed for spinal cord injury, burns, and arthritis. The model for a prevention center discussed by Donald Patrick at the University of Washington in Seattle should be studied, as should centers on spinal cord injury, rehabilitation engineering, childhood trauma, and other areas.

58. Determine the incidence and cost of return care, including hospitalization, resulting from inadequate management of secondary conditions.

59. Determine the incidence and types of increased disability resulting from the overuse syndromes in persons with primary disabilities.

60. Conduct research on new mobility devices designed for collapsibility, portability, and adaptability to changing conditions in the individual.

HEALTH-RELATED PHYSICAL FITNESS

The group selected the issue of health-related physical fitness for more detailed consideration. Issues related to physical fitness should be viewed from the perspective of the way fitness enhances health for persons with disabilities. The levels and components of fitness needed to maintain health are different from those needed for high levels of performance in athletics. Health-related fitness is a state characterized by the ability to perform daily activities with vigor and the presence of low risk for premature development of disease caused by inactivity. The elements of fitness are body composition, including concerns regarding weight and general nutrition, cardiopulmonary and cardiovascular status, and general strength, flexibility, and endurance for daily activities. Lifestyle elements include the avoidance of smoking, high fat intake, and other behaviors that can reduce the risk of other illnesses such as cardiovascular disease and cancer.

The active involvement of the person is needed for the development of effective fitness protocols, which may be difficult for persons with disabilities who are used to having services provided. Clients need to see how they can be more active and fit by incorporating activities into their daily routines. Protocols must be adaptable to the individual's lifestyle and readiness to create change. Furthermore, protocols should be comprehensive, addressing physical activity, nutrition, and weight control. Protocols developed for persons with other types of disabilities should be reviewed, such as those developed for participation in aquatic sports by persons with spinal cord injuries. More access to wilderness experiences that provide enjoyment as well as fitness activities would be useful.

The Recommendations for Health Care Professionals

61. Develop protocols for assessing fitness and counseling persons with disabilities on physical activity and nutrition to improve quality of life and prevent the development of further disablement. Individualized protocols are needed for various types of disabilities and their subtypes, such as spastic and athetoid cerebral palsy and various levels of spina bifida.

The Recommendations for Research

62. Because wellness depends on client involvement, study is needed of barriers to client involvement, means for overcoming barriers, the priorities regarding fitness of persons with disabilities, and the development of advocacy roles and peer support.

63. What are the risks and benefits of increased physical activity for persons with spina bifida or cerebral palsy, especially with regard to secondary conditions? What are the long-term effects? Which types of exercise are most effective?

64. How can persons with disabilities best be educated about physical fitness, wellness, and health?

BODY SYSTEMS INTEGRITY

The task here was to recommend actions by health care professionals that would directly or indirectly decrease the incidence of secondary conditions related to body systems integrity.

The Secondary Conditions

The secondary conditions considered included:

An extended discussion took place of the difference in overall health that could be created for persons with spina bifida or cerebral palsy if efforts were taken to change even one aspect of body systems maintenance, assuring adequate fluid intake. Persons with disabilities may decrease their fluid intake as a means of managing continence and avoiding the need to use the bathroom frequently.

It is unknown what a toll on personal health this entails, but the group believed that it could have a considerable impact on the incidence of secondary condi-tions ranging from bladder infections to skin conditions and general health. Many of the recommendations that ensued, therefore, suggested that it would be worthwhile to encourage health care providers and the advocacy organizations to mount a concerted effort to inform consumers about the benefits of and means for achieving appropriate fluid intake.

The Recommendations for Health Care Professionals

65. Evaluate clients' eating habits and nutrition; educate them about the need to avoid fluid restriction as a way to manage continence problems.

66. Develop behavioral plans for managing fluids, elimination, nutrition, and physical fitness and use them to educate clients about the interrelated nature of these issues and the consequences of secondary conditions when they are inadequately addressed.

67. UCPA and SBAA should develop a strategic plan for marketing these behavioral plans and to measure the success of implementing them. The development of a plan for managing fluid intake is the first priority.

68. UCPA and SBAA should promote the development of more adult clinics and develop a quality assurance plan to evaluate them. Similar plans developed by the foundations for arthritis, cystic fibrosis, and muscular dystrophy should be reviewed to garner ideas.

69. UCPA and SBAA should develop coalitions with other groups to mount education programs for health professionals and for adults with disabilities.

70. The FDA should disseminate information regarding latex allergies in persons with spina bifida. The labeling of all medical and surgical equipment regarding latex content should be required.

71. Develop bulletin boards for health professionals on the information super-highway to disseminate information on disabilities, the needs of consumers with disabilities, and new technology and management methods.

The Recommendations for Research

72. Develop a measurement system for assessing body composition of persons with spina bifida or cerebral palsy.

73. Develop a model for understanding body composition problems in persons with spina bifida or cerebral palsy that includes the contributions of exercise and activity, nutrition, metabolic factors, and endocrine system function.

74. Assess behavioral patterns associated with eating in persons with spina bifida or cerebral palsy.

75. Study the outcomes of implementation of integrated plans for maintaining health and fitness that consider skin integrity, weight control, and elimination management.

SUMMARY OF THE HIGH-PRIORITY RECOMMENDATIONS FOR PROVIDER

The final task was to reconsider all of the recommendations developed over the three days and select those to highlight as, by consensus of the group, being of the highest overall priority.

A. Develop more adult clinics using a one-stop shopping model and addressing the need of clients for product information, smooth transition from pediatric programs, and a focus on health and wellness. Periodic mobility clinics and product fairs with representatives from vendors, health professionals, and consumers who use products would be ways to assure that adults are aware of new developments.

B. The need for better education of both health professionals and clients suggests that it would be beneficial for a coalition of groups to form a national speakers' bureau consisting of persons with disabilities.

C. Attention should be paid to the interrelationships of secondary conditions that frequently result in a cascade of negative effects on health for persons with disabilities. Needs include educational packages for health care profes-sionals and for consumers, as well as research to better clarify the interrelationships so that better management plans and educational packages can be developed.

D. Information packages for developmental stages are needed for parents and consumers. They should be packaged for various reading levels and address issues across the life span.

E. Health care professionals should be cognizant of the need to address individuals with disabilities directly and involve them directly in their own care, using prevention models that promote health-maintaining behaviors on the part of the person and family members.

F. Health care professionals should develop a more holistic approach to the management of disabling conditions that includes issues of fitness, sexuality, health promotion, and prevention of secondary conditions.

G. Curriculum materials on all of the issues described above are needed for use in health professional training programs. The American Association of Colleges of Medicine and the American Society of Allied Health Professions and the individual professional organizations, such as the American Physical Therapy Association and American Occupational Therapy Asso-ciation, should take the lead in promoting the development and use of such curriculum materials.

SUMMARY OF THE HIGH-PRIORITY RECOMMENDATIONS FOR RESEARCH

H. Study the interrelationships of secondary conditions.

I. Study the epidemiology of disability and secondary conditions.

J. Study the impact of insurance on the development of secondary conditions.

K. Identify the components of successful IEPs that involve the child with a disability in developing the plan and that promote the successful transition to adult life.

L. Study the cost of living well with a disability.

M. Study the sources and prevention of depression in persons with disabilities, including models of successful coping.

N. Compare the effects and costs of various models for coordinating health care for persons with spina bifida or cerebral palsy.

O. Determine the basic knowledge about learning disabilities in persons with spina bifida or cerebral palsy, using as a model the research on learning disabilities funded by the National Institute on Child Health and Development.

P. Study the efficacy of interventions to prevent secondary conditions and to promote general health and wellness in persons with spina bifida or cerebral palsy.





The Health Care Professionals Working Group, led by Suzann K. Campbell with assistance as recorder by Paula Peterson, consisted of Steve Bennett, Meredith Chiles, Ellen Dibler, Jane Dorval, Wanda Hall, Gregory W. Heath, Grace Holmes, Fran Hudson, Daniel Hutchinson, Laura James, Matthew Janicki, Dick Koons, April M. Myers, Jay Nogi, Catherine Shaer, and Judy Small.

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