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

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RECOMMENDATIONS FOR POLICY MAKERS AND ADVOCACY ORGANIZATIONS


AT THE BEGINNING of each work session, this working group assembled a list of the secondary conditions associated with developmental conditions like cerebral palsy or spina bifida that merit the attention of policy makers and advocates for persons with these conditions. The most critical conditions and issues for persons with developmental disabilities were identified and
discussed. These included:

• learning problems
• imbalance in family relationships
• difficulty with social relationships and sexuality
• depression and other emotional problems
• inadequate knowledge about the issues of transition (e.g., from childhood to adulthood)
• barriers to employment
• lack of consumer-directed health care services, especially for
  adults
• lack of standardized treatment and care programs for persons
  with disabilities
• community living issues
• lack of support for independence and enablement assistance
• lack of new concepts of health and prevention in the training of
  professionals
• equation of developmental disabilities with the mental retardation
  model
• lack of appreciation for the disadvantages and advantages of
  policies of inclusion
• dysfunctional therapy for disability
• prescription of harmful or nonfunctional seating, methods of
  ambulation
• inattention to opportunities to intervene to prevent secondary
  conditions
• inadequate attention or inadequate care for specific clinical
  problems: e.g., osteoporosis, excessive energy expenditure,
  contracture, scoliosis, cardiopulmonary dysfunction, pain
• scarce minority representation in programs for persons with
  disabilities
• inadequate training of professionals and of the public in the
  etiquette of disabilities
• uncertainty about reimbursement for new technologies and
  treatments because of their experimental status or greater
  expense

THE RECOMMENDATIONS

The recommendations of this working group are directed to policy makers in all arenas and to leaders of advocacy groups concerned with developmental disabilities or disabilities in
general. Some of the recommendations specify particular policy makers or advocates.

Those requiring immediate attention are the first two recommendations, which are marked with an asterisk (*); numbers 4, 5, 7, 8, 9, and 11 have high priority and are marked with a double asterisk (**).

Health Care and Welfare Reform

1. *Include services for children born with disabilities in any health care reform plan.

2. *Design health care reform to assure that managed-care "gatekeepers" and "continuity-of-care specialists" receive professional education and training in disabilities and secondary conditions. Establish an accreditation process for managed-care administrators and professionals that includes evidence of an understanding of disability.

3. Demand that the Clinton administration formulate and establish a rational income-maintenance policy that promotes productive work opportunities and independent living.

Education and Training

4. **Expand the Medical Education Model to include the physiological, psychosocial, support, and prevention needs of the person with a disability or chronic condition. Apply the expanded model in undergraduate, graduate, and continuing education.

5. **Develop a specialty for "continuity and prevention" in the field of disabilities.

6. Develop training programs for gatekeepers and managed-care administrators specifically focused on the needs of people with disabilities.

Treatment and Service Provision

7. **Assure that every person with a disability would be eligible for:

a. periodic evaluations at key points of developmental transition and as needed throughout the life span;

b. individual assistance in the development of a plan at regular intervals that includes all issues and services the person may need in preventing secondary conditions.

8. **Update and distribute service and treatment protocols and guidelines on the prevention of secondary conditions to clinics, professionals, individuals, and families. Where there are gaps, guidelines should be developed with significant consumer involvement.

9. **Develop a model of single-entry continuity of care (coordination of services) that includes social-emotional, medical, and preventive needs relating to disabilities and secondary conditions: e.g., learning disabilities, depression, family and social relationships, sexuality, mobility, and body system functioning.

This model should be coordinated by the "continuity and prevention specialist" to serve adults or children or both. This model could be located away from the tertiary care center; i.e., it may be located in an independent living center or other community-based setting.

10. Develop a model "health and medical record" that summarizes past and current diagnoses and treatment. Encourage parents and persons with disabilities to take such a record with them to each different provider and setting, as needed.

Research

11. **Support the study of the development and natural history of secondary conditions over the life span of the person with developmental disability to create better understanding of these conditions.

12. Promote the assignment to a single federal agency of responsibility for assuring that research is conducted on the prevention of developmental disabilities and secondary conditions.

13. Promote and support the development and evaluation by the National Institute of Mental Health or the National Institute of Child Health and Human Development, or both, of better instruments to assess the emotional, cognitive, and personality traits of persons with developmental disabilities.

Advocacy Agency and Conference Issues

14. The Spina Bifida Association of America (SBAA) and the United Cerebral Palsy Associations (UCPA) should organize a work group to determine the best mechanism for collecting and sharing new information on prevention and treatment of secondary conditions related to disabilities.

15. Include more representation of minorities and rural clients with these disabilities in future cerebral palsy-spina bifida conferences.

16. Reconvene this symposium in one to three years.

17. Form a work group from this symposium within six months to follow up on the recommendations outlined herein. Funding for such a continuation conference should be obtained by SBAA and UCPA.

18. The SBAA and UCPA should continue their united efforts.

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