Preventing Secondary Conditions Associated with�Spina Bifida or Cerebral Palsy. February 17-19, 1994, Crystal City, Virginia.
Proceedings and Recommendations of a Symposium. A Centers for Disease Control and Prevention Publication.
Editor: Donald J. Lollar, Ed.D.
FORWARD
I APPRECIATE the invitation from the Spina Bifida Association of America and the United Cerebral Palsy Associations, Inc. to write the Foreword for the Proceedings of this important conference. I was moved by the letters of appreciation that came from participants after the conference.�
These proceedings are a major contribution. Conference participants identified conditions that are likely to occur over time in persons with spina bifida or cerebral palsy. Some of these secondary conditions can be prevented. These proceedings summarize major preventive interventions possible for persons with these disabling conditions and provide evidence that prospective activities are an integral part of habilitation and rehabilitation.�
I am impressed that the conference format provided a balanced input from young adults with spina bifida or cerebral palsy, parents and families of children with these disabling conditions, and medical and rehabilitative service professionals. It is important that persons impacted by recommendations be involved early in their development.�
Conference participants have not only considered preventable medical secondary conditions but have also dealt with secondary conditions from a broader perspective. Specifically, preventable conditions were addressed that are related to functional activities such as walking and communication, and that are related to societal roles such as employment and independent living. In public health we must be concerned not only with disease and injury but also with their consequences.�
Recommendations in these proceedings have been written for the specific groups that have a vested interest in their implementation-young adults who have spina bifida or cerebral palsy, as well as parents who have children with these disabling conditions. Recommendations are also directed to the two sponsoring advocacy groups, as well as to professionals in special education, rehabilitation, and medicine. Each group has a unique set of prevention opportunities and can initiate preventive intervention from a different perspective.�
This conference has served as an important forum for those of us in federal agencies who are involved in disability research. Representatives from many different agencies participated and had the opportunity to better understand each others' programs. Understanding our programs through the eyes of the "consumer" of our services was especially enlightening. This input is one of the major sources of feedback we need for our programs at CDC in applied prevention research.�
The conference recommendations outline a plan to be implemented. There is a mix of readily achievable tasks with some very demanding ones. May your successes in the short term generate the hope and incentives needed to meet the challenges in the future.�
Godfrey P. Oakley, Jr., M.D., Director
Division of Birth Defects and Developmental Disabilities
National Center for Environmental Health, Centers for Disease Control and Prevention
EXECUTIVE SUMMARY�
THIS SYMPOSIUM from beginning to end was committed to providing new energy, conceptual vision, and behavioral directions to the individuals, families, and professionals whose lives are influenced by the developmental disabilities of spina bifida or cerebral palsy. The energy and enthusiasm generated has made it clear to the young people, families, and professionals that new alliances should be formed, renewed commitment made, and fresh directives begun. The opportunity is present because of the breadth of the community represented at the conference: participants included young people and families from across the country, diverse professional disciplines, two major organizations focusing on developmental disabilities, and several federal agencies.�
Two overarching mandates emerged from the speakers and working groups. First, services for persons with disabilities must be covered throughout their lives as a part of any health care reform passed by Congress. Second, services should be more centralized so that individuals and families have greater access to services that can prevent secondary conditions, and service providers can more helpfully communicate with families and each other.�
Overview
Early in 1992 the Centers for Disease Control and Prevention (CDC) began an initiative to follow its historic first conference on preventing the secondary conditions of spinal cord injuries with one focusing on developmental disabilities. The Spina Bifida Association of America (SBAA) agreed to take the lead and discussed the possibility of collaboration with United Cerebral Palsy Associations, Inc. (UCPA). They immediately joined forces to develop such a conference. In October 1992 CDC assembled 30 people in a planning session to work out the conceptual framework, content, speakers, and logistics. Included were representatives of CDC, SBAA, UCPA, persons with spina bifida or cerebral palsy, and parents of young adults with spina bifida or cerebral palsy. In addition, staff members from the National Center for Medical Rehabilitation Research and the National Institute of Neurological Diseases and Stroke were also intimately involved in planning, as were professionals in the field. It was clear from the beginning that the implementation would require significant communication and coordination.
Three general issues were important to the planners. First, they agreed that it was important to address the secondary conditions common to spina bifida and cerebral palsy, while also identifying the differences. They decided to use young adults as the group for primary emphasis, to keep work of the symposium focused. Second, they agreed that issues beyond the strictly medical ones be discussed, under the assumption not only that there are nonmedical secondary conditions but also that other physical, social, and emotional factors influence the etiology and maintenance of all secondary conditions. Third, they agreed that it was critical that all parties involved in prevention interventions be involved. This included young adults, parents, professionals of various disciplines, advocates, and individuals involved with policy and research. The goal of the symposium, then, would be to bring together representatives from these groups, provide a common framework through presentations, and allow them to work together to generate recommendations. The recommendations would be published and used as guidelines for preventing the secondary conditions identified.
The Conference
On February 17-19, 1994, the symposium was held in Crystal City, Virginia. Each day began with invited presentations in a specific area of concern- Interpersonal Behaviors, Mobility, and Physical Integrity. The presentations focused on identifying the secondary conditions associated with each area of concern, consolidating current knowledge regarding intervention and then providing an overview of suggested directions for intervention. Attendees then divided into separate working groups to generate recommendations. These proceedings include the papers presented during the initial part of each day plus the keynote address and the recommendations from the working groups.�
Two presentations began the conference - a panel of young adults with bifida or cerebral palsy, and a paper providing a framework for promoting health among persons with disabilities. Throughout the proceedings are interspersed observations of the panel about their experiences. They set the tone for the conference and helped define secondary conditions in the context of developmental stages. Dr. Donald Patrick presented a model for "discussing opportunities for health promotion and prevention activities." This framework describes various planes composing a person's life and the points at which intervention could occur. Dr. Michael Marge emphasized promoting healthy behaviors to prevent secondary conditions in his keynote address. His strong recommendation
For health care reform that would include "continuous, coordinated, and comprehensive services for persons with severe disabilities managed through a single port of entry" was echoed throughout the conference, and this emerged as a key directive for preventing secondary conditions.�
The focus for the first conference day was developing personal and interpersonal behaviors that encourage independence. The speakers addressed secondary conditions such as depression, family stress, and social and sexual problems, and they emphasized ways to facilitate self-determination. Ways to utilize employment and personal assistance services to encourage independence and prevent secondary conditions were discussed.�
Attaining and retaining mobility was the emphasis of the second conference day. Speakers addressed clinical and functional issues associated with mobility, including pain, osteoporosis, weakness, and spasticity. Personal choices and lifestyle values related to exercise and activity level were important aspects of discussion.�
Maintaining body systems integrity and function was the focus of the final day. Secondary conditions related to skin breakdown and to urologic, gastrointestinal, respiratory, and reproductive issues were outlined. Using a habilitation rather than a rehabilitation model, speakers emphasized health care values, nutrition, fitness, and continence management.�
At the end of day, the five working groups convened to review the presentation and answer two questions -What are the primary secondary conditions that need to be addressed? and What can be done to prevent or decrease them? Each group, composed of about 20 people, represented one of the five constituencies invited-young adults, parents, health care professionals, vocational and educational professionals, and advocates and policy makers. Each group had representatives of all five constituencies, but each focused on the concerns of only one of these, emphasizing what they could do to prevent secondary conditions. The reports included in these proceedings represent intense work by the participants in these groups, who generated relevant, practical recommendations to reduce the influence of secondary conditions in the lives of young adults with spina bifida or cerebral palsy and their families.�
The working group reports were completed independently by each group, and the content of each report represents that group's consensus about what secondary conditions are and what can be done by the constituency it represented. This emerging field continues to change, including the definitions. Conditions that were "secondary disabilities" (e.g., the initial conference on spinal cord injuries) are currently "secondary conditions." Even in these proceedings, conditions, conditions may be referred to as "associated conditions" or co-primary conditions." Suffice it to say , the conditions are real, and the reports address the conditions. Each report is meant to be read independently by the group to which it is addressed, and no one report -or even all the reports collectively -is intended to stand alone. Each group made some recommendations for research, from the standpoint of the particular group. Subsequently, the research work group, composed of researchers from universities or government agencies who participated in one of the five other groups, met to define a framework for setting priorities.�
Several recommendations appear in most of the reports. First, it is have clear that we have inadequate knowledge about numerous aspects of secondary conditions, beyond the varying definitions, including risk factors for the incidence of conditions, how best to intervene, and how to deliver services. In addition, the knowledge we do have is not disseminated to those who can use it-from the young adults who do not know about services, to physicians who are not familiar with latex allergy responses. There was a clear call for more in service and continuing education for all professionals who provide services to young people and adults with spina bifida or cerebral palsy. Another aspect of the inadequacy of our knowledge is the fact that services are often geared toward those most able to access those services. Concern was raised about the need for service models to be inclusive, by race, ethnicity, socioeconomic status, geography (for example, rural residents), education, and family make-up.�
Another theme was the need to use what we already know about prevention interventions that do not require long-term research. For example, young people can be encouraged early on to drink sufficient water to aid bladder and bowel health. Encouraging parents to maintain a journal or life record of major events, developmental milestones, surgeries, and so forth, to assist professionals and families, and to pass on to the young person as they become more self-determining, was also stressed. Teaching and modeling advocacy for oneself, including training in the intent and content of the Americans with Disabilities Act (ADA) and other regulations, emerged as another major theme.�
Beyond the family, significant attention was paid to the ways in which the community attitudes and environment create a handicapping setting for the young person with a disability and for his or her family. The need to evaluate these barriers, acknowledge them, and work for their removal is reflected throughout the reports. The need for governmental agency leadership and funding is pivotal.�
Finally, participants agreed that it is critically important that the Spina Bifida Association of American, United Cerebral Palsy Associations, Inc., and other advocacy organizations maintain a high profile in disseminating the product of this symposium and work to encourage implementation at all possible points. Strong direction was given for periodic monitoring of the progress toward implementation of the recommendations. Specifically, participants asked that a follow-up symposium be convened in two to three years.�
This symposium emphasized the prevention of secondary conditions among young adults. Future conferences may need to address prevention through early intervention at the preschool level, support of families with youngsters who have developmental disabilities, vocational and educational interventions, issues related to transitional and group living alternatives, and issues of aging.
Donald J. Lollar Ed.D.