Preventing Secondary
Conditions Associated with
Spina Bifida or Cerebral Palsy Symposium
February 17-19, 1994, Crystal City, Virginia
Recommendations
for Vocational and Educational Professionals
A SECONDARY condition is often defined as any problem that impedes the ability
of a person with a developmental disability to achieve what he or she wants. It
need not be a medically diagnosed condition, but it nevertheless affects the
quality of life, the independence, and the psychological well-being of the
person who is disabled. The most important point to remember about secondary
conditions is that, unlike the underlying disability itself, they are problems
that can be relieved or prevented. A further important point is that they are
experienced by whole families, and not just by the person with the disability.
BARRIERS TO THE SOLUTIONS
Lack of information is a pervasive problem: the persons with disabilities, their
families, and the educational and vocational professionals assisting them all
have great difficulty learning what's out there already, where it is, how to get
it, how to use it, and why. Vocational and educational professionals, moreover,
often do not have access to appropriate diagnostic and testing procedures and
programs. In-service and continuing education about secondary conditions for all
professionals providing services to persons with developmental disabilities is
badly needed.
Basic information about disability is needed for use in the development of curricula at all levels, in all subject fields, and in all settings. A most critical need is for information that relates directly to the preparation of persons with disabilities for employment. In fact, the gaps in our knowledge are huge.
Lack of integration and coordination between the education and vocational arena,
on the one hand, and the health care arena, on the other, is another fundamental
problem.
Finally, the
lack of useful models-persons to serve as role models, programs or procedures to
serve as models for effective action-were cited again and again as various
issues were raised and discussed.
RECOMMENDATIONS
The following recommendations are presented as priorities for action by
educators and by professionals in vocational training and placement. They fall
into three categories: recommendations regarding the training of educational and
vocational professionals; recommendations regarding educational and vocational
practice; and recommendations for research.
For Educational and Vocational Practice
1. Educational and vocational programs should be integrated as part of
multiservice centers that address educational issues, vocational issues,
secondary physical conditions, life skills, and other habilitation needs of
persons with developmental disabilities. These centers should embrace a paradigm
shift from evaluating the person's competencies to building his or her social
and vocational skills, activities, and wellness.
2. Schools should integrate prevocational and vocational training for young people with disabilities into their curriculum as early as the primary grades. Schools should provide competency-building vocational and habilitation experiences for these students that are based on reality and that are age appropriate. All education and training should prepare the person to be successful throughout the life span in employment, independent living, and in social relationships.
3. In designing both their overall approach and their approach to individuals, educational and vocational programs should routinely consider the impact of all the situations and settings confronting the person with a developmental disability, and not just on evaluations of the competencies and limitations of the person. Such "ergonomic assessment" would include evaluations of the person's life space, residences, school and work settings, driving and other available modes of transportation, and social and recreational resources.
4. Teachers and trainers should develop ways to assist all students to learn about the culture of disability and the ways our society limits people with disabilities by making them feel left out or socially outcast.
5. The
curriculum for persons with a developmental disability should include training
that assists him or her to learn how to manage and supervise a personal care
assistant, and how to act as an employer.
For Training
6. Despite the growing number of aware professionals and a developing field of
research, teachers and trainers in schools and in vocational programs generally
know little about cerebral palsy and spina bifida and the associated secondary
conditions that impede education and vocational training. The curriculum for
training all teachers and trainers should provide information on the following
factors, including the ways they interact to affect the ability of the person
with a developmental disability to be successful in an educational or vocational
program:
7. One of the factors that affects the success of the young person with a disability in school and at work is the availability and appropriate use of technology. Assistive and adaptive technology is necessary if the person is to overcome barriers to accessibility, learning, communication, and mobility. Examples are computers, augmentative communications devices, specialized wheelchairs, environmental control devices, job site modifications, and other measures that enable the person to easily access the work or school environment. The training of teachers and trainers in the uses of such technology should:
a. Focus on
new technological developments, their appropriate use with persons with cerebral
palsy or spina bifida, and ways to acquire and fund technology.
b. Evaluate the usefulness of adaptive and assistive equipment in educa-tional
and vocational settings, emphasizing quality, cost, and frequency of breakdowns.
c. Encourage the development of consumer-to-consumer training in pro-curing and
using assistive technology in schools, workplace, and com-munity.
d. Cover the proper use of seating and positioning devices for persons with
cerebral palsy or spina bifida. It is important that medical per-sonnel be aware
of how proper seating and positioning affects a person's total health; that
educational personnel know how seating affects a person's capacity to learn; and
that vocational personnel know how seating affects the person's vocational
opportunities and success.
8. Advocacy training for teachers and trainers should be focused on ways to help each person with a disability learn to reach his or her maximum potential. It should also focus on ways to make the person and the family aware of their rights under federal and state laws and to assist them in taking a lead role in this effort. It should also include a focus on ways to extend advocacy and awareness training to all community leaders so that the whole community is more aware of the barriers facing persons with disabilities.
9. Curriculum and training models must be developed for teachers, principals, physical therapists, speech therapists, nurses, and other school and voca-tional personnel. These should focus on methods for reducing the impact of secondary conditions, especially learning disabilities, on persons with cerebral palsy or spina bifida. In the educational or vocational setting, the learning disabilities secondary to these developmental disabilities can be the most disabling of all secondary conditions. Attention deficits, perceptual problems, and organizational problems impede a person's success in all life skills. When difficulty in learning is not given the highest priority, educational and training efforts can be rendered futile.
10. Although the focus of this working group was on professionals in education and vocational training, the group believed it was appropriate to consider others, such as parents and medical personnel, among the primary educators of young persons with disabilities, who also need training. Such training should include:
a. For
parents of children with cerebral palsy or spina bifida, an intro-duction to
primary and secondary conditions and a description of the current understanding
of the developmental course of these disabilities; advocacy skills to use when
dealing with educators and community leaders; parenting skills to encourage the
child toward independence and active problem solving; supportive networking; and
the management of financial benefits and insurance coverage.
b. For medical personnel, thorough coverage of the most up-to-date understanding
of secondary conditions and the ways they interfere with health-maintaining
behaviors, and approaches to health promotion.
11. A
training program for personal care assistants should be developed to help them
to understand the ways secondary conditions affect the person with cerebral
palsy or spina bifida and ways in which their functioning can reduce secondary
conditions and promote healthy behaviors. Primary consideration must be given to
assuring that the person with cerebral palsy or spina bifida is seen as a
competent and capable individual.
For Research
12. Multisite educational research is needed to determine the most effective
ways to educate and train persons with cerebral palsy or spina bifida, thus
optimally preparing them for life satisfaction and vocational achievement in the
face of learning disabilities. Research funding should be sought through federal
education, special education, and rehabilitation resources, as well as through
coalitions of consumer organizations. Educational research ini-tiatives should
address the following objectives:
a. Early
identification (i.e., during preschool years) of children with cerebral palsy or
spina bifida who are at risk for learning problems because of learning
disabilities.
b. Determining the best methods of teaching children with learning dis-abilities
secondary to cerebral palsy or spina bifida at all levels, from
early-intervention programs through secondary school.
c. Determining the most effective ways to integrate prevocational, vocational,
and life-skills training into the educational curriculum (e.g., when to begin
these efforts, which skills are high priorities).
13. Multisite vocational research is needed to explore the ways in which sec-ondary disabilities impede vocational success. Research models should integrate exploration of environmental factors (e.g., medical or physical challenges) and behavioral factors (e.g., learning disabilities, motivation, social skills). Funding should be sought from federal and state vocational training and rehabilitation agencies as well as through coalitions with private sector employers or foundations.
This research
needs to address the following questions:
a. What are the most prevalent obstacles to satisfying employment?
b. What training is needed to best prepare persons with cerebral palsy or spina
bifida for satisfying employment?
c. What resources in transportation, assistive technology, and personal
assistive services (on the job) are needed to most effectively facilitate
satisfying employment?
The Vocational and Educational Professionals Working Group, led by Gary Edwards
with assistance as recorder by Donna Zahra, consisted of Phyllis Agness,
Kathleen Barrett, Scott Campbell Brown, Jenny Durr, Cindy Koons, Jane Kovara,
Sue Leibold, James W. Loomis, Melinda Mast, Carol Mayeux, Dot Nary, Glen Niman,
Beth Priaulx, Robert Z. Segalman, David E. Shearer, Gary Smith, George Stone,
and Beverly Sutton.