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

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Encouraging Personal and Interpersonal Independence
Donald J. Lollar


IN THIS CONFERENCE we will focus first on the development of personal and interpersonal behaviors that encourage and build independence. This is an important goal for all adolescents and young adults, and that goal is no different for young adults with developmental disabilities. Emphasis on behavior, however, is only one part of the picture. Behaviors are what we do. How we feel about ourselves and life is also important. Both actions and what we think and feel are involved in the achievement of independence. The important first point, then, is that because independence is a part of healthy functioning, personal and interpersonal behaviors and feelings can directly contribute to or detract from one's ability to live a constructive, healthy life.

Secondary conditions are those that occur as a result of a primary condition. We are concerned here, specifically, with those arising from cerebral palsy or spina bifida (or hydrocephalus). Implicit in this symposium is the notion that because these secondary conditions are often barriers to mature functioning, every attempt should be made to prevent them. I believe most of us can agree that positive social and emotional behaviors are an integral part of what we want young adults with these developmental disabilities to achieve. In this presentation, then, I first will identify conditions secondary to cerebral palsy and spina bifida that undermine a person's progress toward independence.

For each type of secondary condition, then, I describe what we know and what we currently do to reduce the impact of these conditions. Finally, I suggest other ways to reduce the occurrence and impact of these factors.

INDEPENDENCE

First, however, I want to talk about independence. In everyday language, independence for young adults is associated with living away from family, having enough money to pay bills, and coming and going when, where, and with whom one wishes. As we also know, however, this physical independence in no way equates with maturity or emotional independence. For all young adults seeking independence, the goal should be the ability to make positive choices and decisions on the basis of what you believe is best for you. Although it is generally easier to achieve emotional independence when physically away from home, leaving home is not required.

I know many young adults (and old adults, for that matter), who depend on their parents for making choices and decisions. Whether the young person does exactly what the parent wants or exactly the opposite of what the parent suggests, he or she is still emotionally dependent if the parents' standards and judgments are the guideline. The term self-determination captures the important cognitive and emotional aspects of this portion of independence (Schloss, Alper, & Jayne, 1993; Ward, 1988). It is important here to clarify that physical independence is a worthy goal, but without emotional independence, such apparently independent behaviors are hollow.

SECONDARY CONDITIONS THAT UNDERMINE INDEPENDENCE

What are these secondary conditions that hinder independence among young adults with cerebral palsy or spina bifida? The conditions posing the most direct threat fall into four categories: learning problems, problems with family adjust-ment, problems with social and sexual relations, and depression.

Learning Problems
Learning problems are often associated with cerebral palsy and spina bifida. While it may be debated whether the neurologic conditions associated with cerebral palsy or spina bifida are primary conditions, co-primary conditions, associated conditions, or secondary conditions, there is no question that learning problems make it more difficult for a young person to develop helpful personal and interpersonal behaviors.

The learning problem may take the form of a generalized intellectual impairment. But learning problems may also affect young people with average or superior intelligence (Hurley & Sovner, 1987; Lollar, 1991; Wills, 1993). It may be impossible to change the neurologic deficits, but it is possible to help young people use their intellectual and cognitive strengths to offset the effects of any learning difficulties. Learning problems impede independence in several areas-not only in school performance, but also in learning personal care routines, knowing how to get around in the community, and making friends.

What can we do? First, young adults and families, along with professionals in educational, vocational, and health care settings, must help the young person identify learning problems and strengths. Then, we must work together to identify how this profile of strengths and deficits can be used so that the person can learn the skills and develop the emotional resources that promote self-determination and independence. School and vocational professionals need to look for learning problems so that they can make placements and intervene appropriately. Too often young adults are labeled lazy or unmotivated when in fact they are running into a learning problem that attacks their learning of skills and contributes to a poor self-concept and low self-esteem (Lollar, 1993).

Schloss, Alper, and Jayne (1993) have provided a framework for teaching self-determination skills in school. The model provides a framework for giving young adults progressively more opportunities for choice in naturally occurring settings. It includes successive prompts that are determined by the response of the young person to current situations. This model would be appropriate to translate for other professionals and parents so that training in making choices and decisions can be coordinated across settings.

Also, research is needed to figure out which strategies are most effective in different settings, various situations, and with young adults showing various profiles of learning strengths and deficits. This type of research must pull results from multiple settings, not from single settings, so that we can learn how to assess the young person's ability to generalize skills of making choices and decisions.

Problems with Family Adjustment
Another set of secondary conditions that arise from the presence of cerebral palsy or spina bifida concerns family adjustment. The amount of stress experienced by a family is increased by the presence of any disability in a family member. Families don't necessarily fall apart emotionally, but there is significant pressure resulting from disability. Some families gain strength in the face of such pressure. Research has found that families of children with spina bifida, for example, show greater emphasis on religious belief as the young people grow older (Lollar & Reinoehl, 1988). Stress can be used positively. Yet the professional literature, as well as clinical experience, suggests that negative patterns are also seen in families of young adults with developmental disabilities.

Parents, more often moms, are very involved with and invested in their youngsters-often so much so that personal care, as well as socialization and decision making, are difficult for the young adult to complete alone-even when physical and cognitive skills are sufficient for independent functioning. Professionals often call this enmeshment. This enmeshment begins as a normal response to a difficult situation-caring for a little one with a developmental disability. As the youngster develops, however, parents must encourage him or her to meet goals of independence consistent with advancing developmental and functional levels. This is often difficult for parents to do.

The tendency is for parents to be even more protective of daughters than of sons with disabilities. Parents also often have subtly lower expectations for daughters than for sons and are more likely to discourage community living and self-sufficiency for a disabled daughter (National Information Center for Children and Youth with Handicaps, 1990).

Some parents, even those who may have previously been overinvolved with a child, feel a lack of emotional attachment to their young adult. They despair of their young person's ever attaining appropriate physical or emotional separation from them. The personal care needs of young adults with spina bifida and cerebral palsy and the communication difficulties of young adults with cerebral palsy, factors with which parents must contend chronically, only complicate an already difficult situation. Young people and their families in these situations often feel alienated, with neither feeling the support from the other. These emotional responses by the parents, and at times siblings, undermine the young adult's development of personal and interpersonal behaviors that would lead toward self-determination and independence. The prevalence with which they occur in conjunction with developmental disability qualify them as secondary conditions.

It has become conventional wisdom among professionals that a young person's adjustment to a disability is significantly affected by the parents' adjustment. Wallander, Varni, Babani, and Banis (1989), in a study of family resources as factors in the adjustment of chronically ill and disabled children, concluded that psychological resources in the family contribute uniquely to the child's adjustment. If parents have additional stressors, such as those associated with post-traumatic stress related to the Vietnam war, there may be even more stress surrounding the child's condition.

The implication is that a family needs a great deal of support, guidance, and counsel in order to assist their young disabled person toward independence. Of course, such support for the family should start as early as possible, for it becomes more difficult to be effective as the young person gets older. Even long-held patterns, however, can be challenged and amended with help from other families and from professionals and organizations dedicated to helping these families.

What can we do? Programs that provide young people and their families the opportunity to be physically separate while helping the young person learn, use, and feel comfortable with making choices and decisions are crucial. Transitional living or independent living programs are useful, but they often falter because of funding problems or are effective only for the short term, with little follow-up in the community. Support from every level of government should encourage these programs from preschool years through adulthood. These programs should include work with parents in groups for mutual support, and with brothers and sisters.

A program of sibling education and support by Craft and her colleagues in Iowa City (Craft, Lakin, Oppliger, & Clancy, 1990) has shown that brothers and sisters can be helpful not only as role models but also as change agents in building independent functioning. In a real way, the emotional responses of brothers and sisters constitute a secondary condition-a condition not existing except for the presence of the primary disability. These programs should be instituted before adolescence and continue through young adulthood.

Problems with Social Relationships and Sexuality
A third cluster of secondary conditions associated with spina bifida or cerebral palsy is the difficulty that the young adults have in social relationships and sexuality. It appears that during the preschool years children are unaware of or unconcerned about differences among themselves. Usually, cognitive growth in early elementary school allows children to see differences between themselves and others, ask questions, and get poor information about all sorts of differences from adults. As time passes, however, the social lives of children with disabilities begin to change. Differences become more apparent, and youngsters are asked over less, invited to parties less, included in school conversations less. Naturally, they feel left out more. Parents are dying inside for their child and often try to become the socialization route for their youngster.

By the time he or she reaches adolescence, the young person has lost valuable opportunities to learn how to interact comfortably with other adolescents; he or she is unable to discuss similarities, much less differences. Social activities become limited to the family circle, at home or on family outings. A study by King, Shultz, Steel, and Gilpin (1993) indicates that social confidence is a predictor of independence and persistence in adolescents with disabilities. It is clear that this social isolation cultivated unwittingly by loving parents and insensitive communities does not help young people feel socially adept.

What can we do? Of course, young people whose mobility or speech is impaired, along with young people with any impairment, will bear the burden of others' rigidity and prejudice. To challenge this secondary condition, young people need to believe in their own strengths so that discrimination will not overcome them. Inclusion educationally can help them only if their peers are also helped to confront the myths and misunderstandings about differences. Moreover, teachers must be trained to accept these differences in the classroom.

Many years ago when mainstreaming was the focus, I participated in a training project run by a local school system in Georgia. This system designed a plan whereby every teacher would go through a training experience of several days. The focus of the training was individualization of instruction and acceptance of differences among children. Before and after the training, we would measure the teachers' comfort with accepting children with various levels of disability into the classroom; we also measured the degree to which they could implement the principles they'd been taught about individualizing instruction.

Results of the project indicated that the teachers had become quite competent with principles of individualization of instruction but no more comfortable (actually, a little less comfortable) with accepting disabled youngsters in the classroom. Clearly, we must help frontline adults be more accepting if socialization is to occur in the most naturally occurring setting for children and adolescents.

Among all young people, few same-sex friendships endure through adolescence, and opposite-sex relationships are even less developed. Sexuality is either repressed or emerges in ways that are seen as immature or inappropriate. Specialists suggest that socialization is the key to the young person's development of a healthy sexuality (Joseph, 1991; National Information Center for Children and Youth with Handicaps, 1992; Sloan, 1993). Beyond helping young adults with cerebral palsy or spina bifida to develop general social skills, therefore, families and professionals must acknowledge that these young adults are sexual beings with sexual needs and sexual questions. It is still a common assumption that young people with disabilities do not have sexual needs or drives. We must continue to challenge this assumption.

What can we do? Besides challenging the erroneous assumptions, we can attend to those who have developed some new approaches to solutions. Ziff (1986) describes a symbolic sexual vocabulary designed to help young adults who are nonverbal to communicate about sexuality. Sloan (1993) has developed a program for educating parents and young adults with developmental disabilities about their sexual functioning and potential.

The program helps parents and young people talk about sexuality and sex; discussions include dating and masturbation, which are particularly important if the young person has not had social opportunities for learning from peers. These are only the beginning steps in the process of minimizing or eliminating the extreme negative impact of problems with socialization and sexuality on the lives of young people with cerebral palsy or spina bifida.

Depression
Depression is the most frequent secondary condition associated with the emotional status of young adults with cerebral palsy or spina bifida. In the 1989 report of the Adult Needs Task Force of the Spina Bifida Association of America, active depression was the only nonphysical secondary condition mentioned (Spina Bifida Association of America, 1989). Depression is variously associated with anger turned inward, learned helplessness, difficulty accepting the impairment, or low self-esteem. It is no wonder that a disabled young adult could feel anger, helplessness, and low self-esteem.

Frustration with communicating, establishing and maintaining personal assistance services, coping with difficult accessibility, finding few opportunities for making decisions or choices are but a few of the factors that contribute to depression. A person's emotional resources are drained by the constant fight for fair and appropriate services, further contributing to depression. A depressed state may also contribute to the inconsistent personal care that we often see in young adults who are disabled and that leads to other physical and medical secondary conditions. Their depression is sometimes accompanied by acting out in the family, acting out sexually, and alcohol and drug use.

What can we do? Depression is an internal emotional condition, but it cannot be understood outside the environmental crucible in which it develops. The conditions that generate and maintain depression are always present in the culture. However, family members and school, vocational, and health professionals can encourage rather than discourage young people, especially young adults. Dreikurs (1964) has suggested that people are born with courage; the task of helpers is to ENcourage, rather than DIScourage, young folks.

We DIScourage by doing for someone what he or she can do independently. We ENcourage when we help someone learn what he or she needs to do. Of course, these are old truisms, but we must not disregard them, for they are particularly crucial when old habits encouraging dependence have become the norm. Resnick and Hutton (1987) concluded that disabled young people's self-concept is positively influenced by participation in normal daily activities and socialization. Participation in normal daily activities helps young people learn to feel their own courage, not helpless. Having friends helps young people complete the important develop-mental task of being part of a group.

Depression generated by anger turned inward can be reduced by encouraging young people to stand for themselves when necessary. Depression generated by learned helplessness can be reduced as young people do for themselves what they can. Parents and brothers and sisters and teachers can allow a young person's courage to emerge when disagreements (anger) occur, demonstrating that it's okay to be assertive.

A LOOK AHEAD

The four secondary conditions I have described are often at the core of the other secondary conditions that will be addressed during this conference. The recommendations that we generate will be important for young adults, families, professionals, advocates, and governmental planners and researchers. We must recognize the serious implications that result from these secondary conditions. They strike at the heart of self-respect and movement toward a better quality of life. Programs related to personal assistance services, vocational exploration, training, and placement are already begun.

Advocates and program planners should find ways to coordinate the resources, personnel, and services for individuals and their families to access. Single-entry centers, not unlike the comprehensive mental health center models of the 1960s, could provide this coordination of resources. These centers could cross lines of impairment and focus on the promotion of health behaviors and the prevention of debilitating secondary conditions.

Before finishing, I would like to comment on measurement as it relates to these secondary conditions. For those concerned with policy and research matters, social and emotional measures are always problematic. Instruments measuring the characteristics or behaviors of individual persons are difficult enough, but measures of environmental interaction related to families, socialization, work, or housing are very difficult, and therefore scarce.

It is clear, however, that even given the measurement problems, psychosocial factors are the greatest statistical contributors to the presence and intensity of secondary conditions and outcomes generally (Ravesloot, Seekins, & Walsh, in press; Whiteneck, 1992). Priority should be placed on integrating the more established person-oriented instruments with yet-to-be-constructed measures of the interaction of the individual with the environment.

There is still much left to dream, conceptualize, plan, and make happen. The working groups will help clarify the dreams, concepts, and plans, and they will provide direction for strategies to reduce, even prevent, these secondary conditions.

REFERENCES

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