JOURNAL
OF ADOLESCENT
HEALTH
1992;13:369-371
CONFERENCE PROCEEDINGS
GERBEN SINNEMA,
Ph.D.
Chronic illness and disability can have a major impact on adolescent development. Enhanced vulnerability owing to physical or psychological stress may complicate the transition to adulthood and cause serious problems (1). On the other hand, most youngsters and their families take up the challenge, positively using their sources of strength and resilience, and manage to cope successfully. Late adolescence and early adulthood are characterized by two important transitions: from family life to independent living and from education to employment. The chances for achieving these transitions are closely related to a positive social and emotional development earlier on. Even if conditions are favorable, going to live on one’s own and finding a job in the labor market often raise barriers, whether real or perceived. Surmounting these barriers requires joint efforts of the adolescent, his/her family, society, and health care. Youngsters with a chronic illness or disability rightly view independent living and economic participation as the cornerstones of social integration. The possibilities that are offered in these respects have a high symbolic value because they stand for welcome signals from society.
From the University Hospital for Children and Youth, Het Wilhelmina Kindeniekenhuis, Utrecht, The Netherlands.
Address reprint requests to. Gerben Sinnema, Ph.D., Wilhelmina Children’s Hospital, PO Box 18009.3501 CA Utrecht, TheNetherlands. This paper was presented at the 5th Congress of the International Association fir Adolescent Health, July 3-6, 1991, Montreux, Switzerland. Manuscript accepted ]anuary 9, 1992.
Youth With Disabilities or Chronic Illness Self-esteem is a major key to psychological wellbeing and social integration. For abled and disabled youth, the basic developmental areas from which self-esteem is derived are the same: body image, sexuality and intimacy, autonomy, intellectual and practical skills, and social relationships. There is an abundance of reports on how chronic illness and disability can be disruptive to these areas (2). Some conditions are associated with high risks. First, a relatively invisible handicap may cause ambiguity and ambivalence (e.g., young people with cystic fibrosis sometimes decide to conceal their condition when applying for a job). Meanwhile, they suffer fear of discovery should job demands turn oitt to be too exhaustive, or their condition exacerbate. In social relationships many young people with an invisible handicap do not mention their disease in order to avoid pity, misunderstanding, or rejection. A 19year-old girl with cystic fibrosis illustrated her ambivalent feelings this way: “You are always playing double. You act as if you’re healthy, while feeling ill. Yet, I’m as happy as can be when a boy in the pub asks me to join him to a dance. But then I think, ‘Oh, my God, suppose he wants to walk, that’s about half a mile, I never can make that. . . . ” Not only invisibility but also instability of a disease often leads to ambiguity. Switching back and forth from periods of acute illness to those of low or no disease activity, such as may be the case in rheumatic conditions, introduces much uncertainty for the youngster and for his environment. Unjustifiable doubts about the seriousness of the disease may be the result.
0 society for Adolescent Medicine, 1992 Published by Elsevier Science Publishing Co., Inc., 65 Avenue of the Americas, New York, NY 10010
369 1054439x/92/$5.00
370
SINNEMA
A third group of youngsters potentially at risk for misunderstandings are those with progressively deteriorating diseases and diminished life expectancies. It is often difficult to keep in mind that life implies hope, for which future planning, however modest this may be, is essential. A fourth risk group is made up of physical disabilities with brain involvement, such as cerebral palsy. In spite of all efforts to inform the public adequately, these young people may still be subjected to prejudices about mental backwardness.
Society The social and occupational integration of chronically ill or disabled young people into society can never be enforced by laws and regulations alone. Real integration ultimately depends on attitudes, inzlues of solidarity. In this respect, spired by human ‘L social institutions such as schools, youth work, and the scout movement often have (had) pioneering roles. Nevertheless, it is crucial that governments explicitly base their policy on the notion that disabled people must be enabled to use common public services and arrangements. Accessibility of public places, public transport, and communication facilities are simple, but essential consequences. In addition to the laws and regulations resulting from the basic policy, special facilities and services remain necessary to meet the needs of disabled youth. Although there are many regional and national differences with respect to availability and quality, most industrialized countries have such services, focusing on education, social integration, independent living, vocational training, and employment. Some possibilities and complications can be illustrated from the Dutch situation (3). As to independent living, official policy states that a physical handicap as such may never be an impediment to living in the community of one’s own choice. So, dwelling adaptation, as well as household help, can be arranged on an individual base, practically and financially. In addition, there are specific housing projects (32 in 1989) for (young) people with serious physical handicaps. Such a project consists of 12-15 houses with an assistance unit in the immediate vicinity. Assistance is supplied for dally routines, such as the provision of meals, bathing, and dressing. In order to facilitate economic participation, vocational guidance and training are offered by schools and rehabilitation centers. Regular employment offices have special placement consultants who can negotiate between the handicapped young person and a possible employer. In
JOURNAL OF ADOLESCENT HEALTH Vol. 13, No. 5
two special institutes for vocational training young people can live for 1-2 years to acquire professional skills (e.g., with respect to electronics, technical design, administration, and horticulture). The combined capacity of these institutes of about 200 trainees, however, is far from sufficient. Consequently, admission criteria are strict. Leaving the centers, about 70% of the trainees find employment, a great contrast to the estimated 20-35% employment rates of all disabled young adults. In the Netherlands, unemployment of people with disabilities has shown a rise since 1970. In 1989, the percentage of young people in the Netherlands getting disability benefits was threefold higher than that in Sweden and the United States, and 12 times the German figure. The Dutch situation is probably due to the relatively high financial level of benefits, lenient medical approvals of disability, and little social sup port to enter (or re-enter) the labor market. This “buying off the disabled” seems to be the cynical counterpart of the existing high economic productivity. Since last year, reducing the proliferation of disability allowances has become the number one topic of the political agenda.
Health Care Health professionals have unique opportunities to promote the social and occupational integration of disabled and chronically ill youth (4). Broadly, the mission of health care consists of three elements: 1) teaching the youngster how to use his/her potential and how to deal with the practical, emotional, and social consequences of the disability or illness; 2) informing the community, especially people in key positions, about all aspects of chronic illness and disability; and 33 promoting the creation of possibilities for social and economic participation. In this area, health-care providers can use their professional background to make the most of their civil duties. Supporting youth to cope with the consequences of disability and chronic illness must be embedded in the promotion of general coping skills. Young people should have effective tools in the areas of communication, negotiation, and handling conflicts. How to apply for a job can be practiced on a very concrete level. More specific to the disabled youth, the ability to focus on strengths rather than weaknesses is a powerful coping skill. In this way, the youngster can develop self-esteem through intellectual, creative and social skills, and physical activities. Furthermore, youngsters can be taught how to cope with frequently encountered social reactions to
July 1992
their illness or disabilitv, as well as when and how to give information about their condition. Guidance in the process of making realistic plans for education, vocational training, and a professional career is crucia?. Moreover, these adolescents need to be broadly informed about what is possible and feasibk for them in the labor market. Of course, young people ultimately make their own choices. On their way to full participation in society, disabled youths and youths with chronic illness must find the health professionals on their side, as dedicated allies inspired by commitment and solidarity.
ILLNESS dz DISABILITY; ECONOMIC PARTICIPATION
371
References Blum RW, ed. Youth 18:101-71.
with
disabilities.
Pediatrician
1991;
Sinnema G. Resilience among children with special health care needs and among their families. Pediatric Annals 1991; 20:483-6. Sinnema G, Kuis W. Health care, facilities and servl’ces for chronically ill or disabled adolescents in the Netherlands. Proceedings 5th European Regional Conference of Rehabilitation International, Dublin, 1990:442-5. Sinnema G, Van der Laag J, Kuis W. Psychological and social care for chronically ill adolescents: The role of the hospital. In: Bennett D, Williams M, eds. New Universals. Adolescent Health in a Time of Change. Curtin, Australia: Brolga Press, 1988.
OF ADOLESCENT
HEALTH
1992;13:369-371
CONFERENCE PROCEEDINGS
GERBEN SINNEMA,
Ph.D.
Chronic illness and disability can have a major impact on adolescent development. Enhanced vulnerability owing to physical or psychological stress may complicate the transition to adulthood and cause serious problems (1). On the other hand, most youngsters and their families take up the challenge, positively using their sources of strength and resilience, and manage to cope successfully. Late adolescence and early adulthood are characterized by two important transitions: from family life to independent living and from education to employment. The chances for achieving these transitions are closely related to a positive social and emotional development earlier on. Even if conditions are favorable, going to live on one’s own and finding a job in the labor market often raise barriers, whether real or perceived. Surmounting these barriers requires joint efforts of the adolescent, his/her family, society, and health care. Youngsters with a chronic illness or disability rightly view independent living and economic participation as the cornerstones of social integration. The possibilities that are offered in these respects have a high symbolic value because they stand for welcome signals from society.
From the University Hospital for Children and Youth, Het Wilhelmina Kindeniekenhuis, Utrecht, The Netherlands.
Address reprint requests to. Gerben Sinnema, Ph.D., Wilhelmina Children’s Hospital, PO Box 18009.3501 CA Utrecht, TheNetherlands. This paper was presented at the 5th Congress of the International Association fir Adolescent Health, July 3-6, 1991, Montreux, Switzerland. Manuscript accepted ]anuary 9, 1992.
Youth With Disabilities or Chronic Illness Self-esteem is a major key to psychological wellbeing and social integration. For abled and disabled youth, the basic developmental areas from which self-esteem is derived are the same: body image, sexuality and intimacy, autonomy, intellectual and practical skills, and social relationships. There is an abundance of reports on how chronic illness and disability can be disruptive to these areas (2). Some conditions are associated with high risks. First, a relatively invisible handicap may cause ambiguity and ambivalence (e.g., young people with cystic fibrosis sometimes decide to conceal their condition when applying for a job). Meanwhile, they suffer fear of discovery should job demands turn oitt to be too exhaustive, or their condition exacerbate. In social relationships many young people with an invisible handicap do not mention their disease in order to avoid pity, misunderstanding, or rejection. A 19year-old girl with cystic fibrosis illustrated her ambivalent feelings this way: “You are always playing double. You act as if you’re healthy, while feeling ill. Yet, I’m as happy as can be when a boy in the pub asks me to join him to a dance. But then I think, ‘Oh, my God, suppose he wants to walk, that’s about half a mile, I never can make that. . . . ” Not only invisibility but also instability of a disease often leads to ambiguity. Switching back and forth from periods of acute illness to those of low or no disease activity, such as may be the case in rheumatic conditions, introduces much uncertainty for the youngster and for his environment. Unjustifiable doubts about the seriousness of the disease may be the result.
0 society for Adolescent Medicine, 1992 Published by Elsevier Science Publishing Co., Inc., 65 Avenue of the Americas, New York, NY 10010
369 1054439x/92/$5.00
370
SINNEMA
A third group of youngsters potentially at risk for misunderstandings are those with progressively deteriorating diseases and diminished life expectancies. It is often difficult to keep in mind that life implies hope, for which future planning, however modest this may be, is essential. A fourth risk group is made up of physical disabilities with brain involvement, such as cerebral palsy. In spite of all efforts to inform the public adequately, these young people may still be subjected to prejudices about mental backwardness.
Society The social and occupational integration of chronically ill or disabled young people into society can never be enforced by laws and regulations alone. Real integration ultimately depends on attitudes, inzlues of solidarity. In this respect, spired by human ‘L social institutions such as schools, youth work, and the scout movement often have (had) pioneering roles. Nevertheless, it is crucial that governments explicitly base their policy on the notion that disabled people must be enabled to use common public services and arrangements. Accessibility of public places, public transport, and communication facilities are simple, but essential consequences. In addition to the laws and regulations resulting from the basic policy, special facilities and services remain necessary to meet the needs of disabled youth. Although there are many regional and national differences with respect to availability and quality, most industrialized countries have such services, focusing on education, social integration, independent living, vocational training, and employment. Some possibilities and complications can be illustrated from the Dutch situation (3). As to independent living, official policy states that a physical handicap as such may never be an impediment to living in the community of one’s own choice. So, dwelling adaptation, as well as household help, can be arranged on an individual base, practically and financially. In addition, there are specific housing projects (32 in 1989) for (young) people with serious physical handicaps. Such a project consists of 12-15 houses with an assistance unit in the immediate vicinity. Assistance is supplied for dally routines, such as the provision of meals, bathing, and dressing. In order to facilitate economic participation, vocational guidance and training are offered by schools and rehabilitation centers. Regular employment offices have special placement consultants who can negotiate between the handicapped young person and a possible employer. In
JOURNAL OF ADOLESCENT HEALTH Vol. 13, No. 5
two special institutes for vocational training young people can live for 1-2 years to acquire professional skills (e.g., with respect to electronics, technical design, administration, and horticulture). The combined capacity of these institutes of about 200 trainees, however, is far from sufficient. Consequently, admission criteria are strict. Leaving the centers, about 70% of the trainees find employment, a great contrast to the estimated 20-35% employment rates of all disabled young adults. In the Netherlands, unemployment of people with disabilities has shown a rise since 1970. In 1989, the percentage of young people in the Netherlands getting disability benefits was threefold higher than that in Sweden and the United States, and 12 times the German figure. The Dutch situation is probably due to the relatively high financial level of benefits, lenient medical approvals of disability, and little social sup port to enter (or re-enter) the labor market. This “buying off the disabled” seems to be the cynical counterpart of the existing high economic productivity. Since last year, reducing the proliferation of disability allowances has become the number one topic of the political agenda.
Health Care Health professionals have unique opportunities to promote the social and occupational integration of disabled and chronically ill youth (4). Broadly, the mission of health care consists of three elements: 1) teaching the youngster how to use his/her potential and how to deal with the practical, emotional, and social consequences of the disability or illness; 2) informing the community, especially people in key positions, about all aspects of chronic illness and disability; and 33 promoting the creation of possibilities for social and economic participation. In this area, health-care providers can use their professional background to make the most of their civil duties. Supporting youth to cope with the consequences of disability and chronic illness must be embedded in the promotion of general coping skills. Young people should have effective tools in the areas of communication, negotiation, and handling conflicts. How to apply for a job can be practiced on a very concrete level. More specific to the disabled youth, the ability to focus on strengths rather than weaknesses is a powerful coping skill. In this way, the youngster can develop self-esteem through intellectual, creative and social skills, and physical activities. Furthermore, youngsters can be taught how to cope with frequently encountered social reactions to
July 1992
their illness or disabilitv, as well as when and how to give information about their condition. Guidance in the process of making realistic plans for education, vocational training, and a professional career is crucia?. Moreover, these adolescents need to be broadly informed about what is possible and feasibk for them in the labor market. Of course, young people ultimately make their own choices. On their way to full participation in society, disabled youths and youths with chronic illness must find the health professionals on their side, as dedicated allies inspired by commitment and solidarity.
ILLNESS dz DISABILITY; ECONOMIC PARTICIPATION
371
References Blum RW, ed. Youth 18:101-71.
with
disabilities.
Pediatrician
1991;
Sinnema G. Resilience among children with special health care needs and among their families. Pediatric Annals 1991; 20:483-6. Sinnema G, Kuis W. Health care, facilities and servl’ces for chronically ill or disabled adolescents in the Netherlands. Proceedings 5th European Regional Conference of Rehabilitation International, Dublin, 1990:442-5. Sinnema G, Van der Laag J, Kuis W. Psychological and social care for chronically ill adolescents: The role of the hospital. In: Bennett D, Williams M, eds. New Universals. Adolescent Health in a Time of Change. Curtin, Australia: Brolga Press, 1988.
