Krzysztof Liszcz is training the mothers of children with cerebral palsy to provide improved care for their children in a home-based program that is spreading throughout Poland. His program reduces state expenditures while certifying the mothers so that they can earn money with their new skills.
The New Idea
Krzysztof Liszcz is a doctor who is introducing new methods of training and support for the mothers of children with cerebral palsy. His techniques enable mothers to accelerate the development of their children's cognitive and motor skills while working with them in the home. Krzysztof's approach allows the children to remain with their families instead of being institutionalized, which is the norm in Poland, and it halves state expenditures while opening up another avenue of care that is more stimulating for the children and includes consideration of the needs of their families, especially their mothers.Krzysztof recognizes that financial hardship often accompanies the other challenges that the parents of a child with special needs face, as a result of the need for one parent, usually the mother, to do unremunerated care work unremunerated in the home. He has built into his program a process that restructures the mothers' economic situation by providing them with certification as para-professional therapists when they complete his training. They can thus earn money while they care for children; in addition to their salaries, they are provided with insurance and a pension after twenty years.
In Poland, four of every 1,000 children are born with some form of brain damage, often cerebral palsy; this is a higher rate than is found in most other European countries. For example, the comparable statistic for Sweden is 1.5 out of every 1,000 children. The usual treatment pattern removes the child from family and places him or her in an institution. Typically, these institutions are extremely large, bureaucratic, underfunded and understaffed. In this atmosphere, it is nearly impossible for the children to realize their full potential simply because they are not given the specialized care and attention that they need.
Families who do not choose to institutionalize their brain-damaged children face many pressures, including the loneliness of caring for children who are not accepted as part of society. Families often hide such children away from others; they feel stigmatized and overwhelmed, and experience a great deal of economic and emotional strain. Usually mothers shoulder the bulk of responsibility for care, at considerable long-term financial cost: because she works at home, unpaid, such a mother not only forgoes salaried work but also loses her social security benefits. Often the situation pushes a family into poverty; some institutionalize their children out of financial necessity, even if they know that they could provide better care at home. Such pressures may produce ripple effects including divorce, depression and alcoholism. Under the best of circumstances, the state provides three 40-minute physical therapy sessions per week for a child with cerebral palsy who lives at home. The therapy is aimed at achieving very limited goals and does not include or train the parents.
Krzysztof left his career in government medical services and chose instead to use a citizens' organization as the vehicle to spread his ideas throughout Poland. He founded an association of parents and consultants through which he executes strategies that can be grouped into training and support services, recruitment of volunteers; and education of the public. At the core of his program are regional Self-Support Circles that bring together families, professionals and volunteers who collaborate to provide each groupof families with counseling, peer support, child care and training. This system is designed to provide options and tools to parents that make them independent of the traditional institutional medical care system.
When his project began it had a membership of 50 families. The program grew very quickly and drew participants from all over Poland and Lithuania. By 1995, Krzysztof had launched eight Self-Support Circles, and he plans to expand his program to reach every corner of Poland. By mid-1997 he had extended three-year training programs to nearly 50 mothers who had earned the status of para-professional therapists, equipped to earn money for their home-based care of children and to augment the scanty state services for home treatment. The mothers are trained to launch new Support Circles, thus extending Krzysztof's impact.
Krzysztof's public outreach efforts are a critical component of his work. He has begun an innovative program of recruiting young people from high risk environments such as alcoholic households, and training them to work with special-needs children in controlled settings, such as special camps. Krzysztof hopes that this experience will help these young people develop better parenting skills in the future.
As part of his commitment to educate the public about disabilities and dispel myths about handicapped people as useless burdens to society, Krzysztof has published several books, pamphlets and articles for magazines about caring for children with special needs. Krzysztof is often called upon by the media to discuss his views on the disabled.
Raised by socially active parents who were involved in many charities, Krzysztof has a long history of initiating various programs and activities. As a student, he founded several scientific and cultural organizations. After becoming a doctor, he launched several innovative programs to help chemically dependent clients and their families that involved the families in the treatment of their loved one.
He was active in the Solidarity movement and was fired from his job and arrested during martial law in the early 1980s. Currently he is active in his church's family support program. Krzysztof went through the experience of adopting a child with cerebral palsy. Since that time, he has directed the bulk of his energy to creating alternative services for families with similar children.