Supporting families in keeping disabled family members at home: Swedish policy instruments

In most countries the importance of the family as a form of social insurance is declining. As the extended family gradually disappears with industrialization and the labor market's demands on geographical mobility, as divorce rates go up and single parents become increasingly common, the ability of the family to provide mutual aid in everyday life is diminishing. One of the results is that families have fewer resources left for members with special needs such as disabled children or old parents. If there is no place for these groups in the family, where can they turn to?

In industrialized countries there has been a long history of putting disabled persons, old and young, into institutions. This tradition is increasingly questioned by organizations of persons with disabilities and researchers. Their contention is that institutions are wasteful both in terms of human and financial capital. They severely limit personal growth and life opportunities and tend to be costly relative to the low level of quality of life they provide. Rather than using public funds to maintain institutions, it is argued, resources should be made available to support families with disabled children or old parents.

As developing countries approach the demographic situation of industrialized countries, it is not always easy to avoid the mistakes of the so-called developed countries. In the following I will attempt to outline how families can be supported in order to avoid the institutionalization of disbled children and old persons. As an example, Swedish social policy in this area will be described.

Sweden is not a paradise - neither for disabled nor for non-disabled citizens. As in other countries, disabled people are still second class citizens there. As a group, they are less educated, have lower incomes, are less likely to work or to get married, as recent government statistics show. But the contention is made here that some Swedish social policy measures are effective in improving the living conditions and the status of persons with extensive disabilities.

In the metropolitan areas of Sweden, over one third of all children grow up with only one parent. With a female labor market participation of nearly 80% child care is a common problem - not only for single parents - for which common solutions have been developed. By law, it is the local governments' responsibility to offer child care for children from the age of a few months up to 14 years during the times of the day when they are not in school and the parent(s) not at home. In some communities some child care centers take children even during night hours when the parent(s) work night shift. The lion's share of the costs of these services is born by the local governments through taxes; parents contribute with a modest fee per child. Child care centers are open also to children with disabilities. For children with intellectual disabilities or deafness, for example, it is recognized that additional resources in the form of trained staff are needed. At least one child care center in each community will have such special resources. All municipal child care centers are integrated and accessible: children with and without disabilities are welcome. The situation for public schools is similar. Children with disabilities commute to child care centers or school by cabs paid for by the municipality.

All parents get a child allowance from the National Social Insurance. Social Insurance pays also salaries during an employee's sick leave. Parents can take such paid sick leaves also for days when their children are sick. Social Insurance, that also covers health care including the provision of assistive devices such as wheelchairs, is funded by taxes and all payments are made regardless of the recipients' income. For children with multiple disabilities who need more than 20 hours of care over and above what non-disabled children of the same age might need Social Insuance pays a monthly sum that covers the costs of a paid worker for the amount of hours needed for which the child has been assessed by the Social Insurance's social worker. In other words, if it has been determined that a child needs, say, 45 hours a week of assistance on account of its disability, Social Insurance will pay the parents a monthly amount which corresponds to the going market wage for these hours including all social insurances and other payments that law and labor union contracts oblige the employer to pay. The parents can hire anybody they find fit for that purpose including themselves. In many families one parent chooses to give up work outside the home and assist the child instead. Other parents rather continue with their career and employ outside persons for this purpose. There is also the possibility to combine these solutions and stay with the child part of the time and employ somebody else take for the remaing hours. The aim of the policy is to give parents a choice.

Social Insurance provides the payments for personal assistance also to adults with extensive disabilities up to the age of 65. These funds allow persons with extensive disabilities to hire personal assistants who will enable them to live on their own - with or without their family. The choice is theirs. Many persons with extensive disabilities have educated themselves in a profession, obtained employment and started families of their own. In most cases, their achievements would have been impossible without personal assistance. In countries without personal assistance services these individuals would have been dependent on their parents or would have vegetated in institutions. But even the best parents get older and when they get too weak to help their adult children, the only solution is to commit them to an institution.

Individuals working as personal ssistants in Sweden, typically, do not have special training in this field, since their jobs entail non-medical tasks, such as helping the user to get dressed, to bathe, go to the toilet, go to bed, cook, clean and do other household work, assist with transportation and help him or her at work or accompany him around town. For sight-impaired persons assistants will function as readers. For persons with intellectual disabilities, assistants will provide cognitive guidance and structure. Often, assistants are students who need part-time work, mothers of small children who do not want to work full-time or retired persons who have some spare time. Usually the user of such services will have several persons employed in order to be flexible enough for workers' need of free time, vacations, sick leaves and other emergencies. Having more than one personal assistant will also help to decrease dependence on the person providing these important services.

More than half of all households in the metropolitan areas of Sweden consist of single persons - mainly older people. Often, their relatives live elsewhere or are unable to visit them regularly. If such individuals acquire a disability which makes it difficult or impossible for them to manage their daily lives by themselves, their only recourse would be an old-age home - unless there exist community based services. In Sweden, the provision of assistance services to older persons is the legal responsibility of local governments. These services are designed to assist older disabled persons - mainly single individuls - in their daily lives in their homes so that they do not need to move to institutions. Assistants are employed by the local government's social sevices office and will typically assist with meal preparation, other household chores and personal hygiene, if needed. There are also paramedics employed by this office who will make periodic house calls to assist older persons with taking medication, shots and similar tasks.

In Sweden, as in other societies, a disabled family member is still likely to represent a burden on the family. Yet the argument can be made that policy instruments, such as those available in Sweden, lessen the impact of a disability on the family and the community. To acquire a disability need not automatically be seen as a catastrophy for the individual and the family, if their exists adequate support - especially in material terms. I do not claim that the family is always the best place for all persons - with or without disabilities. Clearly, that will depend on the family's resources in terms of the members' motivation, emotional maturity and material standard. Yet personal assistance services for persons with disabilities of all ages, as described above, can support the family and prevent its breakdown.

Adolf D. Ratzka, PhD
Visiting Professor
Disability Studies
University of Costa Rica
February 1995