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

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The recent publicity around sexual abuse of residents in institutions in Costa Rica brings up the question why persons with disabilities have to live in institutions in the first place. Is this really the best way of growing up for children? Are institutions really the best places for old persons to spend their last years? Is there not enough evidence in the form of scientific studies and statements from persons who were forced to live in institutions that the best way to grow up, to live and to grow old for all people - whether they have physical or intellectual disabilities or no disabilities at all - is in one's family and the community?

Why, then, do some families send their children or old parents away and isolate them from normal community life? For some disabled persons one of the biggest obstacles to staying with their families is that they need assistance in their daily lives, for example, with getting up in the morning, getting dressed, going to the toilet, with eating or getting around town. Despite rehabilitation services or assistive devices there will always be persons with disabilities who depend on this type of assistance. Many families - even with the proper motivation and guidance - simply do not have the resources to provide such assistance: the father might be absent, there may be small children in the household and too much other work to be done, to employ a domestic worker may be out of reach.

Often, a paid worker who comes to the house of the family to provide personal assistance a number of hours a day would be all that is needed in order to keep the disabled family member out of an institution. In some countries subscribing to the idea of the welfare state personal assistance is provided as part of the social insurance scheme in the form of a monthly payment directly to the disabled person who then can employ somebody of his or her choice. (Read examples of Swedish policy instruments.)

Personal assistance services are compensatory in nature; assistants do the task that the user would do, if he or she was not disabled. The aim is to enable an individual to choose his/her own lifestyle and to become a contributing member of the family and the community. In many instances persons with disabilities - because of personal assistance - have been able to get an education, obtain employment and start a family.

Today we know that given proper information, training and support most families would prefer to keep their disabled child or old parent at home. If it is the lack of resources that forces families to send their disabled children or parents off to an institution, why cannot the resources presently spent on institutions be made available to these families?

Personal assistance costs money, but so does running an institution. Often the institution owns its land and buildings which together represent a significant capital. Costa Rica's largest institution for disabled persons, for example, the Hogar de Rehabilitación de Santa Ana, owns land and buildings worth an estimated 450 millions Colones. If that capital was invested at, say, 10% in real terms, the annual return would amount to some 45 millions Colones. Add to that the institution's annual budget of presently 18 million Colones (for the residents) and divide the result among the institution's 20 disabled residents and you get an annual amount of over 3 million Colones per resident, on the average. 3 million Colones or USD 15,000 a year is about 5 times the average salary of the average Costa Rican breadwinner. This annual amount would surely be more than sufficient to enable a family to buy assistive devices such as wheelchairs, to make adaptations to the house such as adding ramps or another room, to provide transportation to the school, pay for other services such as physical therapy and, most importantly, to cover the salaries of one or two workers who would provide the personal assistance.

Who needs institutions more - persons with disabilities or the people running them?