Personal assistance is a very successful service for children and young people as well as adults. With personal assistance all children can grow up together with their parents and siblings. They can play, go to school and have experiences on their own terms.
assistance gives fantastic opportunity, but it is not always simple to make it work within the family and everyday life. You need to find assistants that go well ahead together with both the child with disabilities and the rest of the family. The assistants need appropriate introduction and education in the profession. The parents need support from other in the same situation to cope with their various roles and training to make the rights demands on the assistants. There is a need for close supervision of a person with an explicit and clear mandate. And last but not least, the family need moments without any outside observer in the home, just to breath.
In Sweden 3 500 children and young persons under 19 years of age have personal assistance through state funding. It is very common that also the parents work as assistants, especially when the child is younger.
Persons without experience in personal assistance sometimes express concerns to hiring relatives as personal assistants because they think it complicates the process of liberation. But no other has so many people around all the time as a child with major disabilities. Assistants, special teachers, resources, leisure and short-term staff, specialists, yes the list goes on. A week consists of 168 hours. If the parents assist their child 40 hours per week to make sure that the family has some private life left and for the child to avoid having “staff” around all the time, there is still a lot of time for the child to get valuable contacts with other persons.
With 18 years experience of organizing personal assistance the JAG association dares to say that the opportunity to choose parents and relatives as assistants is fundamental. When you have intellectual disabilities or considerable communication disabilities there is a great advance to use your existing network and get assistance from persons who know you well and can interpret your needs and wishes.
In the study “10 years with personal assistance” we also show that the assistance reform in Sweden has led to fewer adults remaining in the parental home. Before the assistance reform barely 20 percent of the interviewees over the age of 18 were living in own homes. After the assistance reform this figure had tripled. Close to 60 percent of the interviewees over 18 with personal assistance live in their own homes, and they have a real chance to decide for themselves whether they want support and service from their relatives or not.
In 1995 over 60 percent of the interviewees in the study had at least one relative employed. Ten years later the trend has reversed. A growing number of parents have reduced the time they work as personal assistants or have stopped working altogether, even though the child’s granted hours of assistance increased during the period. That the parents are working less as assistants fits in with the increasing familiarity with the form of support as such. People dare to recruit “outside” assistants.
Another concern is that parents who are employed as their child’s personal assistant can become financially dependent on the child. But it should not be forgotten in this context that in many cases the parents had previously given the same support without financial compensation. This created a dependency on allowances, while at the same time individuals had limited possibilities of getting equivalent support in other ways. Given that parents can now be employed on the same terms as other assistants, they are replaceable.
Of course parents and other relatives who are working as personal assistants need the same rights and obligations as other assistants and should follow labor laws and regulations. The assistance need to be organized so that there are no expectation of substantial unpaid efforts of care or service to the child from the parent or constant need of jumping in as a substitute which make it impossible for the parent to maintain another job.
In conclusion, the quality of the support given to the families (which also include foster or adoptive families) is important. In the JAG user co-operative the parents can choose to supervise the assistants to the child, or nominate someone else for this mission. JAG offers the service guarantor extensive support and training in his or her role as a supervisor. The support from the co-operative also includes counseling, recruitment support, legal advice and training for the assistants.
In 1994 personal assistance became a legal right in Sweden for people with certain impairments, both children and adults. A new law, LSS, gave individual rights to people with notable and lasting disabilities and an extensive need for support and services. There shall be a need for support and service for basic needs, like personal hygiene, dressing, eating and communicating with others. The local community is responsible for the service, but there is state funding through the social insurance system when assistance is needed for more than 20 hours per week. Funding is given with a fixed sum per hour that shall cover all costs. The amount of hours is not limited. The system allows the person with disabilities to decide how the service is to be organized and designed with the help of the parents or a legal representative. The person can choose the local community as a service provider, a non-profit co-operative (like GIL, JAG and STIL) or a private company and is also free to choose the assistants.