The role of relative helpers in the Swedish personal assistance system
In most European countries the most common assistance for people with disabilities is provided by relatives, we can easily understand that this system has weaknesses. The trustful relationship makes it work but :
- family members, especially parents, are getting old and can't help eternally their child or relative with disabilities
- children that help a parent with disability have to handle with too much important responsibilities and too young
- relationship partners can't sacrifice their career for the other and can't fear to sign for a life-long 24hour job
- assistance with filial feelings most of the time leads to unequal relation
- hiring external assistants is considered as an abandonment if relatives worked before as assistants
That's why personal assistance can permit relatives to become relatives again, parting family love and assistant job. The LSS ans LASS[1] laws that established personal assistance in Sweden in 1994 permitted a lot of persons with disability not to be forced to "hire" members of their family for free anymore but to hire other assistants.
So, from 1994 and the LSS and LASS laws, the number of relatives working as assistants regularly decreased. If we trust JAG's report[2] concerning personal assistance from 1995 to 2005, the traditional scheme before personal assistance or at the beginning, especially for children or young people with disability -but not only- was :
- a father working full time out of the home,
- a mother not working at all and taking care of the relative with impairment,
- or a mother working part time and another relative is the assistant when she is not home.
This scheme doesn't exist anymore. The report shows that parents of people with disability work more and more out of the family house or are hired as official personal assistant, and are paid for this job.
Personal assistance is consequently a progress for people with disability's families. To be allowed to be hired and paid for the job you did before for free, is of course better for the family budget and, above all, permits parents to be replaceable. Parents can be reassured for their children with disability's future, as they often worry about their becoming old and about the "after-us" time.
It's the same progress for assistance between partners : when your relationship partner is your assistant, it is difficult to mix the job and the private relationship. Equal relations are not easy to maintain when one of the couple is more dependent to the other than the other is. How to handle a conflict between a couple if one needs the other to have a shower or to eat, or to go to the bathrooms? Not to be forced to be your partner's assistant, but to have the choice to be is a lot different.
But the advance is above all important for the persons with disability themselves who can choose who can be their assistants, in or out of the family. We can imagine a young person with disability previously assisted by his/her parents, who wants to be more independent and a self-determined life : he/she is allowed to recruit other assistants.
Besides, to recognize personal assistance as a real job with skills required, education, responsibilities... the persons entitled to personal assistance can compel for assistants to do exactly what they need and want, whereas when your family is working for you for free, you can't decently give orders, so you are less independent.
If a lot of people still hire relatives as assistants for few hours because it's easy and comfortable, less and less are forced to do this, that's a choice now.
By the way, we have to notice that to hire a family member as a personal assistant can be dangerous. The family can become dependent of the assistance income. The support handlers (LSS-handaläggare) who decide of how many hours the persons entitled to personal assistance can get, noticed that sometimes, families exploit the personal assistance system, using the money from the state in a wrong way or against the person with disability's will or safety, especially for children or persons with intellectual impairments. They can manage to get more hours of assistance to have a more important income not sending a child at school for instance (school hours are not paid as personal assistance hours). So the handlers have to be very careful when it comes to a family involved in the person's system of assistance.
Therefore, the Swedish legislation permits persons with disability to choose to hire a member of their family or anybody else. It is a normal job even for relatives, with contracts and income, contrary to France where relatives are considered as voluntary workers, without a real income, just a financial compensation[3]. This difference points out the gap between France and northern countries in the way of thinking about assistance for people with disabilities[4].
[1] LSS (1993:387) Act concerning Support and Service for Persons with Certain Functional Impairments, May 27th , 1993
LASS (1993:389) Assistance Benefit Act, May, 27th 1993
[2] JAG: (Jamlikhet Assistans Gemenskap = Equality , Assistance, Community) cooperative funded in 1994, specialized in people with intellectual disabilities with personal assistance. "10 years with personal assistance" www.jag.se (website in English)
[3] According to the law # 2005-102 "equality of rights, opportunities, participation and citizenship for persons with disabilities", a relative helper can earn between 3,19€ and 4,78€ per hour (if he/she has to quit another job) instead of 11,02€ or 12,12€ for home service employees.
[4] For more information, general report : « La politique du handicap en Suède en matière d'assistance personnelle », C. JAILLET, report 2009, www.independentliving.org (report in French)
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