From institutions to Independent Living: the need of peer-support and education programs
The Swedish personal assistance policy[1] created millions positions: new employers and new assistants. As people used unofficially personal assistance before the legislation (with the family mainly), the practical points (who are going to be assistants, how to train them...) were not difficult to fix for the authorities : family and relatives were the first assistants. Nevertheless, the need of institutionalizing rules in the area of education for assistants triggered out soon after the laws were voted because the persons entitled to personal assistance hired more and more assistants out of their family. People with disability entitled to personal assistance became more and more "bosses" with the management skills and responsibilities involved. That's why most of the companies providing assistance offer now education programs: for assistants, to professionalize the position, and for the persons entitled to personal assistance, about management and leadership.
What is important to point out here is that de-institutionalization needs to be complemented by support programs for people with disabilities towards a self-determined life. The countries that already experienced the transition from institutions to independent living have to share the experiences with countries that want to try it. That's why education programs offered by Swedish organizations are interesting for countries like France where there is no official personal assistance, because they open up perspectives for people with disabilities who want to live independently, permit them to be prepared for the new tasks, to know better how to train assistants, to be reassured. The Independent Living and its different national centers are advisers, and peer-supporters. If the French center (ENIL-France) is not as powerful as it should be, it still have an important task of spreading the Independent Living philosophy, knowledges and experiences got from many years of independent living and personal assistance elsewhere.
Practical example :
In order to understand the logics followed in education programs and peer-support, we can look at the example of STIL[2], cooperative providing assistance, linked to the Independent Living Institute.
This organization regularly offers education courses and workshops for 15 to 20 people groups. The education programs focus on :
- preparing the STIL member to be an employer and to supervise a staff
- helping assistants to understand better their role and position, increasing their awareness of Independent Living philosophy
- debating about work environment
1- staff management
The education program for the employers are composed by two parts in STIL :
first step : basic course
This 3 days long course is composed by:
- thinking about life they have, life they dream of, life they'd like to have thanks to personal assistance
- introduction of STIL and Independent Living philosophy
- introduction of the main laws (LSS, LASS[3], work laws..)
- leadership and supervision of a staff
- how to spend the money from the state : what is allowed to do with it, what is not, what kind of proofs they have to show...
- recruitment issue : which questions they should ask, how to define their needs, where to look for assistants, how to write an ad, how to lead a job interview, how to decide of the salary per hour...
- firing issue
This first step is theoretical but deals with the basic knowledge they need to design their own system and life.
second step
Three days long as well, this course is not exactly fixed so far, they are still working on it but it deals with :
- communication
- how to handle conflicts
- how to improve leadership and supervision skills
This part is more practical.
2- for the assistants
When a STIL member hires a new assistant, he/she is offered to ask the assistant to follow the assistant course. The member can go with the new employee to share the information, comment the course. This one day education is composed by:
- terminology
- introduction of the main laws
- introduction of the STIL and Independent Living philosophy
- assistant's duties and responsibilities
- testimonies of employers and employees
- how to handle a conflict
3- environment
This last course is both for assistants and employers, about people with disability's privacy, rules in someone's private place, how to share a space where someone lives and someone works.
Other courses are at the planning stage, focused on special themes like medical issues for instance, in order to know more about your employer's sickness, like other companies providing assistance already have. For instance, JAG[4] offers this kind of medical zooms or even courses about how to be parents of a child with disability, how to stand that an assistant does the job you used to do...
So, education programs are relatively complete and concern both employers and employees. If they are not offered by all the companies, they are more and more followed. They definitely help the system to be harmonious and more efficient.
If France recognized politically the independent living, it would mean that this kind of education programs and peer-support would be needed in order to give people with disabilities practical ways and weapons to be able to go out of institutions, to design their life the way they want. Those programs are necessary to reassure, to prove that nothing is impossible. They are above all important to give back people with disabilities their motivation to fight for a better life, instead of following the main French speech defending institutions as the safest and most rational way of living.
[1] General report, see « La politique du handicap en Suède en matière d'assistance personnelle », C. JAILLET, report 2009, www.independentliving.org ( report in French)
[2] STIL : (Stiftarna av Independent Living i Sverige : funders of Independent Living in Sweden), cooperative funded in 1984 by Adolf Ratzka. www.stil.se (website in Swedish)
[3] 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
[4] JAG : (Jamlikhet Assistans Gemenskap = Equality , Assistance, Community) cooperative funded in 1994, specialized in people with intellectual disabilities with personal assistance . www.jag.se (website in English)
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