For the International Survey of Personal Assistance Schemes
by Adolf Ratzka, July 1998, a personal assistance user entitled
to 15 hrs/day under LASS,
e-mail address firstname.lastname@example.org
The Legislative Basis is the Law LASS (Lagen om Assistansersättning) of 1994
The purpose is to enable persons with extensive disabilities to have a "good quality of life", that is, to become more independent from their families, move out of institutions and become productive citizens. The law was inspired by the Swedish Independent Living Movement.
LASS gives the user the legally guaranteed right to receive funds for p.a.
The national Social Insurance (Socialförsäkringen) that is also repsonsible for health insurance, pensions, etc. The insurance is financed by state income taxes.
All persons up to the age of 65 who need a minimum of 20 hrs/week for such basic taks as dressing, bathing, eating, communicating. A total of presently 7000 persons fulfill these criteria and are entitled to the payment. (Persons above the age of 65 or with need of fewer than 20 hrs/week can apply to their local government for a similar scheme. In that case the user has no legal right to receive cash payments. The local government may choose to provide the services in kind instead. Also, in that case another law applies (socialtjänstlagen) which obliges the local government to help in achieving a "reasonable quality of life" only. Thus, fewer hours of assistance might be granted.
Assessment is conducted by trained staff at the Social Insurance. They are to consider a persons's total life situation including such aspects as the user's responsibility within the household, at work, leisure time. Need is expressed in number of hours of assistance per week. Assessment also includes the length of the accounting period, i.e. the number of months after which the user has to pay back money for any unused hours. Within the accounting period the user can dispose of the hours, save or spend, as needed.
The maximum amount per hour is determined each year by the central government and is presently 20 ECU. This amount multiplied by the number of hrs/month that the user is entitled to is paid monthly.
Benefits from Social Insurance are not means-tested and do not constitute taxable income. Thus, the amount paid to assistance users does not depend on the user's or his/her family's income or wealth; only on the numbers of hours needed.
The monthly payment from Social Insurance can be paid directly to the user's bank account or, at the discretion of the user, to the user's service provider. After each month the user has to send to Social Insurance a signed statement specifying amount of money received and number of hours used for that month. After the end of the accounting period (see 2.1.5) user and service provider have to report any hours which were not used up. The amount of money equivalent to these hours will be subtracted from the next payment. Social Insurance can audit service providers.
The hourly rate is to cover the average costs of full wages including compensation
for unsocial hours, employer's social fees, insurance, all employer's administration
including advertizing for assistants, assistants' costs when accompanying user,
some assistive devices facilitating the assistants'work.
Anybody. No requirements as to qualifications. Only limitations are age limits (stipulated by Swedish labor law) and the total numbers of hours worked during a month (stipulated by labor union contract).
Employment contracts with the unions in this field can be full-time/part-time monthly employment with same salary each month and severance payment at termination or on a per hour basis.
The Social Insurance money can be used to purchase services from a provider (local government, private company or user cooperative). In that case the provider is the employer for the assistants. It is also possible for an individual user to start up one's own company which, in turn, is the employer.
The service provider. Often users can express their wishes as to which assistants they prefer. In STIL's user cooperative model the individual user is solely responsible for recruiting. STIL has no common assistant pool since this would limit the individual user's discretion. The individual user can advertize anywhere and in any way, e.g. placing ads or by word of mouth.
In STIL's user cooperative model the individual user is responsible for training his/her own assistants according to the user's individual needs. We do not believe in common training - except for training in ergonomics. Users either use experienced assistants to help in training new ones or, as recommended by STIL, trains each assistant himself/herself for full control over the training.
In STIL's user cooperative model the individual user is solely responsible to schedule, supervise, motivate and re-train assistants according to the user's individual needs.
STIL's user cooperative model allows the individual user full freedom over
the recruitment and scheduling process. Thus, it is up to the user who will
work, when and with which tasks.
Support for the Individual Personal Assistance User
The LASS law charges local governments with the task of informing persons who might be eligible for the payments. Also, disability organizations inform their members about the program and their rights. STIL conducts courses, distributes literature and has staff to answer questions during office hours.
According to Swedish law legal aid to low-income persons cannot be granted when persons appeal the Social Insurance's decisions (for example, the number of hours granted). Some disability organizations including STIL have staff on hand who will assist the individual to appeal decisions.
In STIL's user cooperative model membership in the cooperative and the scheme is awarded only to graduates of the "supervisor course" which prepares the user for the task of becoming supervisor of his/her assistants. Course consists of 10 evenings covering such topics as How to use personal assistance to reach life goals; How to assess one's needs; How to apply and argue for the payment; How to recruit, train, supervise, motivate, terminate assistants; the necessary paperwork; the union contract, assistants'employment conditions, labor laws pertaining on to safety and health in the workplace;
STIL members have access to support from staff consisting of experienced personal assistance users. Also, peer support group sessions are conducted on the most frequent problem areas with assistants. We have also had a "buddy" system where we have tried to link new and inexperienced members with members with long experience in running their own assistance.
In STIL's user cooperative model there are a number of members with intellectual
disabilities. In most cases their legal representative - most often a relative
- will take on the function of recruiting, training, and supervising assistants.
In some cases where this support has not been strong or lacking STIL has tried
to assist the respective member with a "deputy supervisor" with the
member's consent. The "deputy supervisor", in turn, is supervised
by STIL's office staff.
Social Insurance: after age 65 the user has to turn to local government which often entails lower quality of life. Also persons with needs of fewer than 20 hrs/week would benefit from the scheme. Recently, changes have been ratified by Parliament which take away the right to personal assistance while in school or in day centers. There staff of the institution is to asssist. Clearly a big leap backwards.
STIL's user cooperative model: Many features depend on the wisdom and enthusiasm of the leaders. According to the bylaws the board must be 100% assistance users. If not enough good people have the time and energy to serve, scheme will deteriorate. Also, it is difficult to find personal assistance users for qualified staff positions. Availability of peer support depends on good and motivated members who will work in this field. Solutions delegates a great deal responsibility to the individual member. Thus, the cooperative is quite vulnerable, if some members do not live up to their duties and, for example, treat assistants unfairly. In that case, the cooperative's reputation suffers and labor unions might take action against us.
Good "buddies" and "deputy supervisors" are very hard to find. STIL has presently 190 members. It seems that given our rapid growth the need for "buddies", "deputy supervisors" and peer support staff far outpaces the number of able and willing members who want to work with these issues. Also, once somebody has become a member we cannot really force them to seek help in managing their affairs, since STIL respects each member's right to run their own lives without interference from others - as long as they do not violate other member's rights.
As to the limitations imposed on us by the law and the Social Insurance we
have been demonstrating and lobbying to try to improve/fend off cutbacks. As
to the limitations of the STIL model, we are still not finished with the job
of building it. Its quality will always depend on the members. There has to
be a critical mass of members with skills, motivation and solidarity.