Independent Living Institute www.independentliving.org

Our
International Survey of Personal Assistance Schemes (this is from 1998, but we might use it again so we are saving it)


Dear colleague,

The Institute, as part of its project "Personal Assistance Network", compiles examples of good practice in personal assistance from around the world in order to further the state of the art in this area.

The following questionnaire can be used to describe personal assistance services in your country. If there are several different programs or models in your country, please describe the one that you feel is best in terms of the definitions of Independent Living and Personal assistance provided below. If the service is restricted to certain user groups or geographical regions, please, mention this.

Please follow the outline provided here. This will facilitate the work of those who are interested in analyzing and comparing programs and models.

Be sure to use good English.

Submit your completed questionnaire by email to Adolf Ratzka at admin@independentliving.org

If you you have other texts, monographs, manuals, research reports, etc. on personal assistance in your country, we would be very interested in publishing them on our site, provided the authors or publishers expressively grant us the right to do so.

Thank you very much for your cooperation in this important cooperative effort.

Adolf D. Ratzka, Ph.D.
Independent Living Institute


1. Definitions

Independent Living

The term "Independent Living" is often misunderstood. A brief definition might be in order.

Independent Living is a philosophy and a movement of people with disabilities who work for equal rights and equal opportunities, self-respect and self-determination. "Independent Living" does not mean that persons with disabilities do not need anybody, that they want to do everything by themselves or live in isolation. "Independent Living" means that disabled people want the same control and the same choices in every-day life that their non-disabled brothers and sisters, neighbours and friends take for granted. That includes growing up in their families, going to the neighbourhood school, using the same bus, employment that is in line with their education and abilities, equal access to the same services and establishments of social life, culture and leisure. Most importantly, just like everyone else, persons with disabilities need to be in charge of their own lives, need to think and speak for themselves.

Traditionally, persons with disabilities have been seen as medical cases and objects of charity and care, pity and protection. These wide-spread attitudes have been obstacles for disabled persons on their way to self-determination, self-representation and full citizenship.

In order to reach the same control and the same choices in every-day life that non-disabled persons take for granted a number of prerequisites are necessary. Two key requirements are accessibility in the built environment including accessible housing and personal assistance. Without these two necessities persons with extensive disabilities can choose only between being a burden on their families or living in an institution. These extremely limited and limiting options are incompatible with the concept of Independent Living.


Personal assistance

People who are dependent on others for the most basic needs of life face prejudices. Given their physical dependency the conclusion is close at hand to consider them as dependent on others also emotionally and intellectually. Somebody who cannot pull up his or her pants like a small child, may be treated as a small child in other areas as well. It is no surprise then that the Independent Living philosophy is most easily grasped by people who need personal assistance.

Personal assistance enables the user to carry out such every-day activities as bathing and dressing, and going to the toilet. It includes household chores like shopping, preparing meals and cleaning. Assistants help the user at work, about town and on travel. They assist in communicating or in structuring the day, as the case might be. In brief, assistants help with those activities which the user would have done by himself or herself, had it not been for a physical, sensory, mental or intellectual disability.

"Personal" assistance means

Most existing services cannot be called "personal" assistance, since they are not custom-made to the individual's needs and do not allow control and acceptable choices. This is true for both stationary institutions or their "ambulatory" counterparts - the community-based services of local governments or voluntary organisations. Inherent in these solutions is their hierarchical structure with the user at the bottom. Also, users are forced to share the common staff which, in itself, reduces choices and freedom of movement.

Other limitations exist when assistants do not have proper employment contracts and wages. Then, users can neither demand quality work, attention and reliability nor can they feel in charge.

We all, whether disabled or not, know that doing everything by oneself is not the most efficient way. Instead, we often delegate tasks to somebody else. In that sense, anybody who supervises other persons at work is in the same situation as personal assistance users. What counts is not whether we do something by ourselves but whether we are in charge.

Personal assistance can enable users to take their rightful place in family, at work and society with all the rights and duties that the general population takes for granted. With personal assistance persons with extensive disabilities need no longer be a burden on their families. Parents, husbands or wives do not need to stay at home and sacrifice their careers. Personal assistance users not only manage on their own, they can also take their share of household and child-rearing. Personal assistance users can attend school and educate themselves, enter the labour market and become tax-payers. When they fall in love, their partners need not fear that they are about to sign up for a life-long 24 hour job.


Direct Payments

Institutions, whether stationary or mobile, are expensive to run. And yet the quality of life for the users is low. The solution, obvious to most disabled persons, is to try to get money instead of services. We call this "direct payments". With the same amount most users can achieve a better quality of life, either by purchasing the services they need in the market or by organising their own services.

Services in kind control us, direct payments empower us. With services in kind, we are the passive objects and have to take what we get. With money in our hands, we can buy services from the provider of our choice. Or we hire, train and fire our own assistants which is the most direct control over service quality.

Resistance to the simple idea of direct payments has been strong given the vested interests of many service providers and the wide-spread prejudices against disabled people according to which they cannot act in their own best interest and have to be "taken care of".

Direct payments are truly the state of the art when it comes to enabling persons with extensive disabilities to reach self-determination, integrity and full citizenship.



2. Questionnaire

View an example of how this form might be completed.

State of the art in personal assistance services in your country

Country name:      


2.1     Legislative and financial basis

2.1.1   Purpose of legislation


2.1.2   Legal basis for the funding of the p.a. program


2.1.3   Whose financial responsibility is it?


2.1.4   Eligibility criteria and needs covered
        How many individuals are approximately served by this program or model?


2.1.5   Who assesses needs and how?


2.1.6   How much money is paid and how often?


2.1.7   Does the amount depend on the user's/ family's income?


2.1.8   Money flow and its control


2.1.9   What costs are covered (e.g. black wages, full wages, employer's social
        insurance fees, employer's administration, assistants' costs when
        accompanying user)?



2.2     Service delivery

2.2.1   Who can work as assistant?


2.2.2   What types of employment contracts exist?


2.2.3   Who is the employer?


2.2.4   Who recruits the assistants, how?


2.2.5   Who trains assistants, how?


2.2.6   Who schedules, supervisors assistants, how?


2.2.7   Can the individual p.a.user choose his/her assistants?



2.3     Support for the individual personal assistance user

2.3.1   How are users informed about program and their rights?


2.3.2   Legal aid for users in disputes with funders, assistants, service providers?


2.3.3   Training of p.a. users


2.3.4   Support of p.a. users in conflicts wth assistants?


2.3.5   Support of p.a. users with intellectual disabilities in managing their service?



2.4.    Evaluation

2.4.1   What are the problems with this particular solution?


2.4.2   How can this particular personal assistance solution be improved?


2.5     Who are you?
Are you an assistance user, government official, service provider?


Your name and email address
First Name: 
 Last Name: 

E-mail address: 

Date of submission of your description: 




 


Here is an example of how this questionnaire might be used.

Example:
State of the art in Sweden

Personal Assistance Act of 1994 (LASS)

2.1   The legislative basis is the law LASS (Lagen om Assistansersättning) of 1994.

2.1.1
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.

2.1.2
LASS gives the user the legally guaranteed right to receive funds for p.a.

2.1.3
The national Social Insurance (Socialförsäkringen) that is also repsonsible for health insurance, pensions, etc. The insurance is financed by state income taxes.

2.1.4
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.

2.1.5
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.

2.1.6
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.

2.1.7
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.

2.1.8
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.

2.1.9
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.


2.2   Service delivery

2.2.1
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).

2.2.2
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.

2.2.3
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.

2.2.4
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.

2.2.5
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.

2.2.6
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.

2.2.7
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.


2.3   Support for the individual personal assistance user

2.3.1
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.

2.3.2
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.

2.3.3
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;

2.3.4
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.

2.3.5
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.


2.4.   Evaluation

2.4.1
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.

2.4.2
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.


2.5 Who you are

Adolf Ratzka is a personal assistance user, entitled to 15 hrs/day under LASS.
Email address admin@independentliving.org
Submitted July 1998