Report of docs1/ENIL Seminar on
at STIL, Stockholm, June 6-8, 1996
The report contains the papers presented and a summary of the seminar on
existing European direct payment schemes for personal assistance.
Introduction to direct
payments for personal assistance
Presentation of STIL, the Stockholm
Cooperative on Independent Living
Presentation of JAG
The word "JAG" in Swedish means "I" or "me".
The users of personal assistance who are members of JAG are subjects, individuals,
and not (as before) objects of care. The word "JAG" is also formed
of the first letters of the Swedish words for Equality, Assistance and Integration
- immensely important words for JAG's members.
One part of JAG is an association which works with issues related to personal
assistance and disabilities. The other part of JAG is a cooperative of users
of personal assistance. Ideologically, JAG belongs to the Independent Living
movement. The association JAG and the cooperative JAG are both organized
in the form of national, non-profit associations.
Membership in JAG
Only a person with multiple, severe disabilities including some kind of
intellectual disability can become a member of JAG. Others can become supporting
members, without the right to vote. Only a member of the association JAG
can be member of its Board of Directors. JAG's members are, with few exceptions,
represented by their legal guardians.
Members of the cooperative JAG, due to their intellectual disabilities,
cannot be burdened with the responsibility of being members of its Board
of Directors. To risk making the members personally responsible for decisions
concerning large amounts of money would be unethical. To achieve the closest
connection possible between the members and the management of the cooperative,
the Charter of the cooperative JAG stipulates that only a legal guardian
to a member of JAG can serve on the Board.
For the same reason, JAG's members are unable to work at the central office.
Some of the staff at the central office are parents of members of JAG, and
thus have valuable experience and knowledge of JAG's members' situations
and needs. Among JAG's members are persons with developmental disabilities,
as well as persons who have had a head injury caused by an accident or by
illness. With few exceptions, JAG's members also have extensive physical
disabilities. Most of JAG's members have no speech, but express themselves
in their own very personal way. The nature of the members' disabilities
presents problems to achieve user-control of personal assistance. JAG has
undertaken the difficult, but not at all impossible, task to provide user-controlled
personal assistance of high quality to its members. The JAG-model will be
presented further in the following.
Personal assistance in Sweden before the 1994 assistance reform
People in the situation of JAG's members are probably those who need personal
assistance the most. Because of their very individual needs of care, and
because of their communication and intellectual disabilities, no other form
of service works. The service must be safe, continuous, personal (that is,
designed by the user) and given with respect for the user's integrity. In
JAG's opinion, only personal assistance meets these requirements.
In recent history, persons with intellectual disabilities in Sweden had
the limited choice of either living in hospitals or other institutions,
or living with their families (most often parents). Those families who struggled
to keep their relatives out of institutions found themselves in a very difficult
situation. Parents and other relatives gave personal assistance day and
night, most often having no possibility to have a job outside of their home.
They were given little or no financial compensation for their work, depending
on the attitude of the local municipality. A variety of different public
services were offered. These services were most often designed to relieve
the family, lacked continuity, and certainly did not offer any self-determination
for the user. Within the legislation of that time, the municipal social
authorities could provide services similar to personal assistance. However,
the individual had no right to decide on the form of the service, and not
many persons with multiple disabilities were "lucky enough" to
live in a municipality where the social service office understood their
needs (or, rather, were willing to cover the costs for their extensive needs
In the early 1970s, some parents of children with multiple disabilities
formed a working committee within the Swedish National Society for Persons
with Mental Handicap (FUB). This committee, lead by the director of JAG,
Gerd Andén, struggled to convince Swedish government officials at
all levels of the need of personal assistance for persons with intellectual
disabilities. This work was fruitful, and a few years later some municipal
social service offices in different parts of Sweden began to provide services
in form of personal assistance. At that time, the committee believed that
the assistance had to be organized within the framework of public services,
since these users are not able to supervise their own assistance. However,
the users' experiences gradually identified other possible solutions, and
in 1992 JAG was formed as a small-scale cooperative financed by contracts
with its members' municipalities. Quite a few of the people whose parents
in the 1970s fought for personal assistance are now members of the cooperative
Development of JAG
When the assistance reform came into force in 1994, a large group of people
with multiple disabilities were granted the necessary funding for their
assistance, and JAG grew rapidly. In March 1994 the cooperative had 13 members,
and at the end of the year there were about 100 members. JAG now has 176
members, and is still expanding. JAG employs more than 900 assistants, producing
over 800.000 personal assistance hours per year. An expected annual turnover
in 1996 of over 140 million SEK (or 16 million ECU) makes JAG the largest
cooperative of users of personal assistance in Sweden. This is due to the
fact that JAG's members need in average nearly 100 hours of assistance a
week, which is quite a lot. The majority of JAG's adult members need assistance
24 hours a day. Normally, children have been granted less hours of assistance
than they actually need, since all parents are expected to take care of
their children within the bounds of parental responsibility.
The cooperative JAG is inspired by STIL and organized similarly to STIL.
After application and acceptance, a person is granted funding for a certain
number of hours of personal assistance per year by the national social insurance
office. The user chooses (through the legal guardian) JAG to be the employer
of his/her personal assistants. A contract is made between the member and
JAG. JAG charges the member a certain price per hour of assistance, which
covers the costs of the assistants' wages, JAG's administrative costs, educational
costs and the user's expenses for accompanying assistants. The member chooses
his/her assistants, when, where and in what way the assistance is to be
given. JAG makes employment contracts with the assistants. The member reports
to JAG the number of hours of assistance given by each assistant every month,
and JAG pays the assistants' wages (including compensation for unsocial
hours and social insurance). Monthly reports on the total number of hours
of assistance used for each member are provided by JAG to the national social
User-control through a deputy supervisor
Unlike STIL's members, JAG's members are, due to their intellectual disabilities,
unable to organize and supervise their own assistance. Therefore every member
of JAG has a deputy supervisor by his/her side. The title in Swedish for
this person is "servicegarant". The deputy supervisor is chosen
by the member (through the legal guardian). The duties of deputy supervisor
are defined in a contract between the deputy supervisor, the member and
JAG. Many of JAG's members have chosen a close relative to be deputy supervisor,
some have chosen a friend or other person that he/she trusts. The deputy
supervisor must be a person who knows the user well, and can communicate
with the user. The deputy supervisor has a twofold function. Firstly, the
deputy supervisor is responsible for recruiting, instructing, supervising
and scheduling the assistants in accordance with the user's preferences.
In organising and administrating the assistance, the deputy supervisor must
always put the user's interests before the staff's interests. Secondly,
the deputy supervisor guarantees the continuity and safety of the assistance.
In this way the deputy supervisor functions as the "safety net"
of the assistance. For many of JAG's members to be left alone for a single
moment could be life-threatening. In a situation where for some reason one
assistant does not come at the appointed time, the JAG member is unable
to use the telephone to call a substitute. The assistants must at all times
be able to reach the deputy supervisor, who has the responsibility to get
a substitute - or to provide the assistance himself/herself. Without this
back-up support, the assistance could not be safe.
JAG's central office supports the deputy supervisors by information concerning
labour laws and collective labour contracts etc. The deputy supervisors
can always consult the central office for advice when employing or firing
assistants, and in various other situations that may arise. The office also
offers legal advice to members, legal guardians and deputy supervisors concerning
funding of the assistance, etc.
1) Instruction/introduction of a new personal assistant. A new personal
assistant to a member of JAG needs to work together with an experienced
assistant, very often as long as 4-6 weeks, full time. This is because of
JAG's members' complicated needs and their very personal ways of communication.
This introduction must be provided by the deputy supervisor, or by another
experienced assistant under the deputy supervisor's control. It is impossible
for JAG to keep a substitute pool, so each member must have a small "pool"
of his/her own of assistants who have been thoroughly introduced to the
2) Educational programmes for further training of the personal assistants
are arranged by JAG. Some of Sweden's leading specialists (neurologists,
physiotherapists, psychiatrists, etc.) participate giving lectures and seminars
in various subjects. The aim of the courses is to give the assistants a
deeper knowledge and understanding of disabilities and how to compensate
for them. JAG's members participate in the courses, together with their
deputy supervisors and assistants. The funds for education that are available
to each member in JAG can also be used at the member's choice to finance
education arranged by other organizations. The deputy supervisor helps the
member to decide if the assistants need any further training, and what kind
of education is needed. JAG's assistants' work is to provide what is probably
the most advanced personal assistance that exists, and they do it very well.
Nevertheless, there is a continuous need for further training and supervision.
Not least, the assistants need constantly be reminded of what personal assistance
is in terms of attitudes, respect, integrity and confidentiality.
Experiences of personal assistance in JAG
JAG's model works very well! It is now clear that user-controlled personal
assistance is not only a dream for people with multiple disabilities. Generally,
JAG's members testify to the enhanced quality of their lives in several
- JAG's members' physical and mental health is much improved, since
they get the proper custom-designed service they need by assistants they
know well and trust.
- JAG's members are developing interests of their own, which they have
rarely been encouraged to do before. Now members are finding hobbies and
activities that they enjoy - in a safe way, with assistance.
- Both JAG's members and their families experience a growing independence.
Most of JAG's members had been made completely dependent on the strong support
from their families during their entire lives. When first organising personal
assistance, it was mainly parents, sisters and brothers, spouses, etc. who
were working as personal assistants. Step by step, the members and their
families are accepting assistants who are not related or previously acquainted
with the family to provide assistance, thus gradually improving family relations.
There is even a growing tendency towards entrusting the job as deputy supervisor
to one of the more experienced assistants.
- JAG's adult members have been able to move out from group homes, hospitals
and other institutions to a home of their own, with assistance. Also quite
a few members have moved from their parents' home to live in their own apartment,
and more are planning to do so. JAG welcomes and encourages this development,
but is also very much aware that these changes should not be hurried, but
must be made at the individual member's own pace. Although many difficulties
are yet to be overcome, the objectives Equality, Assistance and Integration
are no longer out of reach for JAG's members
111 56 Stockholm, Phone 46-8-20 20 80, Fax 46-8-20 20 85
Summary of the HELIOS seminar on
Direct Payment Schemes for Personal Assistance
Request to readers: It is always difficult to reflect the contents
of a lively discussion. In the following summary there may be omissions
or outright misrepresentations of the situation in your country. Please
use the interactive potential of the Internet and help us to make the descriptions
below more accurate. You are welcome to send
us your texts and comments, case descriptions or anecdotal evidence.
Legislative and Financial Basis
Currently all assistance users are entitled to a "community care"
assessment. Up to 1993 the law was vague. Direct payments depended on how
your local authority interpreted the law. In 1993, due to a change in the
state government's interpretation of the law there was a threat of legal
action if authorities made direct payments. So "indirect" payments
came about while we wait for the legal basis to be clarified. Typically
the maximum amount available is £500 per week. "Community care"
law compels authorities to contract a percentage of services to the "independent"
sector. This involves private sector agencies in delivering personal assistance
services. They are not user controlled. In addition to local authority payments,
there is the Independent Living Fund, a means-tested system, a disincentive
to earn income. To qualify for ILF now you have to get services worth £200
per week from your local authority first. Under the new law (in place next
year) there will be two sources of money, the local authority or the ILF.
There are inherent weaknesses in the new system. Under neither system administrative
costs are covered. There are no set amounts (some payments are very small)
and the law is permissive not mandatory: Local authorities are allowed to
offer direct payments but are not compelled to. The disability movement
wants to get user controlled agencies to advise and support users. At present
many user groups (e.g. in Shropshire) are acting as agents for "third
party" arrangements. The current law forbids payments directly from
local authority to user. Payments are channelled through a voluntary organisation
to the user. In the future, these organisations will provide peer support
and advice to users in the new system. Assessment of the number of hrs assistance
needed is done by social workers. Personal assistance, domestic help and
social activity are to be covered. Different local authorities make different
assessments. "Our quality of life is determined by other people's judgements.
We keep having to make the quality/quantity compromise. We have no real
Presently, there is no legislative basis for direct payments for personal
assistance. Local governments have to provide services in kind. But whether
the user will receive funds instead depends on the local authority. There
are great local variations. Parliament has just decided that direct payments
for personal assistance will be permitted in Norway. But there is no legal
entitlement. In fact, after 1998 it is unsure whether there will be any
funds. Assessments are based on the traditional community-based home care
system run by local governments. Thus, only the most basic needs are covered.
Some individuals, after much fighting, have received hrs also for "participation
in society". Decisions can be appealed in administrative court. There
are three models in Norway for the use of direct payments: individual employer
(very rare, since the paper work for employers puts most people off), the
local authority is the employer of one's assistants (allows the local government
control over your assistance), user co-ops (follow the Swedish STIL model).
There are three laws relating to personal assistance: Social Security Book
5, a medical approach which pays for "nursing care". The money
goes to the service provider, often a private charity. Social Security Book
11 gives payment to organisations or individuals. There are three categories
of need (based on functional assessment of impairment) with differing amounts
paid per month, 400 DM, 800 DM, and up to 2,300 DM. In exceptional cases
up to 3,570 DM may be paid. The category is determined by he social security
medical service. Re-assessment takes place every 6, in some instances every
3 months, by the local authority doctor and social worker. Money has to
be accounted for. If you leave Germany for more than six weeks you lose
benefits. Social Welfare Law is means-tested and uses the same categories
as Social Security Book 11. If household income is less than 2,000 DM per
month you get money for how much assistance you need, up to 24 hours/day
if necessary. But this depends on the local authorities' interpretation.
There are two systems. The Social Services Act of 1982 charges local governments
to insure a "reasonable quality of life". This includes the provision
of community-based "home help services". Assistance is to cover
personal needs, household chores and "participation in society"
and is to take into account a person's whole life situation. Thus it is
not a primarily medical model. Assessment is made by the local government's
social workers. The service is not means-tested but the local government
may charge the user a percentage of actual costs which will vary with household
income. Decisions can be appealed in administrative court. Up to 1987 local
authorities had the monopoly in assessing, financing and producing services
- often involving one and the same social worker. STIL started as a reaction
against the triple monopoly. In 1987 STIL, a user coop, started its operations
after negotiating for the same amount of money which local governments used
to spend on the home help for the STIL members participating in the pilot
project. The Personal Assistance Act of 1993 legally guarantees the right
to receive direct monthly payments through the national social security
scheme for a "good quality of life". Funds are not means-tested,
as the payments are under social security. Need is expressed in terms of
hrs/week and assessed by the social security system's social worker. Also
need for assistance at work and school is covered (the latter only for persons
with certain medical and communications needs). Only persons under 65 who
need more than 20 hrs/week for personal needs are eligible - about 6700
persons in all of Sweden (8,5 million inhabitants). These are the fortunate
ones. All other assistance users fall under the Social Services Act where
it is up to the local government to provide services in kind or pay out
funds to the user. Under the 1993 Act the government sets a ceiling each
year for the cost of one assistance hr, currently 21 ECU, the country average
being 19 ECU. The amount presently contains up to 3.5 ECU for administration
to be used for training, bookkeeping, assistants' costs when accompanying
the user, etc. Used hrs have to be accounted for. Persons functioning as
employers of their assistants need to account also for the use of the funds.
Some user coops had to open their books as well. Unused hours can be saved
for a period of up to 6 months.
Under the Social Services act of 1992 local governments must provide housing
and assistance for people with extensive disability. It does not specify
what kind of assistance. One way of organising it are direct payments for
personal assistance. A maximum of 40 hrs/week is paid, no unsocial hr payments
for nights or weekends. In some municipalities the local government administers
the whole scheme and pays workers directly. Needs are assessed by social
Following a limited pilot project a nation-wide direct payment system has
been in place since 1995. For the first two years the national social security
system has a limited budget for these payments covering the needs of 6,000
to 7,000 users. Already now in summer 1996 so many users have applied that
no more applicants can be accepted. Presently work is underway to turn the
program into a legal entitlement such as the one in Sweden. Assessment is
conducted by the same local government agencies that have been doing assessments
for the traditional local home help services. Activities supported are personal
needs and household but not "participation in society". The amount
is means-tested and covers most costs such as assistants' social insurance
and wages for unsocial hrs. In order to become eligible for the scheme users
need to join the organisation "Persaldo", a NGO comprised of and
controlled by assistance users, through which the government funds are channelled.
Persaldo pays wages and accounts for the use of the money to the government,
the individual user is the employer.
The Care Act of 1993 is to provide "money to cover the additional costs
arising on basis of need of care in the form of a contribution". There
is a federal and a state care law with a contract between federal and state
government, to have the same standards in both laws. The financial responsibility
is shared equally. Assessment is based on the medical model covering dressing,
hygiene, eating, toilet, medication, shopping, cleaning, laundry. The allowance
is paid monthly, sums range from 2,000 AS to 21,000 AS. Pay is 40 or 50
AS per hour. People get between 50 hours and 500 hours per month. This is
a contribution, it does not cover full costs. (For example, the usual rate
of pay for this kind of work is 100 AS per hour.) People have to go to social
services or use private means for the rest. The restriction on funding means
that many users employ "black" or "grey" labor. The
allowance is not means-tested. Cost can cover the social insurance for members
of the family when they do the work.
There exist no direct payment systems, only community-based social services.
The municipality employs and trains assistants. They are not available for
the whole day, only for a few hours.
There are no direct payment schemes for personal assistance, not even community-based
personal assistance services. The only solutions for persons without own
resources are institutions or the semi-institutional Fokus scheme (which
originated in Sweden). Legally, it is difficult to hire PAs - even if the
user would pay. Certain functions can only be carried out by medical staff,
anybody else risks fines. (Such functions deemed to be medical in nature
are funded by the health insurance scheme.) The minimum period of work is
three hrs. Women, by law, cannot work at night. As a result users are forced
to hire "black" labor with their own money, often unemployed people
who are on unemployment insurance. The Flanders Independent Living Movement
has succeeded in getting a pilot project for personal assistance approved
which will start shortly.
Obviously, direct payments as part of larger state social security systems
with entitlement protected by law provide better protection and regional
equality than solutions that vary from municipality to municipality thereby
discouraging geographical and social mobility of user. There should be no
restrictions of eligibility on the basis of minimum hrs of need, age or
medical diagnosis. Not means-tested direct payments empower the user most
since no disincentives to work exist. If administrative costs are not included
in the hourly rate paid by the state, users will still be dependent on either
a public or private service provider who takes over the administration.
User cannot utilise assistance hrs to the same degree when there is no payment
included for the assistants' costs in accompanying them. Strict medical
assessments limit users in their personal growth and social roles, since
the number of assessed hrs, by definition, will not change even if users
return to work and start families of their own. Users need to be able to
save hrs within, optimally, a year in order to achieve the necessary flexibility
in their lives. Wages underlying the hourly rates paid by the scheme must
cover good wages with full social insurance for the workers.
There are few user coops or individual users who employ their assistants.
Most assistance is provided in the form of services in kind by local governments
and charities. User organisations are obliged to pay Value Added Tax (which
ups their costs). When members employ their assistants themselves, individually,
VAT is not required. Assistants can be self-employed but then users are
not able to ensure that assistants pay their taxes and insurance. There
is a standard employment contract that is being used, amendments are possible.
In principle, anybody can be hired as assistant but the government plans
to restrict employment of family members. "Au pair" youths are
very common, can work well but problems are inherent in hiring very young
persons from a different country for less than a year. There is no minimum
wage in UK and assistants are not organised in trade unions.
The lion's share of community-based assistance is provided by local governments
and charities. Organisations have to pay union wages. Individual users pay
often less. There is no minimum wage. Quite often "black" labor
is employed by users, workers are not insured. Students, on the other hand,
who often work as assistants automatically have health insurance. Anybody
- except relatives may work. A major part of all assistants are conscientious
objectors (COs) who can be employed by recognised charities only. They receive
a basic allowance from the State and represent very cheap labor. This, in
turn, tends to depress wages in the whole sector and is one of the causes
for the low status of the work. The rules do not permit self-employed assistants.
There are very few user coops. The Bremen coop's total costs per hr are
DEM 35. Workers receive between DEM 16 to 21 DM, the highest in town. The
Bremen coop has a pool of PAs which are dispatched from the central office
to the individual user. The Bremen coop advertises for workers and screens
applicants. The user will then train them, sometimes together with an experienced
PA. COs receive a six weeks course in "disability care". Under
the new legislation organisations hiring workers have to have a nurse on
staff who trains and supervises PAs.
Money through LASS goes to the personal assistance user who in turn can
contract the local government's services, a private service provider, join
a user coop or employ assistants directly. Despite the new opportunities
over 90% of all assistance users still receive services in kind from local
governments, in particular, almost all assistance users who are not eligible
for LASS. Among the persons entitled to LASS, 80% contract services in kind
from their local governments, less than 10% have joined user cooperatives,
the remainder either employ their assistants themselves or contract a private
service provider. In user coops members recruit, train, schedule, supervise
their own assistants. No assistants are shared. This in order for the individual
user to gain maximum control over services. The coop functions as legal
employer responsible for wage payments, tax withholding, accounting for
used hrs to social security and, most importantly, representing the member
and collectively negotiating with funders (social security and local governments).
This division of responsibility is to maximise the number of persons who
can benefit from the advantages of user controlled schemes by freeing them
from the burden of paperwork and considerable risks and liabilities of being
the employer. Assistants need not be union members, they are covered by
union contracts and their negotiated wages in any case. Assistants can be
employed on an hourly or monthly basis, the latter giving them considerably
more protection. In the user coops anybody can work as assistant but a minimum
age of 18 years is enforced. Outside the coops, social security discourages
the use of family members as assistants. Members of user coops use many
different ways of recruiting workers such as newspaper ads, ads in the neighbourhood
stores or the coop's central computerised registry where job applicants
can get themselves listed. The user coops charge the member a certain price
per hr of services (in STIL the price is presently 21 ECU). Social security
pays the amount charged as long as it is within the ceiling set by the government
each year. With 21 ECU per hr STIL pays all labor costs plus the central
administration including central administrative labor costs, office rent,
equipment, membership training and support programs, new product development,
lobbying. As part of the 21 ECU members have access to a budget of 1,2 ECU
per hr for such individual administrative expenses as cellular phones to
better reach assistants, newspaper ads for recruitment, assistants' meals
and transportation when accompanying the user. STIL also has a legal defense
fund to protect members' rights in dealing with public and private agencies
in all matters directly and indirectly concerning personal assistance. STIL
does not need to apply for any contributions from private or public sources.
The new direct payment scheme is only available through membership in the
NGO "Per saldo" which is spreading all over the country. The user
recruits assistants through ads, word of mouth or from agencies. Dutch law
does not allow hiring spouses as assistants but other relatives can be employed.
The individual user can be the employer or can contract with a service provider.
Users who receive direct payments for personal assistance from their local
governments are the employers and recruit and supervise assistants. Anybody
can be employed including family members. The local authority pays the salary
in some systems and does the administrative work. The user just tells them
how much assistants get paid. Assistants have the same wage schedules as
the employees in the local governments' traditional community-based home
help system. There are courses for users paid for by local governments.
There was agreement that the user should be free to hire anybody. Users
should be made aware of the potential problems of increasing dependency
when hiring family members, but must make the decision. That is empowerment.
There was concern over the policies of some countries which pay low rates
to users and require no accounting for the money thereby forcing users into
hiring black labor to make ends meet. This not only poses risks and hardships
for both worker and user, it also preserves the low status of assistants'
work. Without proper pay users cannot demand high quality work.
The professionalisation of personal assistants was another concern. Especially
in countries where the medical model of disability is predominant assistance
users, in their every day lives, are made dependent on several medical professions
which not only ups the costs (thereby reducing the number of hrs) but also
limits users' flexibility in their lives and self-determination. Professionalisation
does not automatically lead to higher quality work, since user self-determination
and control are the most important quality criteria in users' eyes. The
more training and professional status workers have, the less power the user
has, as one participant feared.
Division of responsibility between individual user and the user cooperative
involves a difficult balance. On the one hand, the individual needs the
maximum freedom in making his/her own decisions and taking risks. On the
other hand, poor judgement on the part of one individual sometimes can jeopardise
the whole coop. If the coop takes over too many functions, there is a risk
of building up another institution. The bigger operations get, the greater
the need of hiring professional staff for central operations. These persons
may not always be personal assistance users. They will tend to introduce
lots of rules to streamline operations thereby reducing the individual member's
As direct payment schemes gain ground and user coops grow in membership
the original political visions loose ground against the day-to-day issues
of running an expanding business. Also, most new members will view the coop
as a convenient way of administering their personal assistance only.
Support for the individual user
The ULOBa co-op is now five years old. It has a magazine for membership
information and written information to respond to inquiries. The coop has
no experience of legal aid so far but tries to build up a fund, in case
they need to go to court. But in Norway there has only ever been one case
between a disabled person and the municipality. Regarding the relationship
between user and assistants the coop teaches members to be open in their
The CILs inform assistance users of available programs. Charity organisations
do not know about PA/IL. Social authorities are obliged by law to give complete
information and counselling to people with "problems at home"
but are not very informed. Most work is done by CILs, of which there are
18 across the country. Regarding appeals procedure, BAGH, the national umbrella
of traditional organisations for disabled persons has established an insurance
for social rights, costing approx. 3O ECU per annum where people can choose
specialised lawyers. A lot of ClLs provide legal aid as an important service.
CILs also established a legal fund. The German legal aid system is quite
generous, you don't have to pay court costs. As a consequence there is a
large number of appeals. For example in Bremen there have been 260 cases
this year arising from the new law. For training of assistance users, the
national organisation of independent living centres offers seminars teaching
how to be a PA user. There is a handbook and information is on the Internet.
An important feature in all training is to make clear the difference between
personal assistance and traditional "care", between the social
and medical model of disability. Other important items for training are
the obligations of the employer, how to build a good working relationship,
training in communication skills. It is important that people can express
what they really want/need. Assertiveness training is also important, especially
for people who have been "cared for", and the philosophy of independent
living. Assistants' training is mainly on the job but there are two paid
hours a week for training assistants in physiotherapy, lifting etc. if required.
In CILs disputes between users and PAs are sought to be solved by consensus.
One needs to distinguish between technical and psychological problems. In
Bremen the co-op acts as an advisory body. It is important to get training
on building good working relationships. If a problem between user and PA
cannot be resolved, the co-op pays severance pay. Regarding support for
users with intellectual disabilities, in the Bremen assistance co-op some
10 or 12 users (out of 50) have an intellectual disability. Some have legal
guardians and there are people in the coop management who supervise the
PAs for people with learning disability.
Information about personal assistance and direct payment comes from CILs.
We encourage documentation, to show people, to spread ideas and increase
interest. Personal Assistance Support Schemes are on the increase, not just
through CILs but through other local organisations of disabled people. There
are three recent publications on IL and PA and a new law on direct payments
is being drawn up. We insisted that there should be a commitment to support
structures in the law. This compares with the existing system of the Independent
Living Fund, where money is given out with no support and no information.
The disability press, different impairment organisations and our Personal
Assistance Users Newsletter keep people up to date with developments. There
are always gaps in information. The Internet now has some information. BCODP
has got money to set up a national information and training resource on
IL. Regarding disputes with funders, there is no automatic legal aid. Some
examples of using means-tested legal aid scheme have been successful. There
are mechanisms which allow people to appeal at various levels. What doesn't
exist is any right for assistants. There are a number of disabled lawyers
who specialise in community care. But the first step in a complaint must
be to the service provider, so people are reluctant to do it. Regarding
training of assistance users, CILs and other organisations specialise in
PA training. They cover practical stuff, for example payroll administration.
Group training is organised and individual one-to-one training from disabled
experts. BCODP's planned new national independent living project will include
training. CILs provide peer support, but burn out is a problem for us, too.
There is a great need for support for people in conflict and to build safeguards.
The psychological aspect of working one to one can not be taught completely,
some things can be only learned by experience. Issues of personal space,
ways of giving positive feedback to PAs, keeping boundaries in the relationship
- all have to be learned with experience. Regarding support for assistance
users with intellectual disabilities, in a few areas people with learning
difficulties are PA users; they have someone who is an advocate, to speak
on their behalf, fill in forms etc. People with learning difficulties have
been active in the campaign for direct payments. They need access to personal
assistance, but who pays for the advocate/deputy boss? These expenses need
to be included in the funding package.
By law local governments are to provide information on direct payment for
personal assistance, on a case-finding basis. Also, disability organisation
and user coops will provide information. It is harder to reach out to people
in the countryside. Information is often shared informally. Regarding disputes
over funding, individuals can appeal in the administrative courts. Disability
organisations will help. STIL, for example, has a legal aid insurance for
members which presently is under reconstruction. The cost of insurance is
included in our management fee (2O SEK per hour) and STIL will cover costs
of legal expertise if necessary. In this way we also hope to push precedence
cases. Prospective coop members need first to pass a mandatory 10 evening
course on all aspects of Independent Living, personal assistance, self-assessment
of needs, negotiations with funders, recruitment, training, scheduling,
supervising assistants, role of relatives, the coop's rules, labour laws
on health and safety, responsibilities of coop members such as filling out
time sheets. There is emphasis on users training their assistants themselves.
Course instructors are PA users. GIL, the Gothenburg coop, arranges for
physiotherapist to give lifting classes. It is up to members to send their
PAs on these courses. STIL has had a "buddy" system - old members
supporting new members - but hard to keep this going. In case of conflicts
with assistants, support from STIL staff is available. It is difficult to
get experienced members to serve as staff or volunteers in the peer support
department. Burn-out is common. Because of Sweden's strict labor laws and
strong unions workers can be dismissed in very serious conflicts only. Even
then the user (sometimes with support from the coop) needs to pay severance
pay. In that case, members use their budget for administrative costs (contained
in the rate which social security pays for personal assistance). Regarding
PA users with intellectual disabilities, STIL has had only limited experience.
Of 160 members there are approximately 10 who also have intellectual disabilities.
STIL uses a system of "deputy bosses", where somebody who has
the confidence of the respective member - relatives (as in the case of parents
of members who are under age) or a trusted experienced assistant will assist
the member in the supervisor role. It is difficult to find the right person.
STIL finally had to hire a non-disabled person to function as deputy boss
for some members.
The Helsinki CIL publishes books, a magazine and a newsletter. We try to
distribute these to the general public. AT the CIL a disabled lawyer will
assist PA users in disputes with funders. Training PA users is one of the
most important tasks of the CIL. We organise "boss" courses, similar
to STIL. Most important content of course is philosophy of IL. There are
not that many conflicts between users and PAs. They are mostly dealt with
through peer support.
Information on the direct payments scheme comes from Persaldo, the "user
union". Information is available in writing and via the telephone.
Presently, there are up to 400 calls a day, since the scheme is new. In
disputes over funding users can appeal in court. If dispute is with PAs,
there is no formal procedure and Persaldo' s staff will try to mediate.
Concerning user training, the direct payment scheme is so new that no formal
training exists at this moment. Training modules are in preparation. The
emphasis will be on the differences between community-based local government
home care, on one hand, and personal assistance and direct payments, on
the other; as well as on self-assessment. The IL Movement needs to build
up an infra-structure. Users with learning disabilities are covered by the
new scheme. The need for user support is included in the amount of money
There is no real information from government. The CILs spread information,
for example through a monthly magazine. Information also available by telephone.
Information is through media; specialised programmes in TV or radio, and
newsletters for particular disability groups. Prague organisation of disabled
people provides information to individuals. There is a philosophy of individualised
counselling. The government does not provide information, but they fund
organisations to provide it. Users are trained in how to recruit PAs, but
users are responsible to solving problems with their PAs by themselves.
There is a methods manual.
The Moscow Society of Disabled People have a monthly newsletter, which has
information on life and rights of disabled people. There is a federal law
devoted to our problems.
The plan is to have a national training agency for personal assistants,
making personal assistance into a real job. Presently about 20% of PA training
is done by the organisation, about 80% by the user. The organisation trains
them about independent living and about health and safety.
Participants noted the difficulties of CILs in finding experienced PA users
for providing peer support. There do not seem to be enough people who have
qualifications, time and interest to provide such services over longer periods
of time. One solution is to hire people and train them thereby providing
employment opportunities. In this way, however, the way is open to "professionalisation
of peers" with more and more courses and an increasing gap in status
between "counsellor" and "client". As one participant
expressed, "if you have to book time, pay for the appointment and find
yourself in an office with diplomas on the wall, the fact that the person
behind the desk also uses a wheelchair becomes secondary". One solution
to avoiding unwanted professionalisation is to provide peer support mainly
in groups where participants share their experiences on an equal level.
There was agreement that solutions have to be found to enable persons with
intellectual disabilities to use direct payment schemes for personal assistance.
"Deputy bosses" have a very powerful position and need to be supervised.
People with progressive impairments sometimes come to a point where they
no longer can function themselves as employers/supervisors of their assistants
due to intellectual disabilities arising from their condition. It is very
difficult to convince such persons of the need for a deputy boss.
(The summary was prepared by Adolf Ratzka based on notes provided by Frances
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the above summary there may be omissions or outright misrepresentations
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