Independent Living Institute

Report from the ENIL Seminar
Berlin, May 1-4, 1997

"Training on direct payments for personal assistance"

U.K. - report by Ann Macfarlane

Direct payments were legalised April 1st, 1997. This did not make direct payments compulsory, but it does allow local authorities to make direct payments if they want. Some authorities are keen to do this whereas others do not, and are not forced to do it which is the weakness of the Act.

There is a pilot project in London for which Ann is responsible in setting up Direct Payment Schemes.

The Department of Health gave money to BCODP to set up a national CIL (NCIL). The purpose of the centre is to focus on supporting local authorities in setting up Direct Payments Schemes and in training the local authorities in how to do this.

About one third of the local authorities are afraid to give direct payments, one reason is because they fear that disabled people will misuse the money.

This change of law came after seven years of intense campaigning, so it was considered a big success for the disability movement.

No one over 65 years of age is eligible for personal assistance via direct payment which is looked upon negatively by the disability movement. If the person turns 65 after indirect having benefited from the direct payment scheme, then he/she can keep this solution. One positive aspect of the new law is that other groups such as persons with mental health difficulties are eligible. There is an introduction of a charge which is means tested, even people on benefits will have to pay some charge. An individual can move around within the country but this will depend on the area to which he/she wants to move because as the law is not compulsory, some areas do not have to operate the direct payments system. The amount received is reasonble. It is to cover insurance, support and extra costs of assistance. One has to account for the money, there is a careful monitoring, which is audited. As far as assessment is concerned, the disability movement pushes for self-assessment, but the community care act says that assessment is to be made by a social worker.

A contribution has to be made based on income. The percentage varies from local authority to local authority. It is a percentage based on benefits and/or earnings plus savings. Both the individual and his family or partner are evaluated for the income basis. The ceiling of cost is 500 pounds per week, if more money is needed the institution is the other available choice. This is the official stand point yet many local authorities do pay over this 500 pound ceiling.

The trade union is starting to mobilise and to claim personal assistance as a civil rights issue. They may have an impact in the future.

The different possibilities the individual can use to administrate his/her assistance are the individual model, through a CIL or other disability organisation, or a payroll company.

Three key areas which BCODP feels were influential in changing the law are:

  1. Lobbying of politicians
  2. Support by the directors of the Social Services
  3. Research of the benefit of direct payments, quality of life, and cost-effectiveness etc.

Belgium - report by Jos Huys

There is no Direct Payment system in Belgium. There will be an IL project with fifteen persons chosen at random who are to receive personal assistance with Direct Payment. Each of them will be the employer, or at least it is thought so. The project will have a duration of one year from July 1997.

Due to strict legislation of the strong trade union, no one can work nights, sundays, or less than three hours. These limit the possiblity of working as a personal assistant, so there must be a law change, or co-operatives need to be considered employers in the health industry.

Holland - report by Lies Loo

Direct payments came into effect in July 1995. Help is limited to help in the home. The individual has the freedom of organising the help for which he/she is entitled. The unions were against Direct Payment but they were convinced that it is their interest not to create a race of slaves, by having persons receiving good wages for a decent job. The direct payments are based on a reasonable wage, but the budget is limited. Once the money is gone, there is no more. The assistance is organised through "Per Saldo" which is a collective of users, subsidised by the government. The government decided on one collective of users for which they had control, as they were afraid of abuse.

Assessement is based on a system of four levels - housekeeping, sophisticated housekeeping, personal care, and registered nursing. These levels receive different hourly rates. The help is means tested. If an individual has a high income, he/she has to pay 10 guilders per hour with a maximum of 250 guilders per week, and for a low income 5 guilders per week. There is a new assessement every six months.

Austria - report by Dorothea Brozek

There was a Federal Care Law passed in July 1993. Before this law was passed, each federal state had a separate law. This new law is not means tested. The amounts given for direct payments are too low. There are seven categories of medical assessement and the amount paid is a lump sum depending on the care needed. The assessment is based on units of help, going to the toilet is one unit and is calculated to take 20 minutes per day. There was a cut down last year especially for the help of those disabled people in nursing homes. The government has found that as the hourly rate payment increased individuals used the money themselves without going through the service providers. This means that the service providers lost money and considered this as an abuse by the individuals. Now there is a debate as there is a proposal saying that everyone should be obliged to use a service provider.

If the assistance need is more than four hours a day, the official standpoint is that the individual should live in an institution. If you fight for more money, because the amount covered by the Federal Care Law is to low, you can get money for your assistance from the Social Law.

Assistance is means tested with an evaluation of the family income. There was a new discussion as there was a proposal that only employees with a certain education can be employed. The IL movement in Austria interferred and was able to leave a loop hole allowing a freedom for the disabled persons who want to hire personal assistants without special nursing education.

The dream in Austria is to have enough money to cover the actual cost of personal assistance. Those who have assistance today have the institution as the official organiser when in actuality the disabled person themselves organises his/her assistance within the limits of the money provided to the institution on his/her behalf. There is no law, so assistance can not be taken for granted. The possibilities of help today are through the individual families, institutions or shelters.

The maximum amount one can receive for assistance is 3000 Schillings per month which is not means tested(Federal Care Law). This money is given to the local governments and they can keep the money and organise the assistance.

With the conservative government of today, there are less individuals going to the institutions, but the stress is being put on the individual family with disabled members. The debate is a subject of mistrust which results in the institutions being asked to exercise more control to see where the money is going. There is no accounting necessary of the money received from the state. The law says there is a right to control yet there are not the resources to enforce the control. Assessment of assistance is very strict. The system is similar to Germany with perfomance units used for assessment.

Germany - report by Uwe Frevert

In Germany, personal assistance is not compulsory. There has been a change in paragraph 3A which has the social department comparing the costs of assistance with the cost of institutions. The success of the government in this endeavor is freightening. The Regulations do not cover the real needs or aspects of self-determination. There are three levels upon which one can receive assistance/financing. Organizations receive twice as much money compared to what an individual would receive for administering assistance. This means that relatives are working on a voluntary basis - they receive little money for the work they do. In both cases the amount of money received for assistance is always less than needed in the different categories of help. Today assistance is administered 80% through families and 20% through organizations.

Organizations are reimbursed for the result not the hourly work. This is due to the system which has all assistance being registered in a catalogue form. Time schedules limit help, there is always a hurry to get the different tasks done. For instance, there is a foreseen eight minutes to help someone on the toilet, the process of getting out of bed, dressed and washed is to take only 30 minutes. The result is a digression and there is a high level of violence by volunteers in the family. The money goes directly to the relatives, a sum which is 30% less than that which the organisations receive for the same amount of hours. The maximum time of assistance a disabled individual can receive is five hours daily. The new regulation is income dependent. Organisations have to be lead by doctors and nurses and the organisations have a contract with the health insurances. Co-operatives have become less attractive. The implementation of the new regulation or national policy was on April 1, 1995. Before one was assessed by how much time one needed, now the assessement is based on units of care or the performance model. The policy workers disregarded the disability movement motivated by a lack in governmental funds. There is no co-operation with the trade unions. Today one can see personal assistance being confounded with care. The definition of personal assisstance and its idealogy are loosing foothold.

Germany as Sweden, does consider personal assistance as a rights issue. In Germany this right is not means tested where in England personal assistance is not considered a right and is means tested. In Germany there are three disadvantages with the personal assistance system. The money received is not sufficient. The right to assistance does include the elderly which is not the case in England or Sweden. Another disadvantage is that the medical view is bing used in assessing time needed, as this is estimated in units of care. The level of help considered is at the existance level not enough for living a full, normal life. The third disadvantage is that there is a total registration of the needs of each individual disabled person. A list can be found of all assistance required of each person, the list being that of the care units needed. It is decided by those who are responsible how often you are allowed to leave your house. There is no room for a quality of life.

This imperialism of health authorities is due to the medical view which is due to the professionalized disability movement and a strong professional care system. The language being used are the terms from the disability movement, yet in the regulation the meaning is not the same. One can see this in the interpretation of the meaning of "self-determination" and "personal assistance". There was a political decision taken not to allow the IL philosophy. This political reasoning lies behind the newly adopted regulation prompted as the government does not want to leave the choice of the individual/employeur model believing it to cost more.

Finland - report by Taija Heinonen

The local government has to provide some kind of assistance and housing for disabled people, yet there is no stipulation as how this is to be done. One possibility is through personal assistance. Many have chosen this solution as it is the best system for meeting needs. This option is available through out Finland.

The most recent developments - A group has been set up by the government to review regulations and privileges that disabled people recieve. One task, this study hopes to achieve, is to reduce the unemployment level within the disabled community. It is believed that one way to achieve this is through the promotion of personal assistance as without assistance the disabled are prevented from working. This solution is also a way of providing employment for the personal assistents rather than them being unemployed. This group has made proposals to review legislation regarding personal assistance. The disabled community hopes that the legislation promotes the use of the PA system.

As personal assistance is not obligatory, yet if the service is thought to be reasonable, some help will be provided by the local authorities. An individual can claim the need of personal assistance and try to fight for this, the fight will be long, yet there is a possibility of wining. The contributions are not means tested. Help can be reduced if the disabled person has a partner meaning that service is not always based on the actual needs of the individual rather on his/her situation. It is possible to have assistance at work and while travelling as well as in the home. The local government has the financial responsibility to pay for assistance. Assessment is done through a negotiation between the social worker and the user. The above mentioned proposal would have hours increased for employment possibility and more active lives. The payment for assistance is made directly to the personal assistant due to practical reasons, not to put the responsibility on the disabled individual. The user can choose his/her assistants and define the tasks. He/she is considered the formal employer. Help for the intellectually disabled is not organised through personal assistance, this social service is organised in other ways.

Czech Republic - Roman Herink

Personal assistance was introduced through Adolf Ratzka in 1991. Today the disabled community is struggling with the social ministry. A CIL was established in Prague in 1993. The government sees this as a project, meaning that during this time it is impossible to start other CILs. There has been one though which has existed illegally for five years in Zlin, Olomouc. There are 110 users of personal assistance in the country today, 60 in Prague and 50 in Allamons. This was possible as in this municipality there is a disabled civil servant.

The government agreed to start with a clean table, and the disabled community had three months to influence the social ministry with proposals in getting a bill and law for personal assistance. A week ago the fight came to a climax as the state's proposal was so bad that the disability movement had to petition against it. The state is asking itself if there is a need for personal assistance as they are under the impression that the assistance which they are already providing is of high standard. Those in the disabled community are asking the question if the government can afford them? Last friday was important as a new discussion began.

Norway - Bente Skansgard

Personal assistance is not covered by law, yet is possible to claim through the social security law. There are three ways to organize assistance:

  1. User in charge of everything with the money being controlled by the municipality or local government.
  2. Direct payment to user with the user administrating the money.
  3. Personal assistance through the co-operative form - the co-operative pays the salaries with the user organising the assistance.

Assessment is strict as not every individual is covered by law. Assessment is done through an application and then negotiation. The assistance acquired can correspond to the life style of the individual in need. It is more difficult to obtain assistance when an individual is only at home.

There is one co-operative in Norway and that is Uloba which has existed since five years. Uloba is now thriving. Uloba is worried with the idea that it is becoming like a local government and is considering limiting the co-operative's growth. Today there are 55 members with 25 different local governments. There are 110 employees with a turnover of 10 million krones. An individual can obtain 24 hours service per day if he/she has a breathing problem.

A committee in social affairs are looking at a law proposal.

Sweden - by Jamie Bolling

Sweden has a law claiming personal assistance as a right since 1994. For those who were not familiar with Sweden and its law, there was a short briefing of all the different ways from which someone can choose to organise personal assistance. These are as an individual, through a co-operative, with an assistance company, through the municipal services, or while living in a "Boende Service" something similar to the Fokus program. Today two thirds of the assistance hours are organised through the Independent Living organisations.

The recent developments in Sweden are that due to financial problems there are proposals being made to narrow the stipulations for individuals whom are covered by this law of right.

Bratislava - Adolf Ratzka

Through the Phare program Adolf organised and directed a program in Bratislava to obtain direct payment for personal assistance. As of January there is a new law for personal assistance which allows direct payment which is means tested. There are 21 users today covered in this program.

Another program Adolf sat in motion was an accessible taxi transport system.

Other issues discussed

One issue considered was that of we the user of assistance being the producer in contrast to the user of assistance. The process of organizing assistance was discussed and the different tasks that need to be considered.

  1. Who should provide information? The co-operatives or the authorities?
  2. People need to be trained for the assessment of their need of personal assistance.
  3. One needs to be prepared for the negotiation process.
  4. The administrative issues are the individual, the collective, the contracted service.
  5. We need training in the lobbying function which is our defense mechanism.
  6. The issues of training and financing are the tasks of the grass roots.
  7. The support issues need to be considered.
  8. We need to learn to get the accepted hourly rate to include all expenses incurred by personal assistance i.e. advertising, support, administration, training, assistance costs, vacations, sickness, on job training, insurance etc.

Arguments one can use for the coverage of administration expenses are that we provide services like a business, an active life incurs assistance costs, the necessity of support for users and assistents. Employment costs include sickness and rehabilitation. The need of equipment at the place of employment.

The need of anti-discrimination laws in individual countries and at the level of the European Union was discussed. A person in need of assistance is discriminated against if he does not have access to assistance. Our organizations deal with all the disability issues from housing, transport, employment accessibility, etc. and all these issues have discrimination aspects. We need to work on all levels in order to influence these issues, with the best way being through an anti-discrimination legislation.

The major problem of discrimination is that of ourselves. It appears that we as a group do not feel discriminated against. In Sweden a study was made which showed only 17% of disabled people over 50 years of age feeling that they are discriminated against, and 37% of those under 50 years of age. When this is so, it is hard to lobby for an anti-discrimination legislation.

In June there will be a meeting of the European Union during which they will consider including a clause for anti-discrimination. The initiative was taken by the Irish which was the beginning of the battle. We now all have to lobby our politicians for the inclusion of this clause. A unanimous decision is needed, and as of today Germany, France and Denmark are against the inclusion of the clause.

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