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Report of docs1/ENIL Seminar on
Personal Assistance

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.

Organization

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 of service).

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 JAG.

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 insurance office.

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.

Training

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 work.

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 aspects: Anna Tengström
JAG
Regeringsgatan 67
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. AR


Legislative and Financial Basis

Britain

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 entitlements."

Norway

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).

Germany

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.

Sweden

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.

Finland

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 workers.

Netherlands

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.

Austria

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.

Spain

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.

Belgium

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.

Discussion

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.


Organisational solutions

Britain

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.

Germany

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.

Sweden

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.

Netherlands

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.

Finland

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.

Discussion

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 freedom.

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

Norway

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 communications.

Germany

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.

UK

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.

Sweden

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.

Finland

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.

Netherlands

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 paid out.

Austria

There is no real information from government. The CILs spread information, for example through a monthly magazine. Information also available by telephone.

Czech Republic

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.

Russia

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.

Ireland

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.

Discussion

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 Hasler.)
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