Regulation Conception
for the Act of the Rights of the Disabled
and Equalisation of their Opportunities

...continued

PART III:
RIGHTS AND SERVICES IN THE INTEREST OF THE EXERCISE OF BASIC RIGHTS

1. The problem of Part II is that the present rehabilitation system operates with extremely low efficiency, in an economically ineffective way and it does not contain the ideal of achieving the maximum possible independence (independent living).

The aim of Part II is in part to change the above situation and thereby create an institutional frame for the broadest spectrum of rehabilitation at present attainable, and in part, through this, to make those affected capable of independent living at the highest possible level.

Rehabilitation

Use of the rehabilitation services is free of charge for disabled persons.

As far as possible the rehabilitation services must be made available at the level of the local community where the disabled person concerned lives (community-based rehabilitation). The task of the community-based rehabilitation model is to provide the patient in need of rehabilitation with the appropriate concrete services (e.g. physiotherapy) at local level, in such a way that the patient and the immediate family are also taught the most important tasks. In addition to this, it must mobilise local resources, train local helpers and seek out local employment opportunities. Departures may be made from this principle in the case of services in the regional institutional system providing medical rehabilitation to be set up by this act linked to the existing system of medical institutions, and the services of the institutional system providing occupational rehabilitation (the institutional system defined in Parliamentary Resolution No.75/1997. (VII. 18)).

To ensure that the rehabilitation process can begin as soon as possible, regular screening tests must be conducted, beginning at the youngest possible age. Since early recognition of most diseases leading to disability and the various forms of disability can bring a substantial improvement, the health body which detects suspected disability must report the suspected disability to the local authority without delay so that the work of rehabilitation and development based on it can begin as soon as possible. It is the task of the local authorities to create the operating conditions for the provision of early care.

The compulsory eye screening tests and functional sight examination must be brought down to below the age of 3 years: the first test must be made at the age of 6 weeks, the second at 1 year and the third at 2 years. There is an obligation to report in force at present, but it does not work. Continuous or random monitoring and the use of sanctions where necessary must be applied to make the regulation effective in this area.

Determining the fact of disability up to the age of 18 years is the task of the following Professional Committees according to the Public Education Act:

• County (Budapest) Committee for the Examination of Learning Ability

• National Hearing Test Committee of Experts

• National Sight Test Committee of Experts

• National Speech Test Committee of Experts

It is the obligation of these committees

• to direct disabled children detected to the Rehabilitation Centre competent for the place of residence,

• at the same time to report the fact of detection to this Centre,

• and to issue a treatment book for the child. (Data recorded in the treatment book: personal data - to be kept to the essential minimum, the problem or symptoms detected, the time of examination, the name of the Rehabilitation Centre to which the child is directed, recommendation for prevention or development, as well as detailed personalised information on the problem, the need to respect transfer to the other institution, the operation and conditions of the system of care, signed by the parent or guardian (or the person accompanying the child to the test).

Determining the fact of disability above the age of 18 years is the task of the Permanent County Rehabilitation Professional Committees to be set up by the county authorities and operating under the professional supervision of the Ministry of Welfare. In order to ensure the appropriate interdisciplinary professional composition of the Committee, it must be ensured that the appropriate medical specialisations, a psychologist, psychiatrist, at least an expert in the evaluation of capabilities and a development expert are represented in it. Provisions must be made for the training of experts in the evaluation and development of capabilities, at higher or postgraduate level.

Tasks of the Permanent County Rehabilitation Professional Committees:

• to determine the fact of disability (make a diagnosis),

• to determine the extent of lost capability,

• to determine or estimate the remaining or developable capabilities,

• to plan a personalised rehabilitation programme, designate the professions and experts to be involved, estimate the time required for implementation of the planned programme,

• the expert collection of problems arising in care and services in the area of operation of the Rehabilitation Committee, elaboration of proposals for their solution and regular (annual) forwarding of these to the body maintaining the facilities, carrying out the task of professional monitoring, elaborating methodological recommendations,

• to inform the various service-providers of those undergoing rehabilitation.

The operating rules and precise scope of tasks of the committees determining the fact of disability below the age of 18 and above the age of 18 are set by the minister of welfare and the minister of culture and education in a regulation. The payment of benefits in cash and kind begins following their official report.

It is the duty of the Permanent County Rehabilitation Professional Committees to follow with attention the state of the disabled person and take the necessary measures.

In connection with development of the capabilities of disabled persons two alternatives can be proposed:

A) Rehabilitation Centres
The link missing in the Hungarian rehabilitation system needs to be created in the act for the Rehabilitation Centres One such centre is needed at the level of each region (4-5 for the whole country) since the greatest shortcoming in the Hungarian rehabilitation system is the lack of modern evaluation of capabilities, not merely for employment, and the subsequent targeted, high standard training. The most important background institutions for this training are the Rehabilitation Centres. Besides development following the broad estimation of capabilities, these also give advice aimed at physical and mental restoration and the fullest possible elimination of the consequences of the damage using high-standard procedures and instruments for the evaluation of capabilities, training and capability development procedures, equipment, machines and trained experts (principally experts in the estimation of capabilities, remedial teachers, rehabilitation consultants, physiotherapists, occupational therapists).

The Permanent County Rehabilitation Professional Committees provide professional supervision for the Rehabilitation Centres.

The activity of the Rehabilitation Centre can be divided into two main stages:

• Observation period: aimed at the broad assessment and development of capabilities. This must also include selection of the optimal occupation, although training for this is not given in the same institution.

• In the training period personalised, flexible methods are used to make the individual capable of more independent living.

The period of training for work and entry into employmentt: vocational training, the search for a suitable workplace and assisting adjustment to the workplace are carried out within the institutional system defined in Parliamentary resolution No.75/1997. (VII. 18) describing the organisational system of occupational rehabilitation.

In this way the Rehabilitation Centres would make it possible to reduce to a minimum the disadvantages arising from disability and appearing in everyday life. The network of rehabilitation centres must be created on a regional basis, but not necessarily within the frames of the state institutional system. The financial resources required for their establishment and operation are to be created in equal part from the central budget and within the budget frames of the county authorities, in 4-5 county centres. They do not necessarily require greenfields investment, but if an existing building is to be used it must be made obstacle-flee. Within each region the centres should as far as possible be set up in a county seat.

The Rehabilitation Centre does not mean imposing existing part elements on a physical location (building), but that the elements belong to a single institution. The bodies obliged to create and maintain the Centres, that is, the associated county authorities are free to decide in how many localities the necessary services will be provided and how many state, civil, local authority or even church authorities are to be involved in providing them, and also whether in part an already existing institutional system (welfare nurse network, family help centres, education guidance centres, etc.) will be used or developed to realise the tasks of the Rehabilitation Centres.

The tasks of the Rehabilitation Centres:

• early development,

• where required, special remedial teaching to assist the socialisation of disabled children of school age,

• family care in connection with the disability (training for parents, organisation and holding of training courses, informal and crisis management),

• help in fitness, maintenance and development treatment and training following medical rehabilitation in the strict sense (physiotherapy, therapeutic massage, therapeutic swimming, etc.), as far as possible at local, community level,

• forwarding individuals to organisations dealing with occupational rehabilitation,

• organisation and holding of training to help independent living,

• organisation and provision of personal services for persons already capable of independent living,

• following up and assisting persons already living independently.

The Rehabilitation Centres are in contact with the Permanent County Rehabilitation Professional Committees, the specialised medical rehabilitation institutions, the early development centres, the institutions for occupational rehabilitation and the community-based rehabilitation service of the local authorities. Where necessary, they make the services of these institutions available for the disabled client. They also serve as a source of information for disabled persons approaching them or for other elements in the network of services.

B) National system of Centres Helping the Disabled

The aim of the system

The proposed institutional system would operate basically as a dispatch centre and a county network of centres. It would consist of institutions requiring limited staff and investment. Its aim is to bring together disabled clients and the service-providers able to offer suitable services for them. In this way it would be possible to acquire an adequate overview of the disabled persons living in the given area, the nature and severity of their disability and their special requirements; an adequate overview would make possible rational, efficient and just allocation of the capacities of the institutions and organisations in the given area offering help and services.

To achieve this, its task is to supply information supporting decisions for the public financing and regulatory institutions and for the public institutions directly providing services.

Its tasks

From the side of the service-users:
Clients can use the services of the Centres helping the Disabled in four different ways:

• on the basis of voluntary presentation, processing the results of various screening tests,

• at the invitation of the institution, in the case of disabled persons under age and in guardianship (with limited ability to act or incapacitated) or on the basis of a summons,

• on the basis of referral by authorities (e.g. Professional Committees Determining Disability, the medical Committee determining the degree of work disability, labour and social authority dealing with the client on the basis of the obligation to co-operate), on the basis of the recommendation of health care, educational, social policy and other service-providing organisations.

What happens in the Centre Helping the Disabled?

The situation, needs and demands of the client are assessed; if required examinations by experts are requested on the condition of the client, the possibility of training and employment; an offer is made concerning the services which can be made available and the possibility of consultation is ensured so that the client can consider the offer and make his intentions and demands more precise.

From the side of results:

The primary product of the Centre Helping the Disabled is successful mediation. This can be: making the preparations for determining eligibility for benefits in cash; promoting the creation of an institutional legal relationship with an educational, social, health care or other institution; the establishment of an employment relationship; the beginning of training, retraining or a rehabilitation programme; admission to therapy.

Organisational conditions for the operation of the Centres Helping the Disabled:

Internal operating conditions: information technology, composition of the team (lawyer, doctor, social worker, remedial teacher, rehabilitation consultant).

The system of external, environmental conditions:

• The Committees determining disability for persons under 18 and persons over 18 must direct disabled persons to the centre.

• There must be a list of services to which the centre can mediate clients (e.g. institutions carrying out early screening, schools providing integrated schooling for disabled children, health rehabilitation service, sheltered workplace, retraining programmes for the disabled).

• Data reporting and mediating. Data reporting must also be set as a state administration task, as well as response procedures to mediation initiatives (e.g. the request may be rejected, but the institution approached must give the reasons in writing).

Creation of a Basic Programme for Independent Living

The Basic Programme differs from the Rehabilitation Fund handled by the institutional system of the labour market. Its annual budget is 500 million HUF.

The following can be financed from the Basic Programme:

• the investments required for a new type of small residential home solutions for no more than 12 persons to ease the strain on the present system of services,

• support for the development and use of new technologies helping the everyday life of disabled persons, the development and production of helpful aids and equipment,

• where necessary to conduct pilot studies on providing personal help and other helping services.

PART IV:
BENEFITS IN KIND AND CASH

Benefits in kind:
Disabled persons have the right - independently of their income situation - to access to the modern aids necessary for their condition and to their maintenance.

The detailed rules on the range of aids and their availability are to he defined in a regulation based on a proposal drawn up by the National Council on Disability Affairs which the Government is to set up with the present act.

After this act has been adopted, there is a need to rethink the system for the provision of therapeutic aids. The regulation must define the conditions for provision of prostheses, wheelchairs and technical aids in such a way that they are available to a wider circle than at present, in better quality and at lower cost for the disabled, especially for persons with severe or multiple disabilities.

Exemption from customs and VAT must be ensured for all technical aids and prostheses.

The institutions providing services

Preference is to be given for disabled children to remain in the family as far as possible. If they do not have a family or it is not suitable for receiving the child, an attempt must be made to find a foster family.

If an adult disabled person wishes to live alone at his own decision and his circumstances make this possible, he must be given the support needed for this.

In the absence of these solutions, the solution over the medium term is the creation of a network of residential homes for a maximum of 12 persons each, based on the principles of independent living, integration and normalisation.

Residential institutions caring for disabled persons may only be closed down if new small or small group residential homes providing at least the same standard of care have already been built to replace them.

Supporting services

Disabled persons have the right to individualised supporting services corresponding to their needs, regardless of whether they live in a residential community or in a social institution.

No one may be prevented by his material or income situation from using the supporting services he needs.

It is the task of the local authorities to progressively organise and continuously ensure the supporting services.

The disabled, their family members and organisations representing their interests must be involved in planning and establishing the supporting services and in evaluating their efficiency.

System of cash benefits for disabled persons

In the interest of creating equality of opportunity, in harmony with the tasks defined by the Parliamentary Resolution No. 75/1997. (VII.l8) and the principles formulated in the document on "Transformation of the System of Social Services" drawn up in the Ministry of Welfare, we consider that with co-ordinated planning, transformation of the system of cash benefits for the disabled over the long term is feasible.

An important step to be taken towards creation of equality of opportunity is the introduction of a compensation benefit for persons living with serious disability.

Basic principles:

• as a consequence of the provisions of the act, the disadvantages of persons with serious disability should be reduced, with the introduction of the compensation benefit their material and income situation should improve and as a consequence their chances of participation in society should also increase.

• The aim of the transformations and developments is for the benefits serving as the basis for livelihood to become universal, and to ensure rehabilitation services and cash benefits provided for disabled persons. Insurance and the central budget together must cover a basic income for persons unable to enter or return to the labour market. In the case of persons in different situations who have become seriously disabled for different reasons, the conditions for applying for the benefit and the sum of the benefit must be defined in a uniform way. The main cause for application for the benefit must be the serious disability; the conditions and sum of the benefit must be determined on this basis.

• In the wake of the co-ordinated developments, a special form of benefit for seriously disabled persons needs to be created only if they have no access to income from work or to an insurance-based benefit because of their serious disability, or the employment capacity of the labour market organisations or a combination of these factors.

• The system of benefits to be created will have a favourable influence for the targeted population also because it reduces the possibility of applying negative discrimination against them. As a result of the developments, successfully achieved rehabilitation would ensure to a greater extent than at present that their income relations are determined by the earnings achieved. Only in this way would it be possible to avoid the present situation among the disabled characterised by an extremely low income level in the majority of cases. As a consequence, income supplement benefits would be needed in a diminishing number of cases. It may become necessary to amend Act No. IV of 1991 to achieve this.

• The aim of developing the system of aid and the system providing benefits for disabled persons and persons with a changed capacity for work is to ensure the transfers and incomes serving as the basis of their livelihood.

The present act provides for a compensation benefit to which the disabled are entitled, independent of the income, aimed at equalising the chances of disabled persons.

Introduction of the benefit is also necessary because the present cash supports are too complex and multifarious, are not interlinked and in part overlap.

The regulations provide for differing entitlements and differing levels of benefits, in cases even where the same degree of disability is concerned. For most disability groups there are different regulations determining the benefits to which they are entitled on various grounds. The extent of these benefits differs from one disability type to another in a way that cannot be justified by the disadvantages arising from the disability or by characteristics depending on the disability.

The conception of Act No. III of 1993 also included a health impairment allowance which also would have extended the benefit to persons living with all types of disability.

The daily life of persons with serious disability involves substantial additional costs for both the disabled person and his family, so introduction of the compensation allowance would help to create equality of opportunity.

With the introduction of the compensation allowance, the state would recognise the differing requirements of the disabled and that the creation of equality of opportunity because of their situation can only be solved if the state compensates the disadvantage and income disadvantage with a benefit guaranteed by law.

The significance of the compensation allowance to be introduced is not that it balances in cash all disadvantages arising from the disability - under the present circumstances it is not possible to undertake this - but that it represents the right of disabled persons to balancing of the disadvantages in cash.

The cash compensation benefit to be introduced is independent of the size of the income and its payment is not restricted by a means test.

The cash compensation benefit to be introduced is normative; the basis for its award could be in principle:

a) age,

b) type of disability,

c) severity of the disability.

In connection with age, as a criterion of entitlement, three possibilities arise in principle:

A) only the period between childhood and retirement age would be taken into account, that is, active adulthood from the viewpoint of the possibility of participation in the labour market, or

B) only childhood would be excluded, meaning that everyone over 16 years of age would be entitled, or

C) only the period after award of the old-age pension would be excluded; persons with serious disability would receive this compensation allowance in childhood or under the age of 18 years too, in which case the higher child allowance could be terminated.

Independently of the above, the present regulation conception makes no proposal for categorisation by age

Taking into account the type of disability could be based on the fact that the additional costs arising from the disability are not identical for the different disabilities. (For example, calculations show that the additional costs of a person deaf in both ears are slightly below those of a physically disabled person using a wheelchair who is of the same age and social status.)

Taking into account the severity of the disability as a consideration increasing the justness of distribution causes certain difficulties: research surveying consumer habits would be needed to determine the equivalent incomes, the special needs arising from the disability and the extent of the benefit serving to compensate this. It is not possible to carry out such research during the preparation of the present act.

The extent of the compensation benefit

In view of the above, the following position could be adopted as a point of departure:

the maximum value of the compensation benefit in the case of serious or multiple disability could be identical to the minimum old-age pension. This sum, which could to a considerable extent compensate the additional costs of living with serious disability, is at present 10,700 HUF/month. The minimum would be identical to the present sum of the personal allowance for the blind which at present is 5,300 HUF/month. To ensure that the value is preserved, indexation needs to be introduced in the future.

The scope of persons entitled to the compensation allowance:
The reason for payment of the allowance is serious disability and the material and income disadvantages caused by serious disability, affecting the seriously disabled person or his family because of the serious disability.

There are several different categorisations, partly covering the concept and the scope of those involved, but only partly because the different definitions are overlapping and so none of the categories gives a precise figure. The data of the organisations representing the interests of disabled persons, the organisations paying the benefits, and even the specialised medical considerations and evaluations differ from each other. Summing up, it can be said that

• according to one categorisation - differing from the spirit of the present conception - 100 % disabled persons in groups I and II can be classified here (On the basis of figures for September 1995, there were 14,998 group I disabled persons and 92,789 group II disabled. The two groups together represent 117,778 persons.)

• the other categorisation takes into account members of the four main disability groups (blind, deaf, mentally handicapped and physically disabled) in a serious state. This would give a population of approximately 90,000 persons.

Thus, in order of magnitude:

• either it can he said that the benefit would apply to persons declared disabled in today's groups I and II In this circle consideration should be given to paying the compensation benefit also above retirement age. (According to data for September 1995 there are 14,998 group I disabled persons and 92,789 group II disabled persons. The total for the two groups is 117,778 persons. Of. this total, 64,920 persons are below retirement age (young) and 42,667 above retirement age. (Perhaps for this reason too it would be worth accepting persons qualified today as group I and II disabled as the scope of persons entitled to the compensation allowance because the biggest problems of determining and qualifying disability are not found here but in connection with determination of the 67 % disability required for entitlement to a disability pension. At the same time, it can be said that while this approach is logical, it is also formal.)

• or it can be said that the compensation benefit should be paid exclusively to the seriously disabled members of the four main disability groups (those blind in both eyes, those using a wheelchair for mobility, persons deaf in both ears and the moderately serious and seriously mentally handicapped), an approach that better corresponds to the spirit of the present conception.

Current benefits and the compensation benefit
The system of benefits to be created for persons with health impairment has two main elements, namely:

• benefit making up for lack of income or supplementing low income and

• a benefit to which recipients are entitled on the grounds of serious disability, independently of the size of income.

Benefits in the present system making up for the lack of income or supplementing income are the following:

• disability allowance (83/1987. MT regulation of the Council of Ministers),

• temporary and regular social allowance (3/1983. (EÐM-PM regulation of the Minister of Health and Minister of Finance),

• and the regular social aid (Act No. III of 1993).

In the future the uniform benefit must be determined in such a way that disabled persons in the most serious state receive the supplementary benefit independently of income. In this circle the following benefits exist at present:

• personal allowance for the blind (6/1971. EÐM regulation of the Minister of Health),

• higher family allowance (Act XXV of 1990),

• transport support for persons with serious physical disability (164/1995. Korm. Government regulation),

• support for diabetics (18/1987. EÐM regulation of the Minister of Health).

Potential source, planning of the compensation benefit:
The compensation allowance for seriously disabled persons would naturally not affect the support for diabetics. However, it would affect the personal allowance for the blind, the higher family allowance and a part of the transport support for persons with serious physical disability.

Personal allowance for the blind

All those who currently receive this allowance would receive the compensation allowance for seriously disabled persons on other grounds. The personal allowance for the blind already serves the purpose which the planned benefit is intended to serve in the case of the other disabilities. This benefit already harmonises well with the system of social benefits and it must therefore be anticipated that it will be retained over the long term.

The series of measures already begun - only the minimum sum will be raised - must be carried through consistently so that in a few years' time the personal allowance for the blind becomes a single-sum benefit independently of the life situation. Simultaneous payment of the higher family allowance represents a problem in the case of this benefit.

Transport support for persons with serious physical disability

The compensation allowance would replace part of this. It would leave the sum for purchase of a car unchanged within the transport support, although it is well known that this too is to be developed: a larger or better targeted sum should be spent for this purpose and it should be operated within a different scheme.

Application for and payment of the compensation benefit:
It is not justified to introduce a new qualifying system and corresponding new determination of disability before the Permanent Rehabilitation Professional Committees to be set up under the act begin operation.

In the future, social insurance payments and applications for the allowance would be made through the Permanent Rehabilitation Professional Committees.