10.1 Health is a state of complete physical, mental, emotional and social well-being and not merely an absence of disease or infirmity. Like the rest of the population, people with disabilities aspire to live in the best possible state of health and wish to have access to a full range of quality health services. Up to now, the needs of people with disabilities have almost always been met on a medical basis; thus many services which are not medical in nature, e.g., training and employment, have inappropriately been provided under the aegis of the Department of Health.
10.2 Health and personal social services have evolved over the years in response to a multiplicity of needs and pressures. This has resulted in services which are in need of a much greater degree of co-ordination. Consumer experience indicates that disability awareness training for health professionals of every discipline would be desirable. Submissions to the Commission also remark on a bias in the health services towards a cure rather than a care model.
10.3 Submissions to the Commission and statements at listening meetings showed that people with disabilities, parents and carers have serious concerns as to the quality of some existing services and about the lack of some fundamental services. Problems experienced with services include:
- Inaccessibility of hospitals, health centres and doctors' surgeries;
- The concentration of vital services in Dublin;
- The unpredictable availability and underfunding of community services
- Such as home helps and respite care;
- A widespread lack of disability awareness;
- The lack of consumer control of services;
- Lack of clearly defined complaints procedures.
10.4 In formulating its recommendations, the Commission sought to build on proposals set out in the health strategy document Shaping a Healthier Future. The Commission broadly agrees with the objectives, principles and philosophy of the strategy, and looks forward to a real commitment from the Department of Health and health authorities to its implementation over the next few years.
10.5 A visit or stay in a hospital/health facility can be a traumatic experience for many people with disabilities and their carers. Many hospitals, clinics, Health Board offices and other health facilities are not accessible or user friendly to people with disabilities. For example, many have steps but no ramps, narrow doors, unsuitable toilet facilities, no provision for communicating in Braille, or through sign language, and outside, high kerbs and lack of suitable car parking. Hospitals and other settings in which services are provided should be accessible both externally and internally.
10.6 Long periods of waiting in outpatient departments can cause discomfort and distress for some people with certain disabilities. Some of the special hospital and residential care facilities are located in buildings or provide accommodation which is inappropriate and below an acceptable standard.
10.7 In many instances children, adults and carers have to travel long distances, often at their own expense, for assessment or treatment. This is due to the concentration of services in the larger centres of population, particularly in Dublin. In this context the Commission welcomes the commitment in the Department of Health strategy document "Shaping a Healthier Future" to the development of regional services.
10.8 Relatives of people with disabilities who are attending a specialist service which is a long distance from their home should receive support in making regular visits to them. This is especially important in relation to children with disabilities. Such support may include free travel, crèche facilities etc. Ambulances for both routine and emergency admissions must be equipped to transport all persons including those in electric wheelchairs.
10.9 When a diagnosis, the impact of which is disabling is being given to a person, doctors should be required to advise the individual, or their family as appropriate, of the Disability Support Service (see Chapter 4) and the location of the nearest Resource Centre. A hospital based key worker should be allocated to each person who can facilitate communications between hospital staff, family and the person with a disability. This key worker would also be responsible for making arrangements to inform all relevant community services prior to the person's discharge.
10.10 Close liaison is required between hospital maternity units and all community services for children with disabilities. The key worker mentioned above should ensure that on discharge, parents of a child with a disability are allocated a key worker in their local Health Board to facilitate the effective delivery of services.
10.11 Staff in casualty departments must receive disability awareness training as a matter of urgency and the Department of Health should issue guidelines to casualty departments as soon as possible setting standards for the appropriate treatment of people with disabilities. All hospital staff at all levels should receive disability awareness training which addresses basic customer service and basic skills in dealing with people with disabilities.
10.12 In relation to use of scarce resources in the Health Services Persons with a disability offer opportunities for major health and social gain, which is now one of the key organising principles for the service. The Commission, therefore, recommends that special service programmes are organised for persons in this group which provide rapid and convenient access to relevant services designed to improve the overall quality and independence of their lives. In doing so, the service should reach out in a pro-active way to ensure that such a person is never inadvertently excluded because of his or her disability.
Community Care Services
10.13 The Department of Health has had a policy of providing a wide range of services in the community instead of in large institutions since publishing its health strategy Shaping a Healthier Future in 1994. Unfortunately, the shift to community-based services has not been smooth and community care services have developed in an unplanned and uncoordinated fashion. Some vital health and social services are excellent in some areas and totally absent in others. These vital services include personal care, home help and home care attendant services; psychological, occupational and psychiatric support services; occupational therapy, physiotherapy, and speech therapy; social work services.
10.14 Certain groups of people with disabilities have particular difficulty gaining access to health and personal social services. They include:
- People with brain damage as a result of accidents or other causes;
- People with rare syndromes;
- People with dual or multiple disabilities
- People with more significant disabilities and behavioural problems, who are sometimes treated as a lesser priority.
10.15 New services will have to be developed for people with disabilities in a co-ordinated and innovative way with service providers working together in partnership arrangements. For example, it is clear that few resources have been invested in the development of services for people with physical and sensory disabilities and that there may be insufficient funds to meet the huge range of service needs of this group over the next few years.
10.16 All surgical and medical appliances should be supplied free of charge to holders of the Long Term Illness Card. Health Act procedures for the supply of technical aids should be redefined ensuring that there is an adequate definition for technical aids and equipment and standard procedures for assessing requirements. The provision in the Act which allows refunds for medical and surgical appliances should be implemented. Research into the development of technical aids and equipment should be encouraged by government, and people with disabilities should be involved in the design of such research. Additional funding is required to ensure that there is a comprehensive supply of technical aids, as well as rapid, efficient assessment procedures. Money should also be provided by the Department of Health for the next five years for repair services for technical aids.
10.17 Day activity centres should be further developed nationwide on a permanent basis with appropriately trained staff and access to all modern therapies, including music, art, drama and alternative therapies like aromatherapy and reflexology etc.
10.18 Due regard should be taken in account of the particular needs of people with mental health/emotional difficulties and/or behavioural difficulties, as many of them have been excluded from a lot of the existing day activity centres and thus continue to experience social and recreational exclusion.
10.19 Three services are of vital importance to people with disabilities:
- The home help scheme;
- Residential respite care;
- Personal assistance
10.20 The present role of home help assistants should be extended to provide more comprehensive care, including personal care as well as household duties and care at unsociable hours, where that is needed. Home help assistants should receive a basic training which includes disability awareness training as well as education about proper personal care assistance. Schemes such as the Home Care Attendance Scheme are to be welcomed. This Scheme is flexible and available at short notice to people with disabilities.
10.21 Respite care is a crucial element in community support services for people with disabilities. In recent years there has been a considerable expansion of this service for people with learning disabilities in the Mental Handicap area and there needs to be a similar expansion for those with a physical/sensory disability. The service should be flexible, including a range of options including home support, organised holidays and residential care. Sufficient funding should be provided to ensure a suitable service in terms of quality and frequency to all those who need it. Services should not be developed using inappropriate health/hospital buildings, which would continue the isolation of those least powerful in society. The Department of Health should develop minimum standards for respite care facilities and ensure that all new and existing units comply with those standards.
10.22 Personal assistance services should be provided for people with significant physical disabilities. A personal assistant, a concept coming from the Independent Living Movement, is someone employed directly by a person with a disability to assist him/her in participating in everyday life at home, school, work, or leisure activities. They are trained for their role through formal and informal training in which people with disabilities are fully involved. They facilitate Independent Living, which concerns empowering people with disabilities to live as they want, with the same choices as people without disabilities, using mainstream services and taking control over their own lives.
The Commission welcomes recent developments in peer counselling and peer support amongst people with disabilities. For example, there are now 5 trained deaf counsellors for deaf people. The Commission recommends that further ongoing support and development of these services should be given by the Departments of Health and Social Welfare.
10.23 Additional revenue funding should be provided over a five-year period to address current shortfalls in services for people with disabilities including
- Day services
- Therapy services such as occupational therapy, speech therapy, and
- Respite care
- Personal assistance services for people with significant disabilities
- Peer counselling and peer support
- Counselling including genetic counselling
- Residential care
10.24 GPs surgeries should be adapted where necessary to make them accessible to people with disabilities. The cost of such adaptation could be met from the general practice development fund and the indicative drug target scheme. The practice of having specialist outpatient clinics in general practice settings should be promoted and expanded.
10.25 The Commission recommends the development throughout the country of units specialising in continuing therapeutic care for people who have been discharged from medical rehabilitation centres (e.g., for paraplegia due to road traffic accident). Such units would be staffed by teams consisting of physiotherapists, occupational therapists, nurses and social workers, who would have ongoing supervision from the relevant specialised centre from which a patient had returned. In the central unit they would have regular refresher courses, training in new techniques, and opportunity to familiarise themselves with the individual treatment needs of any patient destined to return to their area. Other examples of people who would benefit greatly from such an approach would be the post-operative patient with a heart-lung transplant who now needs home care and special physiotherapy, the haemophiliac patient needing special regulation of their clotting factors and physiotherapy for the knee, the person suffering from juvenile diabetes etc.
Health Service Attitudes
10.26 The Commission heard and received complaints about the manner in which some health service personnel treat and communicate with people with disabilities, their parents and carers. This experience indicates the need for disability awareness training. The training of health care staff should therefore include a comprehensive disability awareness module designed in consultation with the Council for the Status of People with Disabilities.
Disability awareness training should be provided for all doctors at both undergraduate and postgraduate levels. And, as stated earlier, staff in casualty departments must receive disability awareness training as a matter of urgency. All hospital staff at all levels should receive disability awareness training which addresses basic customer service and basic skills in dealing with people with disabilities.
10.27 National standards should be set by the Department of Health for services provided to persons with a disability in the community. These should apply to medical, nursing, and paramedical staff.
A review of selection criteria for health care training should be undertaken with an increased emphasis on choosing candidates with interpersonal skills. This should involve assessing attitudes and personality via an interview prior to selection.
A postgraduate course for medical and paramedical personnel should be devised to improve their communications with people with disabilities. Such communications training will need constant revision using continuing medical education techniques developed by various medical bodies. A large number of health care staff have graduated without any training in communication skills or disability awareness whatsoever, as such courses are only recent additions to university curricula.
10.28 General practitioners and other community care personnel should receive up-dated training in screening and detection of persons at risk.
10.29 Genetic counselling services should be available nationwide as a matter of urgency.
Consumer Choice And Legal Rights
10.30 People with disabilities, their parents and carers complained about the lack of consumer participation in the planning and evaluation of health and social services and many felt that there should be structures to facilitate feedback from people using the services. In some cases, e.g., where clients cannot speak for themselves, parents were fearful of demanding a better quality service, in case the service they were getting was withdrawn.
Ways of maximising choice of service should be examined. For example, people with disabilities or their carers could be given control, either direct or indirect, of part or all of their allocation of resources for the purchase of services.
10.31 Case conferences concerning a person with a disability should include the person themselves and their family, as appropriate, as well as professionals from community and hospital services.
10.32 Medical and paramedical education should actively address patients' rights. The right to hear one's diagnosis in a sensitive and humane manner should be recognised. Medical personnel should be obliged to inform patients of all significant effects of therapy, including pharmaceutical preparations, surgical and investigative procedures, electroconvulsive shock therapy, psychological interventions and so on.
10.33 All persons, having been fully informed of their rights, can refuse to undergo treatment. This right of refusal must be respected by professionals and such a refusal should not interfere with the right of people to receive any other form of recommended treatment to which they give informed consent.
The Department of Health should issue a code of practice to deal with situations where it is legally possible to institute treatment without consent. Legal safeguards should exist to prevent abuse of people receiving such treatment.
10.34 Patients must give full and free consent before participating with doctors/nurses in medical tutorials, examinations or case conferences.
10.35 No person should be overlooked for treatment or have treatment delayed or curtailed because of a disability.
10.36 Effective complaint procedures should be developed and operated by each Health Board. Rights advisers must be employed in every psychiatric hospital and there should be a Patient Advocate, not employed by the Department of Health, in every hospital.
10.37 Operational policies, including complaints procedures, in psychiatric facilities are reviewed by the Inspectorate of Mental Hospitals in the course of its annual statutory inspection of those facilities. Under the new legislation, the powers and duties of the Inspectorate of Mental Hospitals under the Mental Treatment Act, 1945 will be vested in a Commission for Mental Health Services.
10.38 In reviewing the legality and appropriateness of detention the Mental Health Review Board should ensure that patients' clinical conditions are such as to warrant detention.
10.39 The families of people who are mentally ill or experience emotional difficulties should be provided with counselling and education by the Health Boards.
10.40 A sign language interpreter service should be available to facilitate deaf persons in accessing health services.
10.41 Each Health Board should review existing levels of services with reference to the principles of equity, accountability and quality of service and draw up five year plans to provide comprehensive community-based services for people with disabilities. These plans must be submitted to the Minister for Health by July 1, 1997, for approval.
10.42 The policy report for mental health services, Planning for the Future, and for mental handicap services, Needs and Abilities, should be reviewed urgently. The Commission welcomes the imminent publication of the report of the Review Group on Physical and Sensory Disability.
10.43 The government should implement forthwith its policy to appoint advisory committees to each health authority in line with the recommendation of the national health strategy. Such committees should be comprised of consumer groups including people with disabilities and should have access to senior management levels.
10.44 As set out in Shaping a Healthier Future, complaints procedures should be developed and there should be a statutory obligation on each health authority to provide feedback on consumer opinions to the Minister for Health.
10.45 The Commission recommends that each Health Board take's a consistent approach to the changes expected of them as a result of the Health Strategy, to ensure an equitable service nationwide.