Vulnerable people

23.1 The Commission made a special commitment from the outset to give a high priority to the concerns of very vulnerable or marginalised groups of people with disabilities. Particular groups and individuals may be vulnerable on account of the severity of their disability; the low numbers with the particular disability; especially unhelpful public attitudes; a lack of public or professional awareness of special needs and concerns; or a combination of these factors.

23.2 Many of the recommendations already made in this report are of relevance to those who are especially vulnerable. But extra care should, and must, be taken to ensure that their rights are as well protected as those of any group in society.

23.3 In this part of the report, the Commission addresses the special concerns of four groups of people whom it regards as particularly vulnerable:

  • Highly dependent people with severe or profound disabilities (e.g. people with intellectual disability (mental handicap))
  • People with rare disabilities
  • People with spinal injuries
  • People with head traumas

Highly Dependent People with Disabilities

23.4 People with intellectual disabilities who are very highly dependent as a result of severe and profound levels of intellectual disability are a particularly vulnerable group. They will inevitably be dependent on significant state support throughout their lives, irrespective of the resources of their families. Thus, the state has a special responsibility to act as guarantor of their health services, safety, and quality of life. Their vulnerability and dependency require special measures to protect their interests and maximise any possibilities that they may have for exercising personal choices.

23.5 The Commission's proposals in relation to personal support services are especially important for this group of people. They have the highest dependence on services and supports provided by both the state and nongovernmental organisations. They often have little opportunity to make their own case.

23.6 For those highly dependent people living at home, high quality day activity services, with accessible transport, are an essential part of the necessary services. Day activity services tend to have a low priority and their availability differs widely between Health Boards and within Health Boards. The Commission has already recommended that day activity services should be part of the core personal support services to be provided as part of Community Action Plans (Chapter 3). The entitlement of a person with a severe disability to this service should be no less than that of more able people with disabilities to, say, work or vocational training. Health Boards should be adequately funded by the Department of Health to enable them to secure the development of the necessary quality day services for their area.

23.7 The well-being of people with severe or profound disabilities who are living at home is bound up inevitably with the well-being of their carers. Financial support for carers is an essential part of an equality strategy which aims at maximising independence for people with disabilities. Respite care is a requirement in every Health Board area.

23.8 Many elderly carers who attended the Commission's listening meetings were providing care, on their own, for a severely disabled family member, usually a son or daughter. These carers, unbelievably, are deprived of the living alone allowance and attendant benefits in such circumstances although it is obvious that the son or daughter can make no contribution whatever to the family income. The Commission recommends that where a carer is providing care for a family member in receipt of the Disability Allowance he or she should qualify for any allowances or benefits for which they would otherwise be eligible.

23.9 The Commission's recommendations aimed at safeguarding the rights and dignity of people with disabilities who are users of services are particularly relevant to highly dependent people with disabilities living in residential care. The proposals for a Charter of Rights for people in residential centres (Chapter 12: Housing and Accommodation) cover issues such as access to information and records; advocacy and representation; complaints procedures; the right to dignity and respect; and the right to a personal income.

23.10 These are important for all people with disabilities but the following have a special relevance for highly dependent people:

  • A system of advocacy: it is important to put in place additional supports to maximise the independence and possibilities for choice for the residents of long-stay services. The sense of powerlessness of this group requires an investment in such measures. The post of advocate needs to be established by statute. Each Health Board should be required to appoint at least one trained advocate on behalf of residents in long-stay services.
  • Complaints procedures: every agency should be required to have a complaints procedure and to make it known to families and advocates.
  • The right to a personal income:· many people in residential care receive only a nominal discretionary payment and some receive no income at all, a situation which was strongly criticised by the Ombudsman in his 1992 report. The person with a disability in residential care should have the same entitlement to an income as the person living in the community. The personal income of a person with a disability in residential care should be paid directly to the individual, or an advocate or trustee on their behalf. A reasonable amount should then be charged to them for rent and board.
  • The right to other services: the needs of people with disabilities living in residential institutions tend to be seen sometimes only in terms of accommodation or shelter. Individual service and support requirements for day activity, employment, leisure, therapy or other services - must have equal standing with the service needs of people with disabilities living in the community. Consequently, the Commission proposes that the person with a disability in residential care should have appropriate access to the local Disability Support Service and a personal support coordinator.
  • Overseeing and monitoring standards: all types of residential services need a comprehensive and adequately resourced monitoring service with sufficient powers to ensure that standards are implemented in practice. Visiting committees should be established for residential care institutions. The National Disability Authority should have a clear brief in relation to the monitoring of standards in residential care services.

23.11 The allocation of a place to a person with a severe disability in a particular service should be done on foot of an independent assessment in which the person's family or advocate would participate fully. There should be statutory entitlement to this assessment process.

23.12 Where a recommendation has been made for a specific placement, any proposal to refuse admission to an individual should have to be referred to an arbitration process within the Health Board. Arbitration should be carried out by independent third parties with appropriate expertise. There must be a similar procedure for any proposal to terminate a particular placement against the wishes of the person with a disability or their family.

Funding Strategies for Service Delivery

23.13 The Commission welcomes the proposals in Shaping a Healthier Future (the Department of Health's strategy document) for funding service agreements between the voluntary sector and the health authorities. Within this framework, it is necessary to link funding to the service needs of individuals with disabilities.

23.14 The Commission recommends a two-tier funding structure in order to achieve this. The first tier should be a graded capitation grant which would take account of the level of severity of the person's disability. This grant should follow the person, irrespective of the source of the service.

The second tier should be related to the overhead costs of providing a particular service. It should be based on a formula which would take account of the size of the service, thus protecting smaller services or those with variable numbers from unreasonable fluctuations in their income.

23.15 The Commission also recommends that the revenue budgets of Health Boards should be structured in such a way that personal support services for people with disabilities should be ring-fenced. Such services should not have to compete with other areas like hospital services.

23.16 Funding restrictions in the past resulted in significant variations in the quality of services for people with severe and profound intellectual disabilities. Cuts in the late 1980s and early 1990s made it extremely difficult for Health Boards to implement the Planning for the Future policy. As a result there are still more than 1,200 people classed as having mental handicap in psychiatric hospitals. The transfer of such people to voluntary agencies envisaged in the Needs and Abilities Report did not happen.

In the main, the Health Boards have not been able to develop an appropriate service of their own although they are obliged to provide a "last resort" option for people with the most difficult and challenging behaviour. This option does not only apply to people with intellectual disabilities but also to people with multiple disabilities such as those who are deaf/blind.

23.17 The Commission strongly recommends that the proposals in Planning for the Future be implemented in full as a matter of urgency.

23.18 In addition, the situation of people with intellectual and other disabilities currently living in psychiatric hospitals warrants specific action. The Commission visited a number of these institutions and was greatly shocked by the poor standards of the physical accommodation in some of them.

23.19 After analysing the reasons for such grossly unsatisfactory conditions, the Commission is satisfied that the statutory authorities responsible for them were unable to implement their replacement plans mainly due to a lack of capital resources. The Commission appreciates fully the demands on national resources for funds to develop and improve services in all sectors of the economy. However, the funds available in this area have been too small and too thinly spread. The Commission is also aware of the potential demand for new revenue expenditure as a result of capital investment: in this area, capital spending on replacement projects would not generate large extra costs because existing staff would be redeployed.

23.20 The Commission believes that the time is opportune for a special programme to replace sub-standard facilities for people with disabilities. This programme must be protected from normal competition for scarce funds and should be managed by a special group of experienced professionals from within the Department of Health and the Health Boards.

Accordingly, the Commission strongly recommends:

  • A special capital fund be created and designated for the replacement of existing sub-standard facilities being used by people with disabilities.
  • The replacement programme should be managed by a special unit to be set up within the Department of Health.

23.21 The fund should be directed on a priority basis to the replacement of the worst facilities throughout the country.

23.22 The total programme should be completed within five years.

  • The replacement facilities should reflect current thinking about design in terms of the lifestyle of the people with disabilities concerned.
  • That these recommendations be implemented by the Government as a matter of urgency so that these unacceptable and degrading facilities can be eliminated.

23.23 Among the institutions visited by the Commission was St Ita's Hospital, Portrane where 347 people with intellectual disabilities are accommodated. The Commission was impressed by the Eastern Health Board's plans to improve these facilities but it has been unable to implement them because of a lack of funds. Because of the large number of people in St Ita's, the Commission is especially anxious that it should be among the first to be replaced under the programme recommended above.

People With Rare Disabilities

23.24 There are many recognised disabilities in Ireland. The majority of them are rare in that the number of people who have them is relatively small. But the effects of these disabilities is the same and the extent to which they affect individuals, their families and the community around them is intense. The consequences of many rare disabilities are compounded by the extra sense of isolation, lack of understanding, and lack of adequate research and back-up which are caused in many cases by the rarity of the condition.

23.25 The Commission recommends that a National Centre for rare disabilities be established and located in a modern teaching facility such as the new Tallaght hospital. It should have satellite centres, linked by computer, in different parts of the country.

23.26 Such centres exist in other countries, such as Norway where they are known as "Frambu" centres. Their purpose is to provide services to individuals, to their families and to the community, through research and the development of a data base.

23.27 The main functions of the National Centre should be:

  • To improve the quality of life of people with rare disabilities;
  • To provide counselling and advice to families from the moment of diagnosis (and to help families searching for diagnosis);
  • To build up a national reservoir of knowledge about rare disabilities and to disseminate information about such conditions, their symptoms and consequences;
  • To inculcate a high degree of consciousness and sensitivity among professional staff towards such disabilities;
  • To act as a resource for professionals, especially in relation to diagnosis and course of treatment.

The National Centre should also encourage more awareness among and between families, to ease the isolation of those affected by rare disabilities, and to assist the formation of mutual support groups.

In some cases, it may be necessary to provide families with intensive training to help them cope with aspects of the disability. Such training should be available free at the National Centre and its satellite centres.

23.28 In the case of many forms of rare disabilities, families have to carry a disproportionate share of the burden. They often find themselves deprived of support simply because a disability is not adequately recognised. Many people with rare disabilities are denied the rights of people with more common disabilities, such as medical cards and free transport. There should be a fundamental review of entitlements to these facilities, and to family supports, to make sure that no form of long-term or life-long disability is arbitrarily excluded from them. A national database of rare disabilities would clearly be a valuable aid to policy in this area.

23.29 Many people with rare forms of disability have shorter life expectancies. All forms of counselling and support in such cases should therefore include the preparation of families for bereavement. This is especially important because of the emotional investment that families make in cases where the disability is not recognised sufficiently.

People With Spinal injuries

23.30 Although there is considerable medical and paramedical expertise in the treatment of people with spinal injuries in Ireland, serious inadequacies remain in the support services for this group of people. They need the impetus to build the confidence to take charge of their lives again and individual planning should take place before their discharge from hospital.

23.31 A full assessment of their requirements must be made, with their involvement, and reasonable accommodations made to enable them to return home and live as they choose. Disability awareness training with particular emphasis on spinal injuries, including their affects on sexuality, should be made available to medical and paramedical staff. A team comprising medical, nursing and paramedical staff with special training in spinal injuries must be available in each Health Board region. Training should also be given to public health nurses on treating people with spinal injuries.

23.32 The Commission also recommends that the Department of Health should fund the establishment of a transitional housing facility, possibly linked to the National Rehabilitation Hospital in Dun Laoghaire and similar to the Transhouse model in the UK. Annual funding should be provided to run such a facility.

People With Head Traumas

23.33 Among the groups of people with disabilities who are not catered for adequately are those suffering from head traumas or brain damage which causes permanent disabilities like paralysis, speech difficulties, emotional lability, and intermittent intellectual disabilities. These may be the results of accidents, sub- arachnoid haemorrhage (similar to strokes in young adults), meningitis, carbon monoxide poisoning, chronic drug addiction, or other conditions.

23.34 There is a need to provide information to families and carers of people affected by such disabilities. More counsellors should be trained and made available at Beaumont Hospital in Dublin and other acute hospitals where brain injuries are treated, as well as at the National Rehabilitation Hospital. Adequate supports and trained staff should also be made available in regional hospitals and at community level. The Department of Health should ensure that an adequate number of neuropsychologists are trained and available.

23.35 Public awareness of the situation of people with head traumas needs to be increased by the National Rehabilitation Board and other appropriate agencies. Hospitals, GPs and public services generally should be targeted in this regard. It is important, for instance, that teachers in schools should be aware of the adverse effects on pupils who have somebody suffering from a head trauma in the family.

23.36 The Department of Education should draw up a policy for the future education of children with head traumas, including readmission to mainstream education if appropriate. Suitable supports in the classroom and counselling should be provided at local levels.

23.37 People who have survived head traumas and are judged to be mentally incapable of managing their own affairs are taken into wardship by courts. In this situation, independent advocates should be available, if required, to represent their rights.

23.38 Research into the long-term needs of people with head traumas should be funded by the Department of Health and should inform decisions about compensation arising from accidents. In the interim, the statute of limitations in relation to claims for compensation for head traumas should be extended to ten years to allow assessments of longer term affects which were not foreseen when the initial diagnosis was made. Any compensation due should be awarded in such a way that spouses have conditional access to it.

23.39 The Department of Health should make annual funds available for the establishment of a "Headway House" to provide counselling, telephone helplines, day and visiting services. Suitable respite care facilities should also be established and funded separately by the department.

Other Groups With Special Concerns

23.40 The Commission also identified other groups as having particular concerns and needs over and beyond those of the general population with disabilities. These include young people with disabilities, people who are deaf/blind, elderly people, travellers with disabilities, gays and lesbians with disabilities. All these groups would be helped by targeted awareness programmes aimed at professionals working in disability fields as well as at the general public.

23.41 Health and personal support services for elderly people with disabilities and for travellers have been reviewed and are the subjects of development planning. There has been no similar focus on the concerns of young people with disabilities: there is a need to explore the special issues affecting them. Health Boards should address their personal support needs within the framework of the health development sector programme which targets services to particular groups or areas. The Commission urges the National Youth Council, in conjunction with the Council for the Status of People with Disabilities, to undertake in-depth consultation with young people with disabilities to document their concerns and bring them to the attention of policy makers and service providers. In doing so, particular attention should be paid to young people with disabilities in rural communities and in institutional care.