Delivering the necessary services
4.1 Existing supports and services for people with disabilities are poorly co- ordinated. People with disabilities and their families have great difficulty and experience serious frustration getting information about their entitlements and accessing these from the multiplicity of agencies which are involved in undertaking assessments and providing services. Professionals working in the field waste much time and energy on duplication.
4.2 The Commission believes a fundamental change in attitudes, procedures, and structures is required to give people with disabilities and their families easily accessible information and support that will empower them to make decisions about their lives.
4.3 A service to be known as the Disability Support Service (DSS), which will be the focal point of collection and distribution of information, should be established, and a national network of Disability Resource Centres set up. The Resource Centres will be a single point of contact for information, advice, support, and advocacy. Support Co-ordinators will be trained to guide individuals or their families through the range of services they might need at different stages in their life. The Disability Support Service will be accountable to the National Disability Authority.
4.4 These structures will deliver to people with disabilities information on all the supports they need whether medical, educational, work, training, housing and so on throughout their lives. The new structures will also ensure that the views of the person with a disability are fully taken into account. The keys to providing this support are:
- Assessment of needs, and
4.5 The Disability Support Service will be the focal point for gathering and distributing all relevant information for and from people with disabilities. All public bodies will have to adopt a culture where providing information is the norm, and public funding of non-governmental organisations should be dependent on their providing accessible information. People with disabilities should be included in preparing, monitoring and evaluating information.
4.6 The Disability Support Service, Disability Resource Centres, and Support Co-ordinators will all be crucial to ensuring that a proper assessment of needs is made at the onset of disability, an assessment resulting in a Statement of Needs which identifies the full spectrum of services required by that person from a range of agencies, as well as their financial needs.
4.7 Advocacy - self-advocacy and citizen's advocacy - will also play a critical part in giving individuals control of their lives. To this end, education and training in self-advocacy should form an integral part of the curriculum studied by people with disabilities. Citizen's advocates, independent of service providers, should be trained to help people not in a position to defend their rights. Independent advocacy services should be mandatory in residential care settings or similar services.
4.8 The structures and services created to deliver a person-centred continuum of support to every one with a disability or their families are all based on the philosophy that disability is a rights issue, that it is not medical conditions but society which handicaps people with disabilities and that it is society which needs to change. These support structures are designed to give people with disabilities the opportunity to grow, and most importantly, to give them the freedom and ability to access supports at an individual level and to decide what happens in their own lives.
4.9 The Disability Support Service should have two main components - Support Co-ordinators and Resource Centres. It should provide outreach activities to those in maternity and other hospitals, residential settings, remote areas or to those who otherwise might be unable to access the system. It should utilise existing structures, personnel and resources, where possible.
4.10 Improvements in information and advocacy, and more co-ordinated service provision, will make it easier for people to find and access what they need. Even with such improvements, however, some may still need assistance in finding their way through statutory and other procedures. No one should fail to receive a service they need and to which they are entitled because of bureaucratic or other barriers, real or perceived.
4.11 There are many organisations, both statutory and voluntary, that offer information and advice. None of these bodies has, however, the function or authority to guide and support individuals and/or their families through the range of services they might need at different life stages. The Commission proposes that this type of support should be made available to those who need it through Support Co-ordinators. Their role will be that of a supporter or enabler with the skills to negotiate with statutory and non-governmental organisations and make sure that the right package of services is provided to meet the need identified. Co-ordinators would not act as needs assessors or resource allocators: rather, their role would be to work with people with disabilities to help them understand their needs, entitlements and eligibility and to identify and help to negotiate appropriate provision for each individual. The role would vary according to the services and programmes needed by an individual to support maximum independence and a holistic lifestyle.
4.12 Services relating to personal/family supports where people might require assistance from a Support Co-ordinator in planning and securing a service include:
- Community nursing
- Day care
- Home help, home care attendance and home support
- Personal assistance
- Personal reader
- Recreation, leisure and sports
- Residential care
- Respite care
- Sign language interpreting
- Technical aids and appliances
- Escorts (buses, etc)
4.13 Other services such as transport, education, training/employment and so on may require less direct involvement by Support Co-ordinators: their involvement in these areas is likely to centre on providing information and support. The individual would, if he or she wished, deal directly with the appropriate agencies to identify specific needs and services required. However, if difficulties develop the Support Co-ordinator may intervene to help resolve them.
4.14 A Support Co-ordinator should be a valuable source of information to statutory and non-statutory agencies regarding local needs and adequacy of services: they should be represented in the Community Planning Groups proposed in the previous chapter.
4.15 To carry out this work, Support Co-ordinators will need access to detailed information on a wide range of services and an understanding of systems, processes and eligibility requirements. They will require considerable skill in communication, negotiation, network building, assertion, problem solving, team-working, and facilitation. An appropriate training programme will need to be designed and provided. To facilitate a local small-team approach, Support Coordinators should be drawn from a range of relevant professional and experiential backgrounds and should include people with disabilities.
4.16 The training programme for potential Support Co-ordinators should be developed by the Regional Technical Colleges, Universities and other Third Level education institutions in consultation with the Council for the Status of People with Disabilities and other relevant bodies. The programme should be available through the RTC's, Universities and other Third Level Institutions and should commence no later than 1997.
4.17 There should be clear performance measures and careful evaluation of the 'value added' by the co-ordinators. Performance standards and measures should be developed with the full involvement of users. It is suggested that an independent evaluation be carried out two years after the co-ordinators have been appointed and that appropriate funding should be provided for this evaluation.
Disability Resource Centres
4.18 Empowerment requires access to information. It should be possible for any citizen to get whatever information they require and to use it to identify and obtain the services they need and to which they are entitled. Some people may need the assistance of a Support Co-ordinator in this process: many will not. What they should have, however, is a single point of contact for information, advice, contacts/linkages and if necessary, support. These essential points of contact should be a national network of Disability Resource Centres. These Centres should be fully accessible and easily located. Sharing existing suitable premises should be explored in this context in due course.
4.19 In addition to providing up-to-date information on services available from government departments, health boards, local authorities, other statutory and voluntary bodies, the Centres would provide access to the Internet and to Handynet, the computerised database on technical aids and appliances. Centres should display a selection of technical aids of most general interest, such as security devices, etc., together with documentation in accessible formats. Individuals should, of course, continue to have direct access to agencies providing services.
4.20 The Disability Resource Centres will provide information, support and
- Advocacy in areas including:
- Rights, entitlements, services
- Community nursing
- Day care
- Home help, home care attendance and home support
- Personal assistance
- Personal reader
- Recreation, leisure and sports
- Residential care
- Respite care
- Sign language interpreting
- Technical aids and appliances
- Independent living/skills training
4.21 One of the clearest messages coming through to the Commission from people with disabilities has been the problem of access to information. People have expressed serious frustration with several aspects of the availability of information. In particular, there is frustration with its fragmentation, the absence of certain types of information, the absence of a timely source of information, and the absence of a single local centre where most information needs could be satisfied with minimum hardship. The vital questions of access to information including - who keeps it? how can I get it? what format is it in? - has come into even sharper focus with the advent of user-friendly computing and the information superhighway.
4.22 Information is essential to empowerment. Access to relevant, accurate and up- to-date information is a universal right of all people. Walsall Information Federation defined some of the barriers to information for people with disabilities as follows:
- People who are unaware of the existence of a particular service do not know that they need information and so are unable to ask for it
- Information is often available in the wrong form, e.g. print when people need voice recordings or Braille
- Many people with disabilities have low expectations and so are unlikely to try to seek out information or ask for help
- Mobility barriers inhibit people with disabilities from chasing after information
- Many people lack time and/or money to go chasing after information. In addition, many professionals appear reluctant to give access to information freely, appearing to defend institutions rather than prioritise customer satisfaction
- Information is sometimes presented in a way that makes it difficult to understand
- Those people who are not familiar with using information can find it particularly complicated and may not see its relevance
- Some people feel reluctant about approaching strangers or official organisations for help or may take great pride in being independent.
4.23 The Disability Support Service will disseminate information to people with disabilities, providing both technical and administrative support in relation to information systems or processes. The right to information should be included in legislation relating to all public services. The obligation to provide accessible information on a pro-active basis should be included among the conditions governing public funding to non-governmental organisations.
4.24 Improved physical access is needed to public and private organisations providing information, such as libraries and citizens' information centres. The information itself should be readily accessible and available if required, in different formats, such as braille, tape, computer disk and most of all in jargon free language.
4.25 Mainstream services will need to be supported in moving towards a culture where providing information to all citizens is the norm. Good sign posting, trained reception staff (including training in sign language and disability awareness), with positive attitudes to responding to requests for information and clear information about the services being offered are basic requirements.
4.26 People with disabilities should be included in the preparation of information and in its monitoring and evaluation. For example, the consumer panels planned by the Department of Social Welfare should include people with disabilities, as should the Telephone Users' Council and other user groups.
4.27 Public bodies will need support (like disability awareness training and handbooks) to implement the necessary changes required of them under any new legislation, policies or practices.
4.28 The Commission has been impressed by the cogency of the case put forward by many individuals with a disability at their listening meetings, for a more orderly, formal, sensitive and comprehensive response to their difficulties in their local setting. The Commission believes that the onset of disability should be met by an assessment process which identifies the total ramifications of the situation for that person, his/her family and those caring for him/her.
4.29 This response is presently unsatisfactory either because of the absence of assessments, or their inadequacy, or the manner in which they are organised and held. The situation is made worse by the presence of many agencies each acting without reference to the others.
4.30 At present, disability-related assessments are heavily reliant on a medical view of disability. In line with the Commission's view of the need for a rights based approach, it is recommended that assessments should be broadened beyond a medically based procedure, to a comprehensive, multi-disciplinary, person-centred assessment of disability, utilising self-assessment to the maximum extent possible. A multi-disciplinary approach could involve disciplines like occupational therapy, rehabilitation psychology, occupational psychology, compensatory education, medical services, counselling and social services.
4.31 Key issues which arise in relation to welfare for people with disabilities, their families and carers are the lack of a single assessment procedure and the lack of co-ordination between agencies in relation to assessments, providing services and making payments. Particular concerns in this regard have been highlighted in a recent report on means testing by the Comptroller and Auditor General, which identified no less than 42 means tested schemes operated by public bodies. There are a further range of schemes of relevance to people with disabilities including social insurance payments from the Department of Social Welfare, discretionary personal social services from the Health Boards and the Disabled Drivers Scheme and other tax rebates from the Revenue Commissioners. In addition to the general qualifying conditions which apply to all claimants, people with disabilities have to undergo an assessment of their degree of disability. This can result in people being assessed by several different agencies for basic entitlements. This often causes undue hardship to people with disabilities, their families and carers and gives rise to much frustration and despondency.
4.32 The Comptroller and Auditor General recommended a number of measures which would harmonise assessment of eligibility and achieve a more efficient service. These included the carrying out of assessments by a single agency and the introduction of a 'passport system' whereby qualification for one payment or service would lead to automatic entitlement to a range of other benefits and services. The qualifying conditions should, however, ensure against any misuse of the various schemes available to people with disabilities.
4.33 The Commission strongly supports these recommendations. It recommends as well that an inter-Departmental working group be set up, at assistant secretary level, by the Minister for Equality and Law Reform, comprising senior representatives from the Revenue Commissioners and the Departments of Health, Social Welfare, and Education to pursue the development of a single assessment procedure which would provide the person with a disability with a "passport" for a range of benefits. The group should in the course of its deliberations consult the Council for the Status of People with Disabilities and those agencies involved in the assessment of needs. The Commission recommends that the group be set up forthwith and report in six months.
4.34 The Commission recommends that in relation to each person with a disability the following system should be in place: there should be a new Assessment of Needs process, underpinned by law, with adequate arrangements made for its enforcement and monitoring and for an appeals procedure, and it should lead to a Statement of Needs.
4.35 A person with a disability who requires an assessment of needs should be able to arrange it directly or with the assistance of the Disability Support Service. Where the Disability Support Service is requested to support any individual in securing an Assessment of Needs, it should have the authority under the Disabilities Act to require an accredited agency to carry out such an assessment. The obligation on the agency to carry out an assessment on the direction of the Disability Support Service should be a condition of accreditation. Specific needs assessments would not themselves be carried out by the Disability Support Service as this could involve a conflict of roles between assessment and its advocacy and information functions.
4.36 The emphasis of the assessment process should be on the direct involvement of the person with a disability, or their family or advocate as appropriate. The process should be conducted only by an accredited agency and should respect the rights and dignity of the person at all times. The assessment process should ensure that:
- The specific needs of the individual are identified as early as possible, so that when they are met, the person will be able to participate in the mainstream of society;
- The needs identified are prioritised and timescaled by the person concerned or their family/advocate and the assessor(s);
- Every appropriate agency or service provider of the necessary services is identified.
4.37 The end result of the assessment process should be the Statement of Needs. A copy of this should be given to the person, or their family/advocate. The person with a disability may then access the services/supports directly or they may take it to the Support Co-ordinator at the Disability Resource Centre. A copy of the Statement of Needs which need not identify the individual should be sent to the Disability Support Service to assist in planning and coordinating services.
4.38 The prioritisation of needs should reflect the relative importance of each need in enabling the person to exercise his/her rights to participate to the fullest extent of his/her potential in the cultural, social, civil and economic activities of society. Any identified needs which prevent the person doing this must be met and where necessary budgetary provision should be made for them by the appropriate government department.
4.39 People with disabilities or their carers should be able to get an assessment, or access to the Disability Support Service to arrange one, either directly or through a GP or public health official - including area medical officers, community psychiatric nurses, public health nurses, physiotherapists, occupational therapists, etc. It should be stressed, however, that referral by any person other than the person themselves should be done only with the prior knowledge and consent of the individual concerned, their parents and/or advocate as appropriate.
4.40 The resulting Statement of Needs drawn up for each person requiring help should address the full spectrum of services required by that person, including those needs which are not met by existing services. The assessment procedure will assist in identifying and quantifying unmet service needs. To enable the Disability Support Service to co-ordinate the process of identifying and quantifying unmet service needs, it should receive a copy of each statement of needs.
4.41 Monitoring and evaluation of the assessment process will be a function of the National Disability Authority.
4.42 There should be a process for reviewing the implementation of the assessment of needs process. Review dates should be specified in relation to each assessment, using the following performance indicator measures:
- Is it user driven and user influenced?
- Is it effective?
- Is it accessible?
- Is it responsive to individual needs (in terms of outcomes for individuals)?
- Is the time taken to access the service reasonable?
- Is customer satisfaction level adequate?
Advocacy and Representation
4.43 Advocacy is concerned with getting one's needs, wants, opinions and hopes taken seriously and acted upon. It can take a number of different forms including self-advocacy, citizen's advocacy and patient advocacy. Representation is taken to mean representation by a professional adviser, such as a lawyer.
4.44 Self-advocacy involves the development by people with disabilities of the skills necessary to express their views to the fullest possible extent. Citizen's advocacy refers to the persuasive and supportive activities of trained selected volunteers and co-ordinating staff, who could also be people with disabilities, working on behalf of people with disabilities who are not in a good position to exercise or defend their rights as citizens. Citizens' advocates are unpaid and are independent of service providers. Working on a one-to-one basis, they attempt to foster respect for the rights and dignity of those whose interests they are representing. This may involve helping the person express his or her concerns and aspirations, obtaining day-to-day social, recreational, health and related services and providing other practical and emotional support. Patients' advocates are generally paid and are independent of the institution in which they are based. The range of activities would be similar to that carried out by a citizen's advocate.
4.45 The range and complexity of services available in a modern society through bureaucracies and so on place all citizens at a disadvantage in mastering these complexities. This however, is compounded in the case of people with disabilities and as a result, a special mechanism is needed to restore equality of opportunity for them.
4.46 The Commission believes that advocacy is essential because it allows people to participate more fully in society by expressing their own viewpoints, by participating in management and decision-making and by availing of the rights to which they are entitled.
4.47 Proper implementation of many of the Commission's recommendations is dependent on the availability of effective advocacy services. Advocacy services should be independent of service providers.
4.48 Recent years have seen a growth in self-advocacy groups. These groups are predominantly composed of individuals with learning disabilities who come together to discuss their individual and collective concerns at local level, either in the context of a training environment or as people living in their local communities.
4.49 A range of measures are needed to improve the current provision of advocacy and representation:
- Education and training in self-advocacy for people with disabilities should form an integral part of the curriculum in schools, training centres, and sheltered work centres, and of work experience. This should be linked to other measures such as representation in management and decision-making. Funding for such measures should be included in the budget of all publicly funded education and training schemes.
- Self-advocacy should, where appropriate, be supplemented by the provision of citizen's advocacy. Funding and training for such a service should be provided through the Departments of Social Welfare/Health.
- In certain situations like training centres, but above all in residential care settings, such as psychiatric hospitals, the provision of independent advocacy services should be mandatory. Legislation for the provision of advocacy should be incorporated into any legislation dealing with particularly vulnerable groups in a residential setting.
- Finally, funding should be provided by the Legal Aid Board to ensure that people with disabilities can employ an advocate to access expert legal representation, where necessary.
Appeals and Complaints Procedures
4.50 The provision of adequate complaints procedures currently varies greatly from one area of social services to another. In some areas, statutory rights of appeal already exist. In relation to most payments made by the Department of Social Welfare, for example, a statutory right of appeal exists to the independent Social Welfare Appeals Office. For many other areas of social services, however, no similar right of appeal or formal complaints procedure exists. This lack of any formal right of appeal has been highlighted by the Ombudsman in several annual reports.
4.51 The Commission believes it is essential that individuals should have the right to voice their complaints in relation to the provision of payments and services. It is recommended that a formal complaints procedure be introduced by service providers where such a procedure is not already in place. Such a complaints procedure should be simple, accessible and made known to all users of the services. In the first instance, a complaints procedure should involve a complaint being made to a designated person in the organisation. Such a complaint could be made directly or with the assistance of Support Co-ordinator. In the case of services provided by public organisations, an individual who is dissatisfied with the response to the complaint could make a further complaint under the provisions in the proposed Disabilities Act or through the Office of the Ombudsman. In the case of services provided by non-governmental organisations, an independent office should be established by the umbrella organisation(s) which would have the power to consider complaints concerned. The establishment of a formal complaints procedure should be made a condition of public funding to non-governmental organisations.