National Parents and Siblings Alliance
Review of The National Disability Strategy February 2005 PART 1 SUMMARY OF MAIN POINTS
1. INTRODUCTION: With the publication of Budget 2005 the Government’s National Disability Strategy is now fully disclosed. In this document the NPSA tries to look at the significance of the Strategy as it affects people with an intellectual disability and people with autism. It asks if the package is enough to convince carers and families they can feel confident that their children or siblings are now safe from the concerns they have had up to this. That is, safe from the fear of inadequate or non-existent services and, for those who are currently without a service, that they can now feel their worries will soon be over. So, what do families expect from the strategy? i. There must be a confidence that all urgent necessary needs will be satisfied:
a. There must be a guaranteed assessment for all that need it
ii. There must be a confidence that other services
will be given within an agreed and acceptable timeframe and that
families are not forced to indulge in public campaigns, often exposing
their families to the full glare of the media, in order to try to
access services.b. Following from the assessment, there must be a statement of the person’s needs. c. All urgent needs must be satisfied immediately. iii. There must be confidence that families of people with an intellectual disability and autism may expect a caring response from the Government in satisfying their needs. We believe that this will only be achieved by rights-based legislation. Such legislation is not some abstract or outlandish concept but simply an expectation that people with disabilities and their families will receive basic human rights. iv. A culture must be created which will give people confidence that services will be provided when they are needed. A strategy which gives this confidence is what is required. So do the strands of the National Disability Strategy give this confidence to families and carers? To test this we will consider both the Disability Bill 2004 and the 2005 Budget: 2. BUDGET 2005 The first positive thing about the Budget for the families of people with a disability and autism was the speech made by Minister Cowen. He acknowledged the position in which families and people with intellectual disability and autism have been placed over the years. He stated that up to now the government disability programme “did not benefit from the type of professional lobbying and support which the acute hospital and primary care programmes traditionally got from strong, organized, interests in the health services. Families of people with disabilities had their hands full simply trying to cope. Nor did it attract the same level of public attention as issues such as waiting lists, medical cards, etc. Instead, most of the running had to be made by voluntary organisations.” We welcome the Minister’s attitude and feel it, more than the actual details of the Budget, gives hope that this man, at least has some understanding of the situation in which many families find themselves. We welcome also the concept of multi-annual funding. However, the sums allocated appear to fall far short of what is required. First, the Minister’s costings seem to differ from that of the Federation of Voluntary Bodies. For example, the Minister costs a residential place at an average of €80,000 per year. The Federation’s average cost is €106,000 per year. If the latter estimate is correct this means that there will be a reduction of approximately 25% on the actual number of places created. That is, we may expect a drop of 318 on the Minister’s estimate of 1290 residential places. So, of those waiting for residential places (1893 people are listed on the 2004 database) there will be just below 1000 still waiting at the end of 2009. If the same provision rate were to continue, then the last of these people would still not have a place until 2015 (see Part 3). Of course, the reality is that there is no promise of funding after 2009. This situation is not guaranteed to improve the confidence of families. But surely the budget promises huge amounts of funding over the five year period? The short answer is that the revenue figures given for 2006 to 2009 in the budget are a cumulative figure over the four years. The actual figure allocated for new services over the period is €200 million and not the €600 million stated in press reports. (See Part 3) 3. THE DISABILITY BILL 2004 So, in 2009, when the multi-annual funding has ended, or in the meantime, is there anything in the legislation which will give comfort to, for example, the 1000 people who will still be on the waiting list for residential services? There is nothing in the Bill that puts any onus on governments to provide the above services. At all times provision of services is subject to resources. It is important to note that the phrase “subject to resources” does not mean that it is only where the country has budgetary difficulties that resources will not be provided. What it means is that if a government has priorities other than disability (which, historically, has been the norm) then the money does not have to be made available. Nothing in the Bill forces a government to regard disability as a part of the budget that must be considered seriously. Apart from the example above the Bill fails to meet the criteria given in the introduction: · The
Bill contains no right to an assessment. Therefore, the
possibility of establishing the person’s needs is subject to
resources.
· If the needs are established there is no facility for ensuring that immediate needs are catered for. · The definition of disability is aimed at excluding people from assessment and services rather than providing them · The Service Statement allows for the situation where some necessary services might never be given to a person. · All services are subject to “resource” and “practicability” restrictions · The Complaints procedures are cumbersome, expensive and still subject to resources and practicability · Section 19, as with the “Wallace Bill”, prevents people from taking court action (For further details see Part 2) 4. THE MINIMUM WE COULD ACCEPT FROM A DISABILITY STRATEGY IS: · The definition of disability should be based on that found in Section 2(1) of the Equal Status Act and Section 2(1) of the Employment Equality Act · There should be a right to independent needs assessment · Sufficient resources should be allocated to a person with a disability on the basis of the Assessment Report. · Needs assessment should provide for a professional service and accurate identification of needs not influenced by existing service levels or cost / economic considerations · There should be a process of progressive realisation of identified needs. · Monitoring of the legislation should rest with the Equality Authority. · An independent complaints process should also be put in place. The Ombudsman’s Office would deal with these complaints. This should not include officials from the assessment departments or service providers involved in the assessment of need. · The legislation should provide for enforcement of the provisions outlined, ensure that the rights are justiciable and contain no provision that precludes the right of people with disabilities to take legal action. (For further details see Part 2) PART 2
DISABILITY BILL 2004 1. INTRODUCTION Our Constitution states that all people should be treated equally. In recognition of this the Education for Persons with Disabilities Bill had its name changed to the Education for Persons with Special Educational Needs Bill. The reason was to emphasise that the purpose of such legislation is to create structures which will satisfy the needs of people with disabilities in order to allow them to live in this country as equal citizens. It is logical for any society to develop systems which satisfy the essential needs of its citizens. However, in Ireland, it has not been part of our culture to address the essential needs of people with disabilities and so, the disability community continues to call for legislation to remove this inequity. Such legislation must begin with the assumption that people with disabilities are equal in society and, therefore, have the right to be treated in the same way as their non-disabled peers rather than being dependent on charity. The Disabilities Bill 2004 fails to do this. Its effect is, in fact, to give legislative support to the inequities that currently exist. For this reason we say that it must be drastically re-drafted and that without this being done we could not take it seriously in any way. So, on what should the redrafting be based? The NPSA is a member of the Disability Legislation Consultation Group. This group was set up by the last coalition government to advise it on appropriate disability legislation. It produced a document, Equal Citizens, which is supported by the NPSA and which states what the Disability Bill 2004 should have contained. So, when we talk of appropriate legislation and redrafting the present Bill we mean that it should conform to Equal Citizens. In this Part we concentrate on the major issues in the Bill. There are many others which could only be addressed when essential changes have been made. Everything in quotation marks is taken from Equal Citizens. 2. DEFINITION OF DISABILITY Problems: The definition of disability in the Bill is an example of failing to address the needs of people with disabilities. It is very narrow and aimed at excluding a large number of people from receiving an assessment and resulting services. We cannot accept the argument that the definition is narrow to ensure that limited resources are aimed at those in most need. Essentially, in using this definition, it means that the Government still has no intention of providing the services that people with disabilities need so that they can live as equal citizens. Surely, the most important point is that the definition should ensure that all people receive the services they require? We believe that the fears of those who espouse a narrow definition are misplaced. If the assessment process is properly organised and done by appropriately qualified people, then the Assessment Report will contain a statement of each person’s real needs and will, by definition, not contain what they don’t need. Thus resources will be channelled towards the resolution of such needs. Recommendations: We support the suggestion in Equal Citizens that “the definition of disability in disability legislation be based on that found in Section 2(1) of the Equal Status Act and Section 2(1) of the Employment Equality Act … it should be in keeping with the definition of disability found in A Strategy for Equality (the report of the Commission on the Status of People with Disabilities, 1996) which includes ‘children and adults who experience any restriction in their capacity to participate in economic, social or cultural life on account of a physical, sensory, learning, mental health or emotional impairment’”. (See appendix for both definitions) 3. RIGHT TO AN ASSESSMENT Problems: Despite the fanfare at its launch and, in particular, the claims that people would be given an unconditional right to an assessment, in reality the Bill contains no such right. Section 5, after it has been carefully translated from the language of obscure legal wording in which it is written, actually puts an onus on the relevant minister to sort out all other issues before considering the needs of those with a disability. Therefore, in a bad year financially, it is quite conceivable that there would not be enough money left to allow for assessments. Recommendations: “The DLCG consider that the right to independent needs assessment should result in services that are made available as a right for people with disabilities. These services should be identified to meet the needs set out in the Statement of Need”. We agree! 4. ASSESSMENT REPORT AND SERVICE STATEMENT Problems: The process in the Bill of separating the Assessment Report and the Service Statement means that people might never receive certain services stated in their Assessment Report. There is nothing in the Bill that compels any decision makers to refer back to the Assessment Report and eventually ensure that everyone fully receives what they require. The NPSA believes that the Assessment Report should constitute the active document on the provision of a person’s needs. The aim should be for the document to remain open until such time as the needs of the person are satisfied. Recommendations: “Resources should be allocated to a person with a disability on the basis of the statement of Needs (Assessment Report) only.” Once again the NPSA supports this. 5. “WHERE RESOURCES ALLOW” AND “WHERE PRACTICABLE” Problems: The combination of these phrases in the Bill constitutes huge barriers to people ever achieving what they require: One of the important aspects of rights-based legislation is the pressure it puts on Government to ensure that the people needed to provide necessary services are available and in place. So, for example, if many people need speech therapy and there are no trained people available then the fear of court action will encourage the decision makers to train sufficient people to satisfy the expected need. In this Bill not only have people no right to take court action other than on a point of law but neither is there any other form of onus put on Government to actually ensure that the necessary people are in place to provide services. The phrase “where practicable” ensures that the opt-out clause will be constantly used. That is, “sorry there’s no one on the ground to provide the service and therefore it’s not practicable to provide it”. Also, history has shown that, where there is no pressure on government to provide services for people with disabilities then they will be left at the bottom of the heap. Ironically, this can often mean that when they reach adulthood not only have people with disabilities been damaged by State neglect but also the intervention then required is even more costly. Therefore, it goes without saying that it is the belief of the NPSA that the only really effective way to force Government to treat people with disabilities in an appropriate fashion is through proper rights-based legislation. We are aware that there may be resource issues but these can be smoothed out by progressive realisation of services. Recommendations: We believe the only way to ensure that the present inequities no longer exist is to create a situation where “Needs assessment should provide for a professional service and accurate identification of needs that are not influenced by existing service levels or cost / economic considerations …in the event of services not being available a programme of measures should be put in place in order to realise these services within an established timeframe”. That is, there should be a process of progressive realisation of identified needs. 6. MULTI-ANNUAL FUNDING Problems: It has become a common cry of the Government that they are providing multi-annual funding and that this will resolve all the issues. The NPSA welcomes the promise of a funding package. Obviously, if regular funding had been provided in the past we would have confidence in governments’ willingness to treat people with disabilities like all other citizens. However, this is not the case and, in five years time, the multi-annual funding will stop but babies with disabilities will continue to be born. All they will have to protect them is legislation, and this particular bill will do little in that regard. Recommendations: We believe that multi-annual funding must be an important component of a satisfactory disability strategy. However, this must be: · Sufficient to resolve the issues within a reasonable time-frame
· Be monitored properly · Be properly costed after consultation with service providers. In this way, there will be no difference between the Government’s costings and that of those who provide services. 7. SERVICE PROVISION AND COMPLAINTS PROCEDURES Problems: The system of service provision and complaints is expensive and cumbersome. Having received an assessment, a person might go through four different stages of the next process: · First
the Liaison Officer decides which of the person’s needs are not
going to be satisfied and which will be satisfied. This is stated
in the service statement.
· Then the Complaints Officer will try to resolve any contentious issues informally. · Then the Complaints Officer will try to resolve the issues formally. · Finally, the Appeals Officer will go over the same ground again. In all cases the officers are bound by the “resources” and “practicability” restrictions. It is difficult to see many situations where there would be other reasons for not giving services. Therefore, the system is merely a very expensive means of saying “no” in four different ways. Clearly, the end result is that much of the funding for disability will be consumed by a huge bureaucracy rather than on much needed services. It seems that the drafters of this bill believed that the appearance of taking the needs of people seriously was more important than actually doing so. In the process they are using huge sums of money to do it - money that could be better employed providing services. We must question the motives of those who included this section in the Bill. Clearly, the system is not designed to save much needed funds. The complaints superstructure is not independent. In Part 2, of the four deciding officers (including the Assessment Officer), three work for the health board and one works for the minister. It is difficult to see how these people, in making their decisions, will not come under pressures and influences such as the culture of the health board, the knowledge of what staff etc. are available, the fact that they will be making findings against their own colleagues or, in the case of the Appeals Officer, the attitudes of the minister. Recommendations: “The task of monitoring the legislation should rest with the Equality Authority. Sufficient resources and powers should be conferred on the Equality Authority in carrying out the implementation and monitoring of the legislation.” “An independent complaints process should also be put in place. It is suggested that the Ombudsman’s Office could take these complaints. This should not include officials from the assessment departments or service providers involved in the assessment of need.” 8. SECTION 19 Problems: It is the belief of the NPSA that Section 19 is this Bill’s version of Section 47 from the “Wallace Bill”. Essentially, its effect is to ensure that people cannot take any court action except on a point of law, which of course is constitutionally available to all of us. Once again we must question the motives of those who decided to include this section in the Bill. We believe it should be removed. Recommendations: “Rights based legislation requires effective means of enforcement and remedies and for this reason the legislation should provide for enforcement of the provisions outlined, ensure that the rights are justiciable and contain no provision that precludes the right of people with disabilities to take legal action. A failure to comply with the provisions of the legislation should be construed as ‘discrimination’ under the Equal Status Act and therefore under the remit of the Equality Authority and the Office of the Director of Equality Investigations.” 9. OTHER ISSUES As has been stated above, the main difficulty with the Disability Bill 2004 is that, in the words of the DLCG, it is “fundamentally flawed”. For as long as this is the case it is very difficult to take the details seriously. In short, unless major work is done in the areas referred to above we will be demanding that the Bill be withdrawn. However, if the Government manage to resolve these issues to any satisfactory extent then other issues would need to be addressed. We will not discuss these in detail at this stage as we feel there is no point until the substantive issues are corrected. However, we would simply state that unlike the Education for Persons with Special Educational Needs Act 2004 there is a remarkable lack of detail in this Bill. For example, there is no indication as to the composition of an assessment team. Equally, there is no indication as to what qualifications the Liaison Officers and the various Complaints Officers will have. Also, there are few time-frames given within which the various procedures must be carried out. There is some doubt if the Assessment Report could include reference to residential and respite places. In Part 4 – Genetic Testing’ should form part of separate legislation entirely, particularly as it pertains to everyone in the State, not just to those with disabilities. However, as stated already, these and other issues are merely academic at this point. 10. IN CONCLUSION The Disability Bill 2004, is a fundamentally flawed document. While we are not demanding at this stage that it be withdrawn we are most certainly demanding that it be re-drafted in order to make it a bill which satisfies the needs of people with disabilities and their families rather than the needs of this Government. This redrafting, as has been stated already must take all provisions of Equal Citizens seriously. PART 3
THE MULTI-ANNUAL FUNDING PACKAGE In this section we propose to look at the Budget allocation from two view points. First, we will look at the actual sums allocated and what these figures really consist of. Then we will look at the number of places allocated and see what effect that will have on waiting lists. 1. ACTUAL FUNDING ALLOCATED On first reading, the Budget figures look very impressive. Over the period, €582 million is promised for revenue (described in the press as €600 million), consisting of €500 million Department of Health funding and €82 million for education funding. €300 million is promised for capital. Whatever about the capital, the revenue figures, while accurate, are seriously misleading for the lay person. The situation is this. The budget divided the allocation into two main parts: funding for 2005 and a multi-annual package covering 2006, 2007, 2008, 2009. When stating costs, it gave the total cost to the State over the multi-annual funding period. Revenue funding covers salaries and day-to-day running costs for services. Unlike capital expenditure which, for example, covers the costs of buildings etc., once the service commences revenue costs will continue each year for as long as the service continues. So, if a residential house is built then the cost of the house itself (capital cost) will be paid once only. However, the staff that work in the house will always work there and so, their salaries (revenue cost) will continue for as long as the house is providing a residential service. Therefore, if a service is created this year, the running costs of that service will fall on the Exchequer each year from now on. For example, the €50 million allocated for new services in 2006 must also be paid for those services in 2007 and also in 2008 and also in 2009 (and also for each year after that). In calculating the total budget costs the Government has, quite rightly, taken account of this aspect. So to illustrate what has happened take, for example, the €50 million allocated for new services in 2006. Over the four years this becomes: Cost in: 2006 2007 2008 2009 Total over the 4 years €50 €50 €50 €50 €200 The costs for new services in 2007, 2008 and 2009 were treated in the same way. This gave the following estimates over the multi-annual funding period: €50 million allocated in Total cost to maintain the service up to 2009 2006 €200 2007 €150 2008 €100 2009 €50 Overall total cost: €500 While having no problems with how the Minister has presented the figures, it has to be remembered that, in terms of new services, the annual revenue allocation over the four-year period is €200 million. That is, €50 million per year. In 2005 there is also a €70 million revenue allocation. All these figures include services for people with intellectual, physical and sensory disabilities. This compares with the first year of the “Cowen Plan”, five years ago, when 30 million punt (€38 million) was invested in intellectual disability alone in 2000 and again in 2001. 2. NUMBER OF SERVICE PLACES ALLOCATED IN THE BUDGET: Government press statements and media coverage at the publication of Budget 2005 gave the impression that the service provisions on disability were unprecedented. While the situation is better than in recent years, when compared with the “Cowen Plan” which ran over 2000, 2001 and 2002 the figures are not quite so spectacular. Table 1 compares the first year of the “Cowen Plan” as stated in the budget for the year 2000 with the figures promised for 2005. Clearly Budget 2005 pales into insignificance against the year 2000. TABLE 1 Cowen Plan for Year 2000 Budget 2005 Residential Places 555 270 Respite places 154 90 Day places 700 400 Even looking at the overall total the Budget 2005 figures are not a great deal higher than those of the “Cowen Plan”. However, the 2005 figures are spread over five years while the “Cowen Plan” figures only cover three years. Therefore, allowing for emergencies and new people needing services over the period, the effect of Budget 2005 will be considerably less than that of the Cowen Plan: TABLE 2 Cowen Plan from 2000 to 2002 Total in Budget 2005 Residential Places 1107 1290 Respite places 330 430 Day places 2000 2540 In fact, the issue is complicated further by the fact that the end result for 2000 never remotely looked like the figures in Table 1 above. The Service Plans sent in by the service providers stated that they could only supply 425 residential places with the money provided (instead of 555). It is a common feature for the service plans sent in by service providers not to correspond with the figures stated in the Budget. This is because there appears to be no agreed average cost between the two sides. As stated on page 1 there is a discrepancy between Government and Voluntary Body estimates which would reduce the projected number of places by over 30%. A further complication is that from 2005, service providers may use up to 30% of the allocation for enhancing existing services. While such enhancements are obviously necessary and will be taken up by most service providers, the effect is to further reduce new services. As Table 3, below, shows, the actual figure by 2009 is likely to be 597. This means that, as the residential waiting list currently stands at 1893, there will be well over a thousand still waiting for a residential place at the end of 2009. Table 4, indicates that, if we assumed the same number of places were allocated each year until the waiting list was eliminated (with no allowance for inflation), it would be 2020 before this happens. TABLE 3 '05 '06 '07 '08 '09 Total Res. Places Promised 270 255 255 255 255 1290 Reduced for cost differences 178 168 168 168 168 850 Only 70% will be new places 125 118 118 118 118 597 TABLE 4 '09 '10 '11 '12 '13 '14 '15 '16 '17 '18 '19 ' 20 Tot Res. Places Promised 1290 255 255 255 255 255 255 255 255 255 255 255 4095 Reduced for cost differences 850 168 168 168 168 168 168 168 168 168 168 168 2698 Only 70% will be new places 597 118 118 118 118 118 118 118 118 118 118 118 1895 What is most important is that, from 2009, people still on the waiting list will be dependent on Budget decisions or on the Disability Bill to ensure that the necessary funding is allocated. Unfortunately, as has already been stated, the Disability Bill offers little comfort for them. Obviously, also, the above calculations make no attempt to allow for people not currently on the waiting list who might require a service in the meantime. PART 4
CONCLUSION The point made by the Government when it was published was that the Disability Bill should not be judged in isolation and that the multi-annual funding package should also be considered before conclusions should be reached. The NPSA never agreed with this suggestion. We believe that rights- based legislation will put its own onus on Government to provide necessary funding. That is, the legislative demands will create an automatic multi-annual funding situation and there will be no need for parents to await the generosity of different governments for service provision. However, at present this is not the case. So, we must look at the Strategy and decide if, as a whole, it gives to parents the confidence referred to in Part 1. The Disability Bill, as it stands, gives no right to any service, even an assessment. Therefore, the only way a funding package could give any sort of confidence would be if it were constructed to provide sufficient funding to remove the current waiting lists, including those waiting for assessments, within the period of its implementation. Clearly, it does not do this! Therefore, it is with reluctance that the NPSA must reject the National Disability Strategy in its present form. We call on the Government to take on board the views of all organisations and particularly groups representing service users and their families, the people who have suffered most in the past and who continue to do so, and redraft the Strategy into one which accepts that people with disabilities and their families have the same human rights as the rest of the population. Appendix
Definitions of Disability The definition of disability from the Employment Equality Act 1998 reads as follows: ‘‘disability means— (a) the total or partial absence of a person’s bodily or mental functions, including the absence of a part of a person’s body, (b) the presence in the body of organisms causing, or likely to cause, chronic disease or illness, (c) the malfunction, malformation or disfigurement of a part of a person’s body, (d) a condition or malfunction which results in a person learning differently from a person without the condition or malfunction, or (e) a condition, illness or disease which affects a person’s thought processes, perception of reality, emotions or judgement or which results in disturbed behaviour, and shall be taken to include a disability which exists at present, or which previously existed but no longer exists, or which may exist in the future or which is imputed to a person” The definition from the Equal Status Act 2000 reads as follows: ‘‘disability’’ means— (a) the total or partial absence of a person’s bodily or mental functions, including the absence of a part of a person’s body, (b) the presence in the body of organisms causing, or likely to cause, chronic disease or illness, (c) the malfunction, malformation or disfigurement of a part of a person’s body, (d) a condition or malfunction which results in a person learning differently from a person without the condition or malfunction, or (e) a condition, disease or illness which affects a person’s thought processes, perception of reality, emotions or judgement or which results in disturbed behaviour; |