I wish to share my time with Deputies Shatter, Bradford, Neville, Naughten, Coveney and Kenny.
Private Members' Business. - Carers for People with Disability: Motion.
Is that agreed? Agreed.
I move: "That Dáil Éireann:
–noting that there are an estimated 100,000 carers who provide the bulk of care for people with severe disabilities, those who are mentally ill, those suffering from chronic illnesses or those who are in need of care through age or infirmity, most of whom are in receipt of no financial assistance and whose role is not recognised, acknowledged or supported by the State;
–conscious of the fact that an estimated 140,000 people with physical and sensory disability have yet to achieve full, social, economic and educational integration as equal, independent and participative members within the general community;
–aware from Government-commissioned reports that more than 1,000 people with intellectual disability live in completely inappropriate surroundings and that thousands more are on waiting lists for essential services, such as residential and respite care;
–believing that there is an urgent need to address the legitimate demands of people with a disability, their families, carers and advocates for a range of appropriate services and supports;
–knowing that the present healthy state of the economy provides an unprecedented opportunity to vindicate the rights of and radically improve the quality of life for people with disabilities, the elderly, the chronically ill and for their carers and families; and
–recognising the justifiable anger and disappointment of carers, people with disabilities, their families and advocates because of the failure of the Government to comprehensively provide for their documented needs and entitlements which has led, for the second successive year, to their public protest at the gates of Leinster House, calls on the Government to put in place a comprehensive financial package in the millennium budget to fund the necessary expansion of both community-based and residential care facilities, services and requirements and, in particular, to provide for:
–full implementation, by the end of 2000, of the recommendations contained in the report ‘Towards an Independent Future';
–the elimination of waiting lists for respite, residential and day care and for essential aids and appliances;
–the expansion of the personal assistance service to allow for a substantial increase in the number of adequately paid and trained personal assistants;
–a radical overhaul of financial supports to carers and people with disabilities, including an increase in the carer's allowance to not less than £100 per week and a relaxation of the present stringent means test requirements, which addresses the need for a non-means-tested cost-of-care allowance and cost-of-disability allowance;
–the extension of the incapacitated persons' tax allowance;
–the payment of domiciliary care allowance from date of definite diagnosis rather than from two years of age, as at present;
–the establishment of home-help services as a core health service provided as a statutory entitlement with an increased number of adequately paid and trained personnel;
–a substantial increase in the number of public health nurses, occupational therapists, physiotherapists, social workers and other paramedical services,
–and demands that the Government produce a fully-costed programme to achieve these objectives and to undertake to fulfil the recommendations of the report of the Commission on the Status of People with Disabilities within a specified timeframe."
The Fine Gael motion focuses on the forgotten people of Irish life. I am unsure of exactly how many – some would say one-tenth of the entire population, which would be more than one-third of a million. Certainly, there are at least 140,000 people with physical and sensory disabilities who have yet to achieve full social, economic and educational integration as equal, independent and participative members within the general community. There are also an estimated 100,000 carers who provide the bulk of care for people with severe disabilities, for those who are mentally ill, those suffering from chronic illnesses or those who are in need of care through age or infirmity. All these people, and more, have been forgotten. I recognise the justifiable anger and disappointment of carers, people with disabilities, their families and advocates because of the failure of Government to comprehensively provide for their documented needs and entitlements. Thus, we have had for the second successive year a public protest at the gates of Leinster House.
This week, we had the much-trumpeted national plan with a price tag of £40 billion. There is plenty of money for roads, railways, sewers and social housing. I looked in vain, however, for the section dealing with the forgotten people. I fear again, they have been forgotten. The reaction of the Forum for People with Disabilities says it all. This independent body said the plan, and I quote from today's edition of The Irish Times,“contains no specific details as to what resources will be directed at concrete and inclusive measures for disabled people over the next 6 years”.
I am pleased that Fine Gael has put a special pre-budget focus on the rights and needs of carers, people with disabilities and those in need of care through age, infirmity, mental or physical illness. We are demanding a comprehensive financial package in the millennium budget to fund the expansion of community-based and residential care facilities and the elimination of waiting lists for respite, residential and day care and essential aids and appliances. We also seek the expansion of the personal assistance service and a radical overhaul of financial supports for carers and people with disabilities. We are looking for the expansion of the incapacitated persons' tax allowance and the payment of the domiciliary care allowances from the date of definitive diagnosis rather than at two years of age as at present. We want the establishment of home support services as a statutory entitlement and a substantial increase in the number of public health nurses, occupational therapists, physiotherapists, social workers and other paramedical supports.
Given that the Exchequer is awash with money, there is now an unprecedented opportunity to vindicate the rights and radically improve the quality of life for people with disabilities, the elderly, the chronically ill and their carers and families. So much can be said about any of these issues that it is impossible to cover all the ground. I intend to focus on some of the caring aspects, while my colleague, Deputy Shatter, will speak in more detail about general disability issues. Such is the interest in and support for this motion that virtually every member of the Fine Gael parliamentary party has sought to join in the debate. However, we can only accommodate approximately 25 members because of time constraints.
I want to put a major focus on carers. They do not deserve our pity, they do not need to be told how important they are. Fine Gael believes that rather than mere words, they deserve our financial support for the job they do, a job which saves the taxpayer millions of pounds. Caring is a business, not a charity. Carers must live like the rest of us. They must pay bills, mortgages and put food on the table, just like all of us. We have so surrounded the granting of financial help to carers by bureaucracy and red tape upon red tape that three out of four carers in modern Ireland, Celtic tiger Ireland, are denied the basic financial support they should receive. Instead of battling to look after the health and well being of those they nurse, by our penny-pinching cruelty we force on them a second battle, to try to make ends meet without income from the State. It is as if we are saying to them that we do not think what they are doing is important enough to warrant our support.
We have a carer's allowance of sorts but instead of being designed to help those who need help, to reward those who devote their time and effort to aiding others, it seems to have been designed to penny-pinch. Forget the means test – it is just a mean test. It is a system designed not for the benefit of those it should serve, but to allow us to find every technicality we can, every loophole we can discover to say "we know you deserve the money but we have found a way to stop you getting it". It is a case of scrooge-bureaucracy gone mad.
The irony is that this scrooge-like mentality blindly ignores the fact that these carers save the taxpayers a fortune. Even if every single carer were paid, the taxpayer would still come out the winner. Today, 99% of all those needing care are cared for, not in hospitals, not in special care centres or residential homes, but by family carers. Imagine the cost to the taxpayer if all these people had to be accommodated in costly residential homes and hospitals. It must be obvious even to the most cynical penny-pinching bureaucrat, cynical newspaper columnist or cynical economist that by looking after these people at home, carers are saving the Exchequer a fortune. Remember also, some day in the not too distant future the proportion of elderly people who will need care will rocket. Today's numbers will look like a drop in the ocean compared to the figures to come.
I have no doubt that somewhere there is someone who, as the saying goes, "knows the price of everything and the value of nothing", and who will say that if carers are willing to care for family members for little or nothing, why bother spending money on them. I reject that argument. As far as I and my party are concerned, carers deserve more than our thanks. They deserve our financial and personal support. Even the cynics will recognise the value of ensuring that as many people as possible are looked after at home, not in costly residential care. It makes economic sense to look after people in their own homes. Morality and economics are two good reasons carers deserve proper financial support.
The days when we use the means test and penny-pinching rules as a means to find some technicality to steal back from carers money to which they are entitled must end. A fairer method of assessing means should be put in place immediately to allow 10,000 further carers to qualify for direct financial support. We must also extend the incapacitated persons' tax allowance of £8,500. This currently caters only for approximately 400 taxpayers. That should be extended to all carers who do not qualify for a carer's allowance. We must also ensure that the annual £200 respite allowance is paid to all carers providing full-time care and attention to the elderly and disabled.
Carers are not the only people providing valuable, vital services to those housebound due to illness, disability or old age. There are 12,000 home helps in Ireland, most of them part-time. To say that the service they provide to those who need their help is vital is an understatement. The demand on such a service will rocket in years to come. At present there are 175,000 people over the age of 75 in this country. Within the next 30 years, that figure will nearly double to 300,000. The number of people over the age of 65 will increase by 50% in the next 12 years. It makes sense, even financial sense, to ensure that old people where possible are kept in their own community, not shunted off to expensive old folks homes, unless health problems make it absolutely necessary for that old person to live in a special home.
Fine Gael believes passionately that the elderly and disabled should be encouraged to remain, as far as possible, in their own communities. Ireland has always believed in the importance of community and, to my mind, we must strive to keep that community spirit alive. Central to such communities must be the elderly and disabled. To achieve that, there must be a properly funded, properly staffed home help service to provide the back-up the old and the disabled will need if they are to continue to live in their community. The home help service will need investment – we will give it. Its current budget of £25 million is ludicrously inadequate. It should be doubled immediately to £50 million, coupled with the provision of the other necessary resources. Take the position of an individual home help. Would any of us work for £3 per hour? The Celtic tiger values home helps less than it values a pack of cigarettes. It pays home helps per hour less than we spend on a pack of 20 cigarettes. That is slavery Celtic tiger style – the booming Irish economy that treats home helps like cheap slaves, cheaper than 20 cigarettes.
It is incredible that home helps, even now, receive only £3 per hour. They should be at least paid the proposed minimum wage, perhaps with the provision of special rates for weekend visits. Fine Gael also believes that a proper system of training and recognition must be provided. We also believe that national guidelines are necessary to cover criteria for assessment of need, entitlement and level of service provision.
The scrooge bureaucracy mentality has reached a low point in the treatment of babies born with intellectual or physical disability. There is absolutely no case for the current regulation which denies payment of the domiciliary care allowance before the baby reaches the age of two years. Fine Gael will change this ridiculous rule to permit payment from the date of definitive medical diagnosis.
When these changes are made and the issues raised by my colleagues are dealt with, maybe we will be able to say with pride that we really do care for the old and the disabled. We will also be able to say that we value, truly value, the contribution of those Irish men and women who give so much in the service of their fellow citizens. We owe them so much for their devotion to others, to those in need and to those who in the past themselves helped to build up this nation. It is time we repaid that debt and vindicated the rights of those who are cared for and their carers. We, in Fine Gael, will do so.
Since this House last debated a motion on services to people with disabilities the country has experienced its first national nurses strike. It was a traumatic event causing chaos in the acute hospital sector which was already close to breaking point. Despite the best efforts of nurses who provided emergency cover free of charge, it caused hardship to in-hospital patients and stress and a further burden of care to the families of those who required, and will now have to wait longer for, hospital treatment.
During this entirely preventable strike, the Government was content to see hospital waiting lists escalate. It was equally content to see people with disabilities denied access to residential, day and respite care. Those who rely on the support of specialist nurses and the public health nurse in the care of dependent relatives had to cope alone. During the nurses strike we had, through news bulletins, a brief glimpse into the often hidden world of people with disabilities, those who are chronically ill, the elderly, people with mental illness and those who care for them, often with little or no support or recognition from the State. The Government was content to let them cope alone during the nurses strike. The Government is con tent to produce a litany of platitudes, of promises about legislation and increased spending, whenever services to people with disabilities and their carers and advocates are discussed. The Minister invariably takes – we will probably hear it again this evening – the "we did more than you" route whenever these issues are discussed. That is to be regretted.
It must be acknowledged that progress has been made. This House has debated and passed important equality legislation. It has, through Private Members' motions such as this, wrung a little more assistance for aids and appliances. The disabilities motions last year forced the Government to make extra financial provision it never contemplated making until the motions were tabled and debated in this House.
The Government's review of its own performance and the national plan make much of what will be done in terms of capital spending. There are promises in both documents which, if fulfilled, will ease the position of many. There has been much talk of partnership, new structures and national strategies but what is the reality? How many people's lives have been transformed beyond recognition by the Government's spending and plans? Unfortunately, the answer is all too few. There are too many who are waiting still, living lives of quiet desperation, denied their opportunity to live independently because of lack of personal assistance, denied the right to mobility because they are still on a waiting list for aids or appliances, denied their right to a normal life because they are caring for a family member with dementia or mental illness who is on a seemingly endless waiting list for appropriate residential care.
The need for this motion is clear. Early next month the Minister for Finance will deliver his millennium budget package. There may be something in it for everybody. We may all have reason to be pleased if we have to pay less tax and it may improve the "feel good" factor, but unless it makes a real difference to the lives of people with disabilities, to carers and to those in need of special care, it will not be a socially just budget.
The pre-budget submissions of a great number of the voluntary agencies set out clearly the scale of the issues to be addressed. They are not an aspirational wish list but a statement of real and concrete needs which must be addressed in the budget by the Government. Those who have waited so long for recognition and for a vindication of their rights must be sorely disappointed by the Government's amendment to the motion. They are being asked again to take the Government's word, to applaud the Government's recognition of their needs as if it is doing them a favour rather than acknowledging their rights and to listen again to the fine words of the Government's policy documents.
On the physical disability side, the 1,273 people who require personal assistance services, the 1,113 who need access to day resources centres and the 3,500 people who need respite care could have their needs met by the provision of £16 million of Revenue funding. Relatively little money could improve beyond recognition the lives of a substantial number of people. The Irish Wheelchair Association estimates that a cost of disability payment scheme could be instituted for £16 million to assist people with disabilities to meet their needs where services are not available or cannot be provided. The current situation cannot be allowed to continue. We cannot defend the indefensible where people are denied personal assistance, including care attendants and home help. We cannot justify that care attendants providing critical personal care at night, at weekends and on public holidays are paid only £3 an hour. We cannot justify payments of that level or lower to home helps. On the eve of the 21st century, we cannot justify providing 19th century services to people with disabilities and to their carers.
In the absence of a national database of people with physical and sensory disabilities, the full extent of the need to be addressed is currently uncertain. The "Not for Profit" Business Association estimates that its client base is in the region of 135,000 people. There is a pressing need for a database of people with physical and sensory disability so that long-term planning can be undertaken using real and not estimated figures – we said the same this time last year in a similar debate. However, in the absence of a database, there is enough empirical data. There are enough real people, situations and needs to be met now.
Last week in a debate on this issue in the Seanad, the Minister for Health and Children made much of the fact that co-ordination committees have been set up in each of the health boards to identify priorities for service provision and for disbursement of funds. This is a welcome development and one which should, in theory, address the regional imbalance in the provision of services. In practice, the old structures still exist. Funds which should be finely targeted to meet real needs are being disbursed on the "one for everybody in the audience" principle in some health boards. There is, among the voluntary agencies, serious disillusionment about the way this so-called partnership and co-ordination operates in practice. The co-ordination committees are supposed to be chaired by the programme manager in the health board. In some health boards the committees are chaired by whoever is available on the day of the meeting. This is unfair to the voluntary agencies, the health board personnel and, most especially, the people who require the service. Continuity and commitment are vital if needs are to be met.
The procedures for allocation of funds need to be tightened up. Money allocated in a particular year to meet needs within a health board area should provide service benefit in the year of allocation. This is not happening in all cases. For instance, in the Mid-Western Health Board, the capital allocation for 1999 did not become available until November, one month before year end. Yet in the Government's accounts, this money was technically providing services for people with disabilities for the whole of 1999. In the Midland Health Board area, all the money for service provision was allocated to a premises which will not be in use until the end of next year.
There needs to be a review of procedures in relation to these committees. Some health board areas have made a promising start and are sensibly working through a service plan. In the absence of focused guidelines and regular quality audits of the service plans of these committees, the old regional inequalities and imbalances will persist to the detriment of those people who require speedy and high quality services. Surely the simplest way to address needs of people with disabilities is to set up simple clearing houses to evaluate needs and target resources. The voluntary agencies would wish to see this in place. When will the Minister actually move to put these structures in place? In response to parliamentary questions tabled by me, he has advocated the clearing house role for the co-ordination committees in relation to waiting lists for aids and appliances. Today, in reply to a question, he said:
. . . aids and appliances are also provided by a number of voluntary [agencies] . The position regarding waiting lists for these items is therefore more complex ., as many people, who are in contact with voluntary [agencies] ., are not always known to the health boards. This makes it difficult to get an accurate picture of the overall numbers and the . waiting times for the provision of equipment . However, this matter is being addressed by the boards in co-operation with their co-ordinating committees .
The Minister then uses this lack of co-ordination, for which he is responsible, to provide data on waiting lists for aids and appliances which is typically obscure. According to the Department's estimates, there are approximately 1,600 people waiting for essential aids and appliances, but the Minister does not know who they are and either was unable or deliberately failed to tell the House for what they are waiting.
The service deficit for people with an intellectual disability is apparent through the intellectual disability database and the assessment of needs document. Despite the Government's assertion that the situation has improved in recent years, the database figures show that 3,380 people with intellectual disability will require a new service in the next five years.
The principal carers of persons with mental handicap are their parents. The age profile of those identified as requiring a service has a very significant implication. There are very elderly parents caring for middle aged and older sons or daughters. Parents in their 70s and 80s are looking after their adult mentally handicapped sons or daughters. For all of them, quite apart from the daily physical and emotional demands made on them, there is the fear of what will happen to their child if they die or become incapacitated.
In this country, we claim to value the elderly. Based on the figures to which I referred, it is clear that there may be over 8,000 old age pensioners caring for a dependent mentally handicapped son or daughter. What will the Minister do for them? Will an increase in their old age pension, welcome though it would be, relieve the pressure of caring? Will it provide the residential, day or respite care that they so desperately need? Will it end the sleepless nights or provide peace of mind?
The parent of a mentally handicapped adult, in a submission to the Commission on the Status of People with Disabilities, summed up the position in this way:
Parents do not expect the state or society to take over their responsibilities. They are prepared to make whatever sacrifices are necessary but with the best will in the world, they cannot do it from beyond the grave.
The Government's programme, An Action Programme for the Millennium, made various promises to people with disabilities. The revised Government programme, published in recent weeks, states:
At this time it is clear that the services for those suffering from a mental or physical handicap, which have improved since this Government took office, must be developed at an even faster rate to ensure that facilities already in place are improved upon as well as providing for additional places which are backed up by a range of supports available to patients, family and carers. The Government pledges to do this as a priority.
While these are fine words, where is the evidence of the Government's fine deeds? The Government recognises that there is a need to develop services at an even faster rate. Why did it not provide funding for service provision at a faster rate?
The Government has, at year end, £2 billion more at its disposal than estimated at the start of this year, not including the receipts from the sale of Telecom Éireann. Last year, at about this time and in a debate on a similar motion, I highlighted the fact that £21 million in receipts from the health levy would not be spent by the end of 1998. The highlighting of this unspent £21 million forced the Government to make an additional financial allocation for the provision of services for people with disabilities. This year, there has been a substantial increase in receipts from the health levy, which is, I remind Members, expressly intended to provide additional funds for health service provision.
This year, it is conservatively estimated that the Department of Health and Children will have £80 million in health levy receipts unspent at the end of 1999. On the eve of the millennium, the Department of Health and Children will have saved £80 million. This sum is just £10 million short of the total so-called additional funding of £91 million allocated by the Government to disability service provision over the past two and a half years for which it congratulates itself in its proposed amendment to the motion. Scrooge would be proud of the Government. The Minister for Health and Children could have made a far greater financial allocation this year to meet the needs of people with intellectual, physical and sensory disability and those of carers and to assist with the care requirements of people with dementia, those with mental illness and the chronically ill.
The Government, in its amendment, also attempts to congratulate itself for "putting in place arrangements to meet the educational needs of children with special needs". While some progress has been made in this area, over the past two years we have seen a procession of parents with disabled children being obliged to take High Court action against the Departments of Education and Science and Health and Children to force them to provide basic specialist educational services for children with special needs.
If this was a simple political point scoring exercise, the Government should be embarrassed. Sadly, the unspent millions are not a cause of embarrassment, they are a national scandal. Every pound of those unspent millions could have made substantial differences to the lives of people with disabilities. I hope the Minister for Health and Children can again this year be shamed into spending some, at least, of the additional health levy receipts. All £80 million could have been spent this year on people with disabilities.
That is nonsense and the Deputy knows it.
The Ministers for Health and Children and Finance should finally put their money where their mouths are and provide the comprehensive services required by people with disabilities and their carers. They should also provide the additional support funding required by the voluntary agencies which work so hard for these people.
I support the motion tabled by Deputy Jim O'Keeffe. It is appropriate that the Dáil should be discussing this matter at this time. Yesterday, the seven year national plan, which is worth £40 billion, was launched. This plan gives the Minister for Health and Children and every other member of the Cabinet a great opportunity to decide whether we want to build a genuinely fair society. I recall that the previous national plan was launched amid similar fanfares. However, many people did not benefit as much as others under that plan. Among those who did not get their fair share are those to whom the motion refers.
There are many people who will look at the huge budgets and resources available to the Government and the Minister for Health and Children, wondering how they will respond to this motion. Every policy put in place by the Minister's Department during the next three years must be designed to ensure that we look after the needs of the marginalised in society.
I support Deputy O'Keeffe's comments about the carer's allowance which was designed seven to eight years ago as a mechanism to give a little reward to many people throughout the country. The people in receipt of the allowance are doing a huge service not just for their families but the country in general. The rate of pay they receive is entirely insufficient and the means test designed to regulate the scheme is most unfair. Both must be reviewed.
I also concur with Deputy O'Keeffe's remarks in respect of the home help service. The home help scheme was introduced almost as a stop-gap measure to allow people to look after their neighbours. However, society has changed. Home helps do tremendous work and they save the State millions of pounds each week but they are paid a pittance. The Minister must ensure that a proper home help scheme with a proper rate of pay is put in place because his Department, the district and county hospitals and the nursing homes throughout the country are saving millions of pounds each week as a result of the work done on an almost voluntary basis by home helps.
My final point relates to the educational services which should be made available to the many people suffering from disabilities, particularly the young. Last weekend I met the parents of a four year old deaf child who are obliged to transport their child 25 miles to school each day. The total assistance they receive from the State is £1,500. That situation is grossly out of touch with reality in the Ireland of the new millennium. Cases of that sort, of which there are many, require urgent attention from the Department if we are to build a fair society with the £40 billion to which the Minister and his colleagues have access.
I welcome this debate and I congratulate Deputies Jim O'Keeffe and Shatter on tabling the motion. I wish to draw attention to the difficulties, sadness and pressure visited upon carers of those who are mentally ill. The mentally ill and those recovering from mental illness are a particularly vulnerable group. Earlier this month the Report of the Inspector of Mental Hospitals for the year ending 31 December 1998 was published. It outlined the neglect of people who are forced by their illness and the State's response to it to live in institutions, many of which are totally unsuitable for the provision of modern health and caring services. The report states that, because of State neglect, people have died. This is a disgrace.
In section 1, which outlines an overview of the inspector's findings, it is stated that:
Whilst not wishing to intrude on the minutiae of clinical practice, the Inspector felt drug prescribing in some locations is often arbitrary and made without regard to appropriate clinical diagnosis. The number of patients, particularly long-stay patients, was striking. In some instances the prescriptions had not been reviewed for some considerable time. It is important to review medication at frequent intervals. There appeared to be an increasing number of sudden deaths in psychiatric hospitals, some of which were attributed to drug-related effects.
This is a disgrace. It is not acceptable that people are dying in such situations and the matter requires immediate investigation. We must examine it and shout "stop". The Minister must intervene and establish an investigation into what is happening in our mental institutions.
The report calls attention to the inadequacy in the provision of community mental health centres, day hospitals and community residential facilities for people with psychiatric disorders. In some hospitals, as many as 50 per cent of the acute psychiatric beds are occupied by persons who do not need such a high level of in-patient care. A major reason for this is the absence of appropriate alternative care. Surely it is unacceptable that in 1999 we deny a quality of life to the mentally ill commensurate with the level of health they enjoy. We treat such people like prisoners. The level of neglect is as much a scandal as any of the others about which we read on a daily basis. It must be highlighted. The Minister and the Department responsible stand indicted. Up to 90 per cent of the people who commit suicide have some form of mental illness. Research shows that current psychiatric patients are ten times more likely to commit suicide than people among the general population. In the four weeks following discharge from a psychiatric hospital, psychiatric patients are between 100 and 200 more time more likely to commit suicide than people in the general population.
In the report of the National Task Force on Suicide, there was a recommendation that the possibility of suicide should be considered when treating people with mental health problems, in particular there should be pre-discharge assessments of patients leaving in-patient care which should have regard to the high risk of suicide in newly discharged patients. It is recommended that such assessments should be thorough and comprehensive. Nothing has been done to introduce this. The authorities and the Minister do not care.
The national task force further recommended that steps be taken to make the health service, including mental health services, more acceptable to the public, particularly the young who may perceive them as not being readily available to address their needs in times of crisis. Two years after these recommendations nothing has been done. In 1998, 504 people died by suicide, a 14 per cent increase on the previous year. The State has failed to respond to the young and other people in crisis. That is unacceptable, a disgrace. We must start to care for those people.
I thank Deputy Jim O'Keeffe for tabling this motion. The Government's national development plan states that people are the country's most important asset. People fail to realise, however, that part of this asset has been ignored and neglected for years. Some of these people cannot speak up for themselves. Those who can have seen their words fall on deaf ears when they did speak up.
The Tánaiste, at the launch of the national development plan, spoke of the abundance of funds available to the Government, all that was needed was the imagination for how it would be spent. In the current climate, with staff shortages in industry, many disabled people would welcome the opportunity to work.
I ask the Tánaiste to imagine the situation for Benny, who is blind. With the help of his personal assistant he travelled to Sligo to do a computer course to enable him to avail of employment. Six weeks after the commencement of the course, however, the FÁS funding for the personal assistant ran out and he had no means of transport to connect with the bus to Sligo 15 miles away.
What do I say to 18 year old Caroline who is in a wheelchair and is seeking a part-time personal assistant so she can get out of the house, socialise with her friends or go to the cinema? How can she live an independent life when she is trapped in her own home? Can the Tánaiste explain to Caroline that funds are available and all that is required is imagination?
What about the man in a wheelchair who, for six months, had to use a spoon to turn the taps in his own home on and off because he had to wait for an occupational therapist to call and assess before the taps could be changed? What about the elderly wheelchair bound woman who had to be lifted in and out of her home every day over three steps while she waited to be assessed for a ramp?
The current situation where I, as a health board member, receive as much for attending a health board meeting as my neighbour receives in domicilary care allowance per month for minding her disabled son who requires constant supervision is unacceptable.
Gone are the days of shoving people with disabilities into dark corners. They are still in the dark corners of the Government's mind, however. Imagination is not the issue, funding is. These people have been ignored for long enough. If the Government requires imagination, it should imagine being in their shoes.
Mr. Coveney:
I thank Deputy Jim O'Keeffe for tabling this motion. I clearly remember last year's pre-budget debate on funding for people with disabilities. It was the most intense and emotional debate I have witnessed in the House since I have been here. This year will be no different. The Government has not yet taken seriously enough its duty toward the huge number of people with disabilities in the community .
I accept the Government has made some pro- gress in the areas of disabilities and carers. That is only the tip of the iceberg. This week we saw the announcement of massive increases in investment and spending by this Government on infrastructure and housing, evidence of just how much money we have at our disposal. We heard talk of giving people equal opportunities, social integration and a fairer society yet we see a miserable increase in the overall spending on the disabilities sector in the Estimates.
There are an estimated 140,000 people with physical and sensory disabilities who have yet to experience real integration into society from a social, economic or educational perspective on an independent and equal basis to those who do not suffer from disability. There is not even an accurate, official list outlining the number of people with an intellectual disability. We are, however, aware from Government reports that 1,000 people with an intellectual disability live in inappropriate surroundings and thousands more are on waiting lists for essential services such as residential or respite care.
Government spokespersons have stated many times that they are committed to the recommendations contained in the report "Towards an Independent Future". If that is so, why do we not see more evidence of that commitment from a funding point of view? Lack of resources is no longer a valid excuse.
I will focus on one area – the right of an individual to live independently and fulfil his or her potential as a human being in the community. The Independent Living Movement has put forward a pre-budget submission which makes a great deal of sense. It proposes that a pure personal assistance service would be provided in a secure way by Government funding to allow as many people as possible to live as independently as possible. It suggests that people with disabilities who need assistance for more than 20 hours a week, referred to as "leaders", will be involved in choosing the type of person who will be involved in caring for them. They will also be involved in deciding what tasks they need help with and when they will need help. Assistance in independent living includes assistance with personal and domestic needs, as well as social, educational and work activities. That is why each individual is different in his or her requirements and so must be involved in choosing the tasks where help is needed.
A proper, pure personal assistance service allows a large number of people with disabilities to do so many things that they cannot currently do by themselves. This is about giving people rights, empowering them to make choices by themselves and live by themselves, not depend on charities or their families, but to live a life by themselves and fulfil their potential. The Government must ensure that as many people as possible are allowed to do that.
There are many problems in this State that will not be solved by throwing money at them. In the disability sector, however, this is not the case. Throwing money at this problem will reap ripe rewards.
I move amendment No. 1:
To delete all words after the word "that" and to substitute the following:
"Dáil Éireann recognises the need for the further development of services to people with disabilities, their families and carers and approves both the Government's commitment to put in place an enhanced level of service provision in line with the commitments outlined in the Programme for Government and Partnership 2000 and the actions taken by the Government to date in meeting these commitments, which include the provision of additional funding of £91.662 million, the putting in place of arrangements to meet the educational needs of children with special needs and the enhancement of the Carers' Allowance.".
I wish to share my time with the Minister for Social, Community and Family Affairs, Deputy Dermot Ahern.
We do people with disabilities a disservice in the context of the debate, as illustrated by the front bench spokesperson of the Fine Gael Party, in introducing this motion – as distinct from the party's backbenchers who had something constructive to say. On one hand Deputy Jim O'Keeffe comes forward and raises the bar to ensure it cannot be climbed in one go and suggests that illustrates his commitment and that of his party to people with disabilities. Then Deputy Shatter, who, as health spokesperson, one would expect at this stage would understand how the health services are funded, goes round peddling the same untruth he peddled last year in relation to Supplementary Estimates and how we fund our services.
It insults people's intelligence to suggest that there is £80 million in a pot in the Department of Health and Children which I refuse to spend because I am a scrooge and that this debate will convince me to spend some money on the disability sector. That is the most foolish, stupid and insulting remark that could be made in regard to people with disabilities at this time.
Obviously, it struck home judging by the Minister's reaction.
I listened to the Deputy in silence and I ask him to respect my entitlement to speak.
I did not resort to—
As I explained to Deputy Shatter last year, if the buoyancy in appropriations-in-aid which includes health revenues is 12 per cent, the rest of the spending agreed at the beginning of the year – 88 per cent – is provided by the Exchequer. If the buoyancy is 13 per cent, the Exchequer commitment will be 87 per cent. The bottom line is that full allocation on health services and any other area in the Estimates, which is agreed by this House, will be spent. Can we have a constructive debate about what needs to be done for people with intellectual and physical disabilities and get away from a puerile, stupid debate that has no foundation in fact?
The Minister is taking £80 million less from the Department of Finance because he has reduced funding to that level.
I will not take up more time on this matter but I clarified it for the benefit of those who may have listened with incredulity to some of the Deputy's comments. It can be taken up at another more appropriate time, although it will be a re-run of last year's debate because what the Deputy is trying to achieve is predictable.
Will there be extra money similar to last year?
With regard to the principles that underpin the development of services for people with disabilities it is important to confirm that it is not just within the health services that improvement is needed for such people. Disability groups insist quite rightly that the health model of disability is not appropriate. People with disabilities wish to live independently with dignity and want equality and we must devise the structures and legislative and institutional frameworks that will allow them to do so on a rights based principle and not on the basis of them being entitled to health services because of their disabilities.
The need to emphasise their abilities is regarded as the positive framework through which these issues are addressed. That is not a party political point but one which is agreed by everybody in the House. The mainstreaming of services must be achieved to make sure that some gaps in services, to which Deputy Naughten adverted, are addressed not just on an individual basis, but generally. That is the challenge for services in my sector and other sectors that deal with disability issues. I have already stated on the record many times the Government's commitment vis-à-vis previous performance. People are entitled to examine the comparative performances of various Governments on this issue.
Our amendment states:
"Dáil Éireann:
recognises the need for the further development of services to people with disabilities, their families and carers and approves both the Government's commitment to put in place an enhanced level of service provision in line with the commitments outlined in the Programme for Government and Partnership 2000 and the actions taken by the Government to date in meeting these commitments, which include the provision of additional funding of £91.662 million, the putting in place of arrangements to meet the educational needs of children with special needs and the enhancement of the Carers' Allowance".
My colleague, the Minister for Social, Community and Family Affairs, will deal with the latter issue later.
The Minister for Education and Science earlier this year announced a major initiative in the special education area under which all children in the primary system assessed as having special needs arising from a disability will be entitled to an automatic response to those needs. He considered that this initiative represented a major advance in the education of all children with special educational needs and demonstrated the Government's commitment to the need to provide suitable education for children with special needs.
A total of £8 million has been allocated over the next two years for teacher and special needs assistant support. The Minister also recently reduced the pupil-teacher ratio in all special schools and classes catering for children with mild or moderate learning disabilities, emotional disturbance or a physical disability. These reductions will decrease the pupil-teacher ratios in all special schools and classes to the level recommended by the special education review committee and represents the full implementation of one of its key recommendations.
In addition, £3 million has been allocated this year to facilitate the introduction of escorts on all special school transport services and the provision of safety harnesses on such services when required. A further £800,000 has been allocated over the next two years for the purchase of special equipment for children with disabilities. The Minister also extended the remedial teaching service to ensure that all schools at first and second level had access to this service in September. These measures provide concrete evidence of the Government's commitment to ensuring that all children with special needs receive the support they require to enable them to gain maximum benefit from the education system.
While the National Intellectual Disability Database gives information on services currently provided and the current and future needs of persons with an intellectual disability, there are no definitive statistics in regard to the number of people in Ireland with physical and sensory disabilities. However, we are addressing that. Based on population trends in other countries, it has been estimated that the number could be as high as 200,000. However, not every person with a physical or sensory disability needs a health service. The report, "Towards an Independent Future", highlighted the lack of reliable information on the numbers and service needs of people with physical and sensory disabilities and recommended the establishment by the Depart ment of Health and Children, health boards and voluntary bodies of a database on the health service needs of persons with physical and sensory disabilities.
The database development committee recommended by the review group is already in place and hopes to complete its work by the end of this year. That will be an important and valued mechanism by which this or any other Government can set out a structured response to the identification of the needs set out in the database. That is the basis on which we have been able to proceed in the intellectual disability area with some success. As a result of the review, it has also been discovered that the programme needs to be accelerated to meet increasing and emerging needs because intellectual database statistics show a different matrix of requirements and services for people who can sometimes move from medium to high dependency. Thankfully, because people live longer, there has been more success in ensuring people experience social and health gains despite their handicaps.
The important role of the voluntary sector was fully recognised by the review group in looking at the organisation of services. It recommended the structured involvement of the voluntary agencies in the planning and co-ordinating of the services and the setting of priorities for the allocation of funding for the development of the services. It is a participative, not bureaucratic, model which provides an opportunity for people with disabilities to be involved not only in policy formulation or advocacy, but also in the allocation of funds. That is the entire basis upon which the co-ordinating committees have been established.
In response to Deputy Shatter, wherever management does not meet its responsibility in ensuring that works, I will take issue with it and I have no problem in doing so at any time. It is not acceptable that the mission statements of the committees will not be achieved if there is a lackadaisical approach in any individual instance, whatever the excuse. These committees are working well and there is room for improvement, as there is with every new partnership that is established. This is another example of where social partnership must deliver on the ground for people, particularly those who feel excluded and peripheral to the decision-making processes.
There have been calls by the Centre for Independent Living for a personal assistance service funded by an "Independent Living Fund". A personal assistant provides assistance at the discretion and direction of a person with a disability with everyday tasks, such as personal care, household tasks, etc. which the person is unable to do for himself or herself. A full PA service is defined by the centre as a need for at least 20 hours service per week. The "Independent Living Fund" is no more than a particular model for funding a PA service. It is important that the service is provided to those needing it. The PA service is one of a range of support services designed to enable people with disabilities to live in the community with the maximum degree of independence. The range includes home helps, home care attendants, respite care, day care, etc. and the objective of policy is to develop the range of services as a whole. The amount of funding to be devoted to the development of this service will be decided in each health board area in accordance with locally perceived priorities.
That is rubbish.
I look forward to the Deputy's contribution. As I have already indicated, health boards decide on priorities for the allocation of development funding in consultation with the regional co-ordinating committees for physical and sensory disability services. The Centre for Independent Living is represented on most of the co-ordinating committees. Out of £3 million provided for development of services in 1998, £596,000 was allocated to home support services, of which £190,000 was for personal assistance services. Final figures for 1999 are not yet available, but on the basis of returns currently to hand at least £400,000 has been allocated by health boards for home support services, of which more than £300,000 is for personal assistance services.
One of the difficulties in developing services for people with physical and sensory disabilities is the wide range and variety of disabilities included in that category. That makes the development of the services complex. From time to time a certain group will mount a campaign for the development of a particular service – respite care and personal assistant services are examples. While these and other services are of vital importance and are among the priority areas of development, they cannot be treated in isolation. What is involved is a wide range of interlocking and complementary services, designed to provide the person with a disability with a flexible range of services. Many individuals with disabilities may require a combination of several services to meet their needs.
Many of the services for people with disabilities are provided by agencies in the voluntary sector. While the State made a substantial contribution to the costs of such services, they were not fully funded by the State. In recent years, with falling income from fundraising, some agencies have been running services at a loss. One of the basic recommendations of the review group was that existing services be put on a firm financial footing in order to provide a sound basis for future development. Within months of coming into office the Government provided, by way of a Supplementary Estimate, £5 million to eliminate the accumulated deficits of these agencies. To help eliminate the on-going underfunding of the services, £2.4 million revenue was provided in 1998 and £6.4 million this year.
One of the areas singled out by people with disabilities and their advocates is aids and appliances for people with physical and sensory disabilities, an idea that emerged from these benches, not from any debate which took place here. Shortly after taking office the Government took an early opportunity to alleviate this problem by making £4.325 million available. It is estimated that more than 10,000 people with disabilities benefited. It was a practical example of what could be done quickly by this incoming Administration. That is not to suggest we have discharged our responsibilities even in relation to that matter as a reply to Deputy Shatter confirmed today. Since then a further £5 million capital funding was made available to health boards for aids and appliances. Despite these substantial injections of funding, health boards are still experiencing difficulty in keeping up with demand for aids and appliances. Consideration is currently being given to the allocation of further additional funding for this purpose.
In 1997, in addition to the £9.325 million made available for aids and appliances and to eliminate the accumulated deficits of voluntary sector service providers, capital grants totalling £675,000 were given to voluntary sector service providers for the provision of additional respite and long-term residential care places and much more work has to be done.
In 1998 a total of £8.4 million was allocated to the maintenance and development of services for people with physical and sensory disabilities. Of this, £2.4 million was devoted to eliminating core underfunding of existing services and nine of the main voluntary agencies in the sector received grants for this purpose. A further £3 million was provided for capital projects, of which £1 million was invested in aids and appliances. The balance of £3 million was allocated to health boards for the further development of the services. Almost half of this £3 million was used to create 50 new posts in health boards, such as speech and language therapists, physiotherapists, occupational therapists, social workers and public health nurses.
This year a total of £13.4 million, rising to £16.4 million in 2000 has been allocated to the maintenance and development of services of people with physical and sensory disabilities. Of this, £6.4 million is for the elimination of underfunding of existing services, £3 million, which increases to £6 million in a full year cost in 2000, is for development and £4 million is for capital developments. A further £2 million capital has been committed this year to a major building project which is being undertaken by Cerebral Palsy Ireland at its premises in Sandymount, which I visited also.
Since my appointment as Minister, I have consistently identified the ongoing development of services to persons with an intellectual disability and their families as one of my priorities. In addition to allocating significant levels of additional funding to develop new services and to meet identified needs in existing services, I have taken a number of measures to ensure the services are developed in a planned and orderly manner, in line with identified priority needs and with a secure financial basis for the future. While the additional services which have been put in place have made a significant difference, their impact on the waiting lists has been reduced because of the numbers of emergency admissions which have been and continue to be made to the residential services.
Given the age profile of clients and carers and the general unavailability of planned respite breaks, I am tackling the expansion of the residential services on three fronts: provision for the management of emergency cases which had not been there before I came to office; provision for new residential places for those who have been assessed as requiring this service and provision for an increase in the level of respite care. I have already begun this process and intend to develop it as additional resources come on stream.
For the first time ever – it is unfortunate to have to say this – the national capital programme for the intellectual disability services commenced in 1997 on a multi-annual basis. The importance of having such a programme available to the services has already been demonstrated in that, in addition to the capital allocated to support new developments, we have been in a position to approve a number of major initiatives designed to provide new or refurbished facilities for people with an intellectual disability accommodated in psychiatric hospitals and other inappropriate placements. For example, in addition to the major developments in St. Ita's, Portrane, initiatives which will benefit persons with an intellectual disability in services in St. Raphael's Youghal, St. Finian's, Killarney, St. Joseph's, Limerick, St. Canice's, Kilkenny, and Kelvin Grove, Carlow, are at various stages of planning or nearing completion.
I was pleased to be in a position to allocate revenue funding of £12 million in 1999, with a full year cost of £18 million in 2000, for the intellectual disability services. This funding is in addition to the £6 million already allocated to the services in 1999 to meet identified needs in existing services. This brings the total additional revenue funding provided in 1999 for the services to £18 million, with a full year cost of £24 million in 2000. There will also be a budget day package.
I am aware of the anxiety among families and service providers regarding the future development of services beyond the timeframe outlined in the original assessment of need 1997-2001. While the provision of the additional services outlined in that document will enable the health boards and voluntary agencies to deliver a greatly enhanced level of services to meet the needs of this population group, it is clear from the demographics that an ongoing investment programme will be required in the coming years if we are to provide an appropriate response to the needs of persons with an intellectual disability and their families.
I addressed this concern both at the NAMHI AGM last April in Galway and again when I met representatives of the Federation of Voluntary Bodies Providing Services to People with Mental Handicap, NAMHI and the National Parents and Siblings Alliance last week.
I reiterated my commitment to the ongoing development of these services and informed those attending the meeting with me last week that it is my intention, subject to Government agreement which I believe will be forthcoming, to have significantly reduced the waiting lists, in addition to having enhanced the level of respite care available, over the next two years.
The evidence of my commitment to these services is clearly demonstrated by the level of additional funding which I have provided since my appointment as Minister nearly two and half years ago.
Government policy in the care of older people is to maintain them in their own homes for as long as possible and the home help service has a key role in implementing this policy. There are approximately 11,000 part-time home helps employed throughout the eight health boards and the number of beneficiaries of the home help service throughout the country is around 20,000. Without going into details, the Government will provide in the Estimates additional funding to bring the minimum rate of payment for all home helps up to £3 per hour. Deputy Jim O'Keeffe referred to the background of the scheme. The home help scheme is a good neighbour scheme. At no stage either at £1.20, in the Southern Health Board when the Deputy was in office, or now at £3 is that meant to be the total remunerative value we put on the work of home helps. It is not meant as that type of scheme. It has been provided by the people in the health boards on that basis. We should not underestimate the voluntary nature of the home help scheme while improving the remuneration that people will obtain. I see Deputy Creed shaking his head in disagreement. That is the point. I will ensure they get the national minimum wage – which Members opposite could not agree on when in Government up to three years ago.
The Minister is treading on poor people.
I am not. It is unfortunate that people come into the House on a debate such as this and make a comment that is neither accurate nor helpful. Let me explain the current initiatives. Some are State funded while other voluntary schemes are flexible and working on the ground. Let us ensure they continue to work and that that scheme is not transformed into something else.
In relation to mental health services we will make substantial commitments in that area. The matter of inappropriate placement, an historical legacy, is being dealt with and there will have to continued progress in that area. The Estimates outline what we will do, not exclusively, because there will also be a budget package and the national development plan which has been explained in some detail. I wish to hand over to my colleague, the Minister for Social, Community and Family Affairs, Deputy Ahern, to explain the major improvements he has made. It is fair to say that a degree of optimism for the future by people with disabilities, older people and those with mental health problems is justified on the basis of present trends and especially on the basis of the Government's demonstrable commitment to take all possible steps to enhance the quality of life for these population groups in the years ahead.
When the Government took office in 1997 it promised in An Action Programme for the Millennium to do two things with regard to the carer's allowance. First, we said we would progressively relax the qualifying criteria for the allowance to ensure that more carers got the benefit and, second, we said we would increase the value of the allowance in real terms. We delivered on that commitment.
In last year's budget I introduced a range of measures at an additional annual cost of over £18 million to improve and develop the position of carers and the carer's allowance. These measures, which were implemented between April and August this year, bring expenditure on the carer's allowance scheme in 1999 to over £60 million, which represents a 33 per cent increase over the £45 million spent in 1998. I believe it is the biggest percentage increase allocated to any scheme in the social welfare code and is probably one of the biggest increases awarded to any other scheme in a similar Department. This increase is reflected in the increasing numbers of carers in receipt of the allowance, which are up over 50 per cent, from 9,200 when we took office to 13,850 carers at the end of October this year. This is a true reflection of the concern and commitment this Government has for carers and the appreciation we have for their valuable role in our society.
The carer's allowance was introduced in 1990 by my predecessor, the Minister for the Marine and Natural Resources, Deputy Woods. A Fianna Fáil/Progressive Democrats Government introduced the payment and in the last budget a Fianna Fáil/Progressive Democrats Government introduced the biggest reform of the allowance. In this respect, no other Government has done as much for carers, but more needs to be done.
The Government is committed to supporting care in the community to the maximum extent possible. People want to live in their own homes with their families. Families want to be able to care for their loved ones at home. We have a great tradition of family support in this country. Public services could never replace the vital work carried out by families and communities.
As Minister with responsibility for family affairs, I believe the Government must work in partnership with families and support them in every way possible. It was with this in mind that I introduced the range of measures in support of carers in last year's budget. We extended the carer's allowance scheme to all carers who are caring for someone between the age of 16 and 65, regardless of the source of income of the care recipient. We introduced an annual payment of £200 to all carers in receipt of a qualifying payment to use for respite care. We extended the allowance to include carers who are looking after children in receipt of a domiciliary care allowance from the health boards. My colleague, the Minister for Health and Children, has announced that this allowance will be extended to children under two years of age from 1 January 2000. As Deputy Jim O'Keeffe remarked, we want action, not words. The action is on this side of the House. When the Deputy's party was in Government it did not introduce these measures, although he is calling for them now.
I am glad.
I compliment the Minister for Health and Children for introducing that much needed change. Consequent on that change, the carer's allowance will also be extended to carers of this group. The cost of this extension is estimated to be in the region of £1 million annually.
I extended the free travel and the free telephone rental allowance schemes to all people in receipt of the carer's allowance and related payments to help alleviate the isolation felt by carers. I eased the residency and the full-time care rules to include a larger number of carers and to make it easier for carers to engage in therapeutic and economic activity outside the home. These are just a number of the many changes I made last year for carers.
I also introduced a range of measures worth an additional £20 million annually in last year's budget in support of people with disabilities. These measures, in brief, include the continuation of disability allowance for existing recipients who go into hospital or full-time residential care, the increase of the upper ceiling for entitlement to the qualified adult allowance from £90 to £105 per week, the doubling of the additional income limit which applies under the fuel allowance in the case of invalidity and disablement pensions and the reduction of the age limit for the back to education allowance for people with disabilities from 21 to 18 years.
My colleagues in Government, the Minister for Finance and the Minister for the Environment and Local Government, also brought forward proposals last year to assist carers and people with disabilities. The Government is conscious of this cross-cutting approach and the fact that it is necessary. Most recently, the details of a range of new social inclusion measures in the Government's review of its action programmes were announced and I take this opportunity to reiterate the point that building an inclusive society – one where everybody feels they belong – is the key objective of the Government. Following on from the National Economic and Social Council's call for an increased emphasis on social inclusion, the review of the action programme sets out a range of specific commitments to improve the position of all our people. One of our key commitments is that a co-ordinated approach addressing the needs of carers be established. This will include establishing a new partnership model to facilitate the State, in conjunction with the private sector, to develop an improved system for meeting the costs of long-term care and a pilot system of needs assessment for carers and people needing care.
In looking towards the longer term, I am delighted to note that Deputy Jim O'Keeffe now accepts the fact that in a number of years we will have a much older population. On many occasions during Question Time both he and his colleagues denied my figures. We will look at the issue of a PRSI benefit arrangement for care recipients, that is, those in need of care as proposed in the review of the carer's allowance completed by my Department. Given that there is a high probability that many of us will need some form of long-term care in the future, such an arrangement could enable care recipients to meet some or all of the costs of their own care. The Government agreed, given the complexity of the issues raised, that this proposal should be pursued at both the policy and operational levels as a separate consultancy project and my Department is progressing this proposal.
Another issue which I have asked my Department to pursue is the way to assist and ease the pressures on those who are caring and also working full time. A working group has recently been established in my Department to examine the operational details involved in the introduction of a carer's benefit scheme. This would facilitate carers in employment to temporarily leave work to care for somebody at home. To fulfil the Government's commitment on needs assessment, a working group, chaired by the Minister of State at the Department of Health and Children, Deputy Moffatt, has been set up to examine the introduction of a needs assessment. The needs assessment would encompass both the needs of the care recipient and the carer and would separate care needs from income support and could be used by all State organisations which provide reliefs or grants to those in need of care.
Tomorrow I will introduce in the House legislation to establish Comhairle on a statutory basis. This agency will use the combined skills and expertise of the National Social Services Board and the National Rehabilitation Board and will implement a key recommendation of the Commission on the Status of People with Disabilities. The measures which this Government has undertaken indicate the depth of our support for carers and people with disabilities. When we leave office we will stand on our record with regard to people who care and those with disabilities. It is a record that will stand the test of time. No previous or future Government will meet its standards in this area.
I wish to share my time with Deputy Upton, who will be making her maiden speech, Deputy O'Sullivan and Deputy Penrose.
Is that agreed? Agreed.
I welcome the opportunity to support the motion. For the second year in a row Opposition Deputies have used Private Members' business to urge the Government to use the opportunity presented by the budget to make a real and substantial difference to the lives of thousands of people throughout the country. Last year the Government's response to our calls was piecemeal. The Government was long on rhetoric but short on action and, most importantly, short on funding. The improvements sought included doubling the number in receipt of the carer's allowance from 11,500 to 23,000. We were told it would have reached 15,000 by this stage but it has not, as the Minister outlined this evening.
It has not taken full effect yet.
Another improvement sought was the increase in the carer's allowance to £100. A £3 per week increase was granted for carers under 65 and a £6 increase for those over 66. That was from June 1999. Another request was for the abolition of the means test for full-time carers but that did not happen. Another was to stop regarding the carer's allowance as taxable income but that was not granted. Another was to introduce a carer's benefit for carers who have to give up paid work to care at home but there was nothing for them. Another was to abolish VAT on incontinence pads and other basic care items but no improvement came about. Can we expect something more hopeful and positive in this budget? I sincerely hope so.
The motion adequately summarises the failure of the Government to tackle the ongoing crisis in funding for carers and people with a disability. That this crisis and lack of resources should continue to this day is a disgrace. Deputies have repeatedly referred to the historic level of revenue flowing into the Exchequer – the budget surplus will be in excess of £6 billion this year. Never in the history of the State has a Government been graced with such a remarkable financial position. The choice for politics now is how we use the new-found resources available to us. What issues do we treat as priorities? What will we do with our new-found wealth to create a fair and just society as we enter the new century? These are the issues the political system must now face.
We in the Labour Party look forward to this task. Despite the cynicism which prevails in some quarters, we believe politics is entering an exciting, important and challenging time. We have the resources and the opportunity to ensure the principles of justice and equality are made a reality for all people in society. To that end, the Labour Party held two important fora in the past month. I and my parliamentary colleagues met a wide range of organisations which work on vital social issues. One of the conferences, entitled "Promoting Care and Independent Living", addressed the exact issues referred to in the motion.
I wish to communicate to the three Ministers present the anger and frustration in the voluntary sector with the Government's response to date. At the heart of the motion are the civil rights of people. The lack of funding for social services for carers and people with a mental or physical disability undermines their social rights. It erects obstacles to their participation in society as full and equal members of the community.
The official response until recently has been based on the concept of charity and that thinking still exists in some quarters. Some of the most vulnerable people in our community are being told to take their place in the queue and not to expect too much too soon. It is an attitude which fundamentally underestimates the injustice which people with disabilities have had to endure since the foundation of the State. The Labour Party wants to fundamentally change this attitude. To this end, my party leader, Deputy Quinn, recently published the text of two constitutional amendments which would expand the definition of citizenship in the Constitution.
In the context of the motion, these amendments would have significant effects. One amendment would enshrine in the Constitution the right to adequate health care and the right to an adequate standard of living and other means necessary to dignify existence, something which is not in it at present. This amendment would, in effect, place a political and moral obligation on the Government to ensure that the basic requirements of citizens are met. How can a family enjoy a dignified existence if it cannot avail of a respite place for a son or daughter? How can a person with a disability enjoy a dignified existence if they have to join an ever-growing waiting list for some of the most basic aids and appliances? These are issues which can no longer be dealt with on the basis of charity. We must adopt a rights-based approach to the issues of disability and social care. The Labour Party's constitutional amendment is important in this regard.
In addition, we have proposed an amendment which would, among other things, address the constitutional issues which arose when the original Employment Equality Bill was declared unconstitutional during the lifetime of the previous Government. The Constitution should not place the rights of property owners above the rights of people with disabilities. The Government has side-stepped this issue since coming into office and we are now expected to wait until the disability Bill is published before we know where the Government stands on this issue. This approach is not good enough. The courts have established that, under the Constitution, the rights of property owners come before the rights of people with disabilities. We must amend the Constitution to put right this matter and we should do so immediately.
In my role as spokesperson on older persons' issues, I wish to comment on the position regarding carers. Life expectancy has increased due to medical advances and, accordingly, many more people are in need of care. Family carers in the home are expected to provide the bulk of care in this country. It is estimated that there are in excess of 100,000 carers in Ireland and little more than 14,000 are in receipt of the carer's allowance, which despite all the riches available to it last year the Government could only see fit to raise to £76.50 per week.
What did the Deputy's party do?
It is a case of changing times and changing attitudes and the Minister knows it.
No record.
Never before was as much money available to a Government, Minister for Health and Children or Minister for Finance to deal with inequalities. More funding should be allocated to provide an adequate system of community care.
Where was Deputy Quinn when he was Minister for Finance?
This would include the provision of more professional workers such as public health nurses, occupational therapists, physiotherapists, community social workers, care attendants and home helps. A liaison person with each community care area who would assess carers' needs and liaise between carers and the statutory services should also be appointed.
The forthcoming budget must address the legitimate demands of carers. This includes a substantial increase in the rate of payment of the carers' allowance to £100 per week as stated in the motion. In addition, the stringent means test which applies to carers must be radically reformed or, better still, abolished. Although nearly 80 per cent of carers are women, the means test is based on the household income with the Department insisting on the antiquated notion that a woman enjoys half her partner's income. This is discriminatory. Carers should be assessed individually and they should be provided with the necessary finance to adequately care for their loved ones.
Every Member knows the sacrifices carers make in terms of their careers and ambitions to attend to the needs of a sick or dependent loved one. This sacrifice cannot be taken for granted anymore. The State must recognise and take account of the huge savings which accrue to the health budget because family members are prepared to care full time for their relatives and loved ones. These savings should be calculated and channelled back into resources and support for carers. The test of this Minister and this Government will be how they deal with those people most in need. Carers are providing an invaluable service, the cost of which it would be impossible to quantify. I hope the Minister will respond to their needs and demands.
Dr. Upton:
I welcome the opportunity to deliver my first contribution in the Dáil on the issue of provisions for the people who have been most neglected in our society over the years, namely, people with disabilities, people with a mental illness, older people and the chronically ill. When I decided to enter national politics I made a commitment to this group of people to fight to deliver a decent standard of living for them.
I hope that, in the lifetime of this Dáil, meaningful investment will be made to improve the lot of those who have waited the longest. I feel a certain sense of futility in making this contribution because I know that come this time tomorrow, the Government and its Independent supporters will vote down this motion. It is the normal practice of the Government of the day to reject Opposition calls but playing politics with a group of people who are living in poverty and inappropriate care is insensitive and uncaring. These people's needs should not become a political football. Now, more than ever, we have a real responsibility to invest in care facilities. We are fast becoming a rich and affluent society but that brings with it a social responsibility to those who do not have the same chances we have to work and live a full life.
I want to touch on some areas which require substantial investment in order to allow people with disabilities to have the same rights, choices and options as everyone else in society, to ensure that people requiring full-time care are provided for and that the people who administer that care are recognised by the State. The quality of assistance and care which we can provide can have a remarkable impact on the quality of life of the people being cared for. As it stands, we treat carers, personal assistants and home helps as low grade workers. The remuneration they receive is mere tokenism. In the main, personal assistants are employed under the community employment scheme which came under attack earlier this year when the Government attempted to reduce its numbers by 5,000 without having any regard to the valuable work being carried out by participants, such as personal assistants. It is crucial that the Government makes a commitment to fund the work of personal assistants from the Exchequer before the end of the year.
A commitment is contained in Partnership 2000 to provide 5,000 social economy jobs. I believe the case for developing 1,000 of these into personal assistants is crystal clear. Indeed, in the run-up to negotiations on a new national programme, the social partners also have a responsibility to ensure this happens. In terms of home helps, it is nothing short of a disgrace that we are standing over hourly pay rates of less than £3 or £4 for work which would cost the State thousands of pounds per week if it was carried out in a hospital. Home helps provide an invaluable service. Not only do they cover necessary domestic jobs and care duties but they regularly exceed their role by running errands and providing company for people. They deserve decent remuneration for that.
It is estimated that 100,000 people currently provide care for family members in their own homes. Their work continues to go unnoticed. The commitment of carers, the sacrifices they make and the expenses they incur in carrying out their work have never been meaningfully addressed. The time has come to change that. If Ireland's carers were to decide to abandon their duties where would we be? Our inadequate hospital and respite facilities simply could not cope. The knock-on cost to the State of providing for every person in need of care would immediately put the Government's national plan on ice. Carers make an invaluable contribution to the economy and to society and that must be recognised. I fully endorse Labour's pre-budget proposal to use the forthcoming budget as an opportunity to initiate the process of abolishing the punitive means test for carers. Furthermore, as with other payments administered by the Department of Social, Community and Family Affairs, the budgetary increase in the carer's allowance should be linked to average earnings.
Addressing the needs of people requiring care is about much more than assisting those who provide that care. We must invest in a package of supports which would substantially improve the quality of life for people with disabilities, mental illness or long-term illness. I am appalled by the level of supports which this group of people receive.
During my first week in the Dáil, I met protestors from the Irish Wheelchair Association. I was appalled by the run-down quality of their wheelchairs. They called them tins on wheels, a description which was too glamorous in some cases. Given that people with a physical disability sit in their wheelchairs for at least 12 hours a day, 365 days a year, wheelchairs should undergo rigorous and regular quality testing. The provision of decent wheelchairs and necessary aids and appliances for people with disabilities can make a significant difference to their quality of life. It is time to give them the quality of life they deserve.
One of the biggest scandals in our society is the manner in which people with a mental handicap, dependent older people and people with mental illness have been treated. The placement of people in unsuitable accommodation continues. Many older people requiring care currently occupy acute beds in our hospitals. People with a mental disability are still being treated in unsuitable institutions. Last year's budget did not do anything serious to improve this situation and I am not convinced there is a will to turn respite and hospital care around this year either.
All people in need of care should have access to respite care where necessary. No carer should have to work around the clock on a daily basis. They, too, should have a right to respite care and they should be assured that, when in care, their relatives receive the care and help they require. Capital investment in the provision of respite places is crucial as is the provision of properly trained nursing and medical staff. I am convinced that in the space of two budgets, provisions could be put in place to ensure the provision of resources for those in need of care and assistance. The niggardly approach which this Government has taken to providing for this group of people is, and has been, appalling. It is now time for those who have waited the longest to share in the spoils of our economic growth. It is payback time.
Carers' ability to continue caring and to cope with life when caring ceases is dependent on them having lives and interests apart from caring. Time off is vitally necessary to enable the carer to develop outside interests, as is a certain level of disposable income. Carers also need to be able to devote time to other members of their families. Breaks from the ongoing pressures of caring and a good night's sleep are basic necessities for carers. Respite of all kinds, in and outside the home, long-term and short-term, emergency respite when the carer is ill and access to suitable day care centres with activity programmes are required. Respite needs should be estimated and provided as part of patient management, not according to the current "you might get it if you're lucky" approach. Studies show that the health of many carers breaks down because of the stress of caring and that, eventually, carers become frequent users of health services. They do not have a healthy old age because their health resources are used up by spending their middle years caring for others. It would seem to be common sense to support carers in order to maintain their health and ensure that they, in turn, will not require care and become a further drain on the already overburdened services.
Congratulations, Deputy.
Debate adjourned.