Dáil Éireann - Volume 598 - 22 February, 2005
Disability Bill 2004: Second Stage (Resumed).
Question again proposed: “That the Bill be now read a Second Time.”
Mr. Deenihan Mr. Deenihan
Mr. Deenihan:A large number of people, including myself, attended a meeting in the RDS on 8 February to discuss this Bill. Most contributors were incensed by the content of the Bill which they were convinced confers no real rights on people with disabilities. They were also very annoyed — some speakers were outraged — at the Government’s intention to push through the legislation without consulting the various groups or listening to their concerns and reservations about the Bill. I realise there was widespread consultation before the Bill was introduced but I understand the Minister has yet to meet a large number of groups who have requested meetings. He may confirm this. This question has already been asked by a number of speakers. I appeal to the Minister to meet with these groups as soon as possible. There are genuine concerns about the Bill which must be resolved before Committee Stage.
Almost 90% of more than 30 organisations that made submissions to the Joint Oireachtas Committee on Justice, Equality, Defence and Women’s Rights were highly critical of the Bill, particularly its narrow definition of “disability” and obvious resource constraints. While the Minister for Finance is in the House, I would like to say that while everyone welcomes that he committed multi-annual funding to the tune of €894 million up to 2009, it is not ring-fenced for people with disabilities. Perhaps the Minister will clarify this aspect. I listened to the Minister say on radio this morning that the health budget may have to be cut back if there are significant payouts to people in nursing homes and their families because of charges that must be repaid to them. Could any cutbacks in the health budget affect the €894 million funding for people with dis abilities? I would like clarification on the matter as people are concerned about this aspect.
Speakers expressed concern about a large number of issues with some of which I wish to deal. The disability legislation consultative group, DLCG, was established in 2001 following the withdrawal of the Disability Bill 2001. That group carried out extensive consultation with State agencies and so on across the disability spectrum and it is concerned about the provisions of this Bill. I take that group’s views seriously. The DLCG believes that the definition of disability is too narrow. It is concerned that the definition excludes, as mentioned by a number of speakers, episodic conditions and early intervention needs.
I point out to the official present that the definition of disability that everyone seems to want included in this Bill is the one recommended by the DLCG and used in the Equal Status Act and Employment Equality Act. I ask the Minister why that definition was not used. There are two definitions of disability, the definition included in the Bill and the definition included in the Equal Status Act and the Employment Equality Act. When it comes to deciding which definition to use, which one will get preference? There will be confusion surrounding the definition in the future. Who will differentiate between the two definitions? Why should we not insert in the Bill the definition recommended by the DLCG, which I am sure Deputy Stanton will propose on Committee Stage? I hope the Minister will accede to this request before Committee Stage.
Assessment of needs is very much at the core of this Bill. Some people have referred to this Bill as an assessment Bill. It is important that it provide a clear right to an independent assessment of needs, but it does not do that. It must also provide for an individual’s right to progressivity on unmet needs identified in an independent assessment report. This must be done annually or wherever there is a change of circumstances.
The complaints system is far too complex and needs to be simplified and made more accessible. The appeals system needs to be independent of the Department of Health and Children and perhaps it should be the responsibility of another Department. The independence of the appeals system has been raised by a number of individuals and bodies. If it comes under the remit of the Department of Health and Children with officials from that Department reviewing appeals on which they would have made decisions, that would seem to present a conflict of interest and a contradiction. Responsibility for the system should be moved to another Department or the system should be entirely independent.
I mentioned to the Minister for Finance before he left the House that the Bill must provide for a ring-fencing of disability specific resources. There was widespread welcome from Members on all sides of this House and from all the disability groups and organisations for the €894 million announced in the budget for this area, but if such funding is not ring-fenced, it could be spent else where at any time over the next four to five years. If the Minister were to proceed with his threat to reduce health service funding, which I heard him mention on radio this morning, this multi-annual funding could be under threat. It is important to clarify that such funding will be ring-fenced, although there is no mention of such a provision in the Bill. Provision in this respect is quite open. It strikes me that disability groups and disability services will be provided for only when the money is available, that more or less everything else will be provided for first and then people with special needs and people with disabilities will be looked after. It is important to clarify the ring-fencing of resources for this area over the next four to five years.
The Bill should also provide for a clear statutory duty on all Departments and public bodies to include people with disabilities in their plans and services with appropriate monitoring and accountability. Where people are making decisions on the needs of people with disabilities, intrinsic to all decisions should be the view and voice of people with disabilities. It is important that those people who are affected in various ways are involved in the assessment process and the appeals process if it is to work. Unless one is affected in some way by a disability or working closely with people with disabilities and special needs, it is difficult to comprehend what those people go through and the various ways they are affected. Provision in that respect is also important.
There has been much change in terms of provision in the disability area in the past ten years and certainly in the past 20 years. I accept many strides have been made, but any legislation enacted should be subject to review after a number of years, say three to five years.
The issue of assessment is important. On reading through the presentations made by the various bodies, it is important that appropriately qualified people will carry out the assessments. Headway Ireland outlined in its presentation those who should carry out the assessments and it included a large number of disciplines. Currently, there is a scarcity of psychologists, sociologists, speech therapists and those in various other disciplines. An individual could be entitled to 20 services but may only get five of them. Where is the commitment to the provision of those other services? It is important that is addressed.
The qualifications of the people who will carry out such assessments have not been clearly defined. In terms of the composition of a board that will be set up or the individuals who will carry out the assessments and the availability of staff, will resources be available to provide assessments in a reasonable period for the large number of people who will seek them? There is no guarantee that the necessary staff will be available. There is a major scarcity of speech and language therapists across the country, although 24 individuals are currently being trained. There is no speech and language therapist in the Nano  Nagle school in Listowel where there are 90 pupils, and it is critical that such a service is provided. Who will make the assessments? If the service statement outlines 20 services, how will they be provided? If 15 services are not provided, what will happen?
The Bill is defective in two key areas — the way in which it addresses the provision of specialist services for people with disabilities and the changes it proposes for public services to ensure people with disabilities are included as equal members of society. The Bill fails to ensure that people with disabilities have access to the high quality specialist support services they require to participate in and contribute to society. The Bill offers a flawed and bureaucratic system that offers little more than what is already available.
The definition of “disability” in the Bill is too narrow and restrictive. It may exclude many people with disabilities who require supports and services, including many who are currently receiving services. There is widespread support for the use of the definition contained in other legislation such as the Equal Status Act.
The Bill does not provide for an independent assessment of needs, services and complaints. Assessment officers are responsible for deciding what services a person needs and liaison officers are responsible for arranging the delivery of those services. As such, they have enormous powers but they will not be truly independent, as the Health Service Executive will employ them. The complaints and appeals system is so complex and bureaucratic that it will discourage people from using it. The complaints officers will also be employees of the Health Service Executive and thus cannot be deemed truly independent. Many people with disabilities and their families have enough to deal with without having to fill in endless forms and attend meetings.
The Bill prevents people from going to the courts when they are being denied a service except in certain circumstances. In these circumstances, where access is allowed, it is limited to the right to go to the Circuit Court if the health or education authority fails to implement the findings of an appeal. Access to the High Court is limited to the right to challenge the outcome of an appeal solely on a point of law.
The assessment, liaison and complaints officers should be independent of the Health Service Executive so they can put the needs of the person first rather than being influenced by their relationship with the executive that must deliver the service. There should be an independent and straightforward complaints system, including the Ombudsman’s office or the Equality Authority, and people should have more reasonable access to the courts.
The Bill does not provide for an individual to have unmet needs met on an ongoing basis. When a person receives his first service statement based on his assessment of needs, some services may not be available at that time. It is vital that if these unmet needs cannot be met immediately or  in the short term that they are planned for and eventually met. These unmet needs must be reviewed and taken into account on a regular basis or there is a danger they will be forgotten. The Bill should progressively address the unmet needs of people with disabilities. The Bill should clearly state that unmet needs will be reviewed at least once a year and that the cumulative unmet needs will inform national planning for disability services.
Most importantly, the Bill does not promote the inclusion of people with disabilities in all public policies and services or oblige statutory bodies to provide for them. It does not oblige all Departments or publicly funded bodies to ensure that all services provided are available on an equal basis to people with disabilities. There will be six draft sectoral plans by different Departments, plans which will be vague and that will not include important issues. The plan for the Department of the Environment, Heritage and Local Government will not even address how it intends to respond to the housing needs of people with disabilities. It is vital if the Bill is to succeed that people with disabilities are at all times involved in the consultation and decision making process.
The sectoral plans should be extended to include areas covered by the Department of Arts, Sport and Tourism. There are 30 million people in Europe with a disability, representing major potential for this country if it became tourist friendly for people with disabilities.
Part 10, which details building requirements and access to public places gives a narrow interpretation and will not work. Currently, access is provided at the backs of buildings in areas that are difficult to get at. There are wheelchair ramps but they are unsatisfactory. I will return to this on Committee Stage.
Mr. Kelleher Mr. Kelleher
Mr. Kelleher:Disability must be debated in an open forum like this. Fianna Fáil gave a commitment in 1997 to bring forward a disability Bill but it was later withdrawn. That, however, afforded an opportunity for people representing disability groups to come forward and discuss these issues on a broad, consultative basis, ensuring their views were heard.
There is no doubt looking back that people with a disability were marginalised. They had no advocacy groups and often those with disabilities or those caring for them did not have the time or resources to express their views, to get involved in organisations or to highlight the concerns and needs of the people they represented. The disability Bill introduced in 1997 stimulated debate and brought about a consultative forum where people could highlight their concerns and needs in caring for people with disabilities and the challenges faced by those with disabilities.
Deputy Deenihan is right, until recently most public buildings were inaccessible to people who were wheelchair dependent. It is a sad indictment  of our society that we have to introduce legislation to ensure there is access to public buildings. It should be standard building practice to make provision for people with disabilities at main entrances and exits.
That lack, however, indicates the era we were coming from, a time when government did not discuss disability because there was no effective lobby group to highlight the concerns of the people with disabilities. Every Deputy has chased health boards, tried to secure occupational therapist visits to houses for people with disabilities and gone to Departments to highlight constituents’ needs. This Bill tries to address the concerns Deputies opposite and the Disability Federation of Ireland have raised. It is appropriate, therefore, that we acknowledge that we have come a long way in our approach to disability.
All Deputies agree that more needs to be done. A major package of €890 million was announced in the budget to ensure funding would be in place to address the deficiencies in the health and education systems in addressing the concerns of people with a disability. As a result of the Supreme Court decision on 15 February the Exchequer faces a huge bill to repay moneys that were taken illegally from people in long-stay nursing care. I diverge slightly from the Disability Bill, but it is important to state that without resources any Bill passed in this House is merely aspirational. We should consider availing of the National Pension Reserve Fund on a once-off basis to pay the bill that resulted from the Supreme Court decision. If we are serious about addressing the concerns of people with disability and of people who may not have a disability but who need other forms of medical care, we should access the National Pension Reserve Fund to ensure that those who need services now will not be denied them. I am quite sure, given the buoyancy in the National Pension Reserve Fund and the efficient manner in which it is being managed, that we will make up the resulting shortfall before we begin accessing it for pension purposes in 2025.
I understand there is €11.5 billion in the fund invested in various stocks and bonds and that the possibility of branching out into private property and public private partnerships is being considered. I believe the people who will be dependent on the fund in the future for their State pensions would agree to it being accessed at this juncture to ensure the provision of the myriad of services needed in specific areas, one of which is the disability sector. There were commitments in the budget. People speak about ring-fencing particular areas. However, by ring-fencing one area we deny other areas. For that reason I have tabled questions to the Minister for Finance and the Minister for Health and Children regarding accessing the National Pension Reserve Fund and I look forward to receiving their answers. I am sure the parties opposite would support such a measure, given that the Exchequer potentially  faces a bill of more than €2 billion if we do not invoke the statute of limitations regarding claims.
On the Disability Bill, I understand solicitors are advertising to encourage people to go to a solicitor on foot of the Supreme Court decision on nursing homes. Businesses must try to encourage clients to use their services. However, it is disingenuous of solicitors to actively encourage people to use their services with a view to accessing moneys when the Government brings forward its proposals. They might have waited until the Government had addressed the issues raised by the Supreme Court decision and had brought forward a mechanism, which would be published and debated in the House. If there were deficiencies at that stage solicitors could advertise and encourage people to instruct a solicitor in order to access what was rightfully theirs. What they are doing is like objecting to a planning permission before the application is lodged.
That situation would be mirrored in the potential of the Disability Bill if it were rights based. The Government is elected and it is in this Parliament that decisions must be made regarding the disbursal of revenue. No group is more entitled than the disability sector. Equally, nobody should head for the Four Courts to access their rights. That would result in diminishing the available resources and the State would be continually in the courts denying people their rights because those rights are resource based. The State would end up paying huge legal bills to solicitors and individuals. At the same time the rights of people who do not go to court would be diminished. Rights based legislation would deny the rights of people who, for various reasons, do not want to access the courts. There would not be a level playing pitch if the Government were to introduce the rights based legislation that some people in the disability area want. I understand their arguments because the issue is a very emotive one. It is traumatic for families and for people with disability. They want to know why they are not entitled to the services they need. Equally, there are many people involved, and in a rights based system the people who do not shout loudly will be left behind. Public policy should not be decided on the steps of the courts.
Needs assessment is an area we need to examine. If a person is assessed and deemed to need certain services that are not immediately available, how often will that person be entitled to a needs assessment? Their medical or psychological condition might deteriorate while they are waiting for a service to come on stream. Will they be entitled to a further assessment? Clarity is needed in the legislation to ensure that if a person’s needs are assessed and the services they need are not immediately available but later come on stream, their original assessment will be brought up to date. That is an area that must be addressed.
Regarding the availability of resources, if we do not rapidly increase the numbers of speech and language therapists, occupational therapists, physiotherapists, psychologists and other special ists, we could end up with many people assessing people’s needs and not enough people delivering services. If we do not increase the number of university places in those disciplines or advertise abroad for people with these skills, we will be continually assessing people and using up the resources needed for the provision of services.
It frustrates people that funding is available to alter a house for a person with a disability but it takes ages to get an occupational therapist to sign off on the need for a downstairs toilet or wheelchair accessible shower. It should not be necessary for an occupational therapist to visit a home to assess what is required. We need to expedite that part of the process. It is issues like this that frustrate and infuriate people with a disability or family members trying to cater for a relative with a disability. I appeal to the Minister to come up with some way of addressing this blockage in the delivery of good, positive front line service that could make an immediate impact on a person’s quality of life. County councils and city councils should have people who are engaged on this work full time and when an application is received they should inspect the house, see what is required and supply it. People have had to wait months and, on occasions, years for an occupational therapist. I do not blame occupational therapists. Obviously there is a shortage of occupational therapists, speech and language therapists and physiotherapists. There is a shortage of those at the front line who try to ensure that after an assessment the services are provided. If in law there is a right to assessment I fear that if the number of places is not increased dramatically and quickly we will end up assessing everybody and not providing any frontline services to those assessed.
There is no doubt there have been many positive aspects in terms of mainstreaming in recent years. However, schools are finding it more difficult to cope in trying to provide mainstream education. I have met parents and teachers who are at their wit’s end because they genuinely need more support to bring a child into mainstream education. This will have to be addressed in a forthright manner. If we are seriously committed to mainstream education resources will have to be increased. I recognise the budgetary package has been announced and that there is provision for the whole area of mainstream education. It is creating huge problems in schools which are trying to ensure a person with a disability is given the opportunity to be educated in mainstream education to enable him or her reach his or her full potential under Article 42 of the Constitution. We have a long way to go.
Rather than provide a mediocre service in every school good quality services should be provided in one or two schools in a particular area which would be the driving force in providing mainstream education facilities to those with a disability. Rather than dilute the services across every school the services should be put in place in schools that are accessible to the bulk of the community and front-loaded with the major sup ports. There are cases where teachers in rural schools are not able to cope unless more resources are put in place. There may be only one or two children who are drawing on the resources but need full-time care. That issue needs to be examined. Transport must also be taken into account if we are serious about and committed to mainstream education.
The equality legislation ensures that those with a disability are not debarred from the workforce. Given the percentage of those with a disability in the workplace this is a matter that needs to be addressed. It cannot be addressed solely through legislation — there must be a mind change among employers. There must be recognition that a person with a disability has much to offer. That a person has some form of a disability does not mean he or she cannot partake positively and productively in the workforce. We can have all the legislation in the world but until such time as there is a change in the mindset progress will not be made in this area.
This debate on disability is a positive step because it brings the issue to the fore. For many years as Deputies and public representatives we highlighted the problems of individuals rather than seeking a strong, structured advocacy organisation to highlight the many concerns.
It may be worth considering the establishment of a review group on a statutory basis to monitor the implementation of this legislation. It is fine to pass this legislation and hope the services will be in place. If the assessment area is not functioning properly and in the event of a breakdown in the perceived independence by people a review mechanism should be put in place on a statutory basis, independent of the Health Service Executive and the assessment structures. The review group should be from a wide section of the community with the necessary expertise and should assess whether the Disability Bill, with the resources available, has a proper impact on addressing services for those in the community with disabilities. In the area of assessment, there will obviously be challenges and, perhaps, the Health Service Executive and the independence of the assessors will be challenged in the courts. There should be a group of people who would analyse whether the intention of the Bill and the resources that will be provided in the disability package in the budget and elsewhere in the various health budgets are having a profound and positive effect on those with disabilities.
This is a positive step. We have already withdrawn a Bill because of rights-based issues. I wish for a positive debate. However, there are a few issues that have to be thrashed out on Committee Stage. When it is passed I hope it will make a positive contribution and increase the quality of life for many with disabilities.
Mr. Naughten Mr. Naughten
Mr. Naughten:I welcome the opportunity to speak on the Bill. As Deputy Kelleher said, I  hope when it is passed it will be significantly amended from that before the House today.
For generations, a set of physical or intellectual characteristics outside the dreaded norm denied countless Irish men and women, their basic civil and human rights. Those characteristics established more what they could not, rather than what they could do.
Thankfully, today, society’s discrimination against those who are “different” is lessening. That is thanks to equality legislation, the vast bulk of which is EU-derived, to the huge information and rights campaigns conducted by the disability lobbies and documents such as the 1996 report of the Commission on the Status of People with Disabilities, A Strategy for Equality.
The Disability Bill, long hailed as legislation that would definitively enshrine and guarantee basic rights such as access, has put paid to the hopes of thousands of people living with a disability and to the hopes of their carers. There should be no barriers to inclusion. The State has a moral duty to enable and to encourage, in every way possible, independent living for everyone with a disability. To make that a reality we have to create a system that asks people not what they have but what they need to make life better. We need to become a “can do”, not a “could do” State for everyone with a disability and for their carers.
According to the Combat Poverty Agency, seven out of ten people with a disability are unemployed. It is unacceptable in this day and age that the ESRI has found that 72% of households headed by a person with a disability live well below the poverty line. It beggars belief that a mother, caring for a child with a disability, is no longer entitled to the carer’s allowance if she becomes a widow and receives the widow’s pension. Surely, such an unthinking policy confounds common sense and compounds human tragedy.
We need more personal assistance services, more aids and appliances, more residential and respite care, more day resource centres and services, more speech therapists, occupational therapists and recognition of the costs incurred by those with a disability in their day to day lives.
This Bill has been long promised and we had a previous false start with the 2001 Bill which was withdrawn following overwhelming rejection by disability organisations and activists. In 1997, the report of the Commission on the Status of People with Disabilities, A Strategy for Equality, recommended the enactment of a disability Bill including the right to an assessment of needs, leading to a statement of needs and a plan which identifies how those needs will be met. After many false starts and promises, this Bill was published in its newest guise last September.
There are a number of significant flaws in it. Disability is defined as an impairment resulting in a substantial restriction in the capacity of a person to carry out a profession, business or occupation or participate in social or cultural life. My colleague, Deputy Neville, has already examined  this definition in great detail and the impact it will have on people with a mental illness. The area of disability as a whole must be considered. The Minister needs to sit down with the disability organisations to consider the definition of disability.
Many people are of the view that the current definition is being used as a filter mechanism to reduce the number of people who will be eligible to qualify for an assessment. The definition is based on a medical rather than a social definition of disability. Genuine concerns have been expressed about the definition. For example, the definition excludes episodic conditions and early intervention needs for individuals and this could be viewed as a restricting mechanism. We need to consider an all-encompassing definition which facilitates all individuals in the State and ensures they have proper access to the type of services needed.
It is critically important for this to happen at an early stage in a child’s life. Far too often I have come across cases where a child has been neglected in the early stages of life. As a result more resources are required at a later stage to address that child’s needs in secondary school compared to the investment that could have been made at an earlier stage with a resultant better outlook and quality of life for the child.
The Bill provides for a system of assessment of a person’s educational and health needs. This is to be carried out by an assessment officer working for the Health Service Executive who will have an independent statutory function. However it is to be carried out without regard to the cost or the capacity to provide any services identified in the assessment. It is turning into a wish list which is wholly dependent on the availability of resources. It is pointless to have an assessment to find out that an individual requires A, B, and C, when it is known for a fact that B and C will not be available within the resources currently provided for such services in the immediate future. There is no provision or commitment that those services will be provided over time. It is critically important that the Bill should provide for the individual’s right to progressively meet the needs identified by the assessment report.
Every Deputy in this House knows of children in their constituencies who have been assessed by an educational psychologist and for whom resource teaching support is recommended. The Department dragged its heels in processing those assessments. The initial backlog was in the waiting time for a psychological assessment. The partnership board in County Roscommon provided funding where families could not afford to pay for a psychological assessment. The backlog was then caused by the Department’s delay in processing the applications. The reports have now been shelved and the Department of Education and Science has decided to give a lump sum to each school who can then disburse it as it considers fit. This is a return to the situation where the resources are not available even though the  assessments have been carried out. My greatest fear about the provision in this Bill whereby assessments are carried out independently is that resources will not be made available.
I ask the Minister of State to examine the issue of the domiciliary care allowance which is a cause of great frustration to parents. For example, every year or two, a family of a child with Down’s syndrome is hauled in before a medical assessor to decide if the child is still entitled to a domiciliary care allowance. Bar a miracle, that child will still have Down’s syndrome in 12 months time, two years time and in 20 years time. When the child is initially diagnosed with Down’s syndrome, it should not be the case that he or she must be assessed on an ongoing basis. First, this is a demand on the limited resources available to the local health authorities. Second, it is a gross insult to the parents and many of them are extremely annoyed with the way in which they are being treated. They are hauled in for this medical assessment on a routine basis, either to determine if the child is cured or if the parents are abusing the child. This is what the parents believe is being assessed. I suggest that the Minister of State adopt a sensible approach and that the public health nurse should make a home or school visit to certify that the child is still in need of that domiciliary care allowance, rather than this medical assessment procedure which causes much frustration to parents in receipt of that allowance.
I acknowledge there are instances where over time a child may not require the domiciliary care allowance but a child with Down’s syndrome will have that condition for life. I do not understand the need for these medical assessments on a regular basis. Families regard it as a gross insult to be asked to appear before the medical assessor.
The complaints system envisaged in the Bill is far too complex. It needs to be simplified and made accessible. Accessibility is a key issue of this legislation. I refer to accessibility to services and my colleague spoke about accessibility to buildings. The appeals procedure as provided for in the Bill is not accessible. I ask the Minister of State to significantly amend this provision and ensure that it is not a complaints system that is cumbersome, expensive and incapable of taking a person’s needs into account. An appeals system should be freely available especially when section 19 is very similar to section 47 of the previous Disability Bill which stops people taking legal action. The State acknowledges that people have a need but in order to meet that need, they cannot take legal action. Section 19 only affords a person a right to appeal on a point of law and not on the issue of the decision. The appeals system should be independent. It should be freely available and accessible and not cumbersome as it currently seems to be.
It is critically important that resources are ring-fenced and that this is provided for in the legislation along with a commitment for multi-annual funding. Far too often, people in the disability  services area believe that when the squeeze comes — as was indicated by the Minister for Finance last night in respect of the health budget to pay for the elderly in nursing homes — those with disabilities will be the first to suffer because they are not the ones who will be able to shout the loudest. It is important that clear and concise mechanisms are provided to ring-fence resources.
When funding is made available for a service it is important that this service follows the individual client who needs it. This would be the single biggest step forward. The legislation would ensure that the service would be client-centred rather than service-centred, which is currently the case.
Turf wars are taking place among voluntary organisations across the country. Thankfully this is not the situation in County Roscommon where the Brothers of Charity Order is the one service provider but it happens in most of the neighbouring counties. A number of service providers seek to draw down funding from the Department. Unfortunately, their services are not subject to independent evaluation. While I was a member of my local health board, we did not have an opportunity to carry out any type of evaluation of services, although we saw the mess and turf wars. Every year the service providers made recommendations to the health board in which they presented a fait accompli. They divvied up the money, leaving health board members with no role. It is critically important that we eliminate the ongoing turf wars among an array of agencies.
If funding were to follow clients, the focus of services would shift towards individuals rather than services per se and people would be given commitments. I ask the Minister to shift the current focus from overall service to clients. This would be a major step forward.
I will give one example of the type of a turf war I encountered. A number of children from County Roscommon received speech and language therapy services in a facility operated by the Midland Health Board in its catchment area. The therapist providing the service was paid by the Midland Health Board which received resources from the Western Health Board to provide the service because the children were from its catchment area. Due to budget restrictions, however, a decision was taken to exclude children from County Roscommon from speech therapy services. As a result, children were left without services for 12 months, during which the Western Health Board continued to pay the Midland Health Board for the service.
This is only one example. I could provide numerous other examples of facilities lying idle because of disputes between different arms of the same voluntary agency or voluntary agencies competing with each other for clients to obtain capitation grants. This issue needs to be addressed. I ask the Minister to provide for  client-focused services as opposed to allocating funding for services in their entirety.
While it is critical that we legislate for genetic testing, in which I have a particular interest, the issue should not form part of the Bill. I urge the Minister to remove Part 4 and introduce separate, parallel legislation to address genetic testing. The Disability Bill is not the correct forum for addressing the matter. It is wrong to shove in at the end of the Bill provisions on an important issue that needs to be teased out more thoroughly.
The Bill provides that a review of the legislation will commence on 1 January 2014. Ten years ago technology in the area of genetics was much less advanced than today. If someone had told us then how this technology would develop in the next ten years, we would have considered that person a raving lunatic. Technology has advanced in leaps and bounds and if it develops exponentially, this legislation will be obsolete by 2014. The Bill must be reviewed in five years at the latest, especially in light of rapid change in this technology. A broad debate is required on genetic testing and related issues such as cloning, on which we have no legislation. It is wrong in principle to deal with genetic testing at the end of a Disability Bill.
Consent for genetic testing is provided for under section 40. What is the position as regards a child? Will a child or its parents give consent? I presume a guardian must gives consent, although this is not expressly stated in the legislation. What is the position regarding children in care? Will the Health Service Executive be required to give consent? I do not want a repeat of circumstances that arose in the 1970s, when children in care were treated as guinea pigs for vaccine trials by the health boards. The Health Service Executive will have responsibility to protect children in care, while having an interest in ensuring that clinical trials proceed. This is wrong and I ask the Minister to remove the section from the Bill.
The position regarding the disabled person’s grant is a mess. Its budget has been dramatically reduced and every local authority interprets the criteria differently. In County Roscommon, for example, an applicant may visit a general practitioner, rather than an occupational therapist. In addition, the level of resources available for grants is appalling. Unless a person is virtually bound to a wheelchair, he or she will not be entitled to a disabled person’s grant in County Roscommon. Due to limited resources, many people with disabilities are being ignored.
I am disappointed with the Bill. I ask the Minister to make significant amendments on Committee Stage to ensure we have legislation of which all Members can be proud.
Mr. Cassidy Mr. Cassidy
Mr. Cassidy:My contribution is in response to a submission made to me last week by the Disability Federation of Ireland on the national disability strategy. The federation welcomed the  Government’s recent announcement of an €894 million multiannual funding package which, it stated, “will go some of the way in addressing the historic under-funding of services and supports for people with disabilities.” I assured the federation that I would raise its genuine concerns about the Disability Bill during this debate.
As a Government Deputy, I fully support the thrust of the legislation, for which the Government parties seek the support of the House. As a constituency Deputy, however, I must plead the concerns of my constituents and, as the only Deputy for County Westmeath, I have given my word to raise a series of concerns this evening.
Mr. M. Higgins Mr. M. Higgins
Mr. M. Higgins:Will the Deputy have difficulty voting for the legislation?
Mr. Cassidy Mr. Cassidy
Mr. Cassidy:I always obey the Whip.
Mr. McHugh Mr. McHugh
Mr. McHugh:Will he have a clear conscience?
Mr. Cassidy Mr. Cassidy
Mr. Cassidy:I was born into the Fianna Fáil Party. Colleagues who were in the party for a time are now enjoying the pleasures of the Opposition benches. I fully respect everyone’s view and the democratic rights of constituents who have proven loyal and faithful to Deputies.
In its submission to me, the Disability Federation of Ireland described the recent announcement of funding as an “unprecedented and welcome development by Government.” It added that while the new funding is important, it is only part of a difficult solution. It continued:
We believe that, if people with disabilities are to become truly equal citizens in Ireland, this can only be achieved through legislation that ensures, promotes and enforces their status as equal citizens.
In Ireland, people with disabilities have the same rights as everybody else. What we need is to be able to exercise those rights. If the Bill is adapted to provide for specialist services and secure the inclusion of people with disabilities in public policies and services it will vindicate in legislation these rights. People with disabilities will have become equal citizens in Irish society.
Maria Fox, regional support officer of the Disability Federation of Ireland, asked me to raise ten points about which the organisation has serious concerns. The DFI argues that the definitions of disability are too narrow and that the Bill must provide a clear right to an independent assessment of need. It also contends that the Bill must provide for an individual’s rights to “progressivity” on unmet needs, identified in the assessment report. This must be done annually or whenever there is a change of circumstance. The DFI believes the complaints system is too complex and must be simplified and made more accessible. Moreover, the appeals system must be independent of the Department of Health and  Children and should perhaps come under the aegis of another Department.
The DFI asserts that the Bill must provide for a clear ring-fencing of disability-specific resources. It must also provide for a clear statutory duty on all Departments and public bodies to include persons with disabilities in their plans and services and to establish appropriate monitoring and accountability mechanisms. Public services should include all those provided in the public system by statutory and non-statutory entities. The DFI contends the Bill does not take into account the wider context. For example, it claims the Department of the Environment, Heritage and Local Government has not addressed some housing needs. The DFI further observes that clarity is needed on the impact of this Bill on section 14 of the Equal Status Act 2000. Its final point recommends a review of legislation after three years.
These are the concerns expressed by the DFI, which I have given my word to read into the record of the House. However, as a Member of this House for 23 years and a member of the Midland Health Board for 18 years, I recall difficult times in the 1980s, as will other Members such as the Leas-Cheann Comhairle and Deputy Michael Higgins. In 1987, after the Midland Health Board had put through its estimates, I drove home from Tullamore to Castlepollard and wondered what dreadful event had occurred when I discovered more than 40 cars outside my home. These were staff who had been put on protective notice in the local hospitals.
We have come a long way in providing for the needs of those who have never had an opportunity to grasp the benefits of the Celtic tiger. It is only with the return of the tiger that the difficult question of funding in this area has begun to be addressed under the aegis of a Minister for Finance who was formerly a Minister for Health and Children. It was a pleasure to be in the House on budget day to learn of the initiatives in regard to the funding for disability services.
I do not wish to be political in my contention that the difficulties in my constituency are no greater than those in the constituencies of other Members. However, if we put our hands on our hearts, we must acknowledge that this Bill represents a decent start. There is a long way to go and many issues to be addressed in providing for those who find themselves in this unfortunate position. All Deputies want to see a decent and well-formulated approach in regard to the needs of those with disabilities.
The provisions of this Bill have been carefully considered by the Government over the period since 1997. The Taoiseach has taken a personal interest in assisting the Minister for Health and Children during these deliberations. As much as possible should be done in the next several years, while decent funding is available from the Exchequer, to ensure that those in urgent need of assistance are given a reasonable quality of life. All Members agree that this is their entitlement.  I hope the Bill has a safe passage through the House and that the Minister will find ways to accede to the concerns of professionals. The DFI is at the cutting edge and has daily experience of the ongoing problems in this area. The issues that organisation has identified should be addressed, either through this legislation or in the near future.
Mr. M. Higgins Mr. M. Higgins
Mr. M. Higgins:I welcome the opportunity to speak on this important legislation. It is proper that Deputies on both sides of the House should welcome the commitment to expenditure on a multi-annual basis as announced by the Minister for Finance on budget day. The speeches made by Members of the Government parties have been thoughtful and committed, showing a great deal of care for the issues and cases that have arisen in different constituencies. I congratulate Deputy Cassidy on his wonderful achievement ag freastal ar an dhá thrá. It is one matter to be able to hear the concerns of the DFI in his constituency but another for him to change his sense of direction in regard to voting.
The case Deputy Cassidy outlined is interesting. However, I wish to make several points which are fundamental and representative of real difference between us. What is missing from the legislation is the word “rights” itself, or the acceptance of rights from a theory of citizenship. This is not an academic argument but one that draws attention to the question of how one views the entire issue of disability. Should we, on the one hand, look at the person who has a serious impairment, whether of a physical or psychological nature, which stops him or her from participating in a particular activity, or should we look rather at the society which contains within itself a set of barriers that stop all citizens from participating equally?
The first view suggests the necessity of a set of measures which propose a narrow definition for addressing what one feels to be particular difficulties in a manner in which one can afford to address them. The second perspective, which relates to the fundamental reform of society so as to take fully into account the rights of those with disabilities, requires that one must adopt a rights-based perspective. This does not require the immediate provision for everything that would be so recognised but it would require the Government to take upon itself the responsibility for a basic standard of provision and a set of principles which must be achieved progressively in order to meet the needs of every citizen.
This is fundamental. We have been invited to reflect on the current situation whereby parents must justify their children’s needs before a court. If one takes a rights-based perspective, no court would require the State to do what it cannot do but it would require the State to show that it was meeting the basic rights identified in the citizen’s case. This is what the Department of Finance has  set its face strongly against at every attempt to introduce disability legislation.
It is interesting that while moves have been made at the level of the UN to introduce a convention that addresses the issue of disability, it will be opposed tooth and nail by the Minister for Justice, Equality and Law Reform, Deputy McDowell, who uses the Constitution not as a means by which internationally asserted rights can be introduced into the lives of Irish citizens but rather as a conservative shield to block such rights as may arise through EU or UN conventions. He will argue that it is his business to say both citizens and any external assertion of rights will attune themselves to his conservative version of the Constitution’s fundamental right. The Bill’s fundamental flaw, therefore, is its deliberate eschewing of the responsibility of citizenship as would be carried in rights-based legislation. The Bill’s drafters took upon themselves the issue of definition. A practical example of this is contained in section 2. It states:
. . . “disability”, in relation to a person, means a substantial restriction in the capacity of the person to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment;
Representatives of the Irish Epilepsy Association have pointed out that an epileptic is one who is at risk from episodic impairment. Are they to be excluded from the legislation? This can be clarified on Committee Stage.
Mr. Fahey Mr. Fahey
Mr. Fahey:They are not excluded.
Mr. M. Higgins Mr. M. Higgins
Mr. M. Higgins:Using this as an illustration of this narrow construction, the term “enduring” will create immense difficulties for other forms of disability. If one had rights for having a disability, one would demonstrate it and it would be evaluated and accepted. The decisions as to whether it will be an enduring disability is an example of the difficulty associated with definitions based on premises that do not consider rights. When the Disability Legislation Consultative Group issued its report in February 2003, it entitled it Equal Citizens. It had spotted that if the problem lies with the society that places difficulties in the way of those who are disabled, then it is the society that should change, rather than it seeing the imperfections of the person, which is a defining purpose of this legislation.
We debated this issue long before the Disability Bill 2001. It has been debated since 1993. The Commission on the Status of People with a Disability was established in November 1993, with Mr. Justice Flood as its chairperson. It produced 402 recommendations, the ninth of which called for a disabilities Act to be introduced to set out the rights of people with disabilities and provide a means of redress for those whose rights are denied. The report recommended that the  Act should outlaw all discrimination against people with disabilities and should require public and private bodies, employers and educators, to make reasonable accommodation to meet their needs. The sheer thrust of this is to accept the citizenship basis of the rights that are involved. Having acknowledged a rights-based legislation, no one asked that provision be made for it overnight but that only the acceptance of the burden of responsibility of inclusiveness by the State.
Regarding the debate so far, I am fascinated by the arguments for designing a society in which through access no impediments would exist for the disabled. Opposition Members have received correspondence from the Design Institute, pointing out that it was not consulted on the wider issue of designing buildings and an environment in which those with disabilities would not be impeded. It is not only about them being impaired or the removal of obstacles, it is about facilitating the fundamental principle of inclusiveness.
There is an interesting example of what might happen with the legislation in future. Recently I listened to a report from the Minister for Finance claiming the costs of the debacle of taking moneys from vulnerable patients in nursing homes might have to be met by cuts in the education budget. This is waving a threatening stick, saying that if demands for rights-based legislation go too far, funding will be taken from others more needy. Immediately this exposes the absence of the acceptance of the principle of right-based legislation. The Minister of State is as familiar as I am with the extraordinary convolutions of people who assess and then handle the appeal process. Take the following scenario. After a liaison officer has prepared an assessment claim, one may wish to bring an appeal through the system proposed in the Bill. First, the liaison officer, or as many as the chief executive may decide, will offer his or her opinion on the case to the chief executive. The liaison officer, who enjoys his or her position at the whim and bid of the chief executive officer, is involved in an assessment that is neither free nor independent. It does not satisfy the basic principle of seeking another opinion. The necessary distance between the original opinion and the revised opinion does not exist. In any event, there is no question of changing the original assessment unless the circumstances of the individual involved are drastically altered. It is a representation of what we know already to be a less than satisfactory appeals process.
I would be glad to be corrected, if I am wrong, about my argument concerning epilepsy, but I can think of other examples. The term “enduring” and the concept of permanent disability is a nonsense when referring to those who have suffered strokes or are recovering from them. All one knows is what one needs at the time. One cannot say if one is permanently disabled or otherwise.  There is an issue of accessing evaluations. The appeals mechanism is flawed. Section 19 is reminiscent of section 47 of the previous Bill, and is a nod at abolishing what would have been the full function of a judicial review in the courts. In section 19, it was decided that an appeal could not be frustrated on a point of law. It states “an appeal to a court shall not lie against a determination of the appeals officer other than an appeal on a point of law to the High Court”. The substantive matter, therefore, cannot be brought to court. One loses that right regarding the full statement in the court at the price of what is accepted in the Bill. It behoves us as legislators to look precisely at what is on offer in the Bill.
I have sympathy for the Government on several points. I was a Cabinet member between 1993 and 1997. I shared a building with the former Minister for Equality and Law Reform, Mr. Mervyn Taylor. I know the difficulty one has in any Cabinet when introducing rights-based legislation. I also know of those with the permanent opinion within the Department of Finance who say over their dead bodies will they allow the principle of an open-ended system as suggested by rights-based legislation. Instead, they will only allow the introduction of what they consider to be an appropriate system that we can pretend is practicable. Draw the conclusion from where all that brings one — it is the defined availability of resources to the relevant Departments by the Department of Finance, which is defining the extent of the service available to those in need. The need is no longer associated radically with the person or reforms of the society; it is associated with what one can pay for.
If one looks at the United Nations convention and what is going on in the draft convention there, it has taken an entirely different role. If one looks at the proceedings in the Commission and in the European Union, the European Union’s definition of disability is a social one and it is quite wide. In the language it uses, it speaks of full participation and inclusion. The language in this Bill is at the other end of the spectrum; it is in terms of medical definition. We can argue on Committee Stage as to precisely how narrow that medical definition is and I am as open as anybody to be corrected on any part of it.
It would always have been difficult in any Cabinet to carry through rights based legislation, but it would have been the right thing to do. It would have been the genuine road down which to go if one was talking about some kind of principle of equality in a constitutional sense. I know it is not for me but for others to decide whether this Bill is consistent with the Employment Equality and the Equal Status Acts if asked that constitutional question. Certainly, there are matters on which those who have been gifted by the Constitution with the right to require such opinion by the Supreme Court might well seek it. They would be wise to do so because, frankly, the  definition of equality in the two Acts referred to is not the definition, as I detect it, in this Bill.
There is also the incredible practical difficulty. Many Deputies who made good speeches, including those on the Government side, spoke about the nightmare experiences of those with disability in dealing with such fundamentals as basic housing provision. It is an absolute nightmare and it is coming down with forms that must be filled in. Some disabled people would almost wish themselves dead because of the amount of time it takes to come to terms with the dramatic change in a person’s life when he or she can no longer climb a stairs. I will give an example with which I dealt recently. In a city development the plan required that one could not build an extension unless one left so much free space — that is, free space which the houses never had — so if one demolished the coal shed and half the kitchen, one would meet the requirement and the stairs was too narrow for a stair lift and so on. All of this convoluted nonsense is there and yet this is what we will see again as we make our way from liaison officers to assessment to appeals officers and so on. Not one of them will be able to change the fundamental decision and, under section 19, those involved have no recourse to the courts except on a point of law. No doubt we will come back to the definition of a point of law in section 19 on Committee Stage.
What I was speaking about in relation to housing was the importance of mainstream housing. I am not imputing anything to Members on the Government side; I am simply saying there is a fundamental difference between us. I have welcomed what the Minister for Finance said in his budget speech, the real commitment he has given and the multi-annual structure but I cannot say this is rights based legislation. It is nothing of the kind. It falls short on all the fundamental principles I have mentioned, that is, in terms of definition, the right of independent appeal, the absence of commitment to progressivity, which might be made a matter for review, the whole nature of inclusiveness, mainstreaming through housing and in terms of what it leaves the citizen.
I wish to dispose of one point a previous speaker mentioned, that there were many in the disability sector, across all the organisations, who accepted the principle that with all the rights based legislation, we would be giving the money to lawyers. That is a terrible suggestion. Quite frankly, there are some wonderful people working on rights based legislation here, in Europe and in the United Nations, including my colleague, Professor Gerard Quinn. I have heard it before. It is the failure of the State to treat every child equally that has required children’s rights to be vindicated by the Supreme Court through their parents who have had to drag the needs of their children through the courts with the State, including different Governments, often resisting  until the last minute. That was an abuse of the legal system.
What those of us who have been advocating a rights based system have been arguing for is not to place an impossible burden on the State but simply for the State to take the responsibility to show why needs are not being met rather than for the parents of the person who is disabled or the child in need to vindicate their right. Something very good might come of this as more and more Deputies and Members of the Seanad debate this Bill. I hope the Government, before Committee Stage, comes to accept — it would be a very good day for these Houses — the theory of citizenship which generates rights for which we may not have the money this year or next year but within four or five years. That is what would define equality for us. That is the direction in which the Equal Status and the Employment Equality Acts were going and that in which the rights commissioners in Northern Ireland and here and the United Nations were going. It is also most implicit in the language of the European Union. That is the road we should choose.
Mr. Fahey Mr. Fahey
Mr. Fahey:There is no such legislation anywhere in the world.
Mr. McHugh Mr. McHugh
Mr. McHugh:I wish to share time with Deputies Healy and Gormley.
I am glad to speak on the Disability Bill. This is the second attempt by the Government to introduce such a Bill. The first attempt failed miserably under a barrage of criticism from the disability groups. Unfortunately, it now appears that this second attempt will not provide the answers to the problems and is not the solution. The attempt to enact this legislation takes place against a history of neglect of the disability sector by successive Governments over the years. That neglect has led to a mistrust of governments by people with disability and for that reason, I fully support the campaign by the disability groups to put in place, once and for all, legislation which is foolproof and which, as far as possible, does not leave any loopholes through which this Government or future governments can evade their responsibilities. I hope the determined decision in the recent budget to put in place a €900 million multi-annual funding package will go some considerable distance to address the wrongs done to this sector of society over the years. This multi-annual funding is to be warmly welcomed and is certainly a very positive development.
The great expectation for the Disability Bill 2004 was that it would be rights based. It was more than expectation because Government appeared to confirm that it would be rights based. However, it is now very disappointing to find that promise has not been delivered on. I find the Taoiseach’s reason for not doing so implausible. He has basically said that it is not rights-based because we do not want to spend all our time in  courtrooms. This does not stand up and it is a very disingenuous and regrettable remark as it infers that the only reason the disability groups want the legislation to be rights-based is so that they can go to court. In reality nobody wants to go to court and least of all the disabled and their representative groups. They find it hard enough to survive and progress without having to engage in courtroom battles with the establishment.
It is very simple. The legislation should be rights-based because disabled people are entitled to their rights and this principle should be enshrined in legislation. In 2003 the disability legislation consultative group published a report entitled, Equal Citizens. This report contained many principles and recommendations. However, it is now a great disappointment that this Bill does not contain many of the principal features and recommendations of that report. This is very regrettable as the report contained the agreed vision of the disability sector on disability legislation.
I will now outline a number of specific flaws in the Bill, which have been highlighted by the disability groups. The definition of “disability” is too narrow and is not consistent with other legislation. For example the definition of “disability” in the Equal Status Act 2000 is more inclusive. The disability groups contend, and I agree, that the current definition of “disability” would exclude many people with disabilities who require services. For example the Brainwave organisation has stated that people with epilepsy would not qualify as disabled and consequently would not be entitled to access to services to which they are at present entitled such as disability allowance and occupational therapy. While the Minister of State has rejected this view this evening, I await further clarification.
The Bill does not provide the right for an independent assessment of needs and it does not address the individual’s rights to have their unmet needs addressed over time. The proposed appeals system is too complicated. It is recognised that the appeals process would create a great deal of unnecessary bureaucracy resulting in resources being diverted from the provision of services on which they should be focused. The proposed system entails the system appealing to itself, which is unacceptable and must be changed. It is vital for the integrity of the legislation that the appeals system be independent of the Department of Health and Children.
The Bill makes no provision requiring Departments and public bodies to include people with disabilities in their plans and services with appropriate monitoring. The Bill applies itself to the health and educational needs of people with disabilities. However, these people have other needs such as housing and employment needs. The provisions of the Bill need to be expanded to encompass those areas. While the disability legislation consultative group also proposed that the  implementation of the legislation be reviewed after three years, regrettably this provision is not contained in the Bill. This omission needs to be addressed to allow for regular monitoring.
While one can have all the legislation one likes if the resources are not provided to meet the needs, it is useless. The Bill should provide for the clear ring fencing of specific resources. The deficiencies I have outlined need to be addressed and rectified if we are to progress in the confidence that at long last people with disabilities will get their rightful dues.
Mr. Healy Mr. Healy
Mr. Healy:I am pleased to have the opportunity to speak on the Disability Bill. Obviously I welcome the multi-annual funding package recently announced by the Government, which will go some way towards addressing the historical under-funding of services and supports for people with disabilities. While the funding is important it only represents part of the solution. People with disabilities can only become truly equal citizens through legislation that ensures, promotes and enforces their status as equal citizens. In Ireland people with disabilities have the same rights as everybody else. We need people with disabilities to be able to exercise those rights.
The disability legislation consultative group identified ten flaws in the Bill in two key areas, namely the access to specialist services and public services. While these flaws have been mentioned during the course of the debate, they bear repeating. Fundamentally the definition of “disability” in the Bill is too restrictive. Many people who require services will be excluded under the terms of the Bill. Some people who already receive services may also be excluded. People will have no right to an independent assessment, which is a major issue for disability groups. No provision has been made for people to have all their identified needs met over time. The complaints system is cumbersome, expensive and basically incapable of taking account of disabled persons’ needs.
Fundamentally the Bill is not rights-based. It protects the State’s right to refuse services to disabled people by implementing in legislation clauses such as “where resources permit” or “where practicable”. It does not contain a statutory duty to mainstreaming and does not extend to the private sector. It pays little or no attention to existing equality legislation and its enforcement mechanisms. The various sectoral plans are not underpinned in legislation. As many Deputies have already said, section 19 has a very similar if not identical effect as section 47 of the disability Bill that was withdrawn some time ago.
In the area of specialist services, the Bill fails to ensure that people with disabilities have access to the high-quality specialist support services they require to participate in and contribute to society. The Bill currently offers only a flawed and  bureaucratic system, which guarantees little more than what is already available. Disability groups and individuals have serious concern about the Bill not providing for an independent assessment of needs, services and complaints. In the Bill as proposed the assessment officers will be responsible for deciding what services a person needs and the liaison officers will be responsible for arranging the delivery of those services and as such will have enormous power. However, these officers will not be truly independent. The Health Service Executive will employ them. The complaints and appeals system is so complex and bureaucratic that it will only discourage people from using it. As the complaints officers will be employees of the Health Service Executive, they cannot be deemed to be truly independent. Many people with disabilities and their families have enough to do without having to fill in endless forms and attend various meetings.
Section 19, which has already been mentioned, prevents people from going to the courts, except in specific circumstances. One will be able to appeal to the Circuit Court and one will be able to go to the High Court only on a point of law. Truly independent assessment officers, liaison officers and complaints officers are needed. They should not be employees of bodies like the HSE.
The Bill does not guarantee the ring-fencing of funds for disability services and supports. It has been claimed that the Bill ensures that the Minister will have to set aside a pot of money to be used for disability services only. However, the Bill limits the amount of money that the Minister can spend on such services. Funding for disability services will be provided only after the Minister has provided funding to meet all other services.
Disability groups and individuals have a particular difficulty with the Bill’s provisions in respect of mainstreaming. The Bill does not promote the inclusion of people with disabilities in all public policies and services. It does not oblige Departments and publicly funded bodies to ensure that all services are made available on an equal basis to people with disabilities.
The Government has produced draft sectoral plans for the various Departments. The plans, which are vague and general, do not address important issues. The plan for the Department of the Environment, Heritage and Local Government, for example, does not outline how the Department plans to respond to the need to house people with disabilities. More importantly, the Bill fails to oblige such statutory bodies to ensure that people with disabilities are included in the development of their policies, plans, programmes and services.
The disability bodies and individuals have serious concerns about the Bill before the House. They are disappointed that it is not rights-based legislation. It will need significant amendment if  it is to meet the demands of such groups and the needs of people with disabilities.
Mr. McCormack Mr. McCormack
Mr. McCormack:I would like to quote from the first paragraph of this Bill’s explanatory memorandum:
The Disability Bill is part of the Agreed Programme for Government and a commitment in “Sustaining Progress”. The Bill is a key part of the National Disability Strategy being put in place by Government to underpin the equal participation of people with disabilities in society.
The memorandum then lists a number of other elements of the strategy. I submit that the Bill will not achieve its objective of underpinning “the equal participation of people with disabilities in society” because it is quite clear that is deficient in many ways. I understand that the Department of Justice, Equality and Law Reform has presented the Bill. Given that three years passed since the Disability Bill 2001 had been introduced, I would like to know what the Department did for three years before it completed its preparation of this legislation.
I do not doubt that people with disabilities were marginalised in society in the past. Such people were so busy with their own lives, for example, working to overcome the obstacles placed in their way, that they were not involved until recently in the lobbying process necessary to achieve their rights. That has changed in recent years, however. For example, people with disabilities succeeded in ensuring that the defective 2001 Bill was withdrawn, with the help of public lobbying and pressure and the work of Opposition parties in the Dáil. The Government withdrew that Bill in shame just before the last election, while promising that it would introduce a rights-based disability Bill. It broke that promise, which helped it to be re-elected at the last election.
The then Minister of State, Deputy Mary Wallace, promised representatives of disability groups that she would consult all such bodies fully before publishing a rights-based disability Bill after the 2002 general election. The Deputy has been sacrificed in the intervening three years — she has lost her position as Minister of State — because of her determination to introduce a rights-based disability Bill, as promised. Before the last election, she said she would consult the various groups about the promised rights-based legislation.
Although the 2001 Bill was withdrawn almost three years ago, we continue to debate the inadequacies and shortcomings of the Government’s proposed legislation in this area. Why did whoever was responsible for the production of this Bill — it may have been the Minister of State, Deputy Fahey, or the Minister, Deputy McDowell — not consult fully the disability lobby  groups and the bodies representative of people with disabilities and their carers? They have disappointed those with disabilities yet again.
The following motion was passed at a meeting in the RDS on 8 February last:
This meeting, representative of people with disabilities throughout Ireland, resolves that the Disability Bill 2004 is seriously inadequate and defective. As it stands, the Bill will do nothing to improve the lives of people with disabilities or their families; it will not meet the widespread demand for basic rights; and it will force people with disabilities into a bureaucratic nightmare in the search for essential services.
This meeting further resolves that at a minimum, the Bill must be amended to include a clear, unequivocal right to an independent assessment of need for every person with a disability. That assessment must be translated in law into a statement of entitlement to services, together with an agreed plan to secure access to those services within a reasonable timeframe if the services are not immediately available. The Bill must also provide for a genuine appeals and complaints procedure that is independent in every way, so that persons with a disability have the right of redress in any situation where essential services are being unfairly denied to them. Finally, the Bill must provide for meaningful progress and targets in relation to issues of employment and access to buildings and services.
This meeting finally resolves that we will continue to campaign vigorously, and lobby our public representatives, until this reasonable position is met.
That motion, which was passed at a well-attended meeting, is fair enough. Deputy Cassidy mentioned earlier the faults with the Bill, as outlined to all Deputies by the various groups. I had great hopes until the Deputy clarified his remarks by saying that, despite his reiteration of the groups’ opinions, he would support the Bill and the Government’s amendments to it. It was quite a weak response, especially as the Deputy had given the impression that he was in favour of the rights being sought by the groups representing people with disabilities.
The Bill does not provide for a clear right to an independent assessment of the needs of people with disabilities. It does not put in place an independent appeals and complaints procedure, or meaningful targets for access to buildings, services and employment. Does it help people with disabilities who wish to upgrade their skills to return to college or full-time education? Will such people be allowed to retain their invalidity pensions when they return to education? I do not think that is catered for in the Bill. Such a provision should be included in the Bill because it can be shattering for a person on disability allowance to  be told he or she will lose his or her allowance if he or she returns to full-time education. We are saying to such people, in other words, that they will never work again, or they will not be in a position to take up work again, so there is no point in them trying to improve their educational qualifications. It is totally unacceptable. This issue should have been dealt with in the Bill.
Dáil Éireann 598 Disability Bill 2004: Second Stage (Resumed).