I welcome the opportunity to contribute to the debate on this long awaited legislation. It was originally introduced in 2001 but was then withdrawn. However, the intervening years have provided the Government with a major opportunity to consult extensively on what is required in the legislation and provided people with disabilities, their parents, carers and support groups an opportunity to meet and lobby politicians about the areas they feel need attention.
That happened in my constituency and I refer to a meeting I had with representatives of the Mayo Autism Support Association to discuss their needs in November 2004 following the publication of the legislation. They outlined their experiences, which highlighted a geographical issue among others. The experiences of people in the west, particularly in County Mayo, are worse than in many other areas. The association's representatives stated they received a poor service or in the case of Erris and Achill absolutely no service.
People with disabilities in County Mayo have no problem getting assessed and, in some cases, they were assessed not once or twice but three times. However, following the initial assessment, no service was provided. Parents had nobody to call for advice or help and there is little speech or occupational therapy. The Western Health Board and Western Care, which are responsible for services in County Mayo, have a major difficulty recruiting and retaining staff. The speech and occupational therapy service must be addressed at another level because if this service is not provided, the assessment and sectoral plans will make no difference because professionals will not be available to deliver them at the end of the day. It will be difficult to resolve this problem in the short term.
Many parents, carers and groups at the meeting did not know who was responsible for the educational and health needs of people with disabilities. No support service is provided. For example, if a speech therapist becomes pregnant or ill, nobody is available to cover her area meaning the service collapses completely. The loss or withdrawal of such services is a retrograde step for the individual involved and it is not acceptable because it causes a great deal of hurt and anger among the families affected.
There was also a feeling that once an assessment is conducted and a plan put in place, the individual should have a right to the service proposed. It was also felt inadequate respite and transport facilities were in place and the group was concerned about provisions in the legislation relating to resources and the practicability of providing services. In other words, rather than getting a rights-based Bill they were getting a resource-based one. This was a subject of much criticism.
Last October, before I met this group, I wrote to the Western Health Board to ask it about the services it offered to people with disabilities, and received two interesting replies. The first reply stated that those on the board were all in agreement that the current Government funding levels were inadequate to meet the requirements and that they had made submissions to the Department of Health and Children to highlight this. The other letter, from a person directly involved in the services, said that, unfortunately, the autism service was currently restrained by a lack of adequate resources to provide the level and intensity of supports believed necessary for children and families of children with autism in County Mayo. It went on to say that any help to lobby the Government in that regard would be welcome. The Western Health Board is the same health board that will carry out the assessments and the service plans on individuals under this new legislation, yet it feels its hands are tied due to the lack of available resources.
It is important that our view is balanced. The fact that we are discussing this legislation is a step in the right direction. It is important to recognise the amount of money that has been spent in the area of disability services. I compliment the Minister for Health and Children from 2000 to 2002, Deputy Cowen, who was very sincere in his efforts in the disability area. He announced a package at the time of €220 million for the provision of services for people with disabilities. Again in December of this year, in his first budget as Minister for Finance, he introduced a multi-annual programme of €900 million over 2006-09. This must be welcomed. I am delighted disability groups have welcomed the sincere effort he is making to deal with the issue.
It must also be recognised that there is an allocation of €2.8 billion in the Book of Estimates for the current cost of disability services. This is not an insignificant amount of money and represents a serious increase in the allocation of resources over several years. The sad reality, however, is that we are coming from a low base. Prior to this, services for people with disabilities were so inadequate that as a result we have massive problems in the country.
If we look at the people with disabilities, we see an aging population and improved mortality rates. There are more people getting older who will require these services for a longer time. This will require more residential places and respite services, which are currently inadequate.
A report was produced by the National Federation of Voluntary Bodies, which did an analysis of needs for people with an intellectual disability for the years 2005-08. With regard to the unmet need, it stated that in 2003 there were 2,284 people who were either without a service or without a major element of the service. It went on to highlight the need for day services, residential services, additional supports etc. Despite the fact that there has been a significant increase in funding, there are many needs that are unmet. This is a grave concern. While I welcome the move in the right direction, we must acknowledge that this can be improved upon.
While I welcome the fact that there was some consultation and that the Government showed some flexibility with regard to the preparation of this Bill, it must be acknowledged that it does not go far enough. I hope some improvements in the legislation will be brought about as a result of this debate.
Part 2 of the Bill establishes a right to an independent assessment of need, an individual service statement and redress. The assessment of need is carried out by an officer of the health board. This officer is supposed to be independent and will be appointed by the CEO. Most people in County Mayo have had no difficulty with the current assessment procedure. They can get the assessment, but the problem is they cannot get anything after the assessment. From now the situation will be somewhat similar. The person carrying out the assessment of need will be independent within the health board. The assessment will only cover the areas of health and education. It must be recognised that people with disabilities have many other needs. Admittedly, health and education may be the most important of their needs, but they have other needs such as housing, transport and employment. While this Bill deals with sectoral plans, when those plans are produced and finalised they will have to be evaluated in detail to examine how they deal with the needs of people with disabilities.
To return to the assessment of need carried out by an independent officer of the health board, it will be carried out without regard to cost considerations and will be a true assessment of the needs of the individual. This will create huge expectations. In dealing with parents and people with disabilities, I have found that when they get the assessment of need they feel they know exactly to what they are entitled, yet when it comes to the provision of the service they are caught up by the inadequate resources of the health board and cannot get the service they have been assessed as needing. Now that this right is enshrined in legislation and people will have the assessment within a three-month period from when they apply, people will have huge expectations. I expect there will be much anger among the families who have their needs assessed and ultimately cannot get the required services.
Section 10 deals with the individual service statement. A liaison officer from the health board will be appointed, but will, supposedly, be independent of it. It is not good enough for a person to be declared independent, he or she must be seen to be independent. In a situation where a health board officer carries out an assessment, prepares a service statement and, ultimately, deals with an appeal, we must ask whether the service will be seen to be independent. This lack of independence is the criticism I get most from groups looking after people with disabilities and it should be addressed.
Once the assessment has been carried out and the liaison officer comes to produce the service statement, the problem is that the legislation requires the liaison officer to have regard to the health board budget for that year and other criteria, including the eligibility of the person for the services and the practicability of providing the service. This is the real stickler in this situation. I already mentioned that two letters I received from my local health board stated that resources were inadequate. In practical terms, speech and occupational therapists are not available on the ground. With this Bill we have created an expectation in the minds of individuals and families that once they get their assessment of need they will get the services. Sadly, however, when the health board budget and the practicability of providing the service is taken into consideration, the service cannot be provided.
We hope to see much improvement in the area of resources, but this will not happen overnight. Even if the Disability Bill gave a person an automatic right to what was in the assessment of need, it could not be provided because we do not have the people on the ground to provide the service. How we marry these two factors is a difficult area for the Government. Staffing, in particular with regard to speech and occupational therapy, is a significant problem in County Mayo. Something must be done in this regard. I know children with autism and other disabilities in my constituency who have never seen a speech therapist. In some cases children will be contracted out to attend a private speech therapist for six sessions only. It would be better not to do anything than to provide that level of service for a child suffering from a disability and then stop it. I see significant problems in this area. How will a person with a disability be better off as a result of this legislation, if passed, than he or she was six months ago?
Section 12 deals with records and reports. This is an important measure. The Bill provides that health boards must keep records of the service planning and that these records must be submitted each year to the Minister for Health and Children. I am concerned about the level of service in County Mayovis-à-vis other parts of the country. The only way this will be highlighted on an annual basis will be if the report goes to the Minister and it turns out that a person in my constituency is getting a substandard service to that of a child or adult with a disability in another part of the country, which is unacceptable. I believe that is the situation. My experience is confined to County Mayo where a substandard service is provided. This matter must be addressed. We have many policies on the regions and so on that do not work and we cannot allow it to continue in this area.
There are three stages in the redress process; the complaint, the appeal and enforcement of the plan. Section 13 allows for making a complaint in regard to an assessment or a service. Section 14 requires the CEO of the health board to appoint the complaints officer who will be independent in the performance of his or her function. The problem is that while complaints officers may be independent they must also be seen to be independent. There may be a better way to organise the appeals system so that one would appeal to a body other than the health board. Is it realistic for an officer of a health board to overturn a decision made by another health board officer, bearing in mind that they must both have regard to the exact same conditions in terms of resources and the practicability of providing a service? This issue is a stumbling block.
Sections 15 and 19 deal with the appeals officer who will be independent in the performance of his or her functions and will be appointed by the Minister for Health and Children. Although there is a move away from the health board the jurisdiction still comes under the Department of Health and Children. In effect, everybody dealing with the assessment and service plan comes within the remit of the Department of Health and Children. We could improve on the independence of the appeals process.
The appeals officer is given substantial powers to call witnesses, obtain documents, enter premises and ultimately, if necessary, to secure a search warrant from the District Court. An appeals officer may make a recommendation but he or she has to take into account the same considerations in regard to resources, eligibility and practicability to which the liaison officer also had regard in the provision of the service plan.
I have a problem with section 19, which provides that the determination of the appeals officer will be final and will not be referable to the courts except on a point of law. The entire process is carried out under the remit of the health boards and the Department of Health and Children without any real independence and a person who believes he or she is not getting his or her entitlements can only go to court on a point of law. I consider that a removal of a right from an individual. I ask the Minister of State, Deputy Callely, to inquire of the Minister responsible if anything can be done with this section.
I already referred to the predicament of people who had their needs assessed but, unfortunately, their service plans fell far short of what was required due to a lack of resources. As a result, many people are dissatisfied and angry. Having met many groups and individuals in my seven and a half years as a Deputy, I sense there is a great deal of anger out there. It is very hard to tell the parents of a disabled child that while their child needs help he or she cannot have it because the resources are not available. In County Mayo in particular the resources do not appear to exist and people are not getting any service. I find it understandable that parents are angry when they raise these matters.
Part 3 deals with access to buildings and services. As a member of Mayo County Council I proposed the adoption of the Barcelona Declaration by the council for the provision of accessible buildings for people with disabilities. I am aware that many county councils and urban councils also adopted that declaration but the reality is that while this has been taken on board in principle it is not always put into practice. I have heard it said that many buildings may not be accessible until 2015. We should ensure that all people, able-bodied and disabled, can gain access to public buildings. We should examine this matter as a priority.
The Minister for Education and Science spoke in the House recently about the treatment of children with special needs and how education services are improving for children in schools. I brought a matter to her attention some months ago and she is now carrying out a review in the area of support and resources for children with special needs in schools in view of the weighting system that was to be put in place in September 2005. I am not happy with the allocation of resources based on the weighted system. In particular I am not happy with the allocation of resources for disadvantaged schools in rural areas as opposed to urban areas. I remind the Minister that we anxiously await the outcome of that review. Many schools catering for children with special needs will be in a worse position in September 2005 unless that decision is reversed or seriously amended.
I am aware the Minister is actively consulting on this matter and examining it in a serious manner. I commend the Minister because when she was newly appointed she put her hands up in the House and said that she accepted discrimination existed in this area.
I am also concerned about individual sectoral plans. Assessments will be made regarding education and health but many other areas are also involved such as housing, employment, transport and so on.
There has been little reference to personal assistants although the debate about personal assistants for people with disabilities has waged for many years, especially because many of them were employed through community employment schemes. Unfortunately, once they had completed three years, personal assistants had to abandon their posts. It is important that this would be covered under the sectoral plan. I accept that there is a 12 month period before the plans must be finalised but this area needs to be examined.
The Bill is a step in the right direction. I welcome the significant increase in resources for people with disabilities. I ask that the Minister would focus on some of the points raised because with the contributions of Members on all sides of the House, we will ensure that people with disabilities get a better deal than they had in the past. Certain improvements could be made to the Bill which would be acceptable to everybody in the House.