Wednesday, 27 May 2015
Health Services for People with Intellectual Disabilities: Statements
I thank the Leader of the House for giving me the opportunity to state once again the Government's commitment to the provision of effective and responsive public services for people with disabilities, including those with intellectual disabilities. The provision of disability services is not just for the Department of Health. Under the Disability Act, there is an onus on all Departments and public bodies to provide the same services to all citizens, including those with a disability. This is a fundamental pillar of the national disability strategy.
In 2015, funding of almost €1.5 billion will be provided for health and personal social services. To illustrate the range and complexity of services and supports which this entails, residential services will be provided by almost 60 agencies to around 9,000 people with disabilities at more than 1,200 locations, ranging from large congregated settings to community group homes to supported independent living. Day services will be provided to around 22,000 people at 850 different locations by 80 organisations. Approximately 1,400 young people who are due to leave school and rehabilitative training programmes in 2015 will receive new placements. Respite residential support totalling 190,000 overnights will be provided. The target for provision of personal assistance or home supports in 2015 is 3.9 million hours. A variety of other services is also provided under the disability services programme, including respite, early childhood-family support, community based medical, nursing and therapy services, rehabilitative training, aids and appliances.
Our focus in 2015 is to bring about reforms that will positively impact on the way in which people with disabilities are supported to live the lives of their choice. This process of reform is being guided by the value for money and policy review of disability services, or the VFM as I will refer to it from hereon in. The title is off putting and I was not responsible for it but the purpose of the VFM review is to transform our disability services and make them fit for purpose. This transformation will entail migration from a group-based and often segregated approach towards a model of person-centred and individually chosen community-based supports. This approach will be underpinned by a more effective method of assessing need, allocating resources and monitoring resource use. Supporting people with disabilities to live a fully inclusive life is fundamental to this transformation programme.
I wish to outline how disability services are supporting people from childhood onwards. The HSE's national programme on progressing disability services for children and young people, zero to 18 years, aims to bring about equity of access to disability services and consistency of service delivery, with a clear pathway for children with disabilities and their families to services, regardless of where they live, what school the child attends or the nature of the individual child's difficulties. Implementation of the progressing disability services programme is taking place on a phased basis in consultation with stakeholders, including service users and their families. It is a key priority for the executive's social care directorate in 2015. Some €4 million was specifically allocated in 2014 to drive the programme forward, equating to approximately 80 additional therapy posts. A further additional €4 million has been allocated from 1 May this year to assist in implementing the programme in 2015, at a full year cost of €6 million. At 30 April 2015, 47 of the 2014 posts have been filled and a further 20 to 22 are at the stage of "post accepted" and the recruitment process is ongoing for the remaining ten to 12 posts. I am pleased to report that there has been a significant investment of additional resources into the health sector's primary care services in the past few years. Additional funding of €20 million was allocated in 2013 to strengthen the services and to support the recruitment of prioritised front-line primary care posts. I am confident that the additional resources being invested in primary and disability services will have a positive impact on the provision of clinical services to all children with disabilities, including those who may currently be on waiting lists to access therapy inputs.
This brings me to the matter of health funded supports for young people after they leave school. Every year, young people finish their second level education and progress to the next stage in their lives. For most, the hope is that they will progress directly to further education, vocational training or employment. However, young people who have more complex support needs will initially rely on life-skills training or day supports provided by the HSE. After completing a life-skills training programme many young people in this cohort will in time also progress to mainstream training and employment, with personal social supports provided by the HSE where required, while others will continue to require more intensive day supports. This year the HSE has allocated an additional €6 million at a full year cost of €12 million to provide training places and day services for this group. The provision of services to more than 1,000 young people and almost 500 life-skills graduates has in recent years posed a challenge to the HSE. Last year, thanks to a more streamlined approach by the HSE, almost 1,400 young people with disabilities who finished school or life-skills training received placements which fully met their needs. This is a remarkable achievement by all involved and a considerable improvement on the position in previous years. The HSE is building on last year's efforts and I am pleased to say that the HSE has informed me that it is on schedule to meet the day support needs of all young people with disabilities who are due to leave school or graduate from a life-skills programme in the coming weeks. Young people and their families will be notified by the end of June at the latest of the placement that will be available to them from September. One of the most significant projects being progressed by the HSE this year is the implementation of the person-centred approach to day services outlined in New Directions - Report on the National Working Group for the Review of HSE funded Adult Day Services. Service providers are actively engaged in delivering services with a more person-centred focus, person-centred planning is widely implemented, and a considerable quantum of service delivery is now community based.
There are now many excellent examples of progress in services in a more individualised and person-centred way. I have been very encouraged over the past two or three years to see the number of organisations and service users around the country that are immersing themselves wholeheartedly in the transformation programme. Many organisations are actively engaged in demonstration projects and are taking practical steps to support people with disabilities in the community and to explore new and innovative ways to do so. Organisations are also co-operating to share their experiences and provide mutual support. An example of this is the Next Steps Project which is a network of shared learning and support that has been set up by the National Federation of Voluntary Bodies which provides services to people with intellectual disabilities.
I am very pleased to tell Senators that the Next Steps Project received an international Zero Project innovative practices award earlier this year at the UN Headquarters in Vienna. Tomorrow, the federation will award all self-advocates and participating organisations with a certificate from the Zero Project at a special event. This will mark the hard work of each person who has participated in the project and each organisation that is working towards supporting people in living lives of their choosing. I want to take this opportunity to commend the National Federation of Voluntary Bodies and the project participants on this remarkable achievement.
An important element of supporting people with a disability to live in the community is housing. In July 2012, the national implementation framework was launched to support the Government's National Housing Strategy for People with a Disability 2011-2016 in continuation of the successful collaborative approach employed between the Department of Health and the Department of the Environment, Community and Local Government.
The implementation framework reflects the recommendations of the Government's mental health policy, A Vision for Change, and its disability policy entitled, Time to Move on from Congregated Settings - A Strategy for Community Inclusion, in regard to the phased movement, over seven years, of almost 5,000 people with intellectual, physical and mental health disabilities from institutions to community living. Time to Move on from Congregated Settings, which was published in 2011, proposes a new model of support in the community, is moving people from congregated settings to the community in line with Government policy. The report identifies that around 4,000 people with disabilities in Ireland, which is a figure based on the 2008 census, live in congregated settings that are defined as a residential setting where people live with ten or more people. At the end of 2014, this number had reduced to around 3,000. The HSE is planning for the transitioning of a further 150 people from congregated settings in 2015. I am aware that this poses significant challenges to many stakeholders, including clients, families, disability service providers, the HSE, various Departments and statutory bodies, and representative organisations. I am also aware that it will require a need for a major change programme. However, I have asked the HSE to ensure that the needs of people transitioning from congregated settings will be based on each individual's person-centred plan.
This Government is very committed to the protection and safety of our most vulnerable citizens. It placed regulation and inspection of residential disability centres on a statutory footing in November 2013. Every person who uses disability services is entitled to expect and receive care of the highest standard and to live in dignity and safety. Our aim must always be to ensure that people with a disability maximise their potential and live rich and fulfilling lives. They and their families trust us to care for them with kindness and compassion.
Compliance with HIQA standards for disability residential centres is a requirement under the service level arrangements between the HSE and voluntary service providers. Over 66% of designated centres for people with a disability were inspected by HIQA by the end of the quarter one of 2015, including inspections targeted by allegations of mistreatment. The lessons learned from them are continuing to improve the quality of services. Clients and their families can be assured that this regulatory regime is being rolled out across all residential facilities for people with a disability.
I am aware that HIQA has reported evidence of good practice, in the delivery of many residential services, to people with disabilities where the support and care needs of residents have been prioritised and there is a strong focus on the needs of service providers. I am also aware that the Department of Health has requested the HSE to develop action plans to address cases where HIQA has raised serious concerns regarding the level of care that people with a disability are receiving in a number of disability centres, including safeguarding the human rights of residents.
HIQA's findings can make for difficult reading. However, they serve as evidence that the regulatory process works effectively and in the interests of protecting vulnerable people in the care of the State. The HSE is implementing a comprehensive change programme of measures to improve the quality and safety of residential services for people with disabilities. Much work remains to be carried out to ensure that all facilities comply with the disability residential standards. While this is challenging for the HSE we must remember that the objective is to safeguard vulnerable people.
I welcome this opportunity to put on record the Government's position on services for people with disabilities. There is an onus on us all to use the substantial resources committed to disability services throughout the public sector more effectively and efficiently. We must also achieve better outcomes for this funding and bring about a real and substantial improvement in the lives of people with disabilities. This is a central tenet of the national disability strategy and a high priority for the Government, one to which I remain firmly committed. I thank the Cathaoirleach and the Members for giving me this opportunity.
Go raibh maith agat, a Chathaoirligh agus fáilte roimh an Aire Stáit. I am glad to see the Minister of State here again today. She is certainly a regular visitor to the Seanad.
We recognise, as I am sure everyone does, the fact that 18.5% of the population has some level of disability. Fianna Fáil has always, and one can say the same for most parties, demonstrated a strong commitment to provide support and services to ensure that people with a disability, either physical or intellectual, fulfil all opportunities that arise. Disability is not just about the health services. The Minister of State spoke about housing which involves the Department of the Environment, Community and Local Government. Disability is a social justice priority for us and certainly for me. Fianna Fáil firmly believes that the strategy must be sustained and implemented.
I support HIQA completely. It does fantastic work but the way it, the Department of Health and the HSE seemed to have a bit of a go at each other in regard to the Portlaoise case was worrying. I have a very close family member who works in the intellectual disability services and obviously supports HIQA and wants to provide the best possible service. However, it is the case that staff in the services find the onset of a HIQA inspection extremely stressful. That should not be the case, although I do not know what HIQA can do to change that. Rushing around in the weeks leading up to a HIQA inspection to ensure everything is in order creates a worse environment. Although there are some exceptions, in general, everything is in order and people do a very good job but I suppose HIQA is trying to ensure that is the case. Perhaps being apprehensive beforehand is the nature of inspections, whether school or HIQA inspections. Could HIQA hold briefing sessions with staff members, through the unions, which people could attend to get more information about the process? It would reduce the strain and reassure the vast majority of staff that their work is good in that they show respect and care for the dignity of the people they look after, which is the most important thing. One must remember one is dealing with a fellow and equal human being and that person, regardless of his or her disability, deserves absolute dignity and respect in the service. If one remembers that, then one will not go far wrong and that is something about which I would be keen to ensure.
Recently, I came across an issue, namely, the anonymity of HIQA reports on intellectual disability services and I do not know what the policy justification is for that.That anonymity means one cannot discover the identity of any particular facility that is inspected. I understand this is a policy decision which might have to do with the privacy and dignity of residents. At least two facilities in my area were closed during the year. I know their names and where they are located, but their closure was not publicised. It would be useful to have information on which services are being closed. In the two cases to which I referred, they were very small units in a particular local authority housing estate. They were closed either before or after a HIQA inspection and we would like to know the reasons for that, what failings were identified and if there are similar failings in other facilities that have not been subject to the prospect of HIQA inspection.
The Minister of State may recall that I raised a matter on the Commencement debate some time ago concerning the HSE's absolutely appalling treatment of an individual. This person's GP had diagnosed him as having an intellectual disability but the HSE denied this was the case. There is sometimes a need to ease up on the bureaucracy and take a slightly more caring approach. We found in this case that the HSE staff member who was dealing directly with the individual was extremely caring and helpful, even perhaps too much so. That member of staff went beyond the call of duty, which might not be the best thing to do in a professional context. However, these things happen and, certainly in that case, everything was done out of concern for the individual in question.
There are problems with intellectual disability services, and waiting lists remain too high for a range of services. There is a substantial level of unmet need in respect of several types of supports. The Health Research Board has pointed to the growing waiting list for personal assistant and home help hours and indicated that there are more than 1,000 people with disabilities waiting to access physiotherapy, nearly 700 awaiting occupational therapy services, and 366 on a list for speech and language therapy. The same difficulties are arising for people without disabilities, of course, but such delays are particularly difficult for those with disabilities, particularly intellectual disabilities, because they may not be able to communicate their frustration and may require family advocates to act on their behalf.
People with disabilities are continuing to bear the brunt of the significant deficit in service provision, particularly when it comes to community services and supporting individuals to remain in their own community. There must be an objective of supporting people to live independently where possible, free from discrimination and able to enjoy the fundamental rights set out in the UN Convention on the Rights of Persons with Disabilities. In order to achieve this objective, the Government must ensure no further undue hardship is imposed on people with disabilities through the reduction of service provision in communities.
The Áras Attracta scandal brought home to every person in this country the vulnerability of people with intellectual disabilities. It must lead to a sea change in how we treat people and the culture that prevails in those facilities which take care of them. In this instance, it seems there were fundamental breaches of codes, regulations, standards and human rights. Indeed, the CEO of HIQA, Mr. Phelim Quinn, said it involved fundamental breaches of the human rights and dignity of individuals. We must never view people with intellectual disabilities as objects but rather as fellow human beings who, although they require care, have the same capacity to love and give as anybody else.
The Minister of State mentioned the move away from congregated care settings, which is welcome. There is an urgent need to implement the recommendations of the report to which she referred in order to ensure such facilities are closed and people are placed in more dignified settings. The best situation is where there is a small number of residents, the facility is like a home rather than an institution and the care that is provided is person-centred.
My final point is slightly off topic, although still related to disability services. Preschool special needs assistants are provided by the HSE in County Meath to children with special needs, many of whom have intellectual disabilities. Despite being assured there would be no reduction in this service, parents have now been told there is to be a 25% cut in the hours provided. We understand there is no major increase in the number of children coming through the ranks for next year. What seems to have happened is that the HSE has decided the budget will be the same as it was last year but it will not allow any overrun. That is apparently where the cut is coming in, the concern being to adhere to budgets. In practice, however, it means a reduction from 6.5 hours to 4.5 hours for the children concerned. That is absolutely appalling and I plead with the Minister of State to address it.
I am delighted to see the Minister of State consulting her official rather than being stuck to her iPhone as some Ministers are when they come to the House. This is a very serious issue and the reduction in the service has only come to light in the past week. The way the HSE has dealt with the parents concerned is dreadful. These are very vulnerable families who badly need this care in order to ensure their children can attend preschool.
I welcome the Minister of State to the House and thank her for her commitment and dedication in this area. It is worth reiterating the figures she outlined in her statement. People often talk about taxation, but it is important to consider the purposes for which taxation moneys are used. As the Minister of State indicated, €1.5 billion is being spent in this area in 2015. This will enable the provision of a very valuable service right across the board, involving 9,000 residential services, more than 22,000 people availing of day services and 190,000 overnight respite stays. Some 3.9 million hours of personal assistant home support are being provided. We tend to focus in these discussions on the areas in which something has gone wrong, which is only natural, but we should also focus on the dedication and commitment of the people working in this area. They are extremely committed, dedicated and hard working and they provide an excellent service. It is important, too, to recognise the work parents do in supporting the services that are provided, whether by raising additional funding or in other ways. In Cork, for instance, the Cope Foundation provides assistance to more than 1,200 people and is supported in its work by the parents who depend upon that service.
An area that is not under the Minister of State's remit but about which I have serious concern is the lack of co-operation with local authorities in the delivery of services. In fairness, health service staff are very committed and working very hard, as are organisations like the Cope Foundation and local community nurses. However, the lack of connection between the HSE and local authorities is an ongoing issue, particularly in Cork city and county. I have been aware of what is happening in Cork for some time but was shocked in recent days to see a comparison between the situation in Cork city and in Louth. If a local authority tenant in Cork city wishes to undertake adaptation work, he or she will be waiting for six and a half to seven years. In Louth, on the other hand, such a tenant will receive approval within three months, as I understand it.There is something radically wrong in that. I am aware it does come under the Minister of State's remit but what it does come under her remit is the co-ordination of services. In her opening statement she said:
That is not happening in the area I am talking about, for two families in particular. I am aware of 35 to 40 cases also on the books which have been waiting for six and a half years. The children in the two families have intellectual and physical disabilities. The families are providing full support to these children but a State service is not provided in terms of housing. They are living in local authorities houses which are not adapted. Something must be done in this area. I have referred the two cases to the Ombudsman because these people are not getting the supports they deserve.
The provision of disability services is not just for the Department of Health. Under the Disability Act, there is an onus on all Departments and public bodies to provide the same services to all citizens, including those with a disability. This is a fundamental pillar of the national disability strategy.
I wish to raise the role of access officers in local authorities. The Disability Act provides that an access officer should be in place in each local authority area. However, there appears to be a misunderstanding in local authorities on this issue. I have been in contact with a number of local authorities as regards the role of the access officer. There is a huge variation on how the role of the access officer is interpreted. In one local authority I was informed that the only role of the access officer is in regard to access to public buildings. I have information outlining the workload of the access officer in the past 12 months and it clearly relates to local authority buildings whereas other local authorities are fully implementing what was intended by the Disability Act for the role of the access officers. I have spoken to the National Disability Authority which has agreed to write to each local authority on this matter. While we have appointed people to the role we appear to have a lack of understanding on what is their role. The role is not only about access to public buildings, it is also about access to services for people with disabilities and access to local authority housing to ensure the necessary work required to cater those with a disability is carried out so that they have adequate facilities within that local authority house. There is a serious issue here.
The other issue that concerns me is people with disabilities and local authorities. In fairness to the Minister of State's colleague, the Minister of State, Deputy Gerald Nash, gave a detailed reply here on the issue I had raised. In some local authorities, one person is not in charge of dealing with local authority tenants who have a disability and one has to go from housing to finance to architects and engineers. Recently, I spent an hour on the telephone dealing with one case, going from one department to another but not getting any clear answer about who was responsible. I have raised the issue with the local authority in the past two weeks. I want one person in each local authority to take charge of each of these files so that when families telephone the local authority, they can get an answer about how their file is being progressed. In many cases, families have thrown in the towel. Given that it took me an hour to find out where the file was, what is it like for people who have a disability or whose children have a disability and they are trying to access the services? The Minister of State is doing a very good job in her Department as is the HSE but there is that lack of co-ordination. I spoke to the COPE Foundation in Cork which is involved with these families. Every time it telephones the local authority, the attitude is that this is just another number on the list waiting for money from Dublin, whereas all the other local authorities with whom I have discussed the issue, do not appear to have the same problem. I ask the Minister of State to ensure this matter is dealt with in a constructive and co-ordinated way in order that no family has to wait six and a half to seven years to get work done. I ask that this happens following the debate here.
As always the Minister of State, Deputy Kathleen Lynch, is very welcome to the House. The area of intellectual disability is not one in which I confess to have specific expertise. In preparation for the debate I have done some reading and have spoken to individuals and groups. I came across a very interesting contribution by Joe Wolfe to Frontline , the Irish voice of intellectual disability on health and well-being of people with intellectual disabilities. I found much of what I read disturbing. For example, in general, people with intellectual disabilities are more likely to have poor health than their non-disabled peers and people with an intellectual disability are more likely to die from causes that could potentially be ameliorated by good quality health care. There is a multitude of factors at play in the overall health inequality which is recognised internationally and, no doubt, exists in Ireland. There is difficulty in accessing appropriate health services, difficulty in accessing inadequate or non-existent health screening. Research shows that access to timely and appropriate health checks is effective in picking up previously undetected conditions such as cancer, heart disease and dementia. There are communication difficulties and reduced health literacy and there is a lack of awareness of, and inadequate education and training in, attitudes towards intellectual disabilities among some mainstream health care professionals.
I am particularly alarmed at the outcome of the UK 2013 Confidential Inquiry into premature deaths of people with learning disabilities, following the deaths of six people with intellectual disabilities while in the care of the NHS. The CIPOLD report, which studied all known deaths of 247 people with learning disabilities in a population area of 1.7 million people in south west England, found that men with an intellectual disability died on average 13 years younger than men without an intellectual disability and women with a intellectual disability died on average, 20 years younger than those without an intellectual disability. Significantly, the study found that the most common reasons for these deaths were delays or problems with diagnosis or treatment and problems with identifying needs and non-provision of appropriate care in response to changing needs. Record keeping was also found to be more deficient for the group of people with intellectual disabilities, particularly in regard to fluid intake, nutrition, weight and seizures. Worryingly, the report concluded that 17% of those with intellectual disabilities studied were under weight compared to 2% of the general population. I fear that the situation would differ little in Ireland if the subject received the same level of scrutiny. We should act as if the findings were our own findings.
Some 8,098 people with intellectual disabilities lived in residential services in Ireland in 2012, not to mention the many people in day services and almost 20,000 living at home with parents, siblings, relatives or foster parents who require extensive support in regard to their health and well-being.
We need to be proactive rather than reactive. For example, we need to educate people with intellectual disabilities, where possible, on how to access health services and on the importance of health and well-being. We need to develop health education, health promotion and wellness programmes. We need to ensure that all people with intellectual disability receive an annual health check and health screening. We need to ensure that older people have access to regular eye sight tests. The Growing Older with an Intellectual Disability in Ireland study by McCarron et al found that people with an intellectual disability are twice as likely to have significant visual problems and at a much younger age than the general population. However, people with an intellectual disability and, in particular, those with a severe to profound level of intellectual disability, are far less likely to have their eye sight tested.
We need to create an up to date hospital passport that can help health care professionals understand the communication and health care needs of people going into hospital or accessing other health care services. These should be updated every six months. There is a need to increase the focus on nutrition and healthy diet, as the UK study has shown.
The Minister of State raised the issue of congregated settings. I agree that too many adults with intellectual disabilities remain accommodated in large institutional congregated settings. The Time to Move on from Congregated Settings report, published in 2011, gave a seven-year timeframe for the closure of these settings.I am concerned about the current rate of transition of persons from congregated settings. I was told the figure was 100 a year but the Minister of State has told us it is 150, which I welcome. By my calculations, it will not take seven years but rather it will be 2050 before the last person moves. People with disabilities have a right not to be forced to live in unsuitable accommodation and they need to have a greater choice of where they live and with whom.
I would like to address the issue of children with intellectual disabilities. In their case, the services most commonly availed of are speech and language therapy, occupational therapy and psychology. In September 2014, Inclusion Ireland published The Case of Speech and Language Therapy, which noted the lack of functioning national therapy services and how access to therapy depends on where a child lives in Ireland. We have seen more of that recently. The provision of 200 therapist posts in the past two budgets was very welcome but thousands of children with intellectual disabilities are waiting years for access to therapy services, which impedes their full development.
Last Thursday, 21 May, the Laois Offaly Families for Autism published a report, The Current State of HSE Autism Services in Laois Offaly, which highlighted poorly planned, disjointed and limited provision of therapy services in the area. This group protested outside the offices of the disability services in Tullamore to voice its concerns over the quality of services being provided to children with autism. The report it produced is based on direct experiences of families in the area and details the full extend of the neglect of children by disability services. I would recommend that the Minister of State reads it. I would love to believe the problems only exist in the Laois-Offaly area, but I have heard, anecdotally, the same from around the country. I urge the Minister of State to examine the report. We could do more. I welcome our focused debate on this issue.
I thank the Minister of State for coming to the House. She is very welcome and is a regular visitor. I would also like to thank the Leader, Senator Cummins, because this is a debate for which I have asked for several months. I am delighted that we have the opportunity to discuss this. There are many areas that need to be addressed when we speak about services for people with intellectual disabilities, many of whom were mentioned by my colleagues. Every time we have a debate, something else comes up. I would like to use the time we have to stress the importance of providing proper and adequate supports for people with an intellectual disability.
I acknowledge the Government's current funding of €1.5 billion to the disability services programme, through the HSE's national service plan for 2015. I welcome the money allocated. My colleague read out a list of the numbers of people who benefit from it, but when one considers the numbers and the amount of funding, one finds we still have a long way to go. I recognise that the Minister of State listens and puts in the effort, but we need to keep pushing on this issue.
According to the last census in 2011, more than 500,000 people had a disability, including physical and intellectual. More than 57,000 people suffered from an intellectual disability and difficulties with learning, remembering or concentrating were experienced by a further 137,000 people. Some 96,000 people had a psychological or emotional condition. All of those people come under the category of needing extra supports.
I refer to residential respite support. There were 190,000 overnights, which is great, but one when considers how many people are trying to access it, it is a drop in the ocean. I do not mean that disrespectfully but rather that we need to keep pushing the issue. I would like to address the issue of respite care for people with intellectual disabilities in my area, and I will not apologise for it. It was one of the reasons I asked for this debate. I thank the Minister of State for accepting my invitation to come to Dundalk last week and for taking the time to visit various centres for people with disabilities in the area. She met and spent a lot of time with people, service providers and service users - a term I hate. She listened to them very intently.
One of the places we visited was the Maria Goretti respite centre in Lordship. The Minister of State was very impressed, as she was with all of the places she visited. The centre is very impressive. The facilities and the work of the staff and the board which run it are excellent. The respite centre caters for children aged under 18 with an intellectual disability and is a model for respite centres throughout the country. However, as was explained to the Minister of State, before the centre opened last year there was no respite centre for children under 18 years of age in the Louth area, and only a tiny number of children received respite care from our neighbours in Meath. Those who were under the care of St. John of God had access to some care.
I welcome the direction in which we are going. It will not matter where a child lives or to what school he or she goes; he or she will be able to access care. It is a problem I have come up against. The respite centre I mentioned is only up and running thanks to the dedication, financial support and forward vision of one family in the area. They deserve credit for their work in the community as do the HSE, which funded the centre, and RehabCare, which manages it.
There are reports on progress in facilities, but the proof of the success is when one hears from the people directly involved. The Minister of State heard from parents during her visit last week how vital respite services are to get a night's sleep, give time to other members of a family or simply have time, as one mother said, to have a cup of tea in peace. At the moment, the respite service is not being used to its full capacity. I again ask that priority in funding be allocated when budget funding is being discussed for centres like the Maria Goretti centre in Lordship so that they can be used to their full potential. It is too good a service not to be in place and I would love to see it rolled out all over the country.
That brings me to the subject of adult respite. Again, I am speaking based on my experiences. I am the secretary of Dundalk Parents and Friends of the Intellectually Disabled. The other night I wrote up notes from a recent meeting and came across minutes from a meeting held in 1994 - the previous secretary held fantastic minutes. The minutes recorded an urgent need for a respite house for adults in County Louth. When I read the minutes from our last meeting in 2015, I found not a whole lot had changed in Louth.
Recently, as I made the Minister of State aware, the local St. John of God respite centre closed its doors for five weeks to provide upskilling and training. One of my colleagues mentioned HIQA inspections and preparation for them. Rumours abounded about whether it had been in. For whatever reason, the decision to close the centre was made very suddenly and parents and family members were devastated. I was inundated with questions. The closure affected only 58 people, but they were decimated by the news. Rumours circulated about whether it would reopen.
I have received confirmation that it will reopen next week, but I am very disappointed that the CEO of St. John of God in the country declined to meet me about the matter on several occasions. When I contacted the local HSE office, it made no comment on the matter. It is not good enough. If the HSE funds services, we need to have transparency, to know what is happening and whether services can decide suddenly to close for five weeks with nobody taking responsibility. When we ask questions and issues are brought to its attention, we deserve answers.
We are now approaching summer and children will be out of care for some months. Summer camps for special needs children are a vital part of their summer. It is something that needs to be addressed to ensure that all children can have access to them. Summer provision depends on a diagnosis. Summer camps are not very expensive to run and are beneficial for children. Some children will sit for three months with nothing to do.
I refer to psychological services, an issue which I have raised before.People with an intellectual disability are seriously lacking this service. I have constantly brought up the lack of a psychiatrist for children in my own area of County Louth. The situation is replicated all over the country. I recently had a meeting with HSE officials to discuss the filling of the position, and they say they have got to the second round, they can offer the post but they just cannot get the person. Is it a salary issue, as has been reported? Why can we not bring people in? As a teacher, I had pupils who did psychology, psychiatry and occupational therapy and are now working abroad. Why can we not hold onto them? Let us get them back by making the package more enticing. It has to be remembered that people with an intellectual disability have a rate of mental illness that is approximately five times higher than among the general population.
We have mentioned speech and language services for children as well as occupational therapy, and these services are seriously lacking. Can we do something to help? Can we take a cross-departmental look at some areas? I am doing a study at the moment of the role of special needs assistants, SNAs, in schools. I am not saying they could in any way replace occupational therapists, but could they be doing something that would help?
The Minister of State is very welcome and it has been very interesting to read and hear her statement, including the success stories. I would like to talk for a moment about confidence. The danger is that people lose confidence. Although I would not say it can be regained easily, it is possible to do so. I had 75 employees in my company when I stepped down who were intellectually disabled. We did not use that term; the term "otherwise enabled" is better. I remember talking to one woman whose son had been working with us for a year collecting the trolleys in to the supermarket. She said she thought he was worthy and capable of far more. We brought him into the shop, he was given responsibility and duties, and he blossomed and grew. We can talk ourselves into believing that somebody who is intellectually disabled is not capable of doing anything, yet this young man came in and became quite a success story. Those who worked with him in that department grew with him as well. They and his customers felt pride in him. It is often possible to have a win-win situation.
One other young man was a trolley host, as we called the role. I watched him at the entrance to the supermarket and, as he got the trolley ready for the first customer coming through, he said, "Oh, there is a cabbage leaf in it." He took the cabbage leaf out and said to the customer, "I want to make sure you have a clean trolley." What did he do with the cabbage leaf? He put it in the next trolley, and so the next customer came and the same thing happened again. I asked him what he was doing and he said they really appreciated him, but that if he just gave them a clean trolley they would not have appreciated it. He was using a different sort of intelligence, one that was really working. I undertook his job for a few minutes and did the same thing. I am told he would use a cabbage leaf on a Monday, a Tayto crisp packet on a Tuesday, something else on a Wednesday and so on. Customers knew that this young man was doing something for them. Although one could well say he was gulling the customer to a certain extent, it was those little stories that worked. I mention this because it shows that those who work with people with a disability feel pride, as do the customers.
One of the big jobs we have is to convince people that it is possible to do something different. Another position I was fortunate to have for a few years was president of the Irish Association of Supported Employment, IASE. They organise a job shadowing day every year and people come to Leinster House. The Taoiseach usually makes a bit of an occasion for them. A lot of good work is being done by people in supported employment, as they are backing up things that would not otherwise have taken place. The participants explore the world of work by shadowing someone as they go about their normal working routine. The IASE points out that the day is an opportunity for employers to promote and encourage an inclusive workplace, and that it can allow employees to demonstrate their commitment to equal employment opportunities. An organisation called Kanchi, which used to be known as the Aisling Foundation, gives awards to employers who have found a way to lift people from that area in the past.
While I am not speaking directly about the tasks the Minister of State has, which she is accomplishing very well, we all have to convince the general public, parents and employers that people with a disability have really got a different ability. If we can only trace and track that ability we can have a huge success. It was great to hear what the Minister of State is doing. There is a lot more to be done and I know it will be done. With the Minister of State at the helm, the encouragement and enthusiasm is there and it can succeed. Let us make sure that, rather than talking people down, we talk them up and give them the confidence.
I welcome the Minister of State and am delighted she had a productive, informative and enjoyable day in Dundalk, as she has had in many places around the country. To be fair, she gets out to see services in operation on the ground. I have no doubt she spent the whole day in Dundalk, as that is how she operates. She wants to engage with people and get an understanding, which is one way of ensuring that the job is done and people's needs are reflected.
The Minister of State took over at a very difficult time. Although billions were spent on disability in the late 1990s and early 2000s, the money was completely wasted on exorbitant salaries for chief executives of the various NGOs that were providing support services. One executive was on the bones of €500,000, as we all know, although we will not mention any names. While that case hit the headlines, there were numerous other people on significant six-figure sums. One organisation had a chief executive in every county, which was bizarre and totally unacceptable. To be fair to the Minister of State's predecessor, John Moloney, for whom I have huge respect, he tried to deal with it by setting up the value for money audit. That overlapped with Deputy Lynch's period in office and made significant recommendations. While it was not a direct recommendation, the People with Disabilities in Ireland, PWDI, organisation came out of this process. I have mentioned this organisation in the Seanad and it nominated me as a candidate for the House. However, 98% of the €1.5 million that PWDI was getting was going on salaries and expenses and doing very little to assist people with disabilities. That was the backdrop when the downturn in the economy came.
The respite care grant should never have been cut, irrespective of the situation in which we found ourselves.
It was a bad judgement call. It was not the Minister of State's fault; I have no doubt she was told to do it by her masters, who are on a higher pay grade than her. It should not have been done, and if we had our time over again I would vote against it. I did not do so and I regret it. Although I would have been thrown out of Fine Gael, I probably would have got back in.We were only new in the House at the time and we probably did not have the same confidence to express our convictions that I hope we do now.
I am not suggesting that, a Chathaoirligh, but groups work better.
Respite care is important. As I only have a few minutes, I cannot cover all of the aspects in as much detail as I would like, but I wish to discuss respite care. The one thing that the State can do is give families dignity and quality of life. From personal experience and having spoken to many people, the families of people who happen to have intellectual disabilities of varying degrees treasure respite care because it gives them quality time and the opportunity to recharge their batteries and provide better care to their family members. The Government has improved respite care but, as my colleague stated, it is only a drop in the ocean. We must focus.
We could all discuss the various services that are provided in our counties. In my county of Clare, those who provide respite support include RehabCare and the Brothers of Charity. There are 42 steps in the process of teaching a service user how to make a cup of tea, for example, including health and safety, taking down the cup, putting in the tea bag and boiling the kettle. The 42 steps must be done properly so that the person can have the independence of making a cup of tea. This is a level of detail that money cannot buy. People provide this service.
Senator Byrne made a very good point. The Health Information and Quality Authority should not frighten the whatever out of people when it calls to carry out inspections. People should be made to feel like HIQA is a friend or advocate that supports and assists them. They should not be afraid and stressed out when HIQA arrives.
There is a major amount of work to be done. In six months' time, perhaps the Minister of State will update the House. Large bodies move slowly and incrementally, but with the right dedication and given the volunteers and staff in the services and the commitment in society, much can be achieved.
I welcome the Minister of State back to the House. She has been here a great deal in recent months dealing with a range of issues relating to mental health services and people with intellectual and physical disabilities. She should be commended on taking them seriously. It is a credit to her. If we had more Ministers who spent as much time debating these issues in the Chamber, it would be good for the Seanad.
Yesterday, I raised a Commencement motion on a somewhat related issue, that being, children with physical and intellectual disabilities. We discussed children waiting for assessments and diagnoses. I forwarded an e-mail to the Minister of State yesterday, but a few more came through today. In fact, an e-mail came through just two minutes ago from the parent of a young child with autism but who has not been diagnosed yet. It is the opinion of their general practitioner, GP, that the child has autism, but he has been on a waiting list since last August. The family cannot access proper services until a diagnosis has been made. I will forward the details to the Minister of State. These problems are distressing for families, who want assessments and diagnoses to happen as quickly as possible. The Minister of State gave a positive indication about resources yesterday, but I wanted to remind her of this issue.
Our vision must be of a society in which all citizens, including those with disabling conditions, can take a full part in all aspects of independent life, including the workplace, relying as far as possible on mainstream services to help them to reach their full potential but with the support of other services where necessary. We must not forget that 565,000 people reported having various forms of disability in the last census. Disability is, therefore, a societal issue affecting people of all ages and their families directly and indirectly. Some of the key trends spanning the 1996-2013 reports have been identified in recent national intellectual disability database, NIDD, reports. Increasing numbers of people are living full-time in community group homes as opposed to residential homes. We must move the focus from congregated settings to the community and from smaller settings to full integration. In 2013, some 98.7% of those registered on the NIDD were in receipt of services, 29.2% were in full-time residential services and 67% lived at home. There has been positive changes in recent times. The Minister of State has been a driver in that regard. I support her, but she would accept that we have much work left to do and must continue on this path.
The number of people with intellectual disabilities who are in psychiatric hospitals is reducing. This is welcome, but that anyone with an intellectual disability is in such a facility is an indictment of the planning that was done by several Governments over many years. There has been an increased focused on residential supports, which allow people to live at home. As we know, however, home help hours have been cut and home adaptation grants are increasingly difficult to acquire. A Senator mentioned this matter. It is an issue that breaks my heart. A family might approach one of us because a house needs to be adapted. I am unsure as to whether other local authorities differ, but when people apply for the grant in Waterford city and county, they are classed as priority 1, 2 or 3. If they are not classed as priority 1, they have no chance of getting anything done.
It might be an adaptation as simple as installing a shower rather than a bath. If it is classed as priority 2 or 3, though, it will never be done. Even applications classed as priority 1 do not get done and must wait on lists. The money is not there. People blame local authorities, but the latter depend on grants from central government. This issue needs to be examined.
An increasing number of children are in mainstream schools, but if there are inadequate numbers of resource teachers and special needs assistants, SNAs, this stops being a policy that is beneficial to all. Early intervention is important. I mentioned a facility on Lady Lane in Waterford city called the Sacred Heart Centre. It provides fantastic supports to people with a range of complex needs from mild to severe physical and intellectual disabilities. I visited it a number of weeks ago. It was uplifting to see the children receive the support that they required, but the building was in a poor state. The centre does not have the necessary equipment. It is a joint venture between the Department of Education and Skills and the HSE. Although the staff provide a great service, a state-of-the-art, LauraLynn-type facility is required in Waterford to give these children the supports that they need.
I acknowledge the work that the Minister of State has done, but more needs to be done. Ahead of the next election, I hope that all parties can commit to doing more to support children and adults with disabilities of whatever description. We should not use this issue as a political football. Surely, we should all be united on it. That more money needs to be given to these services is one of the few areas on which we can all agree, as these people need it.
Like others, I welcome the Minister of State to the House and thank her for attending so often to address the issues that we raise.
Good work is being done and I commend the Minister of State on what she has done. She has a passion for this issue and is working hard. I welcome the Government's commitment to providing services for people with disabilities. In particular, I welcome the €1.5 billion and the movement of people out of congregated settings. However, we are not here to pat ourselves on the back. We are here to highlight deficiencies in the system and how things could be done better.
My next point is not the Minister of State's remit, but it relates to people with disabilities.I raise it because it is in my area of expertise which is social welfare and the difficulties people have accessing funding. The amount of work people have to do to access payments from social welfare for people with disabilities, in particular the domiciliary care allowance, is incredible. I have often sent in appeals before it is awarded. Only yesterday a doctor told a person in my area that the disability allowance has become political. He said the letters the medic writes no longer suffice in the Department of Social Protection. It wants more and more information. People are worn out trying to access these allowances. They are not applying for the fun of it but because they have, or someone else in the house has, a disability. Likewise regarding the carer’s allowance, it is getting harder to satisfy the medics in the Department of Social Protection.
People should be aware that employers can avail of the wage subsidy scheme if they employ people with disabilities. Many are not aware of that and maybe should be made aware of it. It may be our fault that we do not make people aware of it. The employability services are on offer to people with disabilities to help them find jobs. All these services should be highlighted.
I am very disappointed that the Department of Health did not provide any funding for the Scheme to Support National Organisations, SSNO. It is a disgrace. One can argue all one likes that it is in a community setting but it should have something to do with the Department of Health. The Minister of State said it has nothing to do with the Department but that is not true. This funding is for organisations providing services and support to people with disabilities to live in their own communities, have social inclusion and live the same as everybody else. I believe the Department of Health has an obligation to it. I am delighted that the Minister for the Environment, Community and Local Government, Deputy Kelly, provided funding for people with disabilities in health organisations. I do not understand it but the Minister of State can give her answer on that point.
Many people have only 20 minutes’ home help. That is absolutely worthless. People like to talk. Home help has turned into personal care, which is fine. When we were under financial pressure I could understand the move to that, but there are many people with a disability who really need the bed made or the floor swept or a bit of hoovering done. We have moved away from that and we need to get back to it.
Reconfiguration is a lovely word and sounds great but I would like to know how well it works. People are being assessed based on their school address. I cannot understand why. There is an appeals system which I have gone through with people and some appeals have been successful. Before I came in here today I wanted to know why a child with Down’s syndrome had to wait nine months to be called up after being taken in by Kerry Intervention and Disability Services, KIDS. I had to make five calls and each one I rang referred me on and on.
For anything. She was not called to be assessed for speech and language or occupational therapy. She got a call for a playgroup. Following a telephone call from me she was called up. Nobody in the HSE is answerable for anything. I had to make five phone calls and eventually got a voicemail telling me to refer to communications. It is not good enough. As public representatives we are entitled to make representations on behalf of our people and we expect answers from the HSE. The Minister of State and the Minister for Health, Deputy Varadkar, should absolutely insist that the HSE respond to people. If, as a public representative, I cannot get a reply or others cannot get a reply, how does the ordinary man on the street hope to get an answer from anyone? Like my colleagues, I could go on forever but there are time constraints. There will be another day to fight this.
I support the last speaker because it is important that anybody who makes a phone call, be they a public representative or a private person, deserves the courtesy of a response. If there is one message from today’s debate it is that the HSE has to pull up its socks and ensure that it responds, not alone to public representatives but to the public. There is a charter for caring.
All Departments are responsible for disability services. I spent many years on South Dublin County Council and every department in the place had a part to play. When the Minister for Children and Youth Affairs, Deputy Reilly, was in the House to discuss child care, I said a certain percentage of each budget should go into child care and the same for disability. It crosses all sectors in every community. We should use design for all but we have not arrived at that point. It should be the case that no building would ever be put anywhere without being totally accessible. It is much easier to plan right than to plan wrong and try to fix it. Design for all should be a mantra. The architects talk about it all the time.
The people are there and it is coming but not as much as it should. Every building should be considered under the concept of design for all. I saw on television a fellow who got onto a train but could not get off because there was no one to help him.
Early intervention is vital for help in preschools, many of which cannot take special needs children because the intervention and the support staff are not there. That is a problem for the Departments of Children and Youth Affairs and Health. In my own school I had a policy of ensuring a special place was reserved for at least one or two special needs children. I did my Master's degree in multiple intelligences. I listened to Senator Quinn talk about the cabbage leaf and the trolley. That is a prime example of multiple intelligence in use. The earlier one gets the intelligence that is primed for the child to use at a particular time, the better the child will get on. I had the privilege of having the first student with Down’s syndrome to take up the leaving certificate applied course. Early intervention is vital not only for the children in preschool education every day, but particularly for children with special needs. The Minister of State should chat to the Minister for Children and Youth Affairs to ensure that children with special needs get the help and the support staff they need in preschool.
I welcome the value for money audit. Salaries is the wrong place for 98% of the money to go. When I was on the South Dublin County Council I ensured there was braille on every door, to make it easier for people to get around the place. A Minicom was put in for deaf people. Textphone is now available which thankfully works. In respect of the EU recommendation that everybody have 3% staff, which is not mandatory, in South Dublin County Council we ensured that at least six people with special needs would be taken on. I would like to see a programme in here to take on people with special needs every year, up to a certain quota. I do not like quotas in everything, not even for women in politics, but we have to have them because they work well now. We have to have quotas for people with disabilities. Will the Minister of State consider that in the programme?Spina bifida is on the increase in Ireland and we know how debilitating it is. It results from a lack of folic acid. As with everything, prevention is better than cure. We should take every opportunity to highlight it.
I refer to the standards of care and inspection in homes. This is a subject close to the heart of the Minister of State and she has worked on it since she came to the Department.
Senator Moloney referred to the allocation of 20 minutes per home help visit. They might as well be told to stay at home. Money has to be spent on travel expenses, petrol and salaries so it is a waste of money to put them into the house. As Senator Moloney said, it takes a home help five minutes to take off his or her coat and another five minutes to put it on and there is not much time left. I ask the Minister of State is examine this situation. Value for money means value for work. The home helps are fantastic and the best group of people. They should be supported but putting such time constraints on them is not right.
I hope to deal with the subjects raised in order although I am very bad at taking notes. In reply to Senator Byrne, I was the person who insisted that HIQA undertake the inspections of residential settings. I must admit I have no problem in putting my hand up and taking responsibility for things and that is how I have lived my life and it has probably served me well thus far. The regulations in place are not fit for purpose. They will ensure that all the doors will close, that all the hooks will be on the walls and there will be three different colour bins. However, in reality, would the Senator's house pass that test because mine would not? I am serious. Would it pass that test? If we are serious about saying that these places are where people live, then surely we should have different regulations. I admit that and we are looking at the situation. We had to allow the regulations to be in place for a time and they have been very useful. I have always said that if I had a loved one in a residential setting of whatever type - whether for older people or for people with disabilities or for young people with chronic illness - I would say, "God bless HIQA" because it is the body that will ensure that people get the type of respect they deserve. I do not think the Senator and I disagree on that point. I hope that not all HIQA's inspection visits are announced - I am a great believer in the unannounced visit - but I am not a great believer in the big stick visit. The majority of people in this world set out to do a very good job. I acknowledge that a small number of people lose empathy and may have been too long in a particular position and may not be as empathetic and compassionate as they should be. However, we got that wrong and we have to change it but that is a small thing to change.
When I come to this House I do not play political football because I do not think it serves any purpose, but I often wonder what we could do if we had more money. We must all agree that we are starting from a very low base and this is unfortunate. That is the past and there is no point in dwelling on the past as we should be looking to the future because I do not believe that people with disabilities at whatever age and with whatever disability will thank us for that.
In reply to Senator van Turnhout, I do not believe that we have to look to England for research findings. We are leaders in the world in respect of TILDA II and we are the only people doing it. I am not surprised by the conditions which the Senator named but it is interesting that we never look at the positive aspects. TILDA II tells us that people with intellectual disabilities, in particular, that people with Down's syndrome, do not have high blood pressure. I was astonished at that fact. It would seem that they do not have stressful lives. They are very quick to get over the immediate issue. However, people with Down's syndrome can develop different forms of dementia at an early stage. It is common across the board unless they are living within the family circle. They can have childlike taste in food such as liking McDonald's and fast food and their diet can be bad as a result. I do not think we need to look at other countries because we are aware of the issues and we know how to deal with them.
In reply to Senator Burke, thankfully, reconfiguration is one of the few areas for which I am not responsible. However, I take his concerns on board and I will pass them on. Senator Moran referred to the psychological services available. All I can say is that we are starting from a very low base. I came from a very long and protracted meeting this morning which dealt with the interconnection between primary care and disability services. Bringing those two services together will give us a bigger bang for our buck. Senator Moran also referred to respite care. The cut to the respite grant had nothing to do with me because I do not administer it.
That needs to be said. I have enough responsibilities as it is and enough to be blamed for, without taking that on.
Senator Moran referred to SNAs, special needs assistants. It is actually an issue for the trade unions and for the Department of Education and Skills. It is a serious issue for the unions and it is my view that SNAs can do far more, whether helping with speech and language and occupational therapy. They want to help because they like the people they care for.
Senator Quinn and I could be reading from the same hymn book. It is true that we are too paternalistic at times towards people with disabilities and we do not see the possibilities for them as opposed to their limitations. It is incredible what can be achieved if we only imagine what is possible. I agree entirely with Senator Quinn on this point. I refer to Senator Quinn's story about the young man removing the cabbage leaf. He obviously learned that from Senator Quinn because that is a marketing ploy. The Cabinet has approved a new employment strategy for people with disabilities. The previous strategy was somewhat limited because it did not take into account people who may have greater challenges. Senator Quinn and I are on the same page in this regard.
Senator Cullinane spoke about the fact that children in school do not have enough sports activities. We have more SNAs than ever. I am not certain we are deploying them well but we have more than ever because the need is greater than ever. Senator Byrne and others raised the issue that very young children with a disability cannot avail of the free preschool year. This is being worked on. Thankfully, it is not my responsibility but that of the Department of Children and Youth Affairs, the Department of Education and Skills and the Department of Health. The Secretaries General of those Departments are considering a unified national policy.
I will get to Senator Moloney, but first I will respond to Senator Keane. It has always been my view that we should put folic acid in flour, because I am not certain that every pregnancy is planned. I know in my own case that none of my pregnancies were planned.
I do not think everyone agrees with my suggestion, because I have sought to have it done for years.
I wish to say to the Senator who asked about the SSNO that I have no difficulty taking responsibility and taking blame for lots of things. The Secretaries General of the Department of Health and the Department of the Environment, Community and Local Government met last week. We had agreed to take the 12 organisations that have health-related issues. The Minister whom the Senator praised so strongly a while ago reneged on the deal. I do not mind taking the blame for things I do, but I must admit that I very seldom silently take the blame for things I did not do.