Wednesday, 27 November 2019
Nithe i dtosach suíonna - Commencement Matters
Special Educational Needs
In February this year, I raised with the Minister of State, Deputy Finian McGrath, the funding of Inishowen Children's Autism Related Education, ICARE, which serves the Inishowen area. The organisation in question works with more than 100 families, some of which have two or three children who are on the autism spectrum. Even though it is based in Buncrana, it serves the north Inishowen area. The Bluestack Special Needs Foundation, which is based in Donegal town, serves families in south Donegal. A large part of County Donegal is covered by both organisations, which have been in existence for almost 20 years. Until a year ago, they were entirely self-funded. This has been a long road for families. Family members who are dealing with the significant stress of being carers for their loved ones have to go out and raise money again and again. The local communities in north and south Donegal are supportive of these organisations. They always give great support to their fundraisers. These families should not have to raise funds. They should not have to live with the uncertainty of how they are going to secure these services each year.
I am knowledgeable about ICARE because it is based in my home town of Buncrana. Families are referred to the services of ICARE by schools, social services and health services. The State asks ICARE to provide the services it should be providing, but it does not offer any funding support. ICARE sought €100,000 this year, but instead it received just €35,000. The Bluestack Special Needs Foundation sought €150,000, but it received just €36,000. It is well known that they are getting just a fraction of what they need. The HSE worked with both organisations to put together these funding proposals. There are no exaggerations in them. The organisations are looking for exactly what they need - no more and no less. They have been given a fraction of what they require for this year. As the year draws to a close, it is crucial that the same mistake is not made in 2020. That is why I am raising this matter now. To be clear, ICARE requires €100,000 and the Bluestack Special Needs Foundation requires €150,000. That is the appeal. I am frustrated because nothing has happened even though the Minister of State, Deputy Finian McGrath, told me earlier this year he would keep a close eye on this issue. Funding was found when the HSE in Donegal reallocated funding from somewhere else. It was robbing Peter to pay Paul. No additional funding was provided by central government. Instead, we got tea and sympathy. I am asking for an end to the tea and sympathy. These organisations, which are delivering services that have been referred to them by the State, should be respected and funded properly in order that they can do the work they are doing with the support of the people of north and south Donegal.
I thank the Senator for raising the issue of funding for ICARE autism support group and the Bluestack Special Needs Foundation. As Senators may be aware, ICARE was founded in 2000 by a small group of dedicated parents of children with autism. It provides a range of activities for children and young adults with autistic spectrum disorder, ASD, in the Inishowen area of County Donegal. The supports provided by ICARE include informal education and supports for the individual with autism and his or her family, school holiday activities, access to a youth club and support meetings, training and development for families. I acknowledge the extraordinary achievements of the Bluestack Special Needs Foundation since it was established in 2006 by a dedicated group of parents and professionals working in the disability sector. The foundation operates a range of educational, practical and emotional support programmes using a family support model. It provides evening and weekend activities, summer camps and a diverse range of activities.
The family-centred approach adopted by ICARE and the Bluestack Special Needs Foundation is an important move away from a system designed to suit the needs of the service provider and towards a system designed to meet the needs of service users and their families. This model ensures families are empowered by being supported and included in the planning of their children's care. The successful manner in which ICARE and the Bluestack Special Needs Foundation have integrated their services into the community goes an enormous way towards challenging historic patterns of exclusion and is very much to be welcomed. I understand that ICARE and the foundation each received funding of €41,000 from the HSE in 2019 towards the costs of their operations. Submissions for funding from ICARE and the foundation of €41,000 and €86,500, respectively, have been made to the HSE in respect of 2020. The HSE will consider its decision on the level of service to be provided in the context of available resources and priorities for the coming year.
Additional funding of €2 million has been secured under the autism plan in budget 2020 to address health-related issues for individuals with autism. This money will be used to implement an awareness-raising programme that can provide a better information resource for children and parents about the supports that are available; to build capacity and competence among key professionals working with autism, including a national training programme for clinicians; and to implement a tiered model of assessment to improve access to and responses by services for those with autism. It will also be used to fund a campaign to assist in creating awareness of the challenges, needs and experiences of people with autism. The Government remains committed to providing services and supports for people with disabilities in a way that empowers them to live independent lives, gives them greater independence in accessing the services they choose and enhances their ability to tailor the supports required to meet their needs and plan their lives.
We have a serious problem here. The person in the HSE or elsewhere in the health service who drafted the Minister of State's response has his or her numbers badly wrong. I appeal to the Minister of State to sort this out. A senior official in the Department of Health needs to speak to the person who drafted the response to ask him or her why it is suggested that ICARE has applied for €41,000, or less than half of what it requires. I spoke to representatives of ICARE and the Bluestack Special Needs Foundation in advance of this debate. ICARE is seeking €100,000, as agreed with the HSE. That is what it requires to fund the dedicated core portion of its service. It does all sorts of ancillary works that would not be funded from this €100,000. The Bluestack Special Needs Foundation requires €150,000. The person who put together the numbers in the Minister of State's response is not serving the interests of ICARE or the Bluestack Special Needs Foundation.This response is an absolute disgrace. Let us be clear about the amounts involved, which are €100,000 and €150,000. If that is not what was applied for in 2020, then the application needs to be amended urgently. What has been given is a fraction of that and shows the lack of respect for these two organisations. I reiterate that education, social care, community and health services are referring families to iCARE and the Bluestacks Special Needs Foundation for support. Those organisations have only a fraction of the supports available to the statutory organisations. I conclude by asking the Minister of State for an urgent intervention because these figures are completely wrong. I am certain about that. This is a misrepresentation of what these organisations require and this situation needs to be resolved today.
I reiterate the acknowledgement of the good work being done. The Bluestacks Special Needs Foundation and iCARE provide excellent services to people with disabilities and their families in County Donegal. The HSE acknowledges that commitment and endeavours to support such community voluntary-based services as much as possible. In that regard, each organisation received €41,000 in 2019 towards the cost of their work. I also reiterate that some 100 new therapy posts have been added this year and there is an overall budget of €2 billion.
Regarding the Senator's contention that the figures are wrong, I have no problem getting clarity from the HSE. I have no reason to doubt that agency, but I have no objection to seeking that clarification.