Alan Shatter (Dublin South, Fine Gael)

I thank the Senator for raising this matter. I am taking this Adjournment on behalf of the Minister of State, Deputy Lynch, because she is indisposed, and I want to outline the position on the matter raised by the Senator.

I understand that the family concerned are in receipt of six and a half hours home support from the Jack and Jill foundation and three hours home support from the Health Service Executive. Following a meeting with the Brothers of Charity on Monday, 7 November, and in consideration of the fact that the family could not avail of respite services on offer due to the child's condition, the family were advised that they could utilize a total of 140 hours from one mid-week and one weekend of residential respite per annum. These hours could be used by the family on a regular basis or to increase or decrease the support in the home as required. The Brothers of Charity have written to the family and left an open invitation to the family to revert to them.

Specialist disability services are provided to enable each individual with a disability achieve his or her full potential. Services are provided in a variety of community and residential settings. Services are provided either directly by the HSE or through voluntary service providers. Voluntary agencies provide the majority of services with and on behalf of the Health Service Executive.

While there are many examples of good practice and commitment and initiative of dedicated staff and management, challenges remain in the manner in which disability services are currently configured and delivered. These services have been developed by individual service providers and reflect the individual experience and expertise of providers in meeting local needs. However, as they have developed independently and were often established to serve one specific group of children or clients only, the result is that there is wide variation in the services available in different parts of the country and for different categories of disability.

The HSE has recognised the need to increase the level of consistency and standardisation in the way early intervention services and services for school-aged children with disabilities are delivered. A major priority for the Government in the coming months will be to finalise the current value for money and policy review of disability services to ensure that existing funding for people with disabilities is spent to best effect. It is now more important than ever that large scale spending programmes of this nature are subject to detailed periodic review. The VFM efficiency and effectiveness review will make recommendations that will ensure that the very substantial funding of €1.5 billion provided to the specialist disability health sector is used to maximum benefit for persons with disability, having regard to overall resource constraints which affect all sectors at this time.

Home care packages are currently provided, on occasion, for persons with a disability. They may include home support services, nursing services and home help, with multidisciplinary supports as appropriate. This home care and support package may be an alternative to attending a day or residential service and will be provided following completion of an appropriate assessment process. Usually home support and care packages are provided when it is neither feasible nor appropriate for individuals to attend residential or day services. I note particularly what the Senator has to say about the young person in question.

The Jack and Jill foundation service is part of a range of services provided to families funded by the HSE and other service providers for children with life limiting conditions. There are approximately 1,300 children in total. Many children availing of services provided by the Jack and Jill foundation also avail of other specialist hospital and community health supports and disability services. The Health Service Executive is committed to working with the Jack and Jill Children's Foundation to ensure that all children with life limiting conditions receive services on an equitable basis and through a standardised approach to be progressed through the children's palliative care steering group. The national policy, Palliative Care for Children with Life-Limiting Conditions in Ireland, will ensure a national approach to the provision of services for children with life-limiting conditions. All services and service providers will be governed by this approach.

I personally do not regard it as appropriate that we have such wide discrepancies across the country in regard to the level of service that has been provided. It is important that home care packages, where appropriate, are made available in assisting the care of young people, such as the young person to whom the Senator refers, and not just confined to older people. I would like to invite the Senator to furnish to me copies of the November correspondence with the HSE to which she made reference. I assure her I will bring that correspondence directly to the attention of the Minister of State, with a view to seeing if there is any further assistance that can be provided by the HSE to this family and to ensuring that there is full recognition of the needs of the child concerned and the pressures under which the family operate.

I am acutely conscious that the Jack and Jill Children's Foundation is primarily concerned with children up to the age of four years, and that the foundation provides substantial additional care to children over that age, due to the current inadequacies of some of the services provided by the State. I have raised this issue on a number of occasions with the Minister for Health. He also has concerns about how we address these matters. I would be happy to hand over the correspondence mentioned by the Senator to the Minister of State.