Dáil debates

Thursday, 2 February 2012

3:00 pm

Photo of Catherine ByrneCatherine Byrne (Dublin South Central, Fine Gael)
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I raise this important issue on behalf of the many parents who are concerned at the reduction in the provision of respite care. I refer specifically to the provision of respite care for young people suffering from autism and Asperger's syndrome. Many young people on the autism spectrum feel emotionally isolated in their own world. Often they cannot or are reluctant to go outside and mix with other children. The lack of early intervention and the long wait for appointments and treatment puts immense pressure on the parents and families of these children. The responsibility of care rests almost entirely on their shoulders and, sadly, many feel ignored and abandoned by the health service.

Parents face significant challenges while they care for an autistic child. Many say they would be lost without the support of friends and family. They also say that the support of outside groups is invaluable at times when they simply need a break. This is where respite is so important; it gives them time-out and serves as an important coping mechanism for them and their partners.

In many of these families, one parent gives up work to care 24 hours, seven days per week for a child with autism. They see respite as a valuable period of several hours or an overnight period during which time they can entrust their child to a dedicated service and do simple things for themselves that would be impossible otherwise. Respite provides a safe haven for young people with autism to meet their peers and engage in social activities. The nurses and staff who work in respite services are fantastic people with a specific understanding of their conditions.

However, in recent months provision of respite in our communities has been reduced. This is due to reduced staffing levels which have come about as a result of staff going on leave. In addition, the moratorium on staffing in the HSE is having a detrimental effect on respite hours. Services are stretched and simply cannot cope with the demand for respite. Many families are struggling and parents are devastated that their lifeline is being taken away.

Under the HSE plan for 2012 provision has been made for investment of €1 million for autism services. This will be used to address waiting times for specialised treatment for children who have been diagnosed with autism and to develop early intervention teams. I welcome this commitment but we need to address urgently the problem of inadequate provision of respite for families of young children and young adults with autism. Young Irish people with autism have specific needs but we in Ireland are only slowly waking up to the seriousness of autism and how best to treat and care for children and young adults with autism.

Photo of Róisín ShortallRóisín Shortall (Dublin North West, Labour)
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I thank Deputy Byrne for raising this matter. Under the Health Act 2004, the Health Service Executive, HSE, is required to manage and deliver, or arrange to be delivered on its behalf, health and personal social services, including disability services. The HSE's service plan for 2012 states that the allocation for disability services will reduce by 3.7% as a consequence of the impact of the efficiency, procurement and targeted pay reduction savings. However, the aim of the HSE will be to tailor such reductions in a way which minimises the impact on service users and their families, as much as possible. The Government is very much aware of the importance of respite service provision for the families of both children and adults with disabilities including those with autism. Disability service providers have been requested by the HSE to advise and discuss with it the challenges they are experiencing, prior to any reductions or changes to service provision being implemented. While there may be some changes to front line services, in many cases these changes will not necessarily result in service reduction, but in a different model of service delivery being applied. For example, respite provision is not always centre based and can be provided in a number of ways, such as, out of home, in home, home to home, home support or family support. Assessments are completed locally to determine and prioritise needs.

In 2010, a working group was established by the HSE to carry out a national overview of models of respite and residential care with host families in community settings and to determine the viability of these models of service delivery for future development for people with an intellectual disability. The report of the working group will be published shortly and one of its recommendations will be that each HSE area review and reconfigure respite and residential service provision to include the host family support model of service provision as an element of the overall respite or residential package available.

The cumulative impact of staff reductions from this year and previous years through the moratorium on recruitment of public servants and retirements represents a significant challenge for the health system in delivering services. The priority is to reform how health services are delivered in order to ensure a more productive and cost effective health system. The reduction in staffing increases the need for reform. The HSE national service plan includes a commitment to addressing these issues within the context of the Croke Park agreement. It also commits the HSE to minimising the impact on services by fast-tracking new, innovative and more efficient ways of using reduced resources, including greater flexibilities in. work practices and rosters.

Service provision continues to be a challenge for all of us in the current environment. However, the HSE is currently involved in detailed discussions and collaborative working under the auspices of the National Consultative Forum, which includes umbrella groups such as the National Federation of Voluntary Bodies. Through these discussions, the HSE is developing an innovative approach to service provision to maximise how resources are used to protect front line services. There has been a continued expansion in the availability of respite support services and these services have grown significantly in recent years. More than 4,600 people availed of respite services funded by the HSE in 2011. This service has supported people to continue living with their families and in their communities. The Government is very much aware of the importance of respite service provision for the families of both children and adults with disabilities and will seek to ensure that front line services are protected as far as possible within the current difficult circumstances.

Photo of Catherine ByrneCatherine Byrne (Dublin South Central, Fine Gael)
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I thank the Minister of State for her reply. These young people are not faceless and nameless but are people who live in all our communities where they are known by name by neighbours and friends. Their journey through life is difficult enough, without adding further stress or confusion. I welcome what the Minister of State has said with regard to trying to keep provisions in place. The country is in a dark place and we all understand the need for cost effectiveness and value for money. However, we should not extinguish the glimmer of light for these families. The Minister of State may already have given a partial answer to my questions, but can she give a commitment to these families that the services they currently access will be maintained and that when staffing problems occur, provision will be made to ensure these children retain the respite care hours they already have? These people are not looking for anything extra, only to maintain what they have.

Photo of Róisín ShortallRóisín Shortall (Dublin North West, Labour)
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Every sector of the health services wants assurances that things will not change, but we have no choice but to try and change the way we deliver services, because budgets are being cut. This is a reality with which we must all live and we must work within those constraints. This means we must try to get better value for money from the services we provide and closely examine how we spend money to ensure that we achieve savings where there is a potential for making them. We must also ensure we keep the focus on the front line services and end users or clients. It is about the clients, not about the organisations, salaries for management or so on. The focus must be on the end user. The challenge for all of us is to maintain the level and quality of services we have as far as possible, but to do that in a flexible way because of the reduced budgets.