Residential and Respite Care Services

8th May 2014 - Olivia Mitchell TD

I welcome the opportunity to raise the issue of disability services, residential and respite care services in particular. I thank the Minister of State, Deputy Alex White, for attending in person to respond.

All the talk is about medical cards but qualification for residential respite care has never depended on a medical card. It has never been the constraint. There have been constraints, but they have been funding constraints rather than constraints associated with an income threshold. I believe the Minister made this point recently. One reason I raise this issue is that a constituent of mine who was recently seeking residential care for her son was informed by the HSE that a policy decision had been made to no longer offer residential care to children with an intellectual disability. Is this an actual policy decision? Most accept that it is preferable to care for disabled children at home, but sometimes this is not feasible. Sometimes there are family breakdowns that preclude it. There are children whose intellectual disabilities are so complex and whose behaviour is so challenging that it is almost impossible for their parents to manage. Caring for them can be much more challenging in some cases than caring for a child with a physical disability. Financial constraints aside, I would like to be sure there has been no policy decision to preclude children whose behaviour or family circumstances are such that their parents cannot cope, irrespective of the budgetary position. That is one problem I would like the Minister of State to address.

Another aspect concerns the fact that there have been cutbacks during the years, obviously since the recession. Circumstances have become more acute. In recent years one has been able to say virtually no new residential places have been made available. This, in turn, has put pressure on respite care places. Emergency beds that were kept for respite care use are now being taken by those in need of long-term care, perhaps owing to a death in the family, marriage breakdown or a variety of other reasons. As all of the respite care places have been taken, there is virtually no respite care service available. It is almost non-existent and certainly does not meet the demand. This is coupled with the absence of other supports in the community. The Minister has spoken about the need for more support in the community, but the very concept of respite care is to help parents to cope. This can work only if parents see that their children are making some progress as a result of other interventions available to them to ensure they can meet their potential. I refer to physiotherapy, speech therapy to enhance communication skills and occupational therapy to help individuals function socially in the family and the community. Nothing I am saying is a mystery to the Minister of State because I am sure he is aware that there is a chronic shortage of therapists and services in this area. This is putting considerable pressure on families and, ultimately, driving up the demand for residential care.

For years we have been talking about providing care in the community. The HSE is talking about introducing new implementation networks to try to provide a more seamless service and easier access to services for parents. It is a nightmare trying to gain access to services or even to learn what services are available. Eighty new therapy places have been sanctioned, but I do not know how many therapists have been recruited. To be honest, there are thousands of children awaiting a needs assessment in addition to thousands who have been assessed but who are not receiving a service. It is clear that this must be a priority in the upcoming budget. It is early in the year to be raising this issue, but the problem is acute. Bearing in mind that funding is not available for respite care and residential services, we must try to prioritise in the upcoming budget the provision of services in the community for children with intellectual disabilities.

Minister of State at the Department of Health (Deputy Alex White): I am thankful for the opportunity to outline to the Deputy the position on the matters raised by her.

Specialist disability services are provided in a variety of community and residential settings to enable children and adults to achieve their full potential, including living as independently as possible. Traditionally, the provision of a residential placement would follow a detailed assessment to establish other means of addressing needs rather than admission to residential care. There would be considerable communication between the HSE, the family or guardian of a service user, the service provider and the service user.

The number of children and adults benefiting from residential services in 2013 was 8,880. The target for 2014 is 8,884. Respite care occurs in a variety of settings, depending on the family’s needs and available resources. It can be provided as out-of-home care, in-home care, home-to-home care, home support or family support. Respite care helps to prevent out-of-home placements, preserves the family unit and supports family stability.

There has been continued expansion of the availability of residential support, particularly planned or emergency centre-based respite services. A total of 5,798 persons availed of a total of 243,260 bed nights from residential centre-based respite services in 2013. In 2014, 5,890 people are expected to benefit. In addition, between 2,000 and 2,500 persons availed of non-centre-based respite care services, including holiday placement, host family respite care, overnight respite care in the home and summer camps.

In 2010 a working group carried out an overview of models of respite and residential care with host families in community settings to determine the viability of these models of service delivery for future development. The HSE is aware of the challenge in maintaining existing service levels. By working together, we can identity innovative ways to maximise resources to protect front-line services appropriately.

In 2013 we commenced a major reform programme implementing the recommendations made in the value for money and policy review and the move to a person-centred support model. Key steps this year include an additional investment of €14 million and 130 additional staff. Some €7 million of the moneys allocated are to provide places for approximately 1,200 young people leaving school or rehabilitative training. Some €3 million is to provide emergency placements, while a €4 million investment and 80 additional therapy staff will facilitate the rolling out of a new model of assessment and intervention to provide one clear referral pathway for all children, irrespective of their disability, where they live or the school they attend. There is a reconfiguration of existing resources and efficiencies valued at €5 million are being achieved.

Disability service provision is moving towards a community-based and inclusive model, rather than being institutional and segregated. The conclusions and recommendations made in the report on adult day services entitled, New Directions, and the report, Time to Move on from Congregated Settings – A Strategy for Community Inclusion, alongside the value for money and policy review, are helping us to achieve a more effective, person-centred disability service in line with international best practice. The radical change involves collaborative responsibility shared between the affected persons, their families and carers, a multiplicity of agencies, the Government and society as a whole.

I have listened carefully to what the Deputy has said and agree entirely with the points she raised. As to whether there is a specific catch-all policy in place against providing a residential place, I would be very surprised if that were so. I will certainly raise the matter with my colleague, the Minister of State, Deputy Kathleen Lynch, just to be absolutely clear on the specific point the Deputy fairly raises. The Deputy has correctly pointed out that there are gaps, particularly in the community. I am very conscious of the position on primary care services also because the topic raised is related to it. The gaps in services in the community comprise a priority we have to address. The Deputy is correct to say it should be addressed in the context of the budget to be introduced later in the year.

Deputy Olivia Mitchell: I appreciate that it is realised major and radical change is needed in services, including the referral service. Ultimately, there must be services to which people can be referred. It is important to prioritise this issue.

Just to highlight the extent of how challenging and difficult it can be for families, in one case that was reported to me, the mother of a very disturbed teenage boy with an intellectual disability actually reported herself to the Child and Family Agency as a potential risk to her child. It highlights the measure of despair and desperation that any parent could feel that she felt she had to do this in search of services to help her and her family to cope.

We have all suffered in the recession – some more than others – and, hopefully, things will get better. For many of us, there will be a second chance and many people will recover, but for children with a disability, there will be no second chance. There is only a small window in their young lives where they will actually benefit from the therapies that could be made available to them. It is very important, even in these difficult times, that we prioritise this particular sector.

Deputy Alex White: I again endorse what the Deputy has said. I believe we have achieved some positive change, even in the context of the financial constraints that exist. We are in a period of reform in terms of the structures and the configuration of these services but there are gaps that remain. The Minister of State, Deputy Kathleen Lynch, has done a very good job in terms of maintaining resources as best we can and, in fact, increasing the resources in this area, including the recruitment of new staff. It is an area to which we need to pay constant attention. Deputy Mitchell’s contribution reminds us of its importance as an area of our health service which we need to continually prioritise and better resource in line with the improvements that undoubtedly have been made generally in the country in respect of the possibility for revenue. This is an area we would all agree is a priority.

Residential and Respite Care Services

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