This article outlines the daily challenges faced by families in caring for those with learning disabilities, and the corresponding need for respite services to be flexible in accommodating both short and long term issues. Issues can relate to behaviour, especially in terms of aggression as children get older, general health, impact on family members, and also routine disruptions, such as school holidays. Dr Yacoub discusses both the benefits of respite and the access to it in Ireland, whilst also highlighting barriers to the use of respite services.
One of the striking aspects of delivering a joint psychiatry and paediatrics clinic for children with a learning disability has been the daily challenge faced by the families in caring for their children. Parents and siblings of children with a learning disability often experience the duality of chronic challenges over extended periods as well as acute severe challenges during crises.
Parents report difficulties in a number of areas including;
1. Issues directly related to the child’s behaviour or mental ill health; the child with a learning disability and challenging behaviour may present with aggression and violence which can be manageable in the early years but as he or she become bigger, older and stronger the impact increases considerably. Aggression can be a common form of challenging behaviour (Emerson et al 2001).
2. Physical health issues; the child’s challenging behaviour may escalate during periods of physical ill health but getting this investigated may be difficult due to the need for sedation and a shortage of professionals experienced in assessing this group of children. Dental checks and blood tests may prove illusive for lengthy periods in some cases.
3. The interface with educational or service provision; school holidays or planned closures of Respite centres can lead to disruption in the child’s routine and an escalation in challenging behaviour. This is particularly the case for children with autism.
4. Psychological impact on the family; parents cite tension at home, siblings witnessing aggression and reporting feeling left out or neglected as frequent occurrences. Parents often find it difficult to seek additional support from services yet can simultaneously feel angry at the perceived lack of support.
According to Merriman and Canavan (2007) Respite care offers a break for families experiencing significant stress and normally consists of temporary residential care in the local community. It can also be in the form of home-sharing with host families or inreach into the home. However the authors argue that Respite is not just about a break for parents and carers, nor should it be solely for those under stress. It also provides positive opportunities for young people with disabilities to interact with their peers, to achieve a measure of independence and to enjoy relationships with people outside their immediate family circle. It also facilitates a transition pathway to independence. It is therefore essential. Interestingly Irish qualitative studies found in-home care to be preferred by carers (for example Redmond & Richardson, 2003). This involves a professional providing care for the service user in their own home.
There were 27,622 people registered on the National Intellectual Disability Database (NIDD) at the end of December 2012 (Kelly et al 2013). Based on 2011 census figures, this represents a prevalence rate of 6.02 per 1,000 population. This is likely to be a significant underestimate however as many people with a mild learning disability not accessing services may have not been captured on the NIDD database.
Of the people recorded on the NIDD, 10,221(37.0%) were aged 19 years or under. Of those 1476 availed of some form of Respite facility, including home-sharing with a host family. There were marked differences between regions in Ireland in the total number of respite nights received in 2012.
The NIDD report also discusses future respite need and states that in relation to children and adults captured in the data, 23.5% of those who were living at home or in an independent setting in 2012 received respite care, while 6.3% of the same group required respite care but did not receive it.
In my view access to Respite can be variable. This can often based on the strength of request from the family, and local availability, rather than actual need. Obviously the strength of request from the family should be one of the determinants as families differ in their coping mechanisms and relationships with services. However this has to be explored further to prevent families less able to negotiate with services from being left with inadequate levels of Respite.
Factors such as:
■ Not wanting to impose on others.
■ Anxiety about being perceived as inadequate parents or parents who cannot cope.
■ A lack of awareness of what supports are available.
Can all impact on a family’s ability to seek help which can further its isolation and the difficulties the family encounters.
Whilst an economic evaluation of Respite in its different forms is beyond the scope of this article, Merriman and Canavan argue that it can delay entry into full time residential care.
The Disability Act 2005 states that every person with a learning disability is entitled to an independent assessment of needs. This can describe the ideal level of services to meet all the individual’s needs. Respite can be included among the supports required. A statement of needs is made following on from the assessment of needs.
Families of children with a learning disability can be affected by the children’s challenging behaviour. Respite can be helpful for the families and their children, but access to it is variable. There can be a legal remedy for this to ensure that support from services is determined by need. Respite can take a number of different forms and it is important that services can deliver it in a flexible way.