Respite care for disabled children
This document provides practice tips for social workers when arranging respite services for disabled children and young people.
Practice tips for arranging respite care
Respite care for disabled children and young people has developed and grown over the last three decades. This has been in response to the increasing number of disabled children and young people being cared for in their own homes by their parents due to the deinstitutionalisation movement (Mullins, Aniol, Boyd, Page & Chaney, 2002).
Caring for a disabled child or young person provides great emotional, financial and practical challenges (Conyon, 2004) and parents almost universally regard respite care as a critical service and source of support (Joseph Rowntree Foundation, 2000; Eyler, 2005; Langerman & Worrall, 2005; McGill et al., 2006; Shared Care Network, 2007; Cramer & Carlin, 2008). However it is important that respite is also an enjoyable and positive experience for the child or young person (Mencap, 2006). When respite is child-centred, and where the child or young person is actively involved in the planning and reviewing processes, then respite is more successful for all concerned (Heslop et al., 2002).
Respite care involves a series of short episodes of care (Tarleton, 2003) whereby an alternative caregiver assumes the parenting role of the child or young person. There are essentially four different types of respite care:
- informal help from friends and family/whānau
- formal respite care in the child or young person's home
- out-of-home respite in another family/whānau's home or an institutional setting
- community settings such as after-school or holiday recreational programmes (Merriman & Canavan, 2007).
There is no one type of respite that is recommended over others, as each child or young person and family/whānau has unique needs. What families/whānau require is a range of flexible options from which they can choose the best option for them (Miller, 2002; Tarleton, 2002; Tarleton & Macauly, 2002; Boss et al., 2006; Fitzpatrick & Wood, 2007; Mencap, 2006; Merriman & Canavan, 2007).
Despite the positive benefits of respite care for families/whānau it is important for practitioners to bear in mind that there can be some negative effects. Parents and caregivers may feel guilt or a sense of failure by requesting respite. Other families/whānau may feel that no one else can be trusted to look after their child. Practitioners may need to provide reassurance to families/whānau that having a break is in everyone's best interests.
Some disabled children and young people in New Zealand are eligible for Ministry of Health funded respite care through their local Needs Assessment and Service Co-ordination (NASC) service, Child or Adolescent Mental Health Service (CAMHS) or child development team. In such cases these organisations will assess the child or young person's situation and as part of a holistic support package may allocate caregiver support days, respite, buddy support, or after school and holiday programmes.
In some situations however, where disabled children and young people known to Oranga Tamariki do not meet the Ministry of Health criteria, Oranga Tamariki social workers may be tasked with arranging respite care. This could include both children and young people who live at home with their parents or who are in foster care with caregivers. A set of practice tips has therefore been developed to assist social workers when establishing respite care arrangements. The aim of these practice tips is to ensure that respite care not only meets the needs of the parents/caregivers, but also first and foremost is an enjoyable and worthwhile experience for the child or young person.
- Have I discussed with the child or young person what type of respite care they would prefer, how they wish to spend their respite time, with whom and how often and what their desired goals and outcomes for respite are?
- Have I provided the child or young person with an opportunity to meet any potential respite caregivers beforehand so the child or young person can decide whether they would like to stay with that caregiver?
- How am I ensuring that the respite provides stimulating and fun experiences for the child or young person and the opportunity for them to form new relationships and widen their social networks?
- How am I ensuring continuity of the child or young person's personal care routine?
- Have I considered the appropriateness and safety of the physical environment for the child or young person?
- Have I considered the changing needs and wishes of the child or young person over time?
- Have I ensured that the child or young person's particular communication system can be used and understood by the caregiver?
- Have I informed the family/whānau of what respite options are available in their community and consulted with them as to what type of respite care best suits their needs including duration, frequency and location and what their desired goals and outcomes for respite are?
- Have I ensured that plans are flexible and responsive to the family/whānau's needs?
- Is there a plan in place for when the family/whānau may require an emergency break due to unexpected illness or injury or when the planned respite caregiver becomes unavailable at short notice?
- Have I considered what extra supports the child or young person and family/whānau may require at different times of the year such as during school holidays?
- Have I provided the parents with an opportunity to meet the proposed caregivers beforehand to exchange information and/or a written record relating to the child or young person's needs, routines, medication, dietary requirements, special equipment etc in order to provide a consistent approach?
- Have I considered what support and reassurance the parents and siblings may require in order to leave their child in respite care?
- Have I considered whether the respite caregiver is a good match for the child or young person in terms of culture, similar interests, children or young people of similar ages?
- Does the caregiver have the appropriate skills to care for the child or young person and if not what specialist training could they attend?
- Have I considered whether the caregiver is able to communicate and work in partnership with the parents?
- Have I provided the caregiver with a written record relating to the child or young person's needs, routines, medication, dietary requirements, special equipment etc in order to provide a consistent approach?
- Have I discussed with the caregiver what their desired goals and outcomes for respite are?
- Have I provided the caregiver with appropriate ongoing training, support, equipment, remuneration or reimbursement for costs incurred such as transportation?
For all three parties
- Am I regularly reviewing the respite care arrangements and the stated goals and outcomes for the child or young person with all involved parties to ensure that the respite is continuing to meet everyone's needs?
Boss, P., Lewis, C., & Bowen, S. (2006). What is the Future for Family Based Short Breaks in Wales for Disabled Children and Young People? Cardiff, Wales: Children in Wales Policy Group on Issues for Disabled Children and Young People.
Conyon, P. (2004). Competing Discourses: ‘Respite Care' in the Lives of Disabled Children and their Families. Norwich, England: Social Work Monographs.
Cramer, H., & Carlin, J. (2008). Family-Based Short Breaks (Respite) for Disabled Children: Results from the Fourth National Survey. British Journal of Social Work, 38, 1060-1075.
Eyler, P. (2005). Out-of-Home - Not Out of the Family: Rethinking the Care of Children with Profound Disabilities. Newcastle West, Australia: Disability Advocacy Service Hunter (DASH) Inc.
Fitzpatrick, J., & Wood, A. (2007). A Guide to Short Breaks: Supporting Family Carers and People With Learning Disabilities to Have Short Breaks that Work For Them. Birkenhead, England: Paradigm.
Heslop, P., Byford, S., & Weatherly, H. (2002). Better Rewards: The Cost and Effectiveness of Employing Salaried Support Carers to Reduce Waiting Lists of Short-term Care. Bristol, England: Shared Care Network, Norah Fry Research Centre.
Joseph Rowntree Foundation. (2000). Recruiting and Supporting Short-break Carers for Children who are Considered ‘Hard to Place'. York, England: Author.
Langerman, C., & Worrall, E. (2005). Ordinary Lives: Disabled Children and their Families: A Guide for Donors and Funders. London: New Philanthropy Capital.
McGill, P., Papachristoforou, E., & Cooper, V. (2006). Support for family carers of children and young people with developmental disabilities and challenging behaviour. Child: Care, Health and Development, 32(2), 159-163.
Mencap. (2006). Breaking Point: Families Still Need a Break. London: Author.
Merriman, B., & Canavan, J. (2007). Towards Best Practice in the Provision of Respite Services for People with Intellectual Disabilities and Autism. Galway, Ireland: Child and Family Research Centre.
Miller, S. (2002). Respite care for children who have complex healthcare needs. Paediatric Nursing, 14(5), 33-37.
Mullins, L., Aniol, K., Boyd, M., Page, M., & Chaney, J. (2002). The Influence of Respite Care on Psychological Distress in Parents of Children with Developmental Disabilities: A Longitudinal Study. Children's Services: Social Policy, Research & Practice, 5(2), 123-138.
Shared Care Network. (2007). Still Waiting?: Families of Disabled Children in the UK Waiting for Short Break Services. Bristol, England: Author.
Tarleton, B. (2002). Time out for the family. Community Care, pp. 38-39.
Tarleton, B. (2003). Committed to caring: Family-based short-break carers' views of their role. Adoption & Fostering, 27(1), 36-46.
Tarleton, B. & Macaulay, F. (2002). Better for the Break?: Short Break Services for Children and Teenagers with Autism Spectrum Disorders and their Families. York, England: York Publishing Services.