Click icon to add picture 8/5/11 “Is Cooperative Short Break Provision the Answer? The Perspectives of Families of Children with Autism- an overview”  ‘Making a REAL Difference’ Seminar  Dr. Mahmoud Emira  29th June 2011

8/5/11 Introduction  Autistic spectrum disorders (ASD) affect 6% of the UK’s population (Blakemore & Frith, 2005)  Many children & young people & their families stated that they are not able to access appropriate provision and had ‘given up’ seeking any short break and leisure activities (Waller et al, 2008, Thompson et al, 2009)  This planned research project argues that families could overcome the challenges they may face & receive the support they need if they offer cooperative short break provision (CSBP) to each other.

Click icon to add picture 8/5/11 Short breaks: advantages Numerous advantages for families & their disabled children alike (Langer et al., 2010; Preece & Jordan, 2007; Robertson et al., 2010), regardless of the level of their disability. Offer major support for families of children with autism (Tarleton and Macaulay, 2003) Became a legal duty on local authorities on 1st April (April 2011)

8/5/11 Short breaks: challenges  High levels of stress (Preece and Jordan, 2007).  Access can be challenging (Preece and Jordan, 2007) e.g., families’ lack of trust in the service providers, staff attitude & lack of flexibility (Emira & Thompson, 2011).  One in three families aren’t currently accessing any care/support services (March 2010)

8/5/11 The status quo of funding  The UK Government has invested heavily in improving outcomes for disabled children (DfES and HM Treasury, 2007).  £150m to Primary Care Trusts (PCTs) in England from (Third Sector Online, 2010).  £40m of the £50m allocated in 2009/10 was spent in other areas including, in some cases covering deficits (Princess Royal Trust for Carers and Crossroads Care, 2009).  Only 23% of that year’s £50m has been used by PCTs to increase services, which were not focused solely on breaks for carers. This likely to affect the quality of the service provision.

8/5/11 The status quo of funding (cont.)  Additional £800m investment for short breaks for families with disabled children (December 2010).  Specialist services across the country to be axed (March 2011). Funding is reduced well in excess of £500m by the end of Mar 2011  87 of the 152 local authorities with responsibility for children's services revealed cuts totalling £305m for the next financial year (March 2011).  A High Court challenge has been launched against Blackburn and Darwen Borough Council following its decision to withdraw funding for a short breaks service that supports more than 20 disabled children (April 2011)

8/5/11 Family engagement: why? Identify what constitutes a useful form of short break (Langer et al., 2010). Directly reduce the number of disabled children who end up in care (Together for Disabled Children, November 2010) Further research to improve provision (Robertson et al, 2010). Families as providers (Langer et al., 2010) Relatives aren’t always ready, confident/willing to support (ibid. 2010). Build a relationship with another family with similar experiences. Family Based Short Break in Ireland (Hanrahan, 2010)

8/5/11 Research aim & questions Aim: to study perspectives of families of children with autism on (CSBP).  What are the reasons that would make families consider CSBP?  What do they think about other families providing CSBP for their children?  Do families think they could care for other families of children with autism?  Do they have concerns about providing CSBP for others?  Do they feel CSBP could complement current provision?

8/5/11 Terms & conditions It should be noted that:  Recruitment might not be families’ responsibility  Participation is voluntary and should complement rather than replace current provision.  Families should continue to get CSBP support (Disabled World website).  The advantages should outweigh any likely disadvantages (Marriage and Family Encyclopaedia).

8/5/11 Research design  A sequential mixed method approach, using both quantitative and qualitative data (Tashakkori and Teddlie, 1998).  A questionnaire survey and short follow-up telephone interview  Survey: breadth of coverage (Kelley, Clark, Brown and Sitzia, 2003).  Telephone interview an effective way of gathering a large amount of data (Thompson et al., 2009) relatively quickly.

8/5/11 Research sample  Children who are entitled to receive short breaks are often divided into three bands: low, medium and high level need.  ASD Support Group (membership of 120 families).  Families, children with autism and their siblings, if possible.

8/5/11 Expected impact/practical importance CSBP is likely to: a) provide a flexible, & easy-to-access short breaks, b) prevent delay & reduce waiting lists to accessing current provision c) enable families & their children with autism to build relationships with other children & their families. d) Incur no cost to trade-off CSBP (Shaw & Gallegos, 1985).