Research on Respite Care in Wales Presentation to Carers Learning & Improvement Network

Contents Introduction Some emerging findings Data on quantity, quality and cost Questions

Introduction LE Wales Respite care research commissioned by WAG: Economic and policy consultancy Part of London Economics Limited Previous work in Wales, including: Non-residential social care charges Supporting People funding distribution Payments to foster carers Barriers to employment & learning for lone parents Respite care research commissioned by WAG: Older People and Long Term Care Policy Directorate February – September 2010 WAG letter to Directors of Social Services (1st March)

Research objectives & approach Main objectives Assess the current supply of respite care services Assess the current demand for respite care services Make recommendations about priorities for future respite care provision Main research activities: Assessment of available data Literature review Collection of additional data on quantities and costs Interactions with stakeholders

What is respite care? Working definition: A carer is an individual who provides or intends to provide a substantial amount of care on a regular basis to a friend or family member who is a child with a physical or mental impairment, or an individual aged 18 or over Respite is care provided on a time-limited basis as a replacement for care provided by a carer. Notes ‘substantial’ = 35+hrs/week? Respite care focuses on needs of carer This research focuses on care that is funded by public sector Definitions elsewhere vary, e.g. LA data restricts respite to overnight care

Previous research Our review under way Evidence is mixed, UK evidence limited Some tentative themes: Little evidence of: Strong positive impacts on carers Strong negative impacts on care-recipients Generally welcomed by carers, though caveated by concerns about care quality, and suitability for carers’ needs Hospital care and day care more expensive than domiciliary care, though may also be associated with greater benefits Carers’ needs for respite likely to vary according to characteristics of care-recipients (e.g. Adults/children, physical/mental health problems)

Respite Services in Wales LA funded services LA services - adults - children Independent providers NHS funded services Continuing healthcare Care homes Domiciliary visits Day centres Foster care Holidays Community mental health services Respite beds Domiciliary visits Day services Community hospitals Direct payments Independent providers ? Jointly-funded services

No. of respite care placements for looked after children, by placement, year ending 31 March 2008-09 Source: Data Unit Wales

No. of adults receiving community respite care services at 31 March 2008-09, by need and by LA Source: Data Unit Wales, PM2 returns

Data collection - volumes Adults Children No. of adults receiving overnight respite (PM2 form) Dimensions: age bands (18-64; 65-74; etc) client type (learning disability; mental health; etc) client’s home/not client’s home No. of respite placements for looked after children (SSDA 903 form) Dimensions: placement type (community home; fostering; other respite) need for care (parental illness; family dysfunction; other) Remove ‘overnight’ restriction? Breakdown by type of respite? Any standard respite categories? Type of care provider (e.g. LA, ISP)? Remove ‘overnight’ restriction? Child characteristics (e.g. physical impairment etc)? Breakdown by type of ‘other’ respite? Any standard respite categories?

Data collection - Costs Cost data available on same basis as volumes (previous slide)? Estimates of average costs by respite care type available from other sources? E.g. Payments to third party service providers.

Stakeholder consultation Stakeholders: ADSS Cymru CSSIW and HIW LA social services departments WLGA NHS organisations Carers and care recipients Service providers Advocacy groups Methods: Surveys for data on volumes and costs 25-30 telephone interviews Discussions at pre- existing meetings/events Online carer forums Qualitative surveys through advocacy group contacts

Main providers of respite services in Wales Carers Wales/Carers UK Princess Royal Trust for Carers Contact a family Crossroads Wales Headway Action for Children Alzheimer’s Society HAFAL MS Society Cymru National Autistic Society Parkinson’s Disease Society Others?

Some generic questions What’s your perception of how carers feel about the respite services available to them? How important are respite services relative to other services provided to carers and care-recipients? What is most difficult about matching carers with appropriate respite services? Are there other sources of information on the use of respite services in Wales that you are aware of? Who should we contact with questions about data?

Contact Siôn Jones sjones@le-wales.co.uk Tel: 02920 660 250 Rohan Chindooroy rchindooroy@le-wales.co.uk Tel: 020 7866 8178