Home-Sharing has helped many people to live independently
It has increased over the past few years, and improved quality
People can live outside of centres, and in their community
Service providers can give a better living option to people
People get to go and live with families in their own home
Health Services need to develop Home-Sharing to continue to improve life for people.
Home Sharing in intellectual disability services has existed in Ireland for the last thirty years as an alternative option to the traditional residential and respite care models of support offered to people with intellectual disability and their families. The last ten years has seen further developments in Home Sharing, which was formally recognised as a model of residential and respite support by the HSE in 2012, with the publication of the report of the working group ‘Respite/Residential Care with Host Families in Community Settings’ (HSE, 2012). Service providers continue to offer people with intellectual disability and their families, alternatives to the traditional models of centre-based respite and residential group home living. Service providers have been further guided in the management and governance of Home Sharing placements with the publication of the ‘Host Family Support Model of Service Provision – Governance/Guidance Document to Support Implementation’ (HSE, 2012).
Home Sharing has been further developed and fostered by the National Home-sharing and Short-breaks Network (NHSN), established in 2003 to promote uniformity and high standards amongst disability service providers throughout Ireland that offer Home Sharing. This alternative to the traditional model of service delivery has assisted HSE services and HSE-funded organisations in the development of person-centred and community-based supports. While acknowledging that Home Sharing is not for everyone, the support model has grown over the years and is becoming more and more popular with people with intellectual disability, their families and service providers (Merriman, B. & Canavan, J. 2007, Murphy, T. 2010 & Coll, M & Scully, S. 2011, ISBA, 2016).
The 2016 International Short Breaks Association (ISBA) conference (a worldwide community promoting the delivery of short breaks) held in Edinburgh, further endorses short breaks as an essential support system aimed at families caring for people with disability. ISBA recognises and promotes the ‘Every Disabled Child Matters’ (2011) campaign and the English Government has legislated for the provision of short breaks for families of people with disability. They recognise the importance of providing short breaks to families as a means to maintaining and continuing to support people with disability in their home/community, and that the importance of these short breaks cannot be overstated. Broach (2016) states that this has been achieved in England through campaigning policymakers and through political influence (ISBA, 2016).
Development of Home Sharing in Ireland
Home Sharing has developed primarily within the non-statutory sector since 1985 and incremental thereafter over the years in response to service need and demands. It was offered as a means to providing alternative forms of residential care and centre-based respite for people with intellectual disability who found themselves in crisis situations. In some HSE community healthcare organisations (CHOs), Home Sharing has developed positively over the last ten years as a response to service providers listening to, and offering choice to people with intellectual disability in the provision of alternatives to the traditional models of centre-based respite and residential group home living. This development encompasses the ethos and values of the HSE Social Care Division Operational Plan (2016), that people with intellectual disability ‘achieve their potential, living ordinary lives in ordinary places, as independently as possible while ensuring the voice of the service users and their family is heard’ (HSE, 2016, pg 2). It must be acknowledged however, that Home Sharing as it is currently delivered is inconsistent nationally.
National Expert Group on Home Sharing
In further recognition of Home Sharing as a model of person-centred and community-based support to adults and children with intellectual disability, the HSE established a National Expert Group in 2016 to carry out a review of Home Sharing in Ireland. The terms of reference for the National Expert Group was to review the HSE (2012) document ‘Host Family Support Model of Service Provision – Governance/Guidance Document to Support Implementation’, and produce a report with recommendations for the future provision of Home Sharing in Ireland. The report of the National Expert Group, entitled ‘Home Sharing in Intellectual Disability Services in Ireland’ (HSE, 2016) was complete in June 2016 and presented to the HSE Social Care Management Team in August 2016.
Report of the National Expert Group
The report is divided into three sections. Section 1 examines ‘Home Sharing as a Model of Service Provision’ and makes a number of recommendations for the service as it (a) is currently managed and governed, and (b) for it to continue as a model of service on offer to people with intellectual disability and their families. Section 2 entitled ‘HSE National Guidelines for Home Sharing’ provides a clear set of guidelines that service providers must follow and implement when offering Home Sharing to adults and children with intellectual disability and their families. Section 3, entitled ‘Guidance Document to Support Implementation’ provides a comprehensive implementation pack to support and guide service providers in Home Sharing as a model of service. Section 3 also includes a training pack that service providers must adhere to and apply to the existing Home Sharing service, and to the implementation and further development of Home Sharing (HSE, 2016).
Defining Home Sharing as a Support Model
As recommended by the National Expert Group (HSE, 2016), all placements are collectively referred to as ‘Home Sharing’ placements. A ‘Home Sharing Family’ refers to any household providing short breaks or full-time support to a person with intellectual disability in their own (Home Sharing family’s) home. In order to bring a consistent approach to the service from a national perspective, Home Sharing as a model of support is sub-divided into three categories, namely a) short breaks, b) shared living and c) contract families.
a) Home Sharing ‘Short Breaks’ families
Home Sharing ‘Short Breaks’ involves a Home Sharing family in the community offering a placement to a person with intellectual disability in their home (Home Sharing families home) for short breaks, and caring for that person as a member of their family.
b) Home Sharing ‘Contract’ families
The physical, behavioural or healthcare needs of some children and adults with intellectual disability are complex and more challenging. In recognition of this, service providers recruit ‘Contract Families’ (specialist carers) from their existing pool of approved Home Sharing families to provide short break support. Contract families are expected to be available to provide short breaks for ten (10), sixteen (16) or twenty (20) nights per month.
c) Home Sharing ‘Shared living’ families
A Home Sharing ‘Shared Living’ family is a family that provides full-time care to a person with intellectual disability, similar to a fostering placement. The shared living family make their home available to a person with intellectual disability, to share their home on a full-time basis as a member of their family.
HSE Disability Reform Programme
As the programme for reform within disability services in Ireland progresses, there is a commitment from the HSE Social Care Division that Home Sharing, as a person-centred and community inclusive model of service, which is embedded in the principles of normalisation, is available to people with intellectual disability and their families as part of the menu of support options on offer. In recognition of Home Sharing as a support model available to people with intellectual disability, the HSE has made provision in the National Service Plan (HSE, 2016) for the further development of Home Sharing as a model of respite and full time support available. This commitment will enhance and strengthen the existing management and governance arrangements for the cohort of people who currently receive Home Sharing support; at the same time it will improve quality, and strengthen the safeguards that are in place to support people with intellectual disability who receive Home Sharing support, either directly by the HSE or on behalf of the HSE.
Home Sharing as a Model of Service Provision
It is widely held internationally, nationally and indeed from the experience of local intellectual disability service providers in Ireland, that there are many advantages to Home Sharing as a model of service provision. Home Sharing aims to have opportunities for self-expression in all aspects of the person’s life. Home Sharing strives to empower people with intellectual disability to have dignifying relationships and to be included meaningfully in the life of their communities. The uniqueness of Home Sharing is that support is provided for individuals with intellectual disability by families in the community, in their own (Home Sharing family’s) home. People with intellectual disability enjoy the opportunity of developing new relationships and being part of new communities whilst enjoying a short break or full time support (HSE, 2016).
Siun is a sixteen-year-old girl who has cerebral palsy, a profound intellectual and physical disability. Siun is extremely medically frail. Attendance at school is sporadic due to poor health and frequent hospitalisations. Siun requires twenty-four-hour care and receives all her nutrition through a peg tube. Her natural family are overwhelmed and exhausted with this relentless cycle of caring for their daughter. A Home Sharing family provides two (2) overnight breaks per week to Siun. Her natural family have described this support as a ‘lifeline to them’. Significant training was provided to the Home Sharing family by the clinical nurse specialist with the support of the paediatric hospital. Regular contact is maintained with the Home Sharing family by the clinical nurse manager and the social work team leader.
Families of people with intellectual disability are advising service providers that one of the supports that they need to enable them to continue to care for their family member at home is short breaks. Short breaks give them a break from their role as carer, and provide their family member an opportunity to be with others and benefit from new experiences. In research carried out by UCC Science Shops (2011), parents spoke about the pressure on them as carers.
Families who avail of Home Sharing have reported that close and trusting relationships have developed between them as carers, their family members and their Home Sharing families (HSE, 2016).
Challenges of Home Sharing
While recognising the advantages of Home Sharing for people with intellectual disability there are, however, strategic and operational challenges in the delivery of this model of support within an Irish context. There is currently no legal framework for the regulation of Home Sharing in Ireland, which is urgently required to underpin the safe governance and management of the service. As Home Sharing has developed ‘piecemeal’ over the years, limited resources are allocated to the monitoring, management and further development of Home Sharing nationally. There is also an inequity in the protection afforded to children with intellectual disability who are in Home Sharing on a full-time basis but are not under the protection of a care order.
Notwithstanding these obstacles, the National Expert Group advocate for statutory recognition of Home Sharing and for the continued development of Home Sharing as a model of support on offer to people with intellectual disability and their families. This is in keeping with international and national evidence to support Home Sharing as an individualised, person-centred and inclusive model of support service, as Home Sharing supports people with intellectual disability to receive support with families in the community. Nonetheless, Home Sharing in Ireland requires a commitment and further investment by the HSE and various Government departments for it to continue as it currently stands, and for its future development as part of the HSE service planning process. Immediate action is required in this regard.
The report of the National Expert Group ‘Home Sharing in Intellectual Disability Services in Ireland’ (HSE, 2016) has identified both strategic and operational challenges for Home Sharing within an Irish context while at the same time it has provided the blueprint for resolving these issues. The report calls for the further development of Home Sharing as a model of full-time and respite support for people with intellectual disability in Ireland. This must be delivered in line with the HSE Corporate Plan 2015-2017, where the overall aim is ‘to provide high quality, sustainable health care which encompasses the values of Care, Compassion, Trust and Learning’ (HSE, 2015, pg 4). At the same time, Home Sharing must encompass the mission of the HSE Social Care Division whereby the aim is about ‘supporting the ongoing service requirements of people with disabilities with the designs and models of care/support and services to support and maintain people to live at home or in the community and to promote their independence and lifestyle choice in as far as possible’ (HSE Operational Plan, 2016, pg 2).
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