The need for respite is regarded as a necessity and a crucial component in the provision of support to people with disabilities and their families. The word ‘respite’ has many connotations; it is generally understood to be an opportunity for the main carer to take a break or have a holiday. However, respite also provides positive opportunities to children, young people and adults with disabilities to make new friends and enjoy relationships outside of their immediate family circle.
Home-based short inclusive breaks with host families provide an alternative to traditional residential respite in specialist units and group homes. These breaks give people with disabilities and their relatives a break from their everyday routine and provide positive opportunities for real and sustainable social contact.
The NHSN is an association of people and organisations engaged in using, promoting and providing home-based services to people with disability in Ireland. The association was founded in 2003 and provides governance and support to host families and service providers. The vision of the NHSN is in line with core values of social inclusion and person-centredness and it strives to develop good-practice guidelines and standards for professionals. The association also aims to represent this growing sector on a national and international level.
On 31 October 2013, the NHSN Biennial Conference was held at the Ashling Hotel in Dublin. The theme of the conference, ‘Stepping Forward’, celebrated the developments and successes of home-based breaks in responding to the diverse needs of people with disabilities and their families. There were also presentations on training and support for host families and best practice guidelines at an operational level. The conference was well received by host families and various organisations around the country interested in reconfiguring their traditional respite and residential care services.
The focal point of the event was the sharing of positive changes in people’s lives as a consequence of engaging in this model of respite. Key stakeholders voiced their lived experiences. A ‘guest’ (person availing of respite) spoke about how the consistent, continuous and caring friendship with her host family has helped in overcoming some challenging times. Another inspirational speech from a host carer conveyed the positive impact this experience has had on the whole family in terms of developing awareness, acceptance and sensitivity towards disability. Informal networks of support develop naturally through this model of respite, whereby both families are aware of one another’s ups and downs, major life events, birthdays and celebrations. The testaments from these stakeholders are a reflection of the strengths that are inherent in this model of respite provision.
Another highlight was the opportunity to learn from various organisations on setting up and moving through different types of hosting models. Some organisations have been providing short breaks or ‘home-sharing’ for over 30 years and in recent years have expanded to ‘contract families’ and ‘shared living’. Contract families differ from short break families in that approved families/individuals are contracted to provide a specific number of overnight breaks a month. Shared living offers permanent, longterm care in a family setting to adults with an intellectual disability. Numerous policy guidelines recommend that if a person with disability leaves their family home, either permanently or for a period of time, the substitute home should have all the characteristics of a good family home. Shared living invites people in the community to share their life’s experiences with a person with a disability on a full-time basis. This in turn can ensure individualised supports and the opportunity for a person with disability to lead a fuller, more integrated life.
With the aim of informing organisations who are about to embrace this model of respite, presentations were offered on evidence-based practice guidelines. The process of individuals or families becoming home sharers was discussed in detail, including recruitment, training, assessment, report and approval. Information was also given about the ‘Host Family Handbook’ which has been developed to provide host carers with a compact resource and reference guide of good-practice guidelines. In attempting to assure the creation of successful Host Family Breaks, a proposal for good-practice guidelines is also being developed. These guidelines will attempt to provide a framework which various organisations can work from and give a standard level of support to people with disabilities, their families and their host families.
Challenges were also highlighted throughout the conference. For example, maintaining adequate funding is an ongoing struggle for many organisations. Moving from a traditional model of respite provision to a family-based model is also another challenge. Recognition in policy and legislation on a national level would assist in standardising this provision of respite, ensuring that all stakeholders receive a minimum level of support.
A key strength of the NHSN is that in sharing information and knowledge, various organisations have the opportunity to learn from one another and build capacity. To ensure that this supportive mechanism grows, members meet bimonthly with a view to pooling resources, reflect on practice and strengthen levels of service provision. It was evident from the conference that access to quality community resources striving for social inclusion and increased social capital is the way forward. With this in mind, the NHSH Conference ‘Stepping Forward’ was a positive event that showcased cost-effective innovation in a time of austerity.