The time has come to move away from traditional segregated models of respite and residential care for people with disabilities. The Brothers of Charity Galway and Ability West have been lucky to have had the opportunity to pilot a new family and community service thanks to Pobal’s (Department of Justice and Law Reform) Enhanced Disability Scheme. The evaluation of this Contract Families Scheme demonstrates how ordinary families in the community can offer opportunities for ordinary non-segregated family and community living for children and adults, which traditional models cannot do. This initiative is in line with the most up-to-date legislation and policy formulation nationally and internationally. Most notable here is the UN Convention on the Rights of Persons with Disabilities (2006), which promotes the right to inclusion (Article 19).
International best practice in childcare advocates the provision of foster care, rather than institutional residential care provision. Why should children with disabilities be different? Residential care is only targeted for children who have difficulty in living in family home environments. For adults, the community-living model promotes models such as this to include people with disabilities in communities rather than segregating them in group-living arrangements.
Contract Families has been developed out of the voluntary Home Sharing Scheme which was started by Ability West in 1985 and which became interagency with the Brothers of Charity Services in 1989. This is a scheme whereby families and individuals are recruited, trained, assessed and supported to take children and adults with learning disabilities into their own home for short periods of time on a regular basis. Families are not paid, but receive modest expenses.
In the UK, the Home Sharing model had developed further into what became known as Specialised Foster Care or Salaried Carers Schemes. In such schemes, families are recruited to provide a greater level of service on a contract basis, primarily for children with more complex needs. As well as being paid expenses, these families are also paid a retainer to secure their service on a contractual, rather than voluntary, basis.
In 2006, Sheelagh McInerney, Team Leader, Family Support Services, Brothers of Charity Services Galway, successfully applied to Pobal for funding to run a pilot Contract Family scheme based on the UK model. The Brothers of Charity Service is the lead agency in partnership with Ability West. Funding of €500,000 from Pobal provided the opportunity, over a two-year period, to pilot Contract Families for service users of both services. The project started in 2007 and has now come to an end in June 2009. This has been a wonderful opportunity to test out a new model of service, and to evaluate it. The evaluation has demonstrated that Contract Families is a viable and flexible model for the provision of alternative living opportunities for people with intellectual disabilities (Murphy 2009). Not only is the scheme Person-centred, but it is also very clearly a value-for-money option.
Values and benefits of this model
This is the most person-centred of respite options available. Service users, their families and Home Sharing families themselves have stated over and over again throughout the years that it is a beneficial experience for them. There is a unique focus on the individual, which it is impossible to replicate in group services. Getting this right results in relationships which last for life. Most importantly, this is about sharing ordinary life experiences outside the individual’s own family. We say that the success is in the match between individual and host family. By getting this right, we have seen relationships which have lasted for life in Home Sharing.
Rationale for and details of the project
The Contract Families Project arose from the belief that there were many individuals and families available in the community (including staff) with the necessary level of skill, dedication and commitment to provide respite and alternative care for individuals with higher needs.
This was to be done on a formal contract basis, whereby the families would provide 16 nights/sessions per month to persons primarily with higher needs than those who traditionally used Home Sharing. In return for this commitment, they would be paid a retainer (in line with the ‘Rent a Room’ scheme for tax purposes), as well as expenses. This would enable them to make a lifestyle choice to work from home and in return to create greater opportunities for people with disabilities to enjoy a home-from-home in the community. The expenses payment was higher for weekend and holiday nights, to reflect the extra time commitment. As the scheme developed, it was decided to offer enhanced expenses in recognition of the extra requirements of persons with higher needs (as determined on the National Disability Database). Where it was necessary to adapt host families’ homes, the cost was covered by the scheme.
The recruitment, training and selection process is very similar to that in foster care and is continually being updated in line with the standards established through the Shared Care Network in the UK.
The Contract Families Pilot Scheme has been a resounding success. It has been established that there are individuals and families who are willing and capable of providing high-quality care in their own homes on an ongoing and secure basis. Eight families have been recruited, trained, assessed and are providing care for 39 individuals (22 children and 17 adults) on a monthly basis. The majority of the people using the scheme have very high needs, such as behaviour which challenges or total physical-care needs. Two of the families have had extensive adaptations carried out on their homes to accommodate their guests. These children and adults are treated as part of the family and participate in extended family and community events with the host families.
It was found that it is unreasonable to expect that a family without previous experience of doing this work would be able to provide sixteen nights per month care immediately. Five of the families had already been involved in Home Sharing and were able to increase their provision must faster than those who had not previously undertaken this work. This finding was in keeping with recent research carried out in the UK by Jeanne Carlin (2008).
The down-side of a pilot project is that we could not guarantee continuation after two years. Therefore, people in full-time employment were reluctant to give up that employment in the face of such uncertainty. Following a recruitment drive targeting staff specifically, it is clear that some would choose this option if there were secure funding to guarantee the future of the scheme.
The outcome of the evaluation has indicated that Contract Families is a resounding success. It is person-centred, inclusive and community-based. It works well for all stakeholders.
Moreover, the evaluation has given the opportunity of comparing the costs involved in Contract Families with traditional residential respite care. All of the associated costs have been factored in for each model and it has been very clearly demonstrated that Contract Families costs two-thirds less than equivalent residential care.
We were conscious of the need to plan for mainstreaming this project at the end of the period. To ensure access to development funding in 2009, great care was taken to ensure that the people benefiting from the pilot project were those in greatest need, and who would therefore attract prioritised funding. However, as development funding has been minimal, only a small amount has been allocated to support the project. Furthermore, in 2008/2009 there has been a decrease of three percent in core funding for the organisations involved. The scheme has enabled the provision of essential service to people with the highest needs on the residential and respite waiting lists. These are people in circumstances where they and their families cannot cope without this level of input.
It is our view that Home Sharing and Contract Families should be run in tandem—as part of a coordinated service. To be successfully mainstreamed, family-based alternative care needs to be made a strategic priority at national level. The needs for alternative care for persons with intellectual disabilities are increasing all the time. Even in the days of the Celtic Tiger, the funding available only reached those in dire need; in 2006, only 13 people were funded for new residential services, out of a prioritised group of 79 in HSE West (Galway).
Not only do we want to retain the present service, but the steering group of the Contract Families Scheme are advocate strongly that the scheme should be expanded through the West, in the first instance, and then nationally.
What is needed is will, vision and strategic commitment.