A NEW home-based respite care service which has been introduced in the West of Ireland sees children and adults with learning disabilities being cared for in the homes of host families instead of the traditional residential care setting. writes MICHELLE McDONAGH
The Contract Families pilot scheme, which is being hailed as a major success both by service users and host families, is being provided by the Brothers of Charity services in Galway along with Ability West.
In April 2007, Pobal, under the Enhancing Disability Services (EDS) pilot scheme, funded the Brothers of Charity Services Galway with €500,000 over 24 months to pilot a home-based respite care service for people with high-level needs.
Co-ordinator of the Contract Families pilot scheme, Sheelagh McInerney, who is a family support team leader with the Brothers of Charity, explains that the scheme builds on the voluntary short breaks respite scheme known as Home Sharing – which has been running since 1985 – where host families accepted a person into their home for an overnight or weekend stay each month.
In the case of the Contract Families service, the core difference is that each host family agrees contractually to provide a specific number of respite sessions in the course of any one month. Each host family is paid an annual retainer as well as expenses for the duration of each respite session based on the level of need of the service user.
Most of the families who have come forward to join the Contract Families scheme have come out of the existing Home Sharing pool.
McInerney says: “The learning disability services are currently at a time of profound change as there is a fundamental and most welcome shift occurring in the way in which people with disabilities are supported. At the heart of this very positive change is the focus on person centredness, which sees the person with a disability rather than the service provider or the provider’s agent as the driving force in planning and structuring supports.”
The Contract Families model provides children and adults with learning disabilities a “home from home” experience as they become participants in the day-to-day life of each host family’s particular circumstances.
In 2006, there were 79 people with intellectual disabilities prioritised for residential services by the HSE West as being in “urgent unmet need”.
“The allocated funding was only sufficient to provide a residential service for the top 13 people deemed to have the highest needs. While similar numbers of placements were funded in 2007 and 2008, the numbers on the waiting list increase all the time. This is where Contract Families can be recruited to form a core element of service provision,” explains McInerney.
It is in this overall context, she points out, that the Brothers of Charity Services Galway and Ability West are working together to lead the way in exploring new and best practice.
“Similar experience in the UK has resulted in the emergence of a range of services such as Specialised Fostering or Salaried Carers [ie Home Sharing and now Contract Families in Ireland] who are ready, willing and able to facilitate people with disabilities in moving out of traditional residential and respite services into family and community-based environments.
“In childcare, nationally and internationally, best practice has dictated for many years that care is provided in family and foster care environments rather than in institutional residential environments,” says McInerney.
By January 2009, the Contract Families pilot scheme was providing home-based respite care for 39 service users consisting of 26 children and 13 adults who, McInerney points out, would otherwise have been placed in residential or group home settings at a significantly higher cost or remained without a service.
At present, the average cost of placement for one individual within the scheme is €34,000 versus €78,000 for the equivalent residential setting, she says.
“This has meant that it has been possible to provide service in areas where heretofore the person would have had to leave the area to attend centralised respite service provision. So the principle of community care is much more to the fore in this model of home-based respite care,” says McInerney.
She says the ongoing evaluation throughout the two-year life of the Contract Families pilot scheme has demonstrated the efficacy and cost-effectiveness but, above all, the benefit to service users of this model of service.
“The greatest challenge is that this is happening at a time of diminishing resources. The agencies’ core budgets have been decreased by 3 per cent, the indicators are that there will not be any new funding for the development of services for the first time ever and the agencies are being expected to meet new needs from this smaller resource while maintaining existing services.
“The people currently receiving their services through the Contract Families Pilot Scheme are among those with the highest needs within the organisations. The most immediate challenge is to find a way of maintaining this service for them,” warns McInerney.
While €315 million has been invested in developing a similar model of care in the UK, McInerney explains that the Brothers of Charity and Ability West are currently funding the scheme through “existing resources” which cannot continue indefinitely. She is calling on the Government to provide funding to develop the scheme right across Ireland as an alternative and in addition to residential care.
Both the current inter-agency EDS committee and the scheme evaluator believe that to strengthen and augment the current service within Co Galway, up to 30 contract families catering for up to 120 host persons would cost an estimated €1.5 million annually. To incorporate counties Roscommon, Mayo and/or Clare would cost about €1.3 million per county based on similar targets and would take up to three years to establish on a sound operating basis within the western region.
McInerney says: “And yet, the real challenge is to establish this model of care on a national basis.
“The Contract Families pilot scheme has provided the opportunity to successfully test the model. Ability West and the Brothers of Charity Services Galway both recommend, at this time, the scheme’s expansion locally as part of an incremental strategy to influence practice and service provision across the country.”
The EDS Committee recommends that the Contract Family model of service should be developed as part of mainstream service provision locally and nationally.
“With the right resources, planning, co-ordination and evaluation, this could be a reality nationally within five to seven years for people who are entitled to the best opportunities that life can offer them,” McInerney concludes.
The service user’s family: ‘He’s part of the family while there’
Until they became involved in the Contract Families pilot scheme two years ago, Imelda Curley and her husband had never had a night of respite away from their eldest son, Niall, who has cerebral palsy.
“Niall will be 21 in September and we never used residential respite care for him at all. We always believed that he should sleep in his own bed until he was 18 and family members used to help out but two years ago, it got to a point where even going to a wedding was a hassle because we had nobody who could mind him overnight for us,” she explains.
As Niall is severely mentally and physically disabled, Imelda did not feel she could just ask a neighbour or friend to look after him for even an hour or two.
Her sister-in-law used to help out a lot, but she has her own family to care for and Niall had got too big for her to carry upstairs.
The family’s social worker told Imelda about the Contract Families scheme which had just started and how, fortunately, one of the families lived close to the Curleys in Co Galway.
Niall started going to Helen Gilligan on Friday afternoons until they got used to each other – he then began to stay one night a month, gradually increasing to three nights every month.
Imelda says: “I’m content and happy that he’s going to a family rather than a respite house, it’s not institutionalised.
“He’s part of the family while there which is very important to us and he loves going himself. When I tell him he’s going to Helen’s that night, he nearly hops out of the bed with excitement.”
With an older daughter in college and a five year old to look after, Imelda is thrilled to have some time to spend with the rest of her family.
“If you had your dream come true, this is what my dream would have been in terms of respite services, this is the ideal situation for Niall and me.
“He has made friends with Helen’s husband, children and grandchildren and their friends. He loves being in the thick of things and she involves him in everything.”
The host family: ‘I get so much more from the service users than I give them’
Providing respite care in her home for children and young people with physical and intellectual disabilities is the most enjoyable job Helen Gilligan has ever had – in fact, she doesn’t even regard it as a job.
Her involvement in this area started many years ago when she helped to look after her nephew, Alan, after his mother passed away. When Alan himself sadly died four years ago, Helen went back to work for a medical company.
“I wasn’t getting any job satisfaction, I knew I needed a change of career but had no idea what to do. I remembered when I had Alan in the house, I was so relaxed. I loved having him around.”
Helen decided to do a course in special needs assistance with a view of working in schools, but halfway through the course she was contacted by Sheelagh McInerney, co-ordinator of the Contract Families pilot scheme, who asked her to become involved in the service.
“I thought about it and discussed it with my husband, Edward, and decided to give it a go for a year. I have never looked back since.
“Initially, I thought I might be able to continue with my day job for a while but I was contracted 16 hours a month with Contract Families and I did not think I would be able to give the quality of service needed, so I gave up my job.”
Helen is contracted to provide 20 nights of respite care a month which is divided out among eight service users depending on their level of need. Her clients range in age from four years to 27 with the majority in their teens.
She is paid an annual retainer and expenses for the duration of each service user’s stay – she will never become a millionaire from this work, she laughs, but that is not what she is in it for.
“I really do enjoy every moment of it. I get so much more from the service users than I give them. I was a bit afraid at the start because I only ever had Alan and I knew all his needs.
“I wondered if I would be able to adapt to all the different service users coming to my home, but I got more training and learnt more about each person through meeting them and their families.”
When Helen started on the Contract Families scheme in early 2007, two of her children were still living at home and they, along with herself and her husband, had to undergo a detailed interview and assessment process and all get Garda clearance.
Her first client was Niall Curley, a young man with cerebral palsy who lives a short distance from her home in Corafin, Co Galway.
“Until we started giving Niall respite, his parents had no nights away from him because they feared he would not get the attention he needed in residential care. He, like the other service users, is involved in everything we do now whether it’s going to the shops, having a barbecue, going to the pictures, whatever the case may be,” she explains.
Helen has seven children from her first marriage and her husband of five years, Edward, has four so there are always people coming and going at their home.
“It’s great for our children and grandchildren as much as the service users. I mind one of my grandsons two days a week and he just loves them. He doesn’t see them as any different just because they might be in a wheelchair, which is great. He’s almost two now and he loves to be up in their laps or outside walking with the able bodied service users.”