In the spirit of the above extract from the Midlands Health Board’s Mission Statement, Lough Sheever Centre (Mullingar) embarked two years ago on a programme of supported living. The programme was offered to a small number of people who had been living in a large residential setting, in order to promote a more independent lifestyle for them. Other persons who might otherwise have had to come into residential care were also accommodated by the new service.
The project started with a needs assessment of individuals who wanted to ‘have an ordinary place to live’. This involved predicting the level of support each person would require, and an estimation of the corresponding requirement for support-staff. Some of the individuals were then ready to go ‘flat-hunting’, which proved both fun and fruitful. For some others, who lived in their home of origin, help was given to ‘do the place up’ to make it as comfortable as possible.
In order to ensure that everyone’s rights were fully respected, terms of agreement, itemising specific support needs, were signed by all parties. The nature of support varies considerably. Some individuals require help with financial planning; others may need help with shopping and meal preparation; still others prefer the security of knowing that someone is going to call to see them regularly to ‘make sure they’re okay’. Whatever the level of support, the contract/agreement reflects what is mutually considered to be appropriate.
What is evident from the Mullingar experience is that the supported living service provided from the Lough Sheever Centre has had enormous positive impact and has been warmly welcomed by each of the participants.
In Mullingar supported living has achieved:
- prevention of the individual’s need for residential care in a more restrictive setting
- self-empowerment in terms of life-style choices
- education of the broader community about the capacities of people with learning disabilities, and
- inclusion in mainstream community living.
What is needed now?
- An extension of the resource allocations to stretch this service to a greater number of families.
- A systematic approach to ongoing evaluation, so that we can accrue hard data and an objective evaluation of the efficacy of the supported living service.
- Greater emphasis on working more in cooperation with existing generic and other special services, such as services for the elderly–particularly when an ageing parent/carer is caring for a middle aged person with a disability.
As guest editor of a special issue of the BILD Bulletin (Dec. 1999) on Family Supports, Dr Roy McConkey, gave the dictionary definition of support: ‘carry weight of; keep from falling, sinking of failing; provide for; strengthen, encourage, give help, or corroboration to; speak in favour of; take secondary part to’ (Oxford English Dictionary). He concluded that present services who smugly think they are doing everything that can be done to support families, probably ‘miss the boat’ entirely, because they have failed to consider what support really means to individuals. McConkey argues strongly for challenging the vested interests that ‘sustain inappropriate services and outmoded practices’, suggesting a new coalition between professionals and consumers that is transdisciplinary, rather than interdisciplinary.
At present, supported living is provided from the context of traditional residential facilities, as an outreach from these settings. With the growth of Centres for Independent Living and the trend towards self-empowerment and individualised, flexible services, it may be that the supported living model is more ‘at home’ in generic rather than ‘specialised’ service provision.
PRINCIPLES OF SUPPORTED LIVING
- The person is supported to continue living in his/her home of origin, his/her ‘own’ home, the home of a family member, or rented accommodation.
- The agency providing support does not own or lease properties.
- The nature of the support service is determined by the person and, as necessary, by family, friends or advocates.
- Decisions about where and how to live are based on the person’s values and preferences, not on a level of functioning or service need.
- A person may live alone or with others and with a choice of room-mates.
- Supports must be broad enough to incorporate all facets of community living and be provided in and out of the home.
- Supports must be flexible; the amount, frequency and duration depend on the needs of the individual.
- Staffing and coordination of supports must include a variety of generic options–home-help, homemaker services, personal assistants–as well as more innovative use of special support systems.
Dennis is known as ‘DJ’ to his friends around Castletown. He attends the Mullingar Resource Centre. His parents are no longer alive, and DJ lives on his own in a small comfortable renovated cottage. Because of the help he has received from the Supported Living Service from Lough Sheever, he has managed at home and has not needed to avail of respite care. DJ enjoys his work and he is proud of his home.
I live in my own flat in town of Mullingar. I moved in two years ago because I wanted my own independence. My family were a great support to me, but sadly my mother got sick and died last year. Sometimes I am very lonely for her.
It’s nice being in town because I can walk to most places. I walk up to Millmount to visit my friends in the community residence there, one evening a week. I used to go to Siol Resource Centre, but now I go to a Fresh Start programme nearly. I can walk up to it.
It’s hard to make ends meet, but I do get rent allowance in addition to the Disability Allowance. That helps.
Margo calls to see me. It’s great to have her, because she can help me with all the difficult bits like budgeting, paying ESB bills and making sure things are okay. Most of all, I know that she really cares about me; when I am in bad form, she really cheers me up! I wish more of my friends had supported living.
Teresa O’Sullivan and Mary Gallagher
These two women have a lot in common. Not too long ago they were both residing with thirty other people on a ward in Lough Sheever Centre, which is the ‘de-designated area’ of St Loman’s Hospital. They didn’t ask to be moved to one of the new group homes, or community residences, simply because they wanted to stay together. (One of the key principles of supported living is the choice of where and with whom you want to live.) It took Teresa and Mary awhile to get used to their flat in town, a luxury apartment overlooking Cusack Park. They have a great view of the Sunday games. The interesting thing is how well their abilities complement each other. Teresa likes to shop and cook’ Mary claims that ‘I’m no good with money, so I’ll do the washing-up and keep the place tidy.’
Margo Corcoran, coordinator of the Supported Living Programme, smiles as she talks about ‘the two gals’: ‘They’re better than any married couple for getting on … and they mind each other so well … There’s no looking back for Mary and Teresa. They have a great life now.’
hails from the West of Ireland. She says that up until recently life has not been easy. She went to a lot of different schools and despite her best efforts she has always found learning difficult. But Sadie has put her school days behind her now and has a good job in a cafe in Mullingar’s busy shopping complex. She has the chance to meet lots of people there and she has made new friends. Sadie shares a rented local authority house and she reports that she is ‘getting on fine’. Sadie gets help with budgeting and paying her bills, and ‘sorting things out’. She says: ‘I’m delighted with the supported living programme, because I always know where I stand, and there is help there when I need it.’