NDA PRESENTATION 2010.
PREAMBLE
This is not an academic or research paper.
This paper is a personal account (written from memory) by a ‘Practitioner’ and from the perspective
of experience/s of leading the change process, which assisted the transformation in lifestyles for
people living in institutional settings to ordinary community based alternatives.
CONTEXT
St Anne’s Service Sean Ross Abbey had previously been a home for single mothers. Because of the
sensitivities attached to such facilities, there was always that sense associated with St Anne’s that
‘we shouldn’t visit the past’ and that many things were left unsaid.
In 1972, St Anne’s commenced providing services to children with intellectual disability.
By 1991, approx 100 children and 28 adults were housed in St Anne’s. These 28 adults had simply
nowhere else to go and the conditions prevailing in St Anne’s (particularly for Adults) were
Dickensian (at the most charitable).
IMPETUS FOR CHANGE
(A) INTERNAL FACTORS
In 1991, a number of things happened simultaneously, which ultimately shaped the future direction
of the lives of those who were associated with St Anne’s.
1. The Religious Congregation had a ‘Chapter’1. Arising from this Chapter the then Superior
(who came from a Nursing / Caring background) was replaced by a Human Rights focused
educationalist.
2. The first non-religious (male) senior post holder was appointed as Director of Services.
3. Families of Adult Children were extremely concerned for their children’s future. Many of
these adult children were identified for incarceration in Mental Health facilities.
4. Service Users through their behaviour were clearly signalling that we were not addressing
their basic needs (Maslow). Diet, Clothing, Privacy, Freedom, Respect, etc.
5. The Health Board was encouraging St Anne’s to tackle the emerging challenges.
6. Some Staff (particularly new comers) were uncomfortable about work practices and
questioning if there were not better ways of ‘caring’ for people. Some people would
privately express their embarrassment at and powerlessness to change some of the things
1
A Congregational event which occurred every 5-7 years, where the Congregation reflected on the previous Chapter and redeployed
resources to meet the priorities they identified for the coming period.
they found themselves doing and indeed some felt that they would not wish their families or
friends to know the detail of their daily work.
7. The local community did not know the workings of St Anne’s. There was a prevailing sense of
secrecy (probably prevailing as a result of St Anne’s former status), which ironically
perpetuated undesirable conditions. St Anne’s was approx 2 miles from the town of Roscrea,
but it could have been a 100 miles away – the paucity of interaction was striking!
(B) EXTERNAL FACTORS
In addition to internal influences, society generally was beginning to present challenges as to why
the inertia which prevailed at St Anne’s might need to be challenged.
1. The public generally was beginning to demonstrate more interest in issues of marginalisation
and exclusion in Irish society. This provided a sense of encouragement to those people who
were convinced that things needed to and could change.
2. Economic circumstances were beginning to improve – the ‘Celtic Tiger’ was on the way.
POSITIVE SUPPORTIVE FACTORS
(A) NATURAL (GENERIC) SUPPORTS
1. Many residents were approaching the age of 18 years, which is a usual and accepted age for
transitioning from childhood to young adulthood. In addition, many of these young people’s
siblings were of a similar age and therefore also experiencing a transitioning process. This,
coupled with fear for the future, sharpened the focus of parents to the need to look ahead
and to be open to not previously tested options.
2. The availability of the DPMA2 and later the DA to / for people, who transferred out from the
Institution, allowed for opportunities which otherwise could not have been considered.
3. The availability and benefits of the Medical Card ensured that people did not have to
consider the implications if such were not available.
4. St Anne’s delivered a Diploma Course in conjunction with St Patrick’s University Maynooth,
part of which involved students ‘shadowing’ residents for a 24 hour period and writing up
this experience in the First person. This exercise was shared with Staff and families and was
a powerfully (emotive) potent factor in reinforcing the necessity for change.
(B) SPECIFIC STRUCTURES
1. The Department of the Environment Schemes provided an enormous opportunity to explore
alternative Housing options to contrast with institutional congregate accommodation.
2. The Health Boards had agreed structures with the NFVB3 whereby communications were
facilitated between Service Users, Families, Service Providers and HSE Officials who were in a
position to influence important decision making. Examples of such structures were, Mental
2
Dependent Persons Maintenance Allowance subsequently became the Disability Allowance
3
National Federation of Voluntary Bodies
Handicap Services Development Committees (MHSDC) which subsequently became
Intellectual Disability Services Development Committees (IDSDC); Mental Handicap Services
Consultative Committees (MHSCC) which subsequently became Intellectual Disability
Services Consultative Committees (IDSCC); Area Federation Committees; Sector Teams; Local
support / advisory / planning groups – Birr, Templemore, Thurles.
BARRIERS
(A) INTERNAL OBSTACLES
1. For Service Users, this was unknown territory and there were understandable anxiety
attached thereto.
2. For families also, there was fear of the unknown and when anxieties arose, the certainty of
basic ‘safety’ had the potential to overshadow dignified risk taking, even when the ‘safe’
option was not in the individual’s best interest.
3. Many staff although quietly (privately) accepting that this was the way forward, had real
concerns about what such changes would mean to them – disruption to established family /
social routines, changes in work practices and shift patterns, increased responsibility and
accountability, etc.
4. The previous regime of the medical model was not conducive to moving on. Questions
frequently posed were;
a. How can they get their medication without a nurse?
b. What if they have a seizure?
c. How can their challenging behaviour be managed outside of St Anne’s?
(B) EXTERNAL OBSTACLES
1. Not previously unionised, St Anne’s became an environment fraught with industrial unrest.
Resistance and intimidation became a feature from / with individuals and groups. Different
disciplines became entrenched in the positions they might adopt. Contact from Trade
Unions increased.
2. There was a ‘backlash’ from some unanticipated community contacts. Suppliers, such as
Butchers, Milkman, Breadman, Veg and Cleaning suppliers were feeling threatened and the
impact of this on a small close knit community was significant.
POSITIVE SUPPORTIVE FACTORS
In 1992, a line was drawn in the sand, when the Congregation endorsed the decision that no further
admissions would be accepted into the Institution. This decision was not publicised and all new
referrals were quietly and systematically processed and planned for within a community context
where institutionalisation was simply not an option.
Planning in this way, ensured that we did not perpetuate the existing poor conditions and new
service options provided for every new referral, provided possibilities for other individuals already
within the system, to move on.
The first house (Shalom) opened on site in 1992, when 5 young people moved from a variety of 12 –
15 bedded wards or units to a family style farm house. There was significant opposition to the
development. None of the then existing nurses (who had leadership roles) applied for the role of
Manager of this Home and the Manager (not nursing) experienced considerable hostility and
intimidation for some time. This House quickly became home and the enhancement in lifestyle for
the 5 residents was quite revolutionary with word quickly circulating amongst families that
significant improvements were possible.
The first house off-site opened on the Templemore Road (Teach Failte) shortly thereafter.
Other factors which supported the transition process, included;
Service User Moves Group. A Group was set-up comprising staff from across the services to look at
who should move to where, based on the information elicited from all possible sources. The only
definite principle that this Group had to work with was that all individuals could and would move. An
assurance was given to everyone and their families when they moved, that if problems persisted
after a 3 months period, the placement would be reviewed again and other options explored.
When actual moves were being undertaken, a deliberate effort was made to involve communities in
the associated processes. Service Users and Families helped pick colours for rooms, furnishings, etc.
Neighbours were encouraged to move belongings, Farmers volunteered with Tractors and Trailers.
Service Users, Families, Neighbours, Staff and Friends baked and helped prepare for House warming
parties. In Birr, Neighbours provided security for a number of weeks for a furnished property, until
we were ready to move in.
ROLE OF THE DEPARTMENT OF THE ENVIRONMENT (DOE)
St Anne’s set up its own Voluntary Housing Association (Sean Ross Abbey Voluntary Housing
Association) and with the assistance of the DOE Capital Assistance Scheme (CAS) built 4 purpose
built 8 bedded bungalows for people with high support needs. In addition, other homes were also
purchased and refurbished specifically to cater for the needs of the residents who would occupy
them.
Properties were also leased (some by St Anne’s and some by the Service Users themselves) and
people availed of the State Rental Subsidy scheme, where appropriate.
Other people were facilitated to return to their own family home with identified agreed supports.
One woman who found herself vulnerable after the death of her parents, was assisted to return to
her family home. She rented a room in her house to another person with intellectual disability and
between them the purchased a vehicle, which was used by staff to drive them to and from activities
of their choice. St Anne’s provided the staff and the two ladies between them were responsible for
all other expenditure. This arrangement necessitated a number of Contracts involving HSE, St
Anne’s, SU Family and the two service users. These contracts and the negotiations arising in their
formation, provided a confidence that all sorts of arrangements can be formalised into relatively
straightforward agreements (if) where there is good faith from all parties.
WHAT DID WE DO ABOUT DAY SERVICES
At St Anne’s we tried not to think in terms of Day Services. We tried to think about ordinary lifestyles
and the concept of ‘Services without walls’ was an aspiration. Essentially, this meant that buildings
were not necessarily the predominant feature which dictated what people did and where.
We endeavoured to involve people with mainstream classes, courses and resources.
Centres where established or being planned, operated as Resource Centres rather than workshops.
This meant that the centres acted as a base, where people accessed the resources within the local
community, from and returned to the base when not actively involved in other ventures. Some
examples of community based enterprise projects include the Railway Shop at the Railway Station in
Thurles and the main street shop in Templemore.
PROGRESS / OUTCOME
In 1991, over 100 people were institutionalised in St Anne’s.
By 2007, 150 people were living in a multiplicity of living arrangements all across North Tipperary
and South Offaly
Thank you for your attention.