Making Community Happen
Pat Reen
Introduction
Prosper Fingal is a community based non-statutory organisation which provides
a wide range of services and supports to adults with an intellectual disability
throughout the North County Dublin region on behalf of the Health Service
Executive (HSE). Our core purpose is:
“To support each individual to live the life they choose, in the same way
and same places as everybody else”.
The purpose of this paper is to outline Prosper Fingal’s experience of integrating
service users into the everyday life of their communities. This experience is
described in terms of the overall cultural shift that has occurred in Ireland in the
last two decades, whereby the rights of people with disabilities are starting to be
acknowledged and the policy of mainstreaming has been adopted by
Government. Within this context Prosper Fingal has not only responded to this
change, but is working with service users to push the boundaries further towards
their full participation as active citizens in their own communities.
Cultural Shift
In the overview to the Report of the Commission on the Status of People with
Disabilities (Commission on Disability, 1996, p.5) those with a disability are
described as “the neglected citizens of Ireland”. The overview goes on to say
that many people with disabilities suffer unbearable conditions because of
outdated economic and social policies and negative public attitudes. However, it
was acknowledged in 1996 that changes, influenced by international recognition
that disability is a social as opposed to a medical issue, had started to come
about.
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According to Quinn and Bruce (2004, p. 315), in more recent times an approach
to disability that is “grounded in human rights rather than charity” has gathered
momentum. They say that this approach is focused on making people with a
disability more visible in society, and in particular using rights as a vehicle to
enable this group to take their place in the mainstream. Prosper Fingal aligns
itself with this human rights-based approach to disability and believes that in
order to take up their rightful place in society, people with a disability should be
viewed and treated as full citizens. Prosper Fingal understands citizenship as
“what it is to be recognised by other people as an individual who is a full member
of the community” and that citizenship “protects our individuality and offers us the
opportunity to find out, on our own or with others, what we want to do with our
lives” (Duffy, 2003, p.2).
The Connection between Culture and Community Living
Prosper Fingal believes that the elements, such as the social model of disability,
mainstreaming, individual planning etc., arising from the recent cultural shift
towards a human rights-based approach to disability, are the key components
the organisation needs to focus on to promote active citizenship for people with
disabilities. Being an active citizen is, in essence, community living.
Making Community Living Happen
Prosper Fingal’s commitment to develop Community Living through promoting
Citizenship is delivered through the following key measures, amongst others:
Consultation
Service user consultation plays a strategic part in how to develop connections
and new options for our target group. In Prosper Fingal our primary response to
service design and delivery is to actively ask service users what supports they
need. However, taking into account the essential role that parents/carers play in
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supporting a person throughout their life, we recognise the importance of
consulting parents/carers. This consultation process is particularly important in
order to work in partnership with parents/carers to ensure that the individual with
a disability is encouraged and supported to make choices, gain experiences and
make decisions as independently as possible. Through a ‘Parent and Family
Forum’ which meets on a quarterly basis we develop this ‘partnership for change’
through debate and the exchange of information. The purpose of this Forum is to
connect families, allay fears, provide different perspectives, make parents/carers
more informed and help them ask questions about the future towards advancing
the life of their family member as a citizen, and as a consequence their own
family circumstances.
Service Delivery
Prosper Fingal’s commitment is to person centred services and within that
approach developing the voice of the end user. A recent example of this is how
we identified a service deficit for how we support the needs of people with mild
intellectual disabilities. We responded by inviting each of these individuals to a
series of face-to-face meetings with senior management, to provide an
opportunity to discuss the issues and difficulties in their lives. These centred
around complex social issues such as, finances, relationships, parenting,
substance abuse, isolation and coping with their place in society. Evolving from
these discussions a new service model is being designed where appropriate
supports will be delivered from a community “Drop-In” location. Central features
of this new model are that it will have a user-led advisory group for both the
implementation and ongoing delivery of the service, flexible operating hours, inhome supports and discretion. This model is a quantum leap from the structured
centre-based delivery model.
Informing
A highly successful initiative that has been in operation since 2007 is the
‘Prosper Times Newsletter’. The newsletter is developed by an Editorial
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Committee consisting of service users and parents/carers. The aim of the
quarterly newsletter is to include and inform. Service users are invited to
contribute articles which can be about any aspect of their life. The Newsletter
enhances the partnership between parents/carers, service users, staff and other
community stakeholders to whom the Newsletter is distributed. The Prosper
Times is distributed to seven hundred individuals and organisations. The
Newsletter will also be available on the Prosper Fingal Website, which is
currently being updated, with the result that the Newsletter will be available to an
even wider audience. An additional benefit from the Newsletter is the creation of
a greater awareness of the potential of people with disabilities to play an active
part in their own communities.
Empowering
Through consultation and key working a lot of service users and their
parents/carers on their behalf reported isolation and a lack of social
opportunities. Prosper Fingal recognised these issues as significant obstacles to
community living. In response, to encourage people to make connections, to
develop the core skills needed to develop and maintain friendships and to be
active in their community Prosper Fingal developed a “Friendship Programme”.
In practice, service users are supported to invite a person/s with whom they
would like to be friends to do a community activity. They must take on the role of
a friend by planning all aspects of the activity including, arranging transport,
agreeing meeting times, exchanging phone numbers, managing the money
required for the activity and ensuring personal care and safety. The value of this
programme to the service users is immense in terms of building social networks,
being active in their community, reciprocity, taking on responsibility and being
independent. This friendship exercise is developed outside of the control of the
provider and the parents/carers.
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Access
Being an active citizen is dependent on being able to access community facilities.
Traditionally service providers such as Prosper Fingal would have been expected
to provide specialist transport. While this reduced personal risk, it also reduced
independence and capacity to access the community. Prosper Fingal recognises
that specialist transport may be required by some individuals, but that for the
majority mainstream public transport should be promoted. Prosper Fingal only
provides a specialist transport service to 17% of its service users. Even at this
we regularly assess the ability and skills of this 17% to ascertain their potential to
use mainstream public transport services. This assessment is supported by
travel training programmes available to all service users. The skills learnt are
transferable to all aspects of a person’s travel needs. In addition none of our
Company transport has identifiable logos or markings thus making it less obvious
as specialist transport.
Mainstreaming
Until the 1980’s disability policy was seen primarily as a matter for the
Department of Health and its agencies. Since then it has been recognised that
the delivery of services for people with disabilities by the public bodies that
provide the service for everybody else is best practice and has come to be called
“Mainstreaming” (NDA, 2003, p. 69). In line with this approach Prosper Fingal
educates service users about, and supports service users to avail of,
opportunities in the mainstream as a first option. Therefore service users are
supported to become members of mainstream community clubs, groups and
societies, to avail of services in the community including health care provision,
education and retail and to secure employment in the community. This requires
service users to take on new roles – the roles Prosper Fingal has identified as
the roles of an active citizen.
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Conclusion
Rapidly the landscape for people with disabilities is changing. The closure of
sheltered workshops, the shift from institutional thinking and settings, the
increased exposure to community options and most especially the emerging
voice of the individual is creating change. As we have learned in Prosper Fingal,
the journey never ends but we are witnessing an increasing acceptance by
society at large for people with disabilities to be included in all activities within
their communities. The above outlines a number of practical measures that our
organisation has applied to advance our purpose.
We can only go further if mainstreaming is underpinned by national policy and
more especially the practical implementation of those policies. It is in our view
incorrect that specialist providers still take on a significant part of the remit for
transport, housing, education and training, general health care and employment
for people with disabilities. Until the appropriate Government departments fully
take on this remit, therefore meaningfully putting policy into practice, full
community living for people with disabilities will be restricted.
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References
Commission on the Status of People with Disabilities. (1996). A strategy for
equality, Report of the Commission on the Status of People with
Disabilities
Duffy, S. (2003). Keys to citizenship, A guide to getting good support for people
with learning disabilities, UK, Paradigm Consultancy & Development
Agency Ltd.
National Disability Authority. (2003). Towards best practice in the provision of
further education and training services for people with disabilities in
Ireland, Dublin 4: National Disability Authority
Quinn, G. & Bruce, A. (2004) Visible citizens: Human rights and disability. In P.
Noonan Walsh & H. Gash, Lives and times: Practice, policy and people
with disabilities, 315-329, Co. Wicklow: Rathdown Press
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