Rights-based Housing and Social Supports
for People with an Intellectual Disability:
Issues for Policy and Practice in Ireland
International Conference on Contemporary
Housing Issues in a Changing Europe, 20 – 21
April 2012, NUI Galway
Michael Browne
PhD Research Fellow
Child and Family Research Centre
NUI Galway
Outline of Presentation
• Defining Social Supports
• Housing-related social supports
• Article 19 UN Convention on the Rights of
Persons with Disabilities
• Independent living and integrated social supports
• Concept of ‘Floating supports’
• Fragmentation of the Irish service delivery system
• Challenges for integrating housing and social
supports
• Some questions for consideration
Social Supports
While social support is defined by varying terms in
the literature, it is generally agreed that the
concept broadly refers to the assistance and help
that one receives from others.
• The function and quality of social relationships
• An exchange of resources (mutuality)
• Key component of citizenship and social solidarity
Social Support: 5 categories of
Distinction
• Informal vs. Formal
• Received vs. perceived
• Structural vs. functional
• Group vs. individual
• Direct support vs. enhancing natural support systems
Informal/Formal Networks
• Informal Networks -- family members,
friends as social groups/organizations -typically provide social support for daily
life routines.
• Formal Networks –
– Professionals (e.g., behaviour support workers,
social workers, care assistant workers )
– Agencies (income support , health, residential
services early intervention programmes)
Received/Perceived
• Received social support is defined in terms of
interventions that actually assist the individual in
accomplishing a goal
.
• Perceived social support refers to the recipients’
understanding regarding the support provided by
others
• A key question is: From the perspective of the
recipient, is it helpful or not?
Perceived Social Support
• Conceptualizing social support in terms of individuals’
perception of the support is regarded as the most
important aspect of the social support process.
• Parental views of the nature of support provided by
others were related to satisfaction with support rather
than the actual amount of support (Dunst et al 1994)
• The importance of dialogue, consultation and
partnership with social support recipients
Dunst, C. J., Trivette, C. M., Hamby, D. W. (1994). Measuring social support
in families with young children with disabilities. inn C. J. Dunst, C. M.
Trivette, & A. G. Deal (eds.), Supporting and strengthening families: Methods,
strategies, and practices (pp. 152–160). Cambridge, MA: Brookline Books
Structural/Functional
• The structural aspect of social supports refers
to:
– The existence or lack of fundamental social
relationships and ties
– The size, range, and interconnectedness of the social
support networks.
• Functional measures of social support refer to
the emotional, informational, and instrumental
aspects of the social support network.
Emotional Supports
• Emotional support is characterized by:
– Expressions of love, friendship, care and
solidarity
– Verbal and nonverbal communication of
support and concern
– Support which reduces distress, fosters selfesteem and permits the expression of feelings.
Informational Support
• Informational support refers to supports that
empower individuals to improve their current
situation and that provide them with strategies to
cope with difficulties
–
–
–
–
–
Information and knowledge
Advocacy support
Educational support
Skills development and enhancement
Transparent information about actual supports/services
available
Exploiting and Using Information
• As much attention needs to be given to the
conversion and use of information in different
settings as to its provision
• Dealing with the problem of ‘information
overload’
• Local networks as key to promoting awareness,
access and the exploitation of information within
communities.
Instrumental Support
• Instrumental support refers to tangible
actions that enable another person to carry
out his/her personal responsibilities
– Provision of goods and services
– Money
– Help with practical tasks
Group/Individual
• Both group and individual interventions may involve
informal and formal supports
– Families, friends, peers, community/neighbourhood groups
– Professionals and service providers
• Depending on the individual and on the existing social
context, a group or individual support intervention
may be the most effective.
• A key consideration is that group formats tend to be
more cost-effective
Direct Support/ Enhancing Natural
Support Systems
• This distinction refers to whether a given
intervention is targeted at directly providing
support (e.g., instrumental support) or
whether it is targeted at producing lasting
changes in the naturally occurring support
environment (e.g., developing or improving
social skills or making changes in social
networks).
Direct Support/ Enhancing Natural
Support Systems
Interventions targeted at enhancing social
skills or improving the naturally occurring
social environment are based on the belief
that people can create and maintain support
systems (or their perception of the support
received from these systems) if they acquire
the necessary skills.
Family Support
• Family support is grounded in social support theory
which recognises the crucial part played by informal
social networks.
• The family is supported by the extended family and by
friends which are in turn surrounded by the school and
neighbourhood and then by community, voluntary, and
statutory agencies, services, and organisations.
See Dolan, P. Pinkerton, and Canavan, J. (2006), “Family Support: From
Description to Reflection” in Dolan, P., Canavan, J. and Pinkerton, J. (eds.),
Family Support as Reflective Practice, Jessica Kingley Publishers, London and
Philadelphia.
Citizenship: The Societal Nest
Article 19 of the UN Convention on
the Rights of Persons with
Disabilities
• States Parties to the present Convention recognize
the equal right of all persons with disabilities to
live in the community, with choices equal to
others, and shall take effective and appropriate
measures to facilitate full enjoyment by persons
with disabilities of this right and their full
inclusion and participation in the community,
including by ensuring that:
Article 19 of the UN Convention on
the Rights of Persons with
Disabilities
– (b) Persons with disabilities have access to a range of
in-home, residential and other community support
services, including personal assistance necessary to
support living and inclusion in the community, and to
prevent isolation or segregation from the community;
– (c) Community services and facilities for the general
population are available on an equal basis to persons
with disabilities and are responsive to their needs”.
– (a) Persons with disabilities have the opportunity to
choose their place of residence and where and with
whom they live on an equal basis with others and are
not obliged to live in a particular living arrangement;
People with an Intellectual Disability:
Integrating Housing and Social Supports
• The housing and related support needs of people with an
intellectual disability are diverse depending on the type
and degree of ability/disability.
• Responding to these needs involves providing a wide
range of possible options, thereby ensuring greater
individual choice.
• ‘Appropriate Housing’ must include provision for
whatever supports are appropriate and necessary to ensure
that a person can sustain as independent a life as possible.
• Developing integrated and more sustainable communities
and better quality for life for all citizens
Social Supports and Housing for
People with an Intellectual Disability
• Maximising individual capacity and potential
through provision for supported decision-making
• Independent living choices and options across the
life-cycle
• Meaningful participation in exploring housing
options
• Individually-tailored support services
• Information and advocacy support
• Participation in cultural life
• Community/neighbourhood integration
Social Supports and Housing for
People with an Intellectual Disability
•
•
•
•
•
•
•
Help with setting up a home
Developing home management skills
Emotional support and guidance
Developing personal safety and security
Being included in the community
Establishment of support networks
Connection with various community resources –
recreational, training, education
• Resettlement support (help to move on)
Housing-related social supports
• Housing related supports are broadly interpreted to
include:
–
–
–
–
–
–
–
Assisted living services
Social work services
Other on-site/in-house assistance
Help with day-to-day living tasks
Information, information and information
Advice in areas such as paying rent and other bills
Helping people to build relations with neighbours
Other (non-housing) Social Supports
• Non-housing supports are an integral part of
integrated and holistic housing support and
need to be included
– Adequate income support
– Access to quality health services
– Accessible transport
Social Supports and a Person
Centred Approach
• The Health Information and Quality Authority
(HIQA) defines person-centredness as
… ‘seeking to put the person first’. A personcentred service is one which is provided,
organised and designed around what is important
to the service users from his/her own perspective.
Person Centred Services direct effective supports
to facilitate these individual choices.
Concept of ‘Floating Supports’
•
Floating support is an arrangement whereby individuals have/are provided
with permanent accommodation and have an agreed level of support to help
them adapt to independent living.
•
The level of support varies according to individual need and can be withdrawn
when no longer required and passed on to another person who may require it.
•
There are numerous models available with key features identified as:
– Flexibility
– Cost-effective
– Promoting social cohesion
(See Civis Consulting 2008 Report)
KeyRing Networks
• KeyRing Networks enable people with learning disabilities to live
independently in their own tenancies.
• KeyRing has successfully pioneered networks, each of which support
nine people who live within walking distance of their communityliving worker and of each other.
• This approach provides multiple layers of support, which are flexible
and responsive to individuals.
• A key element is mutual support:
• People are encouraged to support each other by recognising what each
person can offer, with the long-term aim of becoming more self-reliant.
Source: Good Practice Briefing Issue: Housing and Services for People with
Support Needs, Chartered Institute of Housing,
The KeyRing Concept: Some Irish
Initiatives
• Brothers of Charity
• Other
Housing and Social Supports:
Service Delivery System in Ireland
• A mix of public, voluntary and private sector providers
• A myriad of agencies, associations, support groups and institutions
• A complex system of provision which presents major challenges for
integrated housing and social supports
• Some duplication of service provision.
• Some positive partnerships
• A relatively low focus on performance criteria and targets
(OECD Report on the Irish Public Service (Ireland: Towards an Integrated
Public Service, 2008) .
Integrated Housing and Social
Supports
• For service users, disjointed delivery of services
can result in confusion and missed opportunities.
• A bewildering fragmentation when viewed from
the ‘bottom-up’
• People, irrespective of their individual housing
support needs want seamless service provision
Inter-agency Collaboration
• Strong inter-agency collaboration is
required to ensure quality and seamless
service delivery:
–
–
–
–
–
A holistic focus on the user
Needs-based provision
Cross-departmental protocols
User participation in planning and delivery
Timely responsiveness to changing needs
Integrated Case Management
• Case managers (key workers or advocates) working with
or on behalf of the individual citizen can:
• Assist people with different needs to access different
services as appropriate in accordance with requirements
• Assist a person with an intellectual disability to secure
appropriate housing
• Ensure that services are in place for residency sustainment
and necessary life skills training along a continuum of
decreasing contact as appropriate
• Facilitate key transitions and attitudinal change where
required.
Questions for Consideration
• Implications for developing social supports in a truly
mainstreaming approach to housing provision for people with an
intellectual disability?
• What is the balance between informal support networks (family,
neighbourhood, local community) and formal networks?
• Who assesses deficits at each level and identifies and implements
appropriate responses?
• Respective responsibilities of the individual, the State, the family,
the neighbourhood/community?
Questions for Consideration
• What are ‘reasonable’ State resources for
housing and related social supports taking into
account rights, equality, social solidarity,
citizenship as well as budgetary factors?
• What are the challenges for inter-agency
collaboration?
• Will the wide introduction of self-directed
payments in Ireland make a difference?