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 self-

esteem 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 person-centred 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 community-living 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?