About independent supported living
Independent supported living refers to a range of housing approaches for people with disabilities that differ from traditional, group residential settings. Independent supported living means that supports are designed around each individual, and choice and control rests with the person. All people can live an independent, supported life if the right supports are in place. Independent does not mean living by yourself.
What does the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) say about independent and community living?
Article 19 of the UNCRPD speaks about living independently and being included in the community. The recent draft comment by the CRPD Committee stated clearly that independent and community living refer to life settings outside of institutions (this was emphasised by the report). You can read the full report at this link CRPD Committee Draft Comment on Article 19 (independent & community living)
The Committee extends this to large or smaller group homes. The Committee pointed out that neither large scale institutions, with more than a hundred residents, nor smaller group homes, with five to eight individuals, can be called independent living or community living arrangements if they possess the characteristics of an institution and that defining elements of an institution are:
- isolation and segregation from community life,
- lack of control over day-to-day decisions,
- lack of choice over whom to live with,
- rigidity of routine irrespective of personal will and preferences,
- identical activities in the same place for a group of persons under a certain authority,
- a paternalistic approach in service provision,
- supervision of living arrangements and
- usually also a disproportionate number of persons with disabilities living in the same environment.
Institutional settings may offer persons with disabilities a certain degree of choice and control, however, these choices are limited to specific areas of life and do not change the segregating character of institutions. This webpage has comprehensive information about individualised supported living that includes the Government's new Personalised Budgets Task Force, our submission to the Department of Health and our Tools for Independent Living seminar in Dublin.
Who can live in the community?
Independent and community living is for everyone regardless of disability, need or other characteristics such as gender or ethnicity. The UNCRPD clearly states this.
The Committee expressed concern at the presumption that persons with high support requirements are unable to live independently and be included in the community. The Committee was also concerned that persons with intellectual impairments are often assessed as being unable to live outside of institutionalised settings saying "such reasoning opposes Article 19 of the Convention which extends the right to live independently and be included in the community to all persons with disabilities, regardless of their level of intellectual capacity, self-functioning or support requirement".
The right supports are key to living independently in the community. Inclusion Ireland has campaigned for the de-congregation of people with intellectual disabilities and for the introduction of personal budgets. There is more information at the links below.
What has happened in other countries in relation to independent and community living
The process of deinstitutionalisation in the United Kingdom (UK), British Columbia - Canada (BC), Australia, Sweden and the United States of America (USA) teaches valuable lessons to other countries that are at the beginning stages of the process. The objective of any strategy of deinstitutionalisation should be to ensure that there are mechanisms in place which allow for meaningful employment, accessibility, education and training and other supports which allow people with intellectual disabilities to live full and inclusive lives.
The process of deinstitutionalisation in the UK, British Columbia, Australia, Sweden and USA was firmly under way by the 1980’s. The number of large institutions in the UK have been dramatically reduced in the past 3 decades, although some still exist. There are a small number of large institutions remaining in Australia and the government has committed to closing these as the National Disability Insurance Scheme continues to roll out over the next year. Progress in the USA has varied, state by state - 14 states have now closed all institutions while others have resisted closing any. Sweden and BC have closed all of their large institutions (some still remain in other Canadian provinces).
Personal budgets and independent living
Personal budgets are one mechanism that can support people to live individualised, supported lives in the community. You can read Inclusion Ireland's submission to the Personal Budgets Taskforce at this link. Submission to Department of Health on Personal Budgets Taskforce
Resources and Research
There is a multitude of research in the area of community and independent living and the policy in an Irish context is Time to Move on from Congregated Settings (2011). This is just some of the research that Inclusion Ireland utilises;
Time to Move on From Congregated Settings - a strategy for Community Inclusion: sets out what is now the agreed national policy for a new model for residential support in the mainstream community, where people with disabilities are supported to live ordinary lives in ordinary places.These homes should be dispersed and in ordinary communities with access to mainstream community health and social services such as GP services, home help and public health nursing services, and access to primary care teams but also with access to specialised services and hospital services based on an individual assessment. The report sets out learning from other countries' experiences such as every person with a disability can live in the community – there are no exceptions, people with the most severe disabilities make the most gains and the process should begin with people with severe and profound disabilities rather than leaving them until last. You can read the report here Time to Move on From Congregated Settings - a Strategy for Community Inclusion (external link)
Examples of individual supported living for adults with intellectual disability: a qualitative account of four models of support for adults with intellectual disability in individual supported living (ISL) arrangements was carried out by Cocks, Thoresen, O'Brien et al in 2016. The study looked at 50 examples of living alone, co-residency, relationship and host family living and concluded that formal and informal support environment are crucial and reinforcing that ISL is appropriate for people with high support needs.
The Personalised Residential Supports Project. Cocks, E. & Boaden, R. (2009).
The Individualised Supported Living Manual. Cocks, E., Williamson, M., Thoresan, S. (2011).
The Individualised Supported Living Manual is a tool to plan, develop and review individualised supported living arrangements. Its aim is to assist people involved with individual supported living arrangements to identify what is working well and what can be improved. The report talks about the lives of 6 different individuals and how community living works for them.
Moving ahead: from congregated to community living. Linehan, C., O’Doherty, S., Tatlow-Golden, M., Craig, S., Kerr, M., Lynch, C., McConkey, R., & Staines, A. (2015)
Looked at the required actions to move ahead with de-congregation. Among the recommendations were;
- More access to independent advocacy for people with intellectual disability and their family members.
- Building partnerships between disability agencies and local community groups, with disability agencies taking a leading role in this collaboration
- A specific strategy is required to address potential loneliness and isolation of people from congregated settings who move to the community.
- Significant investment is needed to ensure staff are trained in highly personalised support strategies such as ‘active support’.
- Consideration is required for those who have high support needs, such as those who are elderly or who have significant health needs.
- The importance of people moving to the community having trust in the process, have appropriately planned moves, and have received clear and appropriate communication.
European Network on Independent Living (ENIL). Independent Living Myth buster (2009).
The European Network on Independent Living (ENIL) decided to publish this Myth Buster, in order to raise awareness about independent living and how it can be made a reality for all disabled people. The Myth Buster on Independent Living was based on lived experience and deals with some of the most common misconceptions about disabled people, independent living and personal assistance
Good Lives: Research on Self-Directed Lives, Perspectives of People with Disabilities and Families. Flynn, E., Angus, J. Cassen, R. (2015).
This research looks at 'self-directed living' which it defines as "people living good lives, ordinary lives, in ordinary places, as opposed to ‘special’ lives in separate, segregated places." The research is conducted through individual stories about how self-directed living can happen, at a variety of ages, from young children to school leavers and adults.