Connections, networks and supported decision making – next steps for independent living

By Neil Crowther

Introduction

Next week I’m taking part in two meetings concerning the future of independent living.  The first is at the European Union Agency for Fundamental Rights (FRA) who are developing a ‘typology’ of institutions and also indicators to measure progress on the implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities.  The second is the Housing and Support Alliance Conference in Manchester where I’ll sit on a panel debating next steps for independent living.  I’m still forming in my head what I want to say at each of these meetings and so am writing this post to invite discussion and debate.

Back to first principles

I think we urgently need to re-engage with first principles, and Article 19 of the UNCRPD – living independently and being included in the community – is a good place to start.  What are the principles that Article 19 embodies?

  • Liberty Article 14 CRPD deals with this specifically, but Article 19 ensures that it amounts to more than a ‘negative right.’ The recent statement by the CRPD Committee makes clear that persons must not be detained on grounds of their actual or perceived disability or on presumptions regarding a persons danger to themselves or to others, which requires the development of practical alternatives to institutionalisation
  • Self-determination, in the context of a persons living arrangements – the right to choose where and with who to live and to not be obliged to live in a particular living arrangement,  This suggests both legal rights and means of challenge/redress, mechanisms via which to exert choice and control such as personalisation/individual budgets, and support with decision making, building on Article 12 CRPD (equal recognition before the law) compliance with which is an essential foundation to compliance with Article 19.
  • Inclusion, defined in opposition to both segregation and isolation.  This is important in that it challenges the idea that a person may overcome isolation through involuntary placement with others in segregated/congregate living arrangements, but also because it challenges the idea that it is sufficient simply by dent of not living in segregated arrangements to enjoy inclusion.
  • Participation – it’s not enough to ‘be in the world’ – people need to actively take part, hence Article 19 underpins many of the other Articles in the Convention related to e.g. education, political participation, employment, leisure, as well as exerting control over one’s day to day life at home
  • Duties of progressive realisation – it might be assumed that Article 19 (b) embodies economic and social rights (the development of living and support options) indicating that the right to independent living is not of immediate application but that it should be realised by States over time, yet the CRPD Committee’s General Comment on Article 12 throws this into some degree of uncertainty – see my blog on the matter http://makingrightsmakesense.wordpress.com/2014/08/11/the-right-to-independent-living-progressive-realisation-or-positive-obligations/
  • Equality of access – Article 19 (b) embodies established human rights standards emanating from the International Bill of Rights, but CRPD inserts into them to the duty to provide reasonable accommodation plus Article 9 requires States to take steps to promote accessibility, including of information and communication.

Inclusion is not inclusion without self determination

So what might these principles mean in terms of current challenges, developments and next steps for independent living?

I think the most crucial issue – and one which on a number of fronts risks being neglected – is that inclusion is not inclusion without self-determination.  The following statement by self advocacy organisations in the USA (Keeping the Promise – Self-Advocates Defining the Meaning of Community) explains this point well:  

Institutions are defined as those that—

  • Include only people with disabilities.
  • Include more than three people who have not chosen to live together.
  • Do not permit people to lock their bedroom or bathroom doors.
  • Enforce regimented meal and sleep times.
  • Limit visitors, including who may visit and when they may do so.
  • Restrict when an individual may enter or exit the home.
  • Restrict people’s religious practices or beliefs.
  • Limit a person’s ability to select or remove support staff
  • Restrict people’s sexual preferences or activity
  • Require people to move if they want to make changes in the personnel providing their support or the nature of their support
  • Restrict access to the telephone or the Internet
  • Restrict access to broader community life and activities.

Community settings are defined in the report as having, at a minimum, the following characteristics:

  • If people share a living arrangement, they have chosen to do so and chosen the people they will live with.
  • Residents have lockable access to and egress from their own living area.
  • Access to the greater community is easily facilitated on the basis of the person’s preferences.
  • People have the right to hire and fire their own staff.
  • People may choose what, when, and where they eat, drink, and engage in social activities.
  • People have access to affordable, accessible transportation to participate in the broader community, including attendance at places of worship, volunteerism, social and civic engagement, and natural support networks.’

Hence, simply living outside the walls of an institution is not itself de-institutionalisation, and certainly not living independently and being included in the community.   People living with family, living in ‘supported living arrangements’ or in their own homes can lead lives that are completely governed by others or in which they lack the knowledge, information or confidence to take decisions.

The pioneers of independent living asserted that independence was not contingent on the physical capacity to carry out tasks, but to be in control of tasks performed on one’s behalf, replacing notions of ‘care’ with those of ‘personal assistance’.  But that movement accepted the idea that rationality was key to decision-making and in doing so arguably failed to ensure that the principle of independent living and some of its most significant developments such as direct payments benefited all disabled people equally, especially those with mental health problems, learning disabilities, autism or dementia.  So we must now assert that the right to make decisions is not contingent on mental capacity, but is a human right, and replace the notion of substitute decision making with that of supported decision making.  In doing so we need to replace the present deficit model approach to mental capacity with one which positively seeks to expand the scope for people to make decisions about their own lives.  There are some fantastic examples of how that might be done on this new website from Inclusion Europe.

Self-determination derives from genuine inclusion

Just as there can be no real inclusion without self-determination, so self-determination rests upon inclusion.   Autonomy is not about our isolation.  Our capacity to exert control over our own lives derives from our inter-connectedness, from the quality of our relationships, from our access to knowledge, information and experience.  Yet too often when we say the word inclusion we simply refer to a person being somewhere (with or without statutory support), when we should be focusing on a person belonging somewhere, on their networks, relationships and connections. It is these relationships and connections that provide the ‘scaffolding of the self’ – the ability we each have to forge an identity, to develop and exert our will and preferences and for those to be recognised and respected by others.  That – alongside more formal interventions – is what is meant by ‘supported decision making.’

So the challenge is to identify and harness routes to inclusion – to support people to make connections, develop and contribute to networks, to establish relationships.  This means looking beyond ‘social care’ – an idea always fundamentally at odds with independent living yet which continues to dominate thinking and practice – towards something amounting to the promotion of genuine social inclusion, whereby people are supported to participate in common domains of associational life – neighbourhoods, education, employment, political organisations, community organisations, religious institutions, sport, leisure and recreation and so on (about which equal of access is fundamental) – not only as ends, but as means to the end of both inclusion and self-authored lives.

Conclusion

So in summary, self-determination begets inclusion and inclusion begets self-determination.  The interrelated objectives of advancing supported decision making and building social connectedness should, in my view, guide any future approach to implementing the right to live independently and to be included in the community.  I have tried to capture this idea in diagrammatic form previously here.

At the same time we need to be very wary of anything professing to advance inclusion, or self-determination, that fails to be grounded in both principles.  And we also – critically and fundamentally – need a genuine commitment and action by all those advocating the rights of disabled people to practice what they preach and ensure that disabled people are fully involved in all debates and decisions regarding their own lives, not as an afterthought but from the get go.

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7 thoughts on “Connections, networks and supported decision making – next steps for independent living

  1. This is fantastic. I will be sharing it with my staff and board and circulating elsewhere. Three years ago our organization updated our vision mission and values which are closely linked to the UNCRPD and Article 19. We believe in this and attempt to live it through assets-based person-centred thinking and implementation. We have no site-based programs or group living. This should of course be the default. But it is not the case. This is considered “innovative” and that word is becoming synonymous with “that’s fine for you but don’t expect it to become the norm.” There is a depressing interplay of systems inertia and family desperation that is actually driving an INCREASE in segregated institutional solutions. I am all for graceful transitions but increasingly I see that unless segregated options are taken off the menu as human rights violations, they will continue to prosper and proliferate.

  2. Thanks Keenan – I agree. I think though that we have to understand how to make the transition successfully, not just in terms of the matter of creating the conditions for inclusion, but in terms of the many fiscal barriers that appear to exist in relation to switching funding from one model to another (and avoiding that becoming an opportunity for disinvestment). Best wishes, Neil

  3. Thanks Neil. I think the barriers that tend to get identified do need to be addressed but they also are not an excuse for continuing to cause harm. That individuals currently in their late teens are being groomed for continued streaming into group homes and day programs and sheltered workshops is simply unacceptable and I am at a loss of how to address this issue without taking the seemingly necessary step of simply making the segregated institutional options unavailable and forcing changes that have already been made successfully by many agencies in many jurisdictions (including large jurisdictions like the entire State of Maine. We’ve known most of this since the 1970s and it’s rather deflating to attend meetings in 2014 and still be hearing “I dunno, that’s going to be difficult…”

  4. Indeed it is. What we must do is draw together the evidence of it having been done and done successfully and use this to hold the laggards to account. You might like to read Chris Hatton’s blog on the question of making segregated options unavailable (Chris is an academic over here) http://chrishatton.blogspot.co.uk/2014_06_01_archive.html. I also proposed the same in a post on my own blogsite: http://makingrightsmakesense.wordpress.com/2013/12/28/appalled-by-segregation-then-in-2014-support-disabled-peoples-right-to-be-in-the-world/

    • I’ve made public comments very similar to the Making Right article on many occassions. I have little doubt that the crux of the problem is not in reality the barriers that typically get presented. The real barrier is second class citizenship and a disbelief in the value of people with intellectual disabilities.

  5. Pingback: The difference between institutionalisation and independent living is the difference between abusing human rights and respecting them. | Making rights make sense

  6. Pingback: Home is the scaffolding of the self | Authors of our lives

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