Setting the Scene: Where people live – Is a two-tiered human rights approach needed?

DANA – 4 th National Disability Advocacy Conference Advocating for Inclusion Paul Ramcharan 1 st may 2012

The case I shall make today

I will question whether institutionalisation and living independently are two sides of the same coin.

Institutionalisation Living Independently and being included in the community I will then argue that what is required is a two-tiered approach: a) A need to get closure of the

known

old institutions and challenge to

recognisably new

institutional forms b) A way to assess and monitor new settings in terms of characteristics of institutionalisation or institutionalised practices and support RMIT University©2008 Information Technology Services 2

A really important document:

Hammarberg, M. (2012

) The Right of People with Disabilities to Live Independently and be Included in the Community

, Issue Paper (2012)3. Strasbourg: Commissioner for Human Rights, March 13 th It is important because he says that Article 19 of the CRPD,

the right to full inclusion and participation in society

• Its three key elements are: choice; individualised supports that promote inclusion and prevent isolation; and making services for the general public accessible to people with disabilities. This right is violated when people with disabilities who need some form of support in their everyday lives are required to relinquish living in the community in order to receive that support; when support is provided in a way that takes away people’s control from their own lives; when support is altogether withheld, thus confining a person to the margins of the family or society; or when the burden is placed on people with disabilities to fit into public services and structures rather than these services and structures being designed to accommodate the diversity of the human condition, Hammarberg, March, 2012,p.4) RMIT University©2008 Information Technology Services 3

Two sides of the same coin

Hammarberg is therefore saying there is a need for: 1.

Support, services, residences designed for inclusion (Article 19) – Positive Approach and, 2.

The rejection of deprivation of liberty (Article14), - No institutionalisation – Avoiding negative experiences Furthermore, since human rights are interdependent other article have been mentioned as being important in these respects RMIT University©2008 Information Technology Services 4

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Some Issues

• Whilst the negative and positive approaches are clearly associated I propose there are some troubles in placing them into the same framework for action through disability advocacy campaigns • To demonstrate this I will look at a

selection

of Hammarberg’s 15 recommendations and point to the issues and difficulties.

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Hammarberg Recommendation 1 - Ratify the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol • Australia is a signatory BUT • Is the Australian machinery and commitment as strong as, say, Europe with its European Social Charter, national legislation in many countries, a European Court of Human Rights.?

• Australia has a ‘framework’ for human rights; only two states have human rights acts and these are limited to civil and political rights and do not include economic, social and cultural rights • It is very hard to see, even in states with legislation, the ways in which government departments are organising to respect, protect, promote and fulfil human rights • Claiming rights is dependent upon the weight and volume of noise from civil society organisations. But they are not funded well enough. As Kevin Cocks stated in his response to Bill Shorten at the 2010 DANA conference, there needs to be a new Statutory Authority for national independent advocacy, funding for a peak body and a new formula for funding advocacy. This new funding model also needs to be considered in light of the NDIS.

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Hammarberg Recommendation 6 – Suitable budget for community resources and supports in accordance with principle of progressive realisation

• Problem 1 – Articles 25 – education; 27 - work, 28 - adequate standard of living; 30 Participation in cultural life, recreation, leisure and sport are positive rights (economic, social and cultural rights) and subject to progressive realization over time.

• In some ways these are a product of political will, how wealthy the country is taken to be and how committed the government might be given the spread of demands on its resources.

• It is easy for government to massage reports on progress to include ’more initiatives’ that have been funded, but does this really change people’s lives? This applies not just to government reports but, potentially, to Shadow reports also.

Without measuring systematically how can we tell?

• A danger with pursuing Article 19 in a single campaign with calls for the closure of institutions is that one is clear and achievable, the other only so over time. We cannot wait for institutional closure. It must stop now.

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Hammarberg Recommendation 12 - Enable persons with disabilities to purchase their own supports and access housing in the general housing market

• There are some positive moves around individualised funding and direct payments which may, if operationalised properly, provide more control over how people spend their resources • However people with a disability are generally ‘in a different housing queue’. Some of the previous academic work may have had a hand in this by comparing known institutions with cluster style housing, hostel and group home. Rather less has been done on supported independent living and fully independent housing and support. • As I heard Sylvana Gant from South Australia once say, “How many people do we see from the general population queuing to live in an institution, hostel or group home?” • A huge amount of work is required to establish the framework of rights that place people with a disability in the same queue. But also there are problems with funding and supply in the social housing sector as well.

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However, there was also a warning that the outcomes are not just about buildings

There is variation in performance amongst settings

: • In their review of 46 British studies, Emerson and Hatton (1996) summarise the findings thus

‘…the considerable overlap in the ranges of scores indicates that better large institutions can produce outcomes as good as weaker smaller settings; and that better smaller institutions can achieve outcomes as good as weaker staffed housing’

(Emerson & Hatton, 1996: p.18).

It is therefore vital to start looking at the characteristics that go hand-in hand with institutionalisation across all settings.

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Hammarberg Recommendation 4 - Adopt a no-admissions policy to prevent new placements of persons with disabilities in institutional settings (French calls for immediate closure of all institutions) Problems: • What is an institutional setting and when does it stop being one?

• How do we recognise an institutional setting when we see one?

• Is institutionalisation only about buildings?

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AIHW (1999) Disability Support Services Provided under the Commonwealth/State Disability Agreement. Canberra: AIHW Data collected in 1997

In 1997

Institutional/larg e residences Hostels Group Homes

NSW Vic Qld

2447 1115 532

WA SA

663 1041 289 2447 467 79 2528 1416 229 959 18 593

Tas Act NT Total

167 0 0

5965

128 283 0 211 0 90

1210

8527 RMIT University©2008 Information Technology Services 13

AIHW (2011) Disability Support Services 2009-10: Report on the services provided under the national disability agreement. Canberra: AIHW Data collected 2009-2010

In 2010

Institutional accommodation Group homes

NSW

1700

Vic

357

Qld

849

WA

368

SA

682

Tas

218 -

ACT

-

NT Total

4174 4437 4720 1020 1468 1040 485 231 40 13435 RMIT University©2008 Information Technology Services 14

Is this data useful?

• At first sight it represents a reduction from 7175 to 4174 institutional places over a decade, so seemingly moving in the right direction. • But well after 30 years of blanket recognition of the need for deinstitutionalisation, is this quick enough? In 2010 Bruce Barbour the NSW Ombudsman talked about the abject failure of the 1998 to 2010 plan for closure of the large NSW institutions which left 1600 people still resident • Moreover there are inconsistent definitions of what an institution is between states and territories • There are many examples where new institutions have simply been recategorised and renamed. This is a way of ‘hiding’ people.

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Hiding people

• ‘Elder care’ facilities housing people with a disability some reportedly as young as 30 but usually from around the age of 50 – labels younger people as falling into aged care category – places people into congregate care (as if that is what all older people want) – potential to ignore people may be young and capable of independence and community living – Inappropriate services which are not age-appropriate and not chosen RMIT University©2008 Information Technology Services 16

Hiding people (cont’d)

• Redefines people with higher health or mental health needs as requiring 24 hour support in specialist establishments – Claims the need for constant medical and health support and hence conflates support with accommodation – some evidence that relevant assessments are not undertaken to inform this categorisation – usual regimentation around institutionalised care – less opportunity for community involvement – Not a choice made by the person RMIT University©2008 Information Technology Services 17

Hiding people (cont’d)

• A significant number of people

not

on any disability service register but who live on the margins – in rooming houses, substandard prefabricated accommodation – Not even on the radar – Lives so impoverished but voice simply not heard – Disenfranchised and economically disadvantaged – Many end up in the criminal justice and mental health systems – Maybe not in institutionalised, but institutional type experience RMIT University©2008 Information Technology Services 18

•

Again, previous research has not done any favours.

The research focus on ‘challenging behaviour’ indicates a preoccupation with behavioural approaches to ‘changing the person’ • A connected ‘graduation’ approach – the person had to reach particular levels of behaviour, particular levels of skill before they could graduate to ‘independent living’ or to ‘real jobs’ • This ‘developmental model’ is immediately labelling and fails to accept the person and their rights as being universal and inalienable; indivisible; interdependent and interrelated • Research found social skills increased in smaller settings but levelled off after a time. This finding is important – people were able to do more in smaller residences (cooking, cleaning and so forth) but once these had been accomplished the

opportunity structure

was not there to support further development • The data on choice and community involvement has been cursory and badly operationalised as an ‘add-on’ to the main areas of behaviour and social skills A new research brief is needed around both housing on the one hand and support for inclusion, on the other that id human rights based and not behaviourally based RMIT University©2008 Information Technology Services 19

Support and housing both have to be high standard

• It is therefore vital to separate system of support from choice of residential option (Taylor, 2001; Disability Advisory Council, 2004; Bleasedale, 2006) • Again, this implies a focus on closing known institutions (a residential option with

known

faults) needs to be

separate from

establishing good systems of support across all community residences (a support and opportunity structure issue) whilst ensuring separately that they do

not

show characteristics of institutions.

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Hammarberg Recommendation 14 - ensure monitoring of the human rights of residents of institutions until phased out, and of the human rights of people using community support services

• We need new monitoring and research based in human rights and not in behavioural and graduation models.

• It should be human rights based. • Given the interdependence of rights it is vital to seek to examine these relationships in the model.

• Below, just one potential structure for monitoring and research is examined.

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Characteristics of Institutions for Monitoring

Few if any inclusive opportunity structures and experiences Uniformed, regimented, no wealth, no community contact or opportunity for it Freedom of movement curtailed Abuse, violence, exploited and not paid for work Lived in fear By common standards privacy severely restricted No avenues for complaint, reticent to complain, acquiescent, ignored

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Menial, unpaid or nothing, exploited, little meaningful training Seldom encouraged, seldom experienced

22

READ ALL ASSESSMENTS OF RIGHTS AGAINST CRPD PRINCIPLES:

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Further requirements

• A personalised human rights resource for each person based upon non negotiables, preferences and reclaiming a positive identity • ALL work geared towards and measured by hopes, dreams, aspirations identified in the person centred plan • A new approach to dignity of risk, to building trusting support and building hope and resilience • A new model of choice which incorporates mundane, lifestyle and pervasive choices and which starts with the concept of origination.

• An assessment of broad level organisational culture of human rights such as the Dignity in Care Checklist (SCIE, 2003) Source:- Ramcharan, P (forthcoming) Roadmap for the Reduction of Restrictive Practices in Victoria. Melbourne: DHS.

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The model allows...

• Judging institutionalisation in any residential option based on a human rights model: Institutionalisation ‘Freedom’ housing • Establishing whether the

opportunity structure

exists for inclusive community services • Establishing where there are characteristics of the service, support or accommodation which are unlikely to produce freedom to choose and freedom to experience life to its fullest RMIT University©2008 Information Technology Services 25

Apology to the Forgotten Australians with a disability

International Day of People with Disability

(

December 3) 2015

We come together today to deal with an ugly chapter in our nation's history. And we come together today to offer our nation's apology. To say to you, the Forgotten Australians with a disability that we are sorry.

Sorry - that as children and adults you were taken from your families and placed in institutions where so often you were abused.

Sorry - for the physical suffering , the emotional starvation and the cold absence of love, of tenderness, of care .

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Sorry - for the tragedy, the absolute tragedy, of childhoods and adulthoods lost,- lives spent instead in austere and authoritarian places , where names were replaced by numbers , spontaneous play and work by regimented routine , the joy of learning by the repetitive drudgery of menial work .

Sorry - for all these injustices to you, as human beings, who were placed in our care.

As a nation, we must now reflect on those who did not receive proper care .

We look back with shame that so many of you were left cold, hungry and alone and with nowhere to hide and with nobody, absolutely nobody, to whom to turn .

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We look back with shame that many who were entrusted to institutions, were abused physically, humiliated cruelly, violated sexually.

And we look back with shame at how those with power were allowed to abuse those who had none . And how then, as if this was not injury enough, you were left ill-prepared for life outside - left to fend for yourselves; often unable to read or write; to struggle alone with no friends and no family . For these failures to offer proper care to the powerless, the voiceless and the most vulnerable, we say sorry.

We reflect too today on the families who were ripped apart simply because they had a child with a disability for whom no community services were available . Again, we say sorry for the families you never really knew.

To those of you who were brought to institutions without your consent , we acknowledge the pain this has caused for a lifetime . We acknowledge today that the laws of our nation failed you .

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And let us also resolve this day that this national apology becomes a turning point in our nation's story. A turning point for shattered lives. A turning point for governments at all levels and of every political hue and colour to do all in our power to never let this happen again. For the protection of all our citizens is the sacred duty of us all .

This is the transcript, adapted only sparingly, of the apology made to the Forgotten Australians and former Child Migrants presented to Parliament on 16

th

November 2009.

Aspects which are human rights-related are shown in

purple

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•

Conclusion

I think it is vital to close known institutions and recognisably new institutional forms into touch immediately.

• There are real questions why an apology extended quite rightly to some people in Australia can be made when institutions of the very sort being apologised about continue to structure the lives of thousands of people in Australia with a disability • New forms of monitoring and research that are human rights based can establish the level of institutional practice and, based upon this, the opportunity structure for building inclusive support services.

• There is rather more work to do in meeting those recommendations made by Hammarberg in relation to ‘defining a statutory and enforceable entitlement to support for community inclusion and ensuring that these services and supports do not fall short of the right to live in the community...’ • that begs whole new questions about community inclusion which is yet another story that cannot be told today RMIT University©2008 Information Technology Services 30

Thank you for listening!

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