Congregation & Community, Positions & Interests

In South Australia there has been media attention on the living conditions at the Strathmont Centre, one of the few remaining 'older-style' congregate support facilities in South Australia (as distinct from 'newer style' congregate support facilities such as community-based group homes).  Following this attention, the SA Government minister for disability, the Social Inclusion Commissioner, and others, visited the venue and confirmed that the venue is severely run-down and anything but homely.  Most recently, the SA government has released an evaluation report that examined the circumstances of the first thirty people to leave the Strathmont campus as part of a project initiated in 2005. Echoing a plethora of similar reports elsewhere over the years, this report identified a number of helpful benefits that emerge when people move away from large congregate care facilities.

When such material becomes public, it presents the opportunity for commentators to give their views, and often these views focus on the matter of 'institution versus community'.  Some commentaries also include assessment of those who hold different views.  For example, I have witnessed assertions on the one hand that the salaried professional advocates, experts and academics don't know what it's really like to be, or to support, someone living with severe disability, and on the other hand that people who believe in the merits of congregate settings are misguided and pushed to that rose-tinted view by an uncaring system that leaves them exhausted, frustrated and desperate.  Such views can often be taken personally and can drive some people to hold on to their particular position come what may.  This may not advance the life chances for people living with disability.

It may help to take a moment to focus on the two main differing points of view in this debate.  These are, (1) that congregate services (institutions big and small, including 'villages' and group homes) are places that will always struggle to offer truly personalised supports and that people should have a life in the community, and (2) the opposite view, that community is not working for many, who are unsupported, isolated and lonely, and that well-run congregate services can give those people belonging and fellowship.

Even with the advent of the United Nations Convention on the Rights of Persons with Disabilities, this division of view has remained.  Supporters of community emphasise the UN assertion of inclusion, on the basis that presence and participation within the wider community will bring people into richer lives.  Supporters of congregate services emphasise the UN assertion of choice, on the perception this includes the right to choose to live with others in a congregate setting.

The focus of the debate is about where people live and the support they receive there.  The aversion to congregate services comes from a concern that such places remove people from community and render them more vulnerable to reduced choice, making it harder to connect into ordinary relationships with other citizens in the community, and increasing the risk of neglect and abuse.  There have been many reports that have uncovered such problems, often through highly troubling accounts of people's experiences.

In contrast, the aversion to community services comes from a concern that 'idealists' want to place people into communities that don't want them or otherwise don't adequately support them, which leaves people in lonely, isolated and unsupported settings, making it harder to connect with other people living with disability, and leaving their families to pick up the pieces.  I am again aware of the stories about when community supports have not been thought through properly for a particular person.

For me, the bottom line is this: if we want to see people living with disability move into a rich, valued life, then we are failing many people regardless of their service setting because people are not getting properly designed, personalised, responsive services.  It may help, therefore, to avoid the tendency to argue a particular position about service setting, and instead look at the underlying interests, because therein lies the possibility of a meeting of minds and hearts. 

For example, I can easily imagine that wherever people place themselves in the debate, there will likely be agreement about what we don't want for people living with disability. May I suggest the following: we don't want people to be diminished, neglected, abused, lonely, or their life potential wasted.  Hopefully you agree.  If we can agree we don't want such things to happen, then we are likely to agree that this must be reflected in a person's support arrangements.

Following on from this, we might, as concerned fellow human beings, find agreement on what do want for any particular person living with disability. For example, some of the things we might find it easier to agree on are that the person is happy, is welcomed by our community, that the person has and makes genuine choices, that the person keeps learning and growing throughout their life, that the person is loved for who they are, that the person is inherently valued by their neighbourhood and community as a human being.  Hopefully you agree. 

For all of these, there will be people who say they can reliably be delivered in community settings, and there will be people who say they can reliably be delivered in congregate settings. So how might we assess this?

Well, let's look again to the United Nations.  The Convention on the Rights of Persons with Disabilities is an attempt to codify such interests, to formalise the expectation that every person living with disability gets a fair go at a decent life.  Naturally this includes choosing where to live, and who to live with, but it includes so much more, setting out clear expectations about people's active roles in community life, and of belonging in society. 

An additional problem with congregate services, however intense the efforts might be to genuinely personalise the supports therein, is that their nature creates stigma, where the wider community, the other folk in the neighbourhood, view the service as 'special', as something 'other' than an ordinary household, and conclude they themselves have no significant role to play as neighbours, acquaintances, friends, that their involvement is not needed because the occupants are being cared for.  Some local people might get involved but this is often in a more formal way, as a 'volunteer', with a role description and a reporting relationship.  This is not the same thing as being a welcoming neighbour and fellow citizen.

Perhaps the biggest issue that leads people to want congregate supports for their loved one might be their belief that the wider community is not interested in the lives of people living with severe disability, that it doesn't care, and that true inclusion is pie-in-the-sky. In which case, the congregate service is viewed as a safe harbour, a sanctuary from an uncaring world, a refuge from fighting a battle can never be won.

I understand how it is that some people can arrive at this view, but there is a deep irony here, because any lack of interest or welcome from the wider community has in no small part been created by the fact that many people living with significant disability have received services that have taken them away from ordinary community life.  And each time we set up a new 'village' or group home we are reinforcing this.

I refuse to believe this is how it has to be.  Communities are founded on, and sustained by, a sense of mutuality, of fellowship, of interdependence, of belonging. We all have inherent value as human beings, which means we all have a place in our community, by our presence and by our participation.  If we believe that people living with disability have inherent value as human beings (and to not believe this would be to see people living with disability as something less than human), then we need to find ways to make sure each and every person is welcomed and included in the life of our communities. 

There is therefore an urgent need for a stronger way of understanding and measuring the essence of choice and the essence of inclusion, so that people's support arrangements can be properly held accountable, and replaced if they are failing people.

However, achieving this means a level of activity that is far beyond the consideration of where someone lives.  This predominant consideration sells people short, either by separating them into congregate service settings that cocoon people in a dubious artificial world that is ultimately wasteful of that person's life and their inherent value, or by placing people into community accommodation and wrongly assuming that such a move by itself will take people into a richer life.

The answer lies in the proper attention to personalised supports, in the context of an ordinary valued life, and in creating the circumstances where the person has a growing personal network of people who give their time freely, not as 'volunteers' but as friends, acquaintances, associates, fellow citizens with an authentic regard for the person. This is not pie-in-the-sky, regardless of the degree of disability a person lives with.  I've seen it.

After 25 years of working in human services in a number of countries, and witnessing the experiences of people living with disability who are dear to me, I am absolutely convinced that good, authentic personalised supports are much more likely to take people into a rich, valued life than less-personalised congregate supports. 

If we want the best for people living with disability, then we must strive for authentic personalised supports, anchored on people's inherent value as human beings and a vision of an ordinary valued life.  We have to sharpen our imagination and redouble our efforts so that our communities uncover and uphold this inherent value.  Otherwise, it will remain the case that many families are left to cope without adequate supports, and that many people living with disability remain in a world of institutional thinking and at risk of being treated in ways that suggest anything but 'support' or 'service'.

2010 Election Promises Part 3

On 29 July the Australian Labor Party announced $60m capital funding to create up to 150 additional accommodation or respite places for people living with disability, signalling this was a modest increase on current arrangements.  Click here for the announcement.

If the policy is implemented by the next government, community organisations can apply directly to the Commonwealth government for capital grant funding, so long as they can demonstrate they have attracted funding from elsewhere to meet the costs of the ongoing support needs of the people living in the housing.  The ALP’s emphasis is on “innovative, community-led projects”.

Given that there is nothing innovative about groups of people living with disability being coerced to live together in group homes, which tends to happen  because of general restrictions on the amount of funds available for personal support, and/or because of a lack of imagination, the optimist in me is hoping that the ALP has something different in mind when talking about ‘innovative’, and 'community-led'.

Meanwhile, the next day, 30 July, the Liberal Party finally broke its silence on disability issues (unless I’ve missed something in the media – do tell me)  and announced what it would do as government to assist students living with disability.  Click here for the announcement.

In pointing out that many students living with disability have limited choices about which school to attend, and that any funding support is directed at schools not the student, the Liberal Party’s proposals include an initiative called an Education Card, worth up to $20,000 and fully portable.  The Card would mean that the student and her/his family would presumably be able to exercise greater choice about which school to go to, because the family and student have genuine purchasing power by virtue of the value of the Education Card.   

I imagine this might make it more likely that the student could choose their local school, or the school that most of their local friends are attending, or the school that excels in a particular area of study/activity that the student is interested in. In other words, the student would get the same choices as her/his non-disabled peers.  In which case, it seems the Education Card, depending on how the scheme is designed and implemented, could carry some of the features of Individualised Funding (refer to previous postings on this blogsite).  If so, this would be a very encouraging development for people living with disability and their families interested in having more say about what they can access.  It is a further example of how the ideas within Individualised Funding can help create a climate where truly personalised solutions might emerge.

I remind myself that, as always, a good idea is at its most vulnerable when it’s being implemented, so we will have to wait and see if and how such an initiative is designed and implemented.  However, at first glance it offers promise for young people like the student I remember at a local primary school who enjoyed a typical primary school education experience in a welcoming school alongside other local kids.  But when it came to the move from primary to secondary education, he somehow got placed at a 'special' school just for students living with disability, two bus rides away. I doubt such an arrangement will be helpful to him in maintaining connection with his friends from primary school, or in developing new acquaintanceships in his local community.

I don’t doubt that he may enter valued friendships at the ‘special’ school.  But why should we assume that a person living with disability can only enjoy friendship and fellowship with other people living with disability.  My concern is that the shift to a special secondary school is making it more likely that this student is being set up for an adulthood of separateness, destined to learn, live and work alongside only other people living with disability.

With portable support funding in place, it’s just possible that this student could have chosen his local neighbourhood high school or another welcoming mainstream school.  In such circumstances he might perhaps have had a better chance of maintaining and further developing his fellowship with his local friends from primary school, make new acquaintanceships with students from a variety of backgrounds, and perhaps have had a better chance of emerging into a richer seam of opportunities as an adult, from a childhood characterised by inclusion, not by the badge of ‘special’.

2010 Election Promises Part 1

Public policy conversations about disability are many and varied at the moment, and perhaps like me, you are finding it a challenge to keep up.  The Productivity Commission is continuing its work regarding the future arrangements for disability support, and hopefully you have had a chance to make your views known.  Meanwhile the Labor government recently released its draft National Disability Strategy so there is a fair bit to digest there.  The government is working on its draft report to the United Nations regarding Australia’s progress against the Convention on the Rights of Disabled Persons (another opportunity to make your views known), and in South Australia the Social Inclusion Board has released a discussion paper regarding the future of local disability support (and another opportunity to make your views known).

I will blog some thoughts on the above as soon as I can, but right now, in case you haven’t noticed, the country is in election mode, so I want to explore some of the announcements by the major parties, because at least some of them were easy to miss in the media.  I found a bunch for the Australian Labor Party but so far only 1 from the Liberal Party of Australia.  Let me know if you know of any others that I don't cover in this and the next blog.

On 17 July Labor announced an initiative involving the major cinema chains delivering more accessible cinema experiences to people living with disability.  Click here for the announcement, which is at the FaHCSIA website so i guess it counts as “already going to happen” as opposed to “this is what we’ll do if we get in”. 

It includes up to $470,000 over four years to the four major cinema chains to build technical capacity,  fast tracking audio description and captioning, together with support for the Accessible Cinemas Advisory Group, which includes a number of disability voices.

This initiative is good news, especially for people like my Mum who is blind, and for whom the prospect of an audio description services that mean she can go out to the movies with the rest of us.

On the 24 July, Labor announced some measures to support people living with disability into community life.  Click here for the announcement.  These measures included: a $5m pool to match local money (up to $100,000 per grant) so that local councils can improve public amenities such as restrooms, town halls etc, and $1m for improving access to public library materials by people with particular types of disability.   

These seem useful and sensible in terms of building accessibility of our communities.  The question of course is whether the funding is enough.  I like the expectation that local councils need to match the funding as this helps lock in local commitment.  I hope that the grant information going to local councils also includes clear signals of local councils’ obligations under the UN Convention, among other things.  Otherwise, the need to find local matched funds might put some local councils off if they are not sufficiently aware of the imperative for good access.

Now might be a good time to write to your local council to nominate the access improvement you would most like to see in your local community.

In the same breath, Labor announced a $3m leadership program for people living with disability, including access to mentors.  Again, on the face of it I like this idea.  The main considerations for me are (a) whether this program will genuinely deliver increased leadership capacity because that’s why the participants are there, and (b) whether it will be matched by government effort  to ensure it is playing its part in creating formal leadership opportunities for people. There are plenty of opportunities coming up within government.  Two obvious examples are the overseeing of the National Disability Strategy implementation, and the governing of any National Disability Insurance Scheme.  Both of these absolutely positively definitely must have people living with disability in leadership roles.

Labor also announced $500k for an 'attitudes' disability website.  In principle I like this because information is important.  In terms of the cost, I would be very interested to learn more about how they see the $500,000 being spent, so that it has the best chance of getting the attention of its target audience.  Essentially, this initiative is about raising the capacity of our communities to be welcoming and inclusive of people living with disability.  A well-orchestrated public awareness website can make a contribution to this, but is unlikely by itself to result in a critical mass of change. It needs to happen alongside other elements that help grow community capacity.  Much of this happens 'one person at a time' because if we are all committed to the notion of personalised supports then that also implies a highly personalised journey into community life. In which case, I hope that the incoming government, with whatever political persuasion they claim, make good investment into personalised supports including connecting into community life.

By the way, on 28 July, while opening a new accommodation service in Canberra for young people living with disability, Parliamentary Secretary Bill Shorten said “the benefits of age-appropriate and community-based accommodation and support are beyond question”.  I'm pleased to hear that, because for people to get a life in community they need to be living in it.  Bill Shorten’s comments offer a modicum of reassurance to those of us who are concerned about what happens to people living in institutional accommodation services.  Click here for the announcement.

Next instalment of this blog topic 2010 Election Promises will arrive shortly.