Targets and Outcomes

As many readers of this blog might know, Individualised Funding has been gaining momentum, among other places, in the United Kingdom.  having had the chance to see the methodology road-tested in a number of areas around the country, the UK Government made a strategic commitment to Personal Budgets and there is an expectation all local authorities in England transform their social services arrangements so people have the option of a Personal  Budget.

A target was set, that 30% of eligible adults be in receipt of a Personal Budget by the end of March this year.

An Association of Directors of Adult Social Services (ADASS) report published last month by UK-based Think Local Act Personal Partnership shows this target has been reached, with nearly 340,000 adults accessing a personalised budget.  This represents more than one third of all eligible adults, with the highest number of personalised budgets going to older people.

No doubt spurred on by this momentum (which included the figures doubling in the last 12 months), a new target has been set, where 100% of eligible adults have access to a personalised budgets by 2013.


Also at the end of last month, UK Charity In Control Partnerships and Lancaster University completed their report on the experiences of 2000 people using a Personalised Budget. The survey found that personal budgets had an overall positive effect on people's lives, notably in terms of being supported with dignity and respect, staying as independent as they want to be, being in control of their support, and getting that support when they need it.  Similarly, family members reported benefits in terms of more support, better life quality, and increased well-being.

What is also clear from the report is that people's experiences varied depending on the approaches that local government took in their area.  For example,the degree of positive impact was affected by the following:

• the extent that people knew exactly how much their personal budget was
• the extent that people knew how the personal budget was managed on their behalf
• the extent that people felt their personal views were reflected in their support plan
• the ease of access to information
• understanding the degree of flexibility possible
• the extent of government support to assist the person through the self-direction process

What we can take from this is that a personal budget can make a difference, but that this is not guaranteed.  Two issues come to mind.  The first issue is that local authorities vary in their approach, depending on whether they think their glass is half-full (as in, "look at the possibilities for assisting people to have really personalised supports") or half-empty (as in "how do we make sure the money doesn't get stuffed up").  from where I sit, it looks like you have a better chance of budget flexibility and greater informed choice, and therefore better outcomes, if your local government is really engaged by the possibilities of a personalisation methodology.

The second issue is one of scale. The earlier work in the UK on personal budgets was conducted on a relatively small scale, in terms of the number of people involved.  Now that national targets have been crafted, there is a sense of haste to get a large number of people onto personalised budgets; just in the last 12 months, 170,000 people were signed up to a personal budget. That's a stampede, and one that is set to continue for another two years.  Under such circumstances, the challenge is to maintain an authentic personalised approach, otherwise it just becomes a numbers game where people are rushed through a series of pseudo-choices so that a package can be signed off and a box ticked.  And that's how a really important idea can be stuffed up.

I again quote Wilagan's Fact:

"A good idea is at its most vulnerable during implementation".

So let's make sure the targets we set don't obscure our view of the true outcomes.  The target that everyone has access to a personal budget can be a potent building block for personalisation.  However it is not the outcome in and of itself.  The outcome is more likely to be that each person gets a fair go at an ordinary valued life. In the rush to hit target, we may miss the point of its existence.

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'.

Alliance and Momentum

The National Disability & Carers Alliance is currently holding its two-day conference in Melbourne. The Alliance, comprising service agency peak body National Disability Services, Carers Australia and the Australian Federation of Disability Organisations (AFDO), is running this event to further the conversation about the proposed National Disability Insurance Scheme.

With an attendance reported to be in excess of 1000, I had imagined this might have the look and feel of a rally, like an American political convention with people wearing colourful hats and waving flags. Indeed, all the speakers appeared to give enthusiastic support for the proposed national scheme, beginning with assistant Treasurer Bill Shorten and continuing with productivity commission Patricia Scott, Parliamentary Secretary Jan McLucas, opposition spokesperson Mitch Fifield, Greens senator elect Richard Di Natale, and other enthusiastic speakers, including impressive voices from the advocacy sector such as Rosemary Crossley, Sally Richards, Damian Griffis and Stella Young.

However, it wasn't a procession of uncomplicated enthusiasm; there were plenty of people at the conference bearing the battle scars of previous policy discussions that did not deliver true and helpful change. Such scepticism is important because, although the Productivity Commission’s draft report is very encouraging, it is only a report, and the fact of its existence does not give certainty that it will become reality. Many architects have poured their hearts and souls into designs for buildings that never got built.

What is important is the message from the Productivity Commission, through Patricia Scott, that disability support should be regarded as a core responsibility of Government. This is a huge point and goes to the heart of the issue; if we believe that people living with disability have inherent value as human beings, and therefore should have access to the same opportunities as fellow citizens, then it is the core business of the government to ensure this is advanced and upheld.

Similarly, Patricia Scott noted that in the Productivity Commission's proposed model the individual person living with disability is front and centre. This is also a huge point as it is the definitive first step in formally dismantling a system of human services that, despite good intentions, has systematically depersonalised and commodified the people who come to it for assistance.

While there will continue to be a diversity of views about aspects of the proposed scheme, the nature of choice, perspectives on market forces and a host of other elements that might attract passionate debate, here is an opportunity for people in the disability community to find their common voice, for in that common voice lies perhaps the greatest hope for helpful change.

This was highlighted by Bill Shorten who declared that since his move to the portfolio of Assistant Treasurer he has lost none of his passion and anger for the issues he learned about when he was Parliamentary Secretary for disability. I am aware that, along with 999 other delegates, I missed the opportunity to ask Mr Shorten what specifically he might do in his Treasury role to help the Productivity Commission's recommendations come to fruition. Just like Charlie in the chocolate factory, Bill in the Treasury could, should, help good things to emerge.

Perhaps in anticipation of such expectations, Bill Shorten put out a three-word challenge to the delegates; discipline, perseverance and unity. The Productivity Commission completes its work in July but this is no guarantee that its recommendations will be taken up. If I read Bill Shorten’s challenge correctly, people in the disability community need to focus on the common good will that we might all see in a National Disability Insurance Scheme. Like a successful alliance during times of struggle, the focus is on the shared bigger picture, a common goal.

In which case, the most important thing right now is to build momentum, to give the big picture - a national scheme of individual funding entitlement - a life beyond the Productivity Commission. To paraphrase the plea from co-convenor Bruce Bonyhady, tell your friends. And tell them to tell theirs.

Commissioning Productive Citizens: an imaginary conversation

First, apologies for the long lay-off from the blog, which was caused by a perfect storm of annual leave, crushing deadlines and miscellaneous turbulence.  Normal service has been resumed.

The Productivity Commission released its draft report here on the future of disability care and support. The full report is two volumes of around 800 pages and reading it is a formidable task. Even the short version has novella dimensions. However, we might be encouraged by such density if it suggests there has been much sincere thinking. After all, this is a once-in-a-generation opportunity to change the way that our society supports people living with disability.

Since its release at the end of February, the draft report has excited a number of conversations, and people have the opportunity to make formal written comments to the Productivity Commission here by 30 April 2011. In addition people can have their say at the series of public hearings that the productivity commission is undertaking in the main metropolitan areas. These are happening now - click here for details.

It can be hard to know where to start in trying to unpack such a large report. One helpful way is to attempt to describe the report in 15 seconds, as though being interviewed on the street by a reporter. In which case, I would use my 15 seconds to make two points: first, the draft report acknowledges that disability support funding in Australia is profoundly inadequate and doubling-up the funding by $6 billion is a good start; and second, the report proposes a national scheme of entitlement where eligible people living with disability get individualised funding in line with their support needs. This is a very good thing.

If the imaginary reporter found my response sufficiently engaging and awarded me a bonus 45 seconds to talk about some of the main features, I would say the draft report appears to assert the scheme would operate in the context of people living good lives, as valued members of the community and as active participants in the economy, with expectations that mainstream services such as education, health, and transport would be routinely, properly, inclusive.  I would enthuse that support funding would be assessed not just on each person’s present situation but also on the future, with a focus on the person’s strengths, capacity, and vision.

I would also note the draft report says eligible people could receive their support funding in one of three main ways: as a direct payment (“cashed out”), or via a third-party brokerage agency, or via a direct relationship with their nominated support agency. All three options are typical features within the methodologies of Individualised (self directed) Funding operating elsewhere.

So in just one minute, it is possible to identify the most thrilling elements of the draft report: entitlement-based funding, designed to assist people into ordinary valued lives, and personalised via Individualised (self-directed) Funding.

At this point, my imaginary reporter, on the hunt for a ripper sound bite, might ask me what is wrong with the draft report, and to take as much time as I want, because grumpy sound bites are particularly entertaining. I would kick off with the complicated issue of whether people should pay a contribution to their disability support. In the draft report people will not be required to make an ongoing contribution to their own disability support, at least not until they reach the age of 65. This is because people accessing aged care funding are typically over the age of 65, and they are assessed for co-contribution.

I'm not entirely convinced there need be a separate funding mechanism for older people because, if you stop to think about it, the support issues for older people and those for people living with disability are similar; for example, assistance with daily tasks, access to equipment and adaptations, community transport, support to remain connected in relationships,and support to maintain participation in (and contribution to) community life. I think it might be better to have a single funding support mechanism to assist people, regardless of the cause of their circumstances.

I would note to my imaginary reporter that the name National Disability Insurance Scheme (NDIS) is a problem.  The word insurance is not helpful , and I've said so before here. Most people's understanding of insurance is an arrangement where you pay a premium to cover the risk of something happening in the future, so that you receive assistance if it does. However the proposed NDIS will cater for people who already have their disability. Indeed, the people who will be excluded from the National disability Insurance Scheme will be those people whose disability has resulted from an insured event such as a road traffic accident, who instead will be directed to the proposed National Injury Insurance Scheme (NIIS). This parallel scheme is presumably deemed to be necessary because the states and territories have differing approaches for providing funding support for people injured in road traffic accidents etc. The Productivity Commission's draft report says that the states and territories would need to work together to link their various injury insurance arrangements into a national scheme. It will be interesting to see how that plays out in reality, and it will be particularly important that the NDIS and the NIIS have good interconnectivity so there is common best practice.  Otherwise we will create two classes of citizenhood within the disability community.

The draft report envisages the establishment of a new independent agency to run this the National Disability Insurance Scheme. I know there have been some concerns voiced about this and how it might be a vehicle for the perpetuation of unhelpful bureaucracy. However, to be fair to the Productivity Commission, I am not yet clear on what the better alternative might be.

Someone somewhere has to determine the mathematical model that underpins the generation and distribution of funds for the scheme. Someone somewhere has to determine the visionary and strategic parameters for the scheme.  Someone somewhere has to determine the operational policies and procedures that will help ensure that the scheme reflects best known practice in personalised funding and supports. Someone somewhere will need to determine and oversee how people apply for funding support. Someone somewhere will need to determine if the overall scheme is operating as it should be and the extent to which it is making a positive difference in people's lives. 

The alternative to a stand-alone new agency would be an existing federal government department, such as FaHCSIA, or federal government agency, such as Centrelink, or through a dispersed arrangement involving state and territory bodies. Each of these alternatives has its own problems. The advantage of a new stand-alone agency is that the agency can be calibrated, and the people within it recruited, to establish the culture best-suited to assisting people living with disability into ordinary valued lives.

In which case, the problem that I have is not with the idea of a new agency, but with its governance arrangements. The draft report envisages that the new agency will be governed by a board comprising people with expertise in insurance, finance, management etc. Unfortunately there is no mention of people having a lived experience of disability. While the draft report talks of a separate advisory panel where the perspectives of people living with disability, together with other stakeholders, can be channelled through to the board of the National disability Insurance Agency, this will not be good enough to ensure that the agency operates in a way that best delivers an authentic impact on people's lives. The board needs to include members who have a lived experience of disability.

If anything, the problem I have is with the proposed agency's governance arrangements. The draft report envisages the new agency be governed by a board comprising people with expertise in insurance, finance, management etc.  These are all sensible skill sets.  Unfortunately, it is an incomplete list because there is no mention of board member expertise in the lived experience of disability. While the draft report talks of a separate advisory council where the perspectives of people living with disability, together with other stakeholders, can be channelled through to the agency's board, this will not be good enough to ensure that the agency does the right thing by the disability community.  The board itself needs to include members who have a lived experience of disability.

At this point my imaginary reporter is probably interrupting me because I have not delivered the grumpy-and-entertaining sound bite, and is demanding that I sum up in less than 10 seconds the main problem with the draft report.

I would quote Wilagan's Fact, which states:

A good idea is at its most vulnerable during implementation.

In other words, the devil will be in the detail.  Have your say, leave nothing to chance.

Vale - Suzanne Carman

I've been away from work these past few weeks and will be away for a little longer so this blog has been quiet.  However I am moved to write something today to honour the memory of Suzanne Carman, who passed away on 30 December.

Coming away from Suzanne's funeral today, I suspect I was the person at the funeral service who knew Suzanne the least.  Our connections were limited to the several meetings we had together, with Suzanne in her role as Executive Director of the South Australian state government's Office of Disability and Client Services (ODACS).

As a result of these connections the Suzanne Carman that I knew was the public servant who was in charge of disability policy and procurement.  I assessed Suzanne's ODACS contributions through my own world view, without investing sufficiently to know more about Suzanne's history and motivations.

It is indeed a very dangerous thing to make assumptions about people based on limited information, for today I learned so much more about Suzanne's life.

For example, I didn't know Suzanne was from Cairns.  I didn't know that she had a fine musical ear and talent.  I didn't know about her faith.  I didn't know that as a young adult she had deferred her studies to give service to the community.  I didn't know about the remarkable range of public service roles she had undertaken in her career, clearly driven by the desire to make a contribution.  I didn't know she had become a grandmother.

I only wish I had discovered these things while Suzanne was alive.

From the celebrant's words at the service today, it is clear to me that Suzanne wanted to leave a message of love and acceptance.  For me, these values lie at the heart of social inclusion and in advocating for better lives for people with greater vulnerability.   

But what I also think I have learned, or re-learned, today is that the same values need to apply in all such dealings, with those whom we seek to influence and with those who have different histories and perspectives. 

Thank you, Suzanne, and I wish I had taken the time to get to know you better.

Rest well.

Australia's Apart-hood

This week in South Australia the media has reported the difficulties that many South Australians living with disability encounter when trying to book an accessible taxi, especially at peak times such as Christmas.  The debate has now extended to include problems of finding enough accessible car parking.

At JFA we support the concerns that have been raised in the media by people living with disability, whose experience has all the hallmarks of apartheid, however unintended.  When apartheid was in place in South Africa, many people and governments around the world condemned it and contributed to the forces for change. This was because specific members of the community – black people - were not being given the same opportunities as other citizens. Why should we not react the same way to the current experiences of Australians living with disability?

Our view is that there should be a determined, systematic effort to ensure that all taxis are accessible, because everyone benefits from universal access.    Of course,this goes way beyond taxis and other public transport like buses.  It applies to every community building and open space that is there for the public.  It is not as hard as people might think to make our communities accessible  It starts with each of us being determined to see it happen.

For your interest, here follows an updated version of the article I wrote in the April 2009 edition of national disability magazine Link.

Australia's Aparthood (revisited)

I have cherished the ideal of a democratic and free society in which all persons live together in harmony and with equal opportunities. It is an ideal which I hope to live for and to achieve.

Hard to dispute, these words were spoken 48 years ago by Nelson Mandela responding to charges of treason and sabotage on the first day of his trial in South Africa.  Mandela was clear that he would not tolerate white domination, any more than he would tolerate black domination.  In pursuit of his ideal, Nelson Mandela spent the next 27 years in prison - truly an exercise in patience and determination.  

In the four years after his release in 1990, apartheid was dismantled.  These historic moments heralded the end of the blatant discrimination led by the South African government against black people.  The world breathed a sigh of relief as apartheid was finally vanquished.

As it is commonly understood, apartheid was a system of racial segregation that was enforced by the South African government shortly after the end of the second world war until the mid-1990s.  It is no accident that the word apartheid contains the word ‘apart’.  It is a Dutch/Afrikaans word meaning separation.  Translated literally into English, it means ‘apart-hood’.   

Much of the world outside South Africa recognised this for what it was: outrageous, unjustified discrimination and separation of people based on a particular characteristic (their skin colour). Its long overdue demise was universally celebrated. But is apartheid – aparthood –actually consigned to history?  

Consider the experience of people living with disability in Australia. Depending on the degree of a person’s support needs, he or she might have little choice other than to live in certain places, such as group homes with other people also living with disability.  Many children and young people living with disability may be directed towards a different, separate education, rather than having the genuine option of attending their local neighbourhood school.  People living with disability are under-represented in the Australian workplace, and many work in separate, ‘sheltered’ workplaces where the majority of their workmates are also people living with disability.  

In Australia, it is harder for people with disability to use public transport.  For example, in South Australia, there are well over a thousand taxis but less than 100 of these are accessible to people using wheelchairs. I can imagine the uproar if South Australia set aside a small number of ‘special’ taxis for women, or for black people, and they weren’t able to access the others.

Often people using wheelchairs are treated differently, and often shabbily, when they want to travel on buses, trains and planes. Many community venues are inaccessible to people living with disability, which denies them the chance to participate in recreation, education and other opportunities.  People living with disability have to use separate restrooms – if they’re lucky enough to find one that is actually accessible. 

We need to recognise that these arrangements have a lot in common with the practice of apartheid in South Africa.  Here in Australia, there is a group of people who, because of a particular characteristic (disability), are directed to special arrangements that tend to separate them from the rest of society, in housing, education, work, transport; and recreation. . As a matter of course, however well-intentioned, people living with disability have been set apart from the rest of the community. Aparthood is apartheid.

For many people living with disability, this enforced separateness is a prison where the bars are created by the negative attitudes of others and by inaccessible communities, and where each day's activities are about as meaningful as a prisoner breaking rocks. 

Aparthood was unacceptable, abominable and inhuman in South Africa. Why should it be regarded any less so here?  

At the moment, the Australian Government is putting the finishing touches to a national disability strategy, and its Productivity Commission is considering the future of disability support arrangements, as is the South Australia Social Inclusion Board.  . It is up to all of us to do what we can to ensure that the completed strategies genuinely address the underlying wrongness of our current disability support arrangements, rather than trying to patch-fix the existing system.

 

Key to this is the insistence that people living with disability enjoy equal access of opportunity, free from discrimination. It is the right thing to do. As a community we need to take action collectively.  Otherwise, like Nelson Mandela after his conviction in 1964, the Australian disability community will be breaking rocks in prison for a very long time.

imagine getting real

In a recent blog posting I talked about the problematic nature of congregate supports.  Among other comments, I received one from a parent, Ronni, who said this:

“Yes Robbi you are missing something. You have not asked those dedicated parents who provide the day to day care for the severely disabled. As much as we love our children we will wear out eventually and like you we deserve a holiday occasionally. Congregate living is an economic reality and does not have to be a bad thing per se ala http://www.camphill.ie/What-is-Camphill-p-6.html.
You harp on about what the rest of us would choose. Well my son is not like you or I. He is a very sociable being and will never be able to use technology to communicate - he needs 24/7 care and face to face interaction. I cannot provide this for the rest of his life and nor should I be expected to. Time to leave cloud cuckoo land. If you want a taste of reality you are welcome to come stay at my place for a month. You would learn the full meaning of compromise because your life would certainly change!”

I am very grateful to Ronni for taking the time to comment, and I’ve placed the comment into this new blog posting because I wanted to make sure people didn’t miss it - Ronni’s comment raises important points and made me stop and think.  In essence, Ronni’s challenge to me is to get real.

I am not a parent of a disabled child so I do not have the experience that Ronni and other parents have.  What I can understand is that many parents provide extensive and unremitting day-to-day support for their disabled son or daughter, and that over time this can lead to parents wanting to consider other ways that their family member can be supported.  

I talk a lot about personalised, individualised, socially inclusive options, and I much prefer these to congregate options.  This is because I have seen many services in many countries over the years, and the better services have typically involved people being supported in highly personalised ways within community (and not necessarily with a high price tag on the support). 

I realise that such options are not always available in every location.  Meanwhile, parents will want to choose the best option available for their son or daughter.  Ronni directs me to a website about the Camphill communities.  I have had past involvement with Camphill communities, and to a lesser extent L’Arche, and I recall an ambience characterised by a welcoming, family atmosphere and a culture of acceptance and contribution.  

Interestingly, the Camphill movement emerged at a time, in the late 1930s, when large scale congregate services were the main service option for vulnerable people who could not be supported at home.  By contrast, Camphill’s message was about the innate potential of people and how this might be nurtured.  The message is about the inherent worth of each person as a unique being.

What such endeavours appear to have in common is a deep respect for people living with disability, a commitment to live by family/community/spiritual values and a desire to support people to reach their potential.  I can see how such services will appear attractive and practical.  If I was a parent of a child living with disability and I needed another way for my son/daughter to be supported, I would want the best option available; if it were true there were no individualised options available or conceivable, then I can imagine I might seek more information about a setting like a Camphill community.

Unfortunately, because of the general history of service provision, augmented by the habits of government funding in many jurisdictions, most congregate services do not adequately reflect each person’s uniqueness, and instead people are installed into pre-ordained service programs and settings.  I have spent many years working with, or with the consequences of, congregate services.  From these experiences, I believe the best, most personalised, congregate services are still not as good as the best, most personalised, community-based services I’ve seen. 

I am also convinced, from my own experiences and from what has been reported, that vulnerable people (including people living with severe disability, people living with enduring mental illness, and frail older people) are at the greatest risk of neglect and abuse when they are placed in settings that render them separate from, and invisible to, the wider community.

Our work at JFA has been about trying to find, or imagine, better supports for people living with disability than those currently available.  As part of this work, I have been involved in, or otherwise seen, arrangements where a person living with severe disability is being well-supported without having to use congregated settings.  Such opportunities are not yet available in all locations but we can hope that one day soon they will be, so that there is authentic choice.   What is true is that there are plenty of examples available of how a person living with severe disability can be well-supported in highly individualised ways, so the only things that are stopping any jurisdiction, any community, from creating such choices is a lack of imagination and a lack of determination.

In the meantime, I can understand any parent being sceptical about the possibility of such arrangements, given the current reality of daily life.   Therefore, I think one of the issues for us as a community is that many people living with disability, and many parents, and many professionals, may not be aware of some of the promising and progressive advances that have been demonstrated in individualised supports.  Further, it seems to me vitally important that family members do have good information about such possibilities before making a decision about future support arrangements for a dependent loved-one.

At JFA we hope to illuminate more of these helpful advances.  Building on the well-received workshops we hosted in 2010, we are currently planning a number of events for 2011 that will provide greater visibility for some of these developments, and hopefully will provide useful material to people living with disability, the family members involved in their lives, and professionals.  

The reason we do this is because we want to help ensure that people and families are supported to get information about the progress here and elsewhere and how it shows what might be possible in people’s lives.  Otherwise, many people may find themselves making big decisions in the absence of such information.  It falls to all of us to do what we can to make sure that people living with disability, and the families involved in their lives, are assisted to assess, and access, the best possible options for support.

An increasing number of families are writing books about their discovery of such options and the resulting positive impact in the life of their family member.  For anyone interested, we have some titles available for loan from our office.  And if you have been inspired by someone’s book about what has been possible in their own life or that of a loved one, then let us know and if we don't have that title we’ll track down copies for people to loan.

In conclusion, I do not set out to dispute the role of families who are in the lives of dependent family members living with disability, or to criticise the decisions they might make about the support arrangements for their loved one, or indeed the choices that a person living with disaiblity might make for herself or himself.  Instead I hope that I can make my contribution to ensuring that people have better information about what might be possible, and where such options authentically safeguard that person's value as a human being, and uphold and advance the person's uniqueness and potential.