Tuesday, November 23, 2010

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
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.


  1. As the parent of a child with a disability I know the challenges Ronni and other parents face in developing options for the care of their children. And I appreciate her exasperation when she states, "Time to leave cuckoo land."

    Its difficult to imagine possibilities beyond what currently exists. When Henry Ford first sold his Model T the options for colour were "black or black". Ford couldn't have imagined the range of colours we enjoy today?

    My son too requires 24 hour care. Last year we had something truly incredible happen. A caregiver who has provided care to our son Joshua for more than three years announced his intention to move so that he and his young family could be closer to their extended family. Upon hearing the news we were happy for him and disappointed at the loss this would mean for our son as Josh very much enjoyed the care of Scott. But Scott had more he wanted to say. He asked if Josh's mother and I would consider having Josh come live with them. His family had come to enjoy Josh and recognized that we would soon need to find alternative care arrangements due to our age (mid 50's) and Josh in his mid 20's.

    Josh has been living with Scott and Val and their three children for the last year and is very happy. If you had asked me a couple of years ago what Josh's options were for care beyond the family home I probably would have identified "black or black" as that is all I knew at the time.

    What I appreciate about JFA is they are constantly exploring new ideas about what is possible for the care of our sons and daughters. They are helping us see the world in colour.

  2. Just some comment’s on which way is best for my special needs person, I am writing this completely on how I feel and see things because it is the only way I can. My life is changing with self managed funding ( as we call it here in Adelaide) As I look at the many ways people here and around the world do their lives with a special needs person it is actually starting to point to a few realizations, they are.
    Looking at what other people do is great, inspirational and confronting. It means that I can and I should be able to make different decisions and that the only thing the same is no matter which decision I make there is always going to be risks.
    The perception that we need a lot of money to do things: It is I never, ever really about the money, it is available and always has been and always will be, using money as an excuse is really saying I am not sure about how to do things and/or don’t want to confront a reality. One of the key ingredients in doing our lives (life) is to stay in present time, which to me is, what do I need this moment, today, this week ,this month, this 3 months, ......,it allows for flexibility, opportunity and adaptability. Just like the moment I realized my child had special needs. It has been 30 years and that is a lot of moments, if I look back it is almost over whelming it is always emotional so when you look to far forward the same emotion happens, so I look then at how am I now and everything is o.k. When I hear that it will cost so many $$$ over the next so many years it becomes overwhelming for all involved, me, government and my community, stuck again, just ask me what do I need now and the answer is obvious not a lot really.
    It is not about me never has been never will be, it is always about the individual special needs person and their needs and desires. The game and role playing I have to play, to get things for my special needs person is getting so tiring I am nearly exhausted. The truth is my special needs person needs whatever it takes for them to do their life. To keep looking for every answer somewhere else is never going to satisfy me, it may help me, it may inspire me that’s all. I know what to do, I just need to do what I need to do and take a risk. Not doing anything is actually going backwards because new things are going past us. I am either going forwards or backwards, nothing can actually stand still without decay setting in.
    Which way a person chooses and has probably already chosen to do their life has actually always been the case. It is about giving back the basic needs of the special needs person, like all individual’s, that is to be self determined, physically, mentally, emotionally and spiritually. When each individual is allowed to make their own decision’s what will be created will be what is required. It is the reason why we have so many choices already and I love the idea that we will have more choices into the future, they are being created right now, we will see them soon, it’s how everything works.

  3. I find myself becoming increasingly exasperated by this debate. If we had one dollar for every word that has been written or spoken over the past thirty years around the best model of accommodation for people with disability, we wouldn't have the total and absolute crisis that we now have. In 2011 in Australia, 95% of all people with an intellectual disability live at home with their families and huge numbers of people with mental illness and physical disability do likewise. There is no alternative, no choice, for them to do otherwise. Yet the "industry", that is the service providers, academics, bureaucrats and advocates engage in this inane debate with all the right words: "inclusion" "choice" "integration" "dispersed" "segregated" "valued" and the rest. They chug along oblivious to the plight of the majority of the people they are supposed to represent. It is a charade which pretends that there really is a disability support system in place instead of the ad hoc excuse for one that leaves most of us out in the cold. It pretends that there really is a range of different options which people may select as a lifestyle choice while the reality is the opposite. I would suggest that this conversation properly belongs in a society that actually provides for its disabled people. The debate in this country should be around why it doesn't, why it is different and what can be done to change this grave situation.