Tuesday, November 24, 2009

NDIS Feasibility Study By Productivity Commission - An Indicator Of What's To Come?

The PM, Kevin Rudd has announced a feasibility study on a National Disability Insurance Scheme. A good thing surely?

The government's Shut Out reports found that many people with disabilities believe the service system is so broken that it needs a change in the nature of a paradigm shift. That includes a fundamental shift from disability service industry to 'being of service'. Not just ensuring a greater money supply to the same old system. NDIS is not a paradigm shift in itself. It is just a tool towards something. Unfortunately giving this feasibility study job to the Productivity Commission casts disability as a simple economic question, rather than one of meeting fundamental needs - a personal, often messy, but rich human process. You cannot effect a paradigm shift by adhering to the same values that are part of the problem in the first place. Whose interests come first? Disability industry, Treasuries, or people with disabilities? An NDIS, "yes", but one that facilitates qualitative change as well as quantitative. If it won't make that happen NDIS will just be another charity scheme.

The Daily Telegraph reported the PM as saying: "This inquiry is an opportunity to rethink how we support people with disabilities so they can engage with their community, get a job where possible, and live a happy and meaningful life," he said.

If that is the aim, and I largely concur, why not go for a wholesale inquiry on what quality in service means and work out a GENUINELY participative long-term process towards it? Not part of the Productivity Commission's brief as far as I can make out at this stage, and probably not the right body to do it anyway.

The economic orientation is not surprising given the Commission's economic orientation, the feasibility study's job having come its way from a similarly motivated Disability Investment Group. And... not surprising Parliamentary Secretary's Bill Shorten's stated belief in his disability portfolio as primarily an economic one, not social welfare. "Social welfare" now being dirty words for some reason, where a brief glance at any dictionary would convince you about its appropriateness in this area.

It will be interesting to see what powers the advisory panel will have, who is on it and how are they selected...

Where is the detail?

So what is the Productivity Commission you ask? Its website summarises its role as "As its name implies, the Commission’s focus is on ways of achieving a more productive and efficient economy—the key to higher living standards."

THE COMMISSION’S LEGISLATIVE ‘INSTRUCTIONS’:

• improve the productivity and economic performance of the economy
• reduce unnecessary regulation
• encourage the development of efficient and internationally competitive Australian industries
• facilitate adjustment to structural change
• recognise the interest of the community generally and all those likely to be affected by its proposals
• promote regional employment and development
• have regard to Australia’s international commitments and the trade policies of other countries
• ensure Australian industry develops in
ecologically sustainable ways

Can we hope for socially sustainable advice too from a body whose core belief and expertise is about 'wellbeing' through economic activity? Good question.

But we can always go back to calling people with disability "consumers" cannot we. Because that is all any of us are aren't we? Are we?

Thursday, October 29, 2009

Ask Bill Shorten

This is a post with a short life. Tonight, 29th October 2009, you can ask your question about NDIS directly to Bill Shorten, the major political driving force behind NDIS on the ABC's program Q&A Adventures in Democracy.

There are a number of questions on NDIS, some asking critical ones. This is a good opportunity to "ask your heart out!"

FYI, my two questions are posted there. Lets see if they get up. Anyway, here they are too:

The NDIS Plan is silent on funding of independent disability advocacy, in part as a safeguard to good service for people with disabilities. Disability advocacy has been operating on a trickle of funding for decades, perhaps because the government does not like funding this sector as potentially uncomfortable to it. But it is vital to people with disabilities. Will NDIS greatly increase its funding and development to be strong and effective, including the type called citizen advocacy?Erik Leipoldt

(Pity there is a word limit on the questions because I don't mean to assert that advocacy is merely there to monitor service quality, as the Shut Out report appears to say. )

The Shut Out report, as does the NDIS Plan, states that disability services are failing Australians with disabilities. What are the identified areas where services are failing, and what will NDIS/national strategy do to change this? Will NDIS simply mean offering more of the same? If not, what fundamental changes to service quality might it enable? And how will it avoid Medicare-type problems of waiting lists and (lack of) quality service?Erik Leipoldt

(Noticed a few questions along these lines. Will we get an answer?)

Happy viewing.

Tuesday, October 20, 2009

Why Spending More Money Does Not Increase Quality Or Sustainability In Disability Services


John Pini’s post, quoting Michael Kendrick, reminds me to refer readers to Michael’s "Some reasons Why Spending More Money Does Not Inexorably Improve Service Quality And Sustainability" in Crucial Times of 2006.

While you’re there all the other articles are relevant to what we should be incorporating in any national disability strategy. These are among the voices that must be heard:

A Sustainable Community For My Son, by Sally Richards

Sustaining The Vital Essence Of A Family-Governed Service, by Elsie Butler

And

Sustainability and Spirituality, by Noel Preston AM

 

 

Wednesday, October 7, 2009

NDIS and Shut Out miss the elephant in the room

Let's recap...



On important counts I agree with the NDIS proposal as I do with much of the Shut Out Report.


We agree that:

  1. the social position of people with disabilities, and often their families, is not good;
  2. the disability service system is not good enough;
  3. an integrated approach is needed, which must also pay attention to a stable funding base.

We appear to disagree about the causes of the malfunctioning service system. It is not just about under-funding and therefore crisis management. Primarily it is about values, beliefs and fears, service orientation and competence. There are strong tensions between wanting money for the strengthening of service technologies (such as “early intervention”, “case management”, “advantages of competition in the marketplace”) and meeting (even understanding) of the real and fundamental needs of people with disabilities. And in that tension people with disabilities are crushed by the weight of the upper tectonic plate of managerialism (yeah, a bit strong, I know, but that's what it can feel like when it happens to you).


We disagree that more money will transform the existing disability service system into providing service that will meet real needs. More than money is needed.


Besides NDIS, the Shut Out report contains a number of strategies, including complaint mechanisms, advocacy, leadership training, capacity building, jobs in public service, and so on. All worthwhile if done well.


Curiously there is no mention of quality improvement, or transformation of services. But why not? “Disability services” share first place (56% of respondents) in Shut Out's ranking of identified barriers to experiencing a good life, with “Social inclusion and community participation.“ That is not counting barriers presented by “Disability services—workforce issues “ (21%) and ”Families and carers “ (30%). If we take into account that only half of all submissions came from individuals and the rest from the service system itself, that shines the light strongly on a glaring priority for attention.


In arguing that much of the disability services system is a ripe candidate for overhaul I seem to invite no contest from NDIS proponents and government who agree the system is not functioning well enough. Does anybody know then why there are no proposals for doing so? Perhaps the NDIS feasibility study will reveal a strategy.


I hope they don't!


What? After what you've just said? Yes, changing our existing services system must be done with great care. it takes time and should not be devised by a small group of predominantly financial and commercial competition experts, or service providers. In fact with the principles of care Joan Tronto talks about, I suggest. Doing something like that could equally well end in disaster. And who will pay - again?


I think it's possible though. A service system that works towards modeling in its structures and operation those values that work well towards living a good life. Change from the inside out. Isn't that what always works best? It would be so rewarding working like that. It can be attempted. Given a fully participatory approach, drawing on the values that underlie fundamental human wellbeing. Given an understanding of an ongoing need for strong safeguards whatever advances we make. For this process of change itself that would include, somehow, giving it a degree of independence of such efforts so that they transcend periods of government.


Ok, that's my two cents worth for today.


Tuesday, October 6, 2009

An odd thing - We hear one half of the message and ignore the other half

Why we may be letting the nature of NDIS slip under the radar.


The best thing about the proposed National Disability Insurance Scheme it is that for the first time we see public acknowledgment, within government and disability industry circles, that social attitudes underpin much of the experience of disability.  That impairment of any sort is a normal part of life. And that the existing service system is not good enough. Politicians and disability industry chiefs can now reel off lists of injustices with the same ease and passion that was hitherto the province of disability advocates. And they call for society’s response in sharing in insurance against disability.


The facts about our devalued social position are unassailable and accepted wisdom for us, people who live with disability. Maybe that is why, so far, we have heard so little critical comment about NDIS from those on the ground, people with disabilities, carers and from disability advocacy. Of course we all want a better deal for ourselves and for people with disabilities broadly. So it is that we can ignore the other half of the NDIS story: you’ll get more of the same malfunctioning system, just differently funded.



And how will disability advocacy be funded, by the way? Not a word about that in the  NDIS Plan.

Just like in advertising: we seem happy to buy goods labeled “green”, “natural”, and “full of goodness”, while ignoring listed ingredients that are anything but that.


It is usually under Labor governments that advances for people with disabilities were made. We think fondly for example of Senator Don Grimes who was the father of breakthrough developments in the late eighties, rippling their effects into the early nineties. 


We now have Labor MP Bill Shorten propose a new funding approach and we know this opportunity may only come along once every twenty years or so. So some people are tempted to accept NDIS as-is and look at the “detail” later.  But we are not talking about details if the system that often obstructs the meeting of real needs will not change, or will even be entrenched by it.

Perhaps it is all too human to reach for funding sources, money and service technologies first before looking at the actual needs to be met. 

We think money is the wind that moves the ship of any endeavour.  But as the current service system shows, if you don’t know how to build the right hull, or how to competently sail it in the right direction you’re still up the proverbial creek. Or rather, in this case, people with disabilities are. It is therefore imperative that we seize this time of public acknowledgment to design a complete, new approach, starting with the foundation: Values and beliefs.

This is too important a time and a cause not to give it in-depth, competent attention, accept shared responsibility for designing it well, and with reference to the lived experience of people with disability and those who care for them, and with them. We should not just leave this to a small group of financial and industry competition experts, Bill Shorten’s Disability Investment Group.

The very first priority resulting from the recent National Disability Review is: increasing the social, economic and cultural participation of people with disabilities and their families, friends and carers. As far as any NDIS is concerned that strategy must be applied from the ground up, i.e. now.


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What's insuring against disability all about - really?



Back so soon?  Well here's more reading...
Please comment!



Insuring Against Disability – Towards A Sustainable Society
©Erik Leipoldt PhD
September 2009

“The only source of knowledge is experience”
Albert Einstein


"Disability" is part of normal life. Any society that accepts that will be a flourishing, sustainable community. Here is why and part of a guiding story towards such a future.

Disability results from negative attitudes towards those who have an impairment of some sort. Like not being able to walk, or see, speak or understand the same as others. Negative social attitudes cause exclusion from employment and education, abuse and poverty.  And these attitudes mostly come from unconscious fears about the imperfect nature of the bodies within which we have to live.

Things go wrong with bodies. We lose bits, break them, we get old and frail or we are born to live at the extreme ends of the full spectrum of human abilities. Really: disability is only a label to describe a condition that falls outside our range of desired attributes of being human. Just as we can see only a part of the full spectrum of light, we do not want to see death, decay, ageing, disability and disease as part of a normal, whole life experience.  Which is why our society celebrates youth and buys anti-ageing creams. Adores physical beauty and perfection. And overvalues material wealth and intelligence.  

Consequently, people who do not embody these ideals get directed to that same scrap heap that contains those parts of life that we do not like. It follows that such discarded people are excluded from everyday life’s activities, may experience severe abuse, and may easily become commodities in the multi-billion disability and “care” industries. It’s an industry following business practices, including tendering, competition, case management, and cost/benefit analyses. Such organisational attributes form barriers to meeting human needs because of their incongruence with the lived experience of what it is that makes us human.

Some 20% of Australians have some kind of disability, with a rate of 81% of it for over-85 year-olds. With a growing and ageing population and rising incidence, disability is certainly a topic of interest to all. Of course, no amount of money can buy our way out of attitudinally-caused disability. Only attitudinal change can! But how to change that?

Changing values

Yes, appropriate aids and equipment and support services are needed and do cost money. But without a firm values footing in acceptance of those parts of life most of us deny, they can at times do more harm than good, and only represent more barriers to meeting human needs of people with disabilities.

Einstein once said : “You can never solve a problem on the level on which it was created.”  The present proposal for a National Disability Insurance Scheme (NDIS) is an attempt at more money for the disability services industry but does not set out a new foundation upon which to build it. If allowed to go ahead “as is” it may actually entrench barriers to acceptance of disability. It treats  the service and managerial technologies of case management, cost effectiveness, early intervention  and marketplace competition as primary goods, rather than tools towards good lives. And the two are incongruent.

If our present dominant social values do not serve the interests of people with disabilities, then what will? And if we can find a new values base, will it be too far removed from mainstream ways of doing things, and therefore too hard to implement? 


Disability experience as a guiding story

Well, let’s go to those values that do work well in the lives of people with people with disabilities.  As we have seen, they must be relevant to all of us, as disability is part of all of our lives. Under truly supportive circumstances people with disabilities do find the same level of wellbeing that all of us crave. Human wellbeing has universal meaning and appeal, wherever you are right now in that spectrum of life experiences. By going to that body of knowledge we have a solid, evidence-based mandate for a working framework for dealing with disability. This is a much better mandate than the economic and medical models of wellbeing, of which we know that they do not work. And even the best human rights statements must still be enforced within the dominant social values that drive our culture presently – and which often work against them. They do not suffice without sustained action.

I propose that the best and only insurance policy against disability is in the sustained practice of an alternative value structure. One that we already know, deep down, to be true to our nature as inherently valuable, and ever-growing, relational beings.

A disability experience-based framework

As Kevin Rudd loves to say: “Everything is connected to everything else.” The proposed disability experience-based framework rests on acknowledgment of interdependence and an approach based on care. Now, part of the disability experience also includes being treated as objects of patronizing care but I hasten to add that that’s not what I mean here.  

Life is characterized by care. To the degree that we pay attention to needs; the responsibilities we accept; the inherent value, meaning and dignity we see in each other, will we deal with our cares, our worries, and our impairments. But it starts with the fact of interdependence.

Interdependence

None of us are independent islands. We are all dependent beings. Dependent on our environment, goods and services others produce and, crucially, on assistance others provide to us when helpless as babies and toddlers, ill, or frail aged.  Most of that care is given out of love, without expectations of (re)payment. That kind of care means the ongoing exercise of small acts of creativity, persistence, kindness, generosity, acceptance and flexibility in difficult circumstances, to mention only a few. No holidays, RDO’s or set lunch breaks. Without care none of us would exist. The way we survive and thrive is through co-operation and altruism. Essentially not through competition and self-interested exercise of choice in a world without limits – the dominant social values framework.

The experience of disability magnifies our reality of limits, within we must live, and reveals the possibility of living well in that reality. It reveals also that there are no boundaries between people with or without impairments, just a continuum of bodily and mental states. We all need each other and feel good in the mutual acts of care that interdependence involves. We live by virtue of relationships and our deepest needs are fulfilled within positive relations. Without that relational framework people and communities fall apart, and those who are most vulnerable feel the worst of its effects. 

Relationships, Relationships, Relationships

As current Finance Minister Lindsay Tanner wrote, when in opposition:
Relationships are the missing piece of the political puzzle. As we struggle to adapt to the domination of the bottom line and to constant economic, social and technological change, the factor invariably omitted from the equation is human relationships. … The shape of our future society will be determined by the health and strength of our human relationships. Our economic progress depends on the relationships that sustain our economic activity. … We must refashion our entire approach to organizing our society, and put relationships at its heart.

Our malfunctioning human services are built on values that contain the seeds of the problem they want to fix. We could refashion disability service based on the solid ground of good relationships.

We are relational beings who wither outside caring relationships and become the best we can be within them. The disability experience is a magnifying glass held over the human condition and so it is that if we facilitated the best, supportive relationships, and welcoming communities for the most vulnerable of Australians, that our entire society would benefit. How? Well, the practice of care is the “secret sauce” in making healthy relationships and developing those personal qualities that make for fulfilled human beings. Just as Tanner did for relationships, it has been proposed as a political framework for governance at many levels.

Processes of care as a solid foundation

Joan Tronto’s framework of care emphasises coherence between the needs of people and the organisations that serve them. The processes of care arising from the lived experience of people reflect our true human nature, our core needs and values. Therefore any human service organisation whose services and structures are coherent with that experience are likely meeting real needs and doing the least harm. It firmly values the individual in community. The processes of care can only really be harnessed by organisations that model them – live them - in their organisational structure and processes.

The four processes of care are:

1) to pay proper attention to the person’s needs; 

2) the taking of responsibility for meeting them; 

3) exercising a competent approach and; 

4) responsiveness in care as a mutual process.

An overarching frame work of care applied to core human needs is worth exploring as a 21st century approach to supporting people with disabilities and overhauling the existing disability services infrastructure.  There is not enough space in this article to explore the full application of it in “insuring” people with disabilities against disabling attitudes.

Applying such a care framework is not Utopian as it is based in our daily human experience. And if care is really everyday commonsense, why should it be too difficult to implement in the way we govern our services? It’s about time. So, it’s all about choice when the chips are down: eliminating disability is as easy as changing our minds.

References


Tanner ,L., 2003. Crowded Lives. Pluto Press. Australia.


Tronto,J.C., 1995. Care as a basis for radical political judgments. Hypatia, Spring 1995 v10 n2 p141(9) 
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NDIS - Could it be a barrier to disability service?

 Welcome back.

Here is a piece that outlines my more detailed views of NDIS. Your comments are welcome!

A National Disability Insurance Scheme - A Barrier to Service?
(c) Erik Leipoldt PhD
September 2009


A proposal for a National Disability Insurance Scheme (NDIS) is on the table. But is it worth having in this form?

Some twenty percent of Australians have some kind of disability. You may not have one today, then Bang, you too join the club. Accidents, old age, illness, congenital impairment. It’s part of life and they happen to you and me. Not just to someone else.


But you cannot really insure against disability, just against some of the financial costs of it. The reason you cannot is that the experience of disability is largely determined by social attitudes towards people who have impairments of some sort. Physical, mental, sensory or whatever.


Those social attitudes ensure social exclusion, isolation, abuse, unemployment and poverty for many people who have disabilities and their families. And these effects bother disabled people far more than the fact that they cannot walk, see or hear.

No insurance against disabling attitudes

Significant disabling attitudes are those that see the person as a tragedy, and a medical problem. Or as a worthless deviant with no economic role to play. Or treat them as a commodity in multi-billion dollar disability services and “care” industries.  As someone with long-time personal experience of quadriplegia and involvement in the disability area, I know that in a society like ours no insurance premium can buy you the status of a valued person, to be included in our society’s work, learning and playing activities, alongside everyone else.

There is of course a case for a no-fault disability insurance. I think of it as erasing the anomaly between those who might become disabled in a car accident, and receive a big compensation pay-out, or receive nothing if you did the same thing by being dumped on your head by an ocean wave, or acquired a disability at any time, whatever the cause. Or the anomaly where a legally blind person receives a means test-free disability support pension, but no one else does – while many impairments involve higher disability-related costs of living. At least a straight no-fault disability insurance scheme might compensate somewhat for the significant disability-related extra costs of living, thereby relieving some disability-related poverty.

There is now a proposal for a no-fault National Disability Insurance Scheme (NDIS) on the table. It wants a public, tax payer levy like Medicare or superannuation to pay for disability services and equipment for people with disabilities, whether born with an impairment or acquired one as a result of an accident. It says the results will be “transformational” for people with disabilities and their families but the scheme will not provide income support. And it says nothing about transforming disability services towards meeting fundamental needs.  Just the same disability services we’re getting now, but more of them, along the same lines of existing managerial service ideology. This, even as the NDIS proposal says the disability services system is not good enough, which is a notion I support.

Grounds for opposing NDIS

I oppose NDIS in its current form on several grounds. The main one is that you cannot make mango juice out of a lemon. We don’t need more of the same. We need something fundamentally different. Something based on the meaning of Care, not industry-based competition. Some approach that genuinely meets individual needs. Secondly, in doing so we need to honestly and transparently separate the budgetary needs of the disability industry and government Treasuries from the human needs of the people that this is all for: people with disabilities - and not let the first two ride over the third. Lastly, we need to pause and acknowledge that a similar levy-based scheme, called Medicare, has not so far led to an equitable, high quality, needs-based health system. So why would NDIS?

Disabling barriers within disability services

The NDIS proposal states that the disability service system was “not properly designed and structured, but has developed in an ad hoc and deeply inequitable way over several decades.” What it does not explore is where the causes for the unresponsive system lie. They are found as much in the disability industry’s values, fears and ignorance as those that shut people with disabilities out from our society. And often they are cemented in by the same managerialism and application of market forces to human wellbeing that Kevin Rudd says he is concerned about. This goes beyond tweaking or buying better quality service.

So what does NDIS propose? That its implementation will create quality service through industry-wide competition in a “a new competitive marketplace for service provision” driving” efficiency and effectiveness” That people can have more “case management”, a discredited managerial tool. That we can have “training, development and access to work to build self esteem...” Do you go to work for that reason? It says this perpetuation of the system, of which it also says does not work, will be “transformational” for people with disabilities. Sadly, making such calls about what people with disabilities need may actually get NDIS over the political line as people with disabilities and families grasp this straw in their desperation. But the security and safety actually being offered appears indeed as no stronger than that. Those are not the fundamental needs we need met. NDIS seems deeply incoherent and its real agenda apparently is simply more money and reducing cost.

Money alone is not the answer, but it is a seductive one. Truths about the devalued social position of people with disabilities are expressed in numerous reports, including the recent “Shut Out” report from the National Disability Strategy Review, and in the feedback pages on the NDIS Plan website itself. These reports show two noteworthy things:

1) The deepest felt needs, expressed by people with disabilities, involve their social acceptance and inclusion as a valued human being;

2) Such acceptance cannot be bought, yet there is a pervasive feeling that if only enough money were available to enable any services to be available to anyone who needed it, that all would be well. A sense of relief, security and safety would result.

But we also know, re-stated by 56% of submissions to the current Strategy Review report, "that services and programs act as a barrier to, rather than a facilitator of, their participation." We don’t need an NDIS that would entrench this.

Money cannot buy you love

We all know what happens when you try to buy love – it becomes a commodity and is thereby perverted. Paid service therefore always needs strong safeguards against its abuse: the pornography of care. The disability industry has few strong ones. One safeguard is to entrench service values, structures and practices in fundamental, individual needs, with care.

At heart, what people with disabilities need is full acceptance into the social fabric of Australia, and true service that enables them to be supported and celebrates the aspiration of their full human potential. Doing this will reduce many of the disabling effects of our impairments.

Yes, of course some of this needs money. But let’s not start with that. At the core of it is priceless attitudinal change. A society that attempts to buy it, with money or with managerial tools, will find that is impossible. It actually takes some hard yakka to create a welcoming community. And there are also some examples of good service to build on. A society that cannot do this with its most vulnerable members is unsustainable because of the underlying NDIS premise: We’re all in this together.

Let’s first look anew at the whole concept of insurance against disability, where being of service is more important than the disability services industry. Perhaps then, together we can craft an NDIS that supports good lives for people with disabilities.

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Monday, October 5, 2009

NDIS - Best Thing Since Sliced Bread For Australians With Disabilities?


The National Disability Insurance Scheme (NDIS) is a proposal for a no-fault disability national insurance scheme, paid for by a public levy, like Medicare or Superannuation.

We need something because right now some folk get a multi-million dollar pay-out to support them in their high-cost lifestyle as disabled bod, following, say a car accident. But other have to make do with a disability support pension and live in poverty. Just because they were born with an impairment or had an accident they were not insured for.

Plus, numbers of people with disabilities are increasing (from 1 in 5 now) because  of a range of causes,  including that we live longer. How can our society best support them?

NDIS arose from a national "20-20" brainstorm summit courtesy of our Prime Minister Kevin Rudd, who likes such participatory approaches to democracy. So do I! And I too had written in suggesting a national no-fault disability insurance scheme be introduced. An idea whose time has come, so many people think.

So, everyone happy you say? Nothing to write about? Boring blog!

No, no, no! Hang on a minute, let me finish...

I do NOT support NDIS as proposed. Why not? OK, here goes, but be warned it requires a bit of reading.

Oh, and it's relevant to say that I have some 30+ years of experience of disability. I broke my neck in the surf of the Indian Ocean in 1978. And no, I did not drive my car in to it, so no multi-millionaire created there!

I started this blog as a voice for good people who want to have a platform for proposing a better approach to NDIS. Or, rather, towards better overall support approaches. Doesn't necessarily have to include NDIS. Approaches that promise to support us to live good lives together with everyone else. Your stories are needed to show the disability industry, and the government, what is possible with a bit of recourse to the lived experience of disability.

Even though I think NDIS as-is is more likely to entrench disabling attitudes towards us, the public profile that it has mustered is a great opportunity for real change, an opportunity that does not come along that often.

I don't know whether this blog will be able to make a difference. It depends on you really.

Let's see how far this will take us... Coming along for the ride? It's your life!

(I'll give you a hint about this blog. Whose missing in the picture above?)

Till the next post. Be well!