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Category Archives: People With Disabilities

Alyssa’s Autism Acceptance Project

I recently discovered Alyssa’s Autism Acceptance Project online in a blog post by the project creator herself, Alyssa Bolger and her brother Lachlan, two teenagers on the autism spectrum on a mission to change their little corner of the world for the better. They are based in Australia but I found their story really inspiring and think you will too. I love solutions created by the people they are designed to serve. Insider knowledge is a special thing and it always seems a bit like finding treasure when I come across something like this. As a clinician, research is one thing, but it’s never quite as powerful as knowing real life examples of people doing well and what it’s been like for them. There’s a term for this, ‘the power of positive contact’ and it’s a key ingredient for creating accepting communities. This project has that in spades. You can find Alyssa’s Autism Acceptance Project and follow her family’s journey on Facebook at www.facebook.com/TheAAAProject/

Alyssa and Lachlan’s article on Reframing Autism gives us a real life example that totally busts the common myth that people on the autism spectrum aren’t interested in friendship and shines the light on the barriers that get in the way. All humans need friendship including people on the autism spectrum.

Alyssa and Lachlan write, “My name is Alyssa, and my younger brother is called Lachlan. We are both proud autistic teenagers and we are writing this post together (with a little help from our autistic parents), because we want everyone to know how important friendship is to us, as we know there are Neurotypicals out there who think autistic people don’t care about having friends.”

They go on to explain, “Lachlan and I have learned that making friends is all about having something in common. That’s why we started our Lego club called BrickTime a few years ago. It’s a safe place that’s seen lots of friendships, because of a common love of Lego. Some of the Lego builds have been amazing! We were even going to organise an exhibition to show off these builds, but COVID-19 put a stop to that. Hopefully, we’ll get to do it one day.

Along with BrickTime, the other thing we do as the AAA Project is travel to schools to talk to kids about autism. We started doing this because of a message that I received while I was the Telethon kid back in 2015. A young autistic girl (who was so happy to discover that she wasn’t the only autistic girl through seeing me on TV) sent a message to ask if I would be her friend. She said she didn’t have any friends in her small country town, because nobody ‘got her’. I would have loved to have been her friend but, unfortunately, I had no contact details for her (and I didn’t even know her name). So, we set off travelling around WA, in the hope that we might find her. We talked to kids from schools as far south as Albany and as far north as Kununurra. Lachlan and Dad did all the behind-the-scenes tech stuff, and Mum and I did the presentation.”

Read the full story here: Building Friendships Brick by Brick, by Alyssa and Lachlan Bolger on the Reframing Autism website.

People’s Review of the Mental Health System

Share your story and help create a better mental-health system.

The people at Action Station have teamed up with Kyle MacDonald to create a People’s Review of the Mental-Health System. They want to gather together as many personal stories as possible, to convince our politicians of the need for improvements.

Their question to you is simple: what has your experience of the public mental health system been?

The public invitation goes on to say “Everyone has a story about mental health in New Zealand. Whether you work as a mental health professional, have experienced the mental health system directly yourself or someone in your family has, your story matters. We don’t need more statistics, the numbers already add up to make it clear that we have a crisis and need urgent action, and still nothing has been done. But personal stories can do what numbers cannot – they can move Ministers to action. Stories create empathy, and empathy creates change.

Find out more here.

Mental Health Foundation Launches Mindfulness Posters

The Mental Health Foundation’s graphic designer Amy Mackinnon has created a series of posters that share the basic practices behind mindfulness. The A2 posters are available in a set of three from the Mental Health Foundation’s new webstore for $39 including postage and packaging.

Each sale is equivalent to the cost of one child in a low decile NZ school attending the Mental Health Foundation’s Pause, Breathe, Smile  eight-week mindfulness course. By purchasing these posters, you’re supporting the Mental Health Foundation to deliver mindfulness training to primary and intermediate students in their school classrooms nationwide.

Guest Blog: Robert Miller on the Social Bonds Pilot for NZ Mental-Health Services

Commentary on Latest Move of New Zealand Government Over Mental Health Care

UntitledLike many Kiwi’s, Robert Miller from the NZ Schizophrenia Research Group recently received a message from Annette King, health spokesperson for the Labour Party, asking him to sign a petition against the government proposal to trial funding mental-health services with Social Bonds. Here, Robert shares a few of his thoughts on this controversial new move to fund mental-healthcare. Social Bonds involves using a private investment model where companies put up their own funds and are reimbursed (with interest) only if certain outcomes are met. The process of ‘procurement’ is now well under way. By March 2015, seven potential partnerships were being assessed, with a view to ‘moving to implementation in the second half of 2015.’ The Government document mentions ‘NGOs, retail banks, and specially created partnerships’, but provides no details of which organisations are to be involved. The first four Social Bonds contracts have been announced and they all have work targets as the defined outcomes.

Greetings from Masterton!

Yesterday, I received two messages on the same topic – the government’s latest initiative for funding mental health care in New Zealand by what it calls ‘Social Bonds.’ One came from Annette King asking me to sign a petition, which I did. The other came from my good friend Julie Leibrich (former Mental Health Commissioner) expressing her serious concern about the government move. Here is her message –

‘National is planning to use Social bonds to fund mental health services.  Social bonds allow Government to contract out services and funding to non-government or private organisations, with agreed targets and timeframes. If the targets are met, Government pays back the investors, and also pays a return on their investment. The return depended on the level of results, up to an agreed maximum. Labour says that the risks of the policy are huge, because in order to meet targets providers are likely to focus on “easier-to-help” clients and not difficult and expensive ones. The Department of Internal Affairs warned that New Zealand should not “engage in trials or implementation of a social impact bond”. There is a good article about the dangers. I think that people with mental illness struggle enough as it is to get good care, and the idea of them becoming Guinea pigs in a social experiment is appalling. So I would be grateful if you would consider the petition, and if you want to, then sign it.’
~ Julie Leibrich, former Mental Health Commissioner

Since the pilot was announced, there has been much comment on the Social Bond scheme for mental health funding, in newspapers, generally highly critical. Let me make a few of my own comments, briefly, because there is urgency here.

(i) Mental health is probably one of the hardest areas of health policy to get right, and this government seems to think it is just about money. It IS about money, of course, but just as important (perhaps more important), it is about organisational culture, sensitive responsiveness to needs of clients, and morale in mental health services. It is quite possible for dedicated, highly trained and skilled staff to deliver a first class service when physical aspects of the service (buildings etc,) are distinctly below par. It is the ‘human capital’ as much as the funding available which matters. These aspects of a good service cannot be measured in the usual way in which profit and loss are computed.

Nowhere, it seems, does one sense that actual persons with their own hopes and dreams are involved. Collectively, they are just ‘a problem’ to be reduced

(ii) The nature of funding streams IS an important factor in delivery of mental health care. In something as complex as setting up an effective mental health service, with its community outreach, it would help if funding (especially of NGOs for mental health care) were not administered in such a way that different agencies who should collaborate, are forced to compete for funds.

(iii) Earlier this year I learned of someone writing a report about mental health for Treasury, found her e-mail address, wrote to her, but never received a reply. Maybe this government move is related to that report, although it has clearly been under development already for some years. In this case the government seems to be moving to get this inconvenient burden off its shoulders. The un-named banks and financial institutions are likely to have their bases outside New Zealand, have no responsibility to the New Zealand electorate, only to their shareholders. Apart from maximizing profits, mental health is an area which is not a money-making business, is not, and never has been capable of really generating a profit, except in a highly distorted sense of market discipline. In addition, I ask: What would be the ‘quid pro quo’ demanded by those private investors? If it seems that targets are not being met, and the return on investment therefore not likely to be forthcoming, what pressures will be put on services to meet the targets? What corners will be cut on ethical aspects of service delivery? What style of healthcare delivery would they require? Would delivery of mental health services become hostage to multinational enterprises, with agenda quite out of line with our own philosophy of healthcare?

(iv) There may be some merits in the social bond scheme as a way to bring about public/private partnership. However, if so, it would be better to test this particular model of such partnership in an easier area than mental health care. It seems as if this is being tried out in the mental health area first because ‘no one really cares too much about this anyway’. Government policy makers should reconsider the choice of mental health as the first place to try out this approach.

(v) In terms of ‘meeting targets’, the devil is in the detail. The main target appears to be getting people with mental health problems into paid employment; but this depends on many factors beyond control of any mental health service. In addition, for many service users, obtaining employment is the end of a long journey. It might be better to emphasize earlier stages of that journey, namely helping to rebuild personal resources of people whose normal development has been undermined by mental disorders. This might include entering and succeeding in higher education. Entry into paid employment would be a natural flow-on from this, which is a more fundamental form of assistance.

Immense flexibility is needed to cope with the individuality and idiosyncrasies of each client… Target-driven systems are unlikely to achieve this

(vi) In any case, this appears to be setting up a ‘pseudo-market’, possibly a subterfuge for covert administrative and government control. It also seems to imply that the government admits that devising a good mental health system is beyond its capability; and somehow, by offering financial incentives, the market in mental health care will somehow magic up a level of intelligence in this area, which is superior to the government’s own. This stretches credibility.

(vii) Administrators do like to set targets, as if the matter of concern is one where commands can be given, and outcomes/outputs delivered according to plan (but, in today’s world, using the ‘invisible hand’ of market forces as an intermediary). Those at the front line of any human services, especially mental health services, know better. In their practice, immense flexibility is needed to cope with the individuality and idiosyncrasies of each client, for instance in matching each client to the most suitable practitioner of counselor. Target-driven systems are unlikely to achieve this. Such flexibility is one of the features that make for a good organizational culture and good morale in those services.

(viii) The government’s plan is one more move – perhaps more dangerous than others so far – to move small aspects of our social services to enterprises based offshore. Others we know about include setting up private prisons, or catering services in hospitals, to name a couple. Who are the movers of this international trend? What are their real objectives? Early in 2014, as part of a resignation document I wrote, when I left committees of RANZCP, I shared a paragraph expressing my concerns, which contained hints of answers to those questions:

“…that entrusting mental health issues to untrained community people has encouraged re-uniting two policy areas which had been painfully separated in the second half of last century. The two areas are mental health and justice. In the nineteenth century in Western countries (and in many other countries still today), the two were not separated. Authorities who could put you away in an asylum were either medical people or JPs. Since 1950, there has been steady progress in prizing these two apart, so that the area where, inevitably, the two overlap, becomes a difficult and highly specialized discipline of its own – forensic psychiatry. I fear there are now accelerating moves to bring these two back together again. With international consortiums now running both private prisons in many countries, and some mental health NGOs, I fear that merging of the two policy areas is gaining momentum internationally, led by those whose ethical perceptions are quite different from most of those who will be reading this document.”

(ix) I have just sent in an abstract to the New Zealand branch of RANZCP for their forthcoming meeting in Hamilton in September. Basically this is about the history of psychiatry. Sadly I conclude that, over the last century a specialty, which, in the 1890s, had the promise to become a respected branch of personal health care, at least on the continent of Europe, was largely taken over by those who sought the most efficient way to administer a ‘social problem’. This emphasis is quite explicit in the Government document: Under the section titled “What is the Government looking for the Pilot to do? we read in its first bullet point “test the concept within the New Zealand context to see whether this is an effective and efficient way for government to reduce social problems” [emphasis added]. Nowhere, it seems, does one sense that actual persons with their own hopes and dreams are involved. Collectively, they are just ‘a problem’ to be reduced. Mental health care has insidiously become linked in the public mind to other ‘nasties’ of social policy, including (from 1834), workhouses and asylums, and then prisons, together with legal sanctions on prostitution, suicide, sexual orientation, street drugs, ‘welfare dependents’ and so on, all those areas that ‘nice people’ do not want to know about. The battle between these two has been raging for the last century, and more. I fear that parts of that battle are now being waged by international corporations, unaccountable to any electorate, probably in denial about the personal aspects of healthcare, or the person-centred ethical precepts, which should guide healthcare.

(x) Now is the time to challenge this outrageous government move.

Robert Miller

Learn More

About the author: Robert Miller was educated in Britain, originally a medical student, until he was overwhelmed by a psychotic disorder. Later he retrained as a neuroscientist and came to New Zealand in 1977 to a position in the Department of Anatomy at Otago Medical School. His research objectives have been to explore the theory of brain function and its relation to mental disorders. He founded and continues to lead the NZ Schizophrenia Research Group in 1994. From 2009-2014 he served as community representative on committees of the Royal Australian and New Zealand College of Psychiatrists (RANZCP) where he learned that one of the biggest problems in mental health is to get different players to listen to one another. Robert tries to stay independent of all organisations, so as best to encourage them to work together. He is not a member of the Labour Party.

Survey on Plans for an International Peer Leadership Academy at Yale University

An international steering group is planning an international ‘peer leadership academy’ at Yale University. They are seeking the views of people who are involved in mental health systems in any role on the proposed academy.

The International Initiative for Mental Health Leadership and Mind Australia are supporting the development of a proposal for an international peer leadership Academy to be based at Yale University and collaborating centers in other countries. The purpose of the Academy will be to train and support emerging and established peer leaders in mental health, from low income and high income countries, to advocate or manage system transformation from a lived experience perspective.

Please take part in this survey if you have an interest in this issue or share it with relevant  friends and contacts via email or social media.

To take part in the survey go to the Peer Leadership Academy Survey

 The deadline for participating is Saturday 20 June 2015.

Reprints of popular Mental Health Commision resources now available

Due to popular demand, new versions of “Oranga Ngākau – Getting the most out of Mental Health and Addiction Services: A recovery resource for service users” and “When someone you care about has a mental health or addiction issue” are available in hard copy or by download.

“Oranga Ngākau” is easy to understand and provides valuable information about what to expect from treatment in mental health and addiction services. This includes a glossary of terms used during care, as well as describing different possible scenarios when using these services for the first time.

“When someone you care about has a mental health or addiction issue” is a resource for those who are supporting others. Read about the best ways for family, whānau and friends to help people close to them who are in care, as well as how to find support for themselves, should they need it.

Contact:
Kim Higginson, Information Officer, Mental Health Foundation
info@mentalhealth.org.nz

Synergia Report -Think Differently, Ministry of Social Development

Think Differently, led by the Ministry of Social Development, is a social change campaign that seeks to encourage and support a fundamental shift in attitudes and behaviours towards disabled people.

It works across community and national level activities to mobilise personal and community action, to change social attitudes and beliefs that lead to disabled people being excluded, and to increase people’s knowledge and understanding of disability and the benefits of inclusive communities. To support this work, Think Differently commissioned a review of the published and grey literature to understand the factors that cause disabled people to be socially excluded. The review is designed to inform the further development of the Think Differently Campaign. This summary focuses on understanding social exclusion and its key drivers. The methods and a more detailed analysis of the key concepts are provided in the main body of this report.

 

 

Dr Gwyn Lewis: a modern understanding of arthritis

18th April University of Auckland, 10.00 – 11.00

Presenter Dr Gwyn Lewis:  Gwyn’s presentation will focus on a modern understanding of arthritis related pain, avoiding pain pitfalls and future directions in the treatment of arthritis related pain.

Associate Professor Gwyn Lewis is a neurophysiologist based at AUT University’s North Shore Campus in Auckland. She obtained a PhD in motor control from the University of Auckland in 2003. Gwyn had an extended post-doctoral experience undertaking research in motor control, rehabilitation and neurophysiology at the Rehabilitation Institute of Chicago. She currently spends half her time teaching in AUT’s physiotherapy programme and the other half undertaking pain research in the Health and Rehabilitation Research Institute. Most of her research is in pain neurophysiology and how it relates to persistent pain development, pain modulation pathways, and the cognitive factors and psychosocial influences affecting pain.

Contact: Carol Lovatt, Northern Regional Administrator, Arthritis New Zealand, Kaiponapona Aotearoa
Ph: 09 523 8900
Email:  carol.lovatt@arthritis.org.nz
Support the person in your family who has arthritis.
Phone 0900 33320 OR Donate via our website www.arthritis.org.nz

Canterbury Mental Health Directory and Guide

Engage Aotearoa recommends the Canterbury Mental Health Directory as a great place to start if you would like to seek help with an emotional, relational or mental health issue. It lists a number of support groups in Canterbury.

If you are asking yourself questions like these: “What sort of help do I need? Who should I go to? What will it cost? How private will it be? Will I have to wait?” this directory attempts to answer these and other questions in understandable language and with your best interests at heart. The directory can be found here. (Note from Engage: You could also try out our Community Resources Directory, which has some South Island entries.)

The website also features a superb guide for starting out seeking help, found here.

5 things I’ve learned about surviving my darkest struggles

RecoveryNotes_WebImage
Five things I’ve learned about surviving my darkest struggles

Recovery Note #3

~ Taimi Allan


1. De-claw the Bear

Talking about the most difficult stuff (the unwanted thoughts, the frightening images, fears, guilt and panic) takes their power away. These things are waking nightmares designed by my brain to purge the rubbish and if I don’t find a way to let them out and dispose of them they become a self-destruct mechanism. Speaking them aloud to someone empathetic and non-judgmental I can trust helps me to challenge their hold on me, come up with more balanced perspectives and talk through cause and solution.

2. Look for physical and environmental causes

Sure there are some moments where my distress/depression/mania/psychosis is an equal and opposite reaction to an external, significant, negative event; those moments are really tough and life feels very unfair. The upside of horrible things happening to me though is that it’s easy to see why my brain is in meltdown, and get support and empathy from others. Sometimes, however, it just hits me like a sledge hammer from seemingly out of the blue. In these times my experience tells me there is usually a physical cause, maybe my hormones have gone haywire, I’ve developed a food allergy, eaten unhealthily for too long (or not eaten at all) or typically, I’ve not had enough sleep. I know now that if I address the physical stuff, nurture my temple then my mental health follows.

3. Avoid the Sirens-song of Substances

We all know the myths of sailors lured by beautiful Siren song only to become shipwrecked on the rocks. It is very easy in my darkest moments to reach out for the easiest means of escape. “Self medication” for me nowadays is junk food and wine. In my darkest moments it is tempting to use them, or something more destructive as a quick way of blocking out, avoiding or putting off dealing with what’s really going on. I learned the hard way that even taking a single step in this direction when I’m unwell is bad, bad news. As difficult as it is, I need to remove the temptation completely from my home, my friendships and my life until the moment has passed and I feel in control enough to simply eat respectfully and drink in moderation.

4. Observe moments of choice

Mental distress is like a pot-bellied stove, it gets stronger by feeding on every little piece of negativity and fear and yet it is warm and inviting. It is easy to fall into the comfort of distress, it sounds contradictory but life IS unfair and horrible so sometimes the only thing I really want to do is escape under the bed-covers, take a respite from responsibility and shut out the world. In every single millisecond however I know I have a choice to turn that around. I forgive myself for needing a moment to wallow, then as soon as I notice the moment that don’t have to punish myself or anyone else, I make the conscious choice to do something different.

5. Take responsibility

Here’s the truth as I see it for me; it is not the rest of the world, the people around me, services, doctors or pharmaceuticals job to ‘cure’ or ‘fix’ me. They are helpful aides when I need support, but without my buy-in, they actually don’t have much effect. In fact, if I blame anyone or anything outside of myself I know the situation very quickly deteriorates. That doesn’t mean I need to blame myself, but adopting a radical acceptance of the situation I’ve found myself in and a willingness to do everything I can to improve it gives me back some semblance of control. It’s fair to say that when I’m at my worst, I feel completely out of control, so this step towards autonomy is imperative to becoming whole again.

~ Taimi Allan

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About the author: Taimi Allan has worked as a mental health consultant since 2009. She is most well known in the field for innovative and engaging health promotion strategies that challenge attitudes, inspire creativity and entertain audiences.

Read more Recovery Notes here 

Recovery Notes is an Engage Aotearoa project that asks people to share the top five tips and insights they have learned from or about their personal experiences of mental-health recovery or being a supporter.

Write your own Recovery Note

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Copyright (c) Engage Aotearoa, 2014