Accessing the System – Mental Health and the Deaf!

smileyEarlier this year I had a nervous breakdown. This later lead to depression and anxiety over a period of a few months. For the first time I became a client of Victoria’s mental health support system. It was a revealing experience.Last week I had dinner with a few deaf friends who have had firsthand experience of the Victorian mental health support system. The experience of my friends mirrored my own.

I have no wish to be disparaging of the wonderful people who make up the Victorian mental health support system. They are, by and large, a wonderfully dedicated group of professionals. They work in a stressful and challenging environment and do a terrific job. The problem is that they are expected to be able to meet the needs of such a wide range of people, including people who are deaf. This is an impossible task.

My own experience began when I broke down. I was at work and began sobbing uncontrollably. I sought the support of a colleague. My colleague acted quickly and organised for me to see a counsellor later that day. Obviously, being deaf, I needed to arrange communication support to access the counsellor. This is no easy task when you are already distressed. Auslan interpreters are also in short supply.

Interpreters are generally not available at short notice. I was largely out of control and I was expected to organise my own support. I could have requested that the counsellor organise the interpreter but experience tells me that most counsellors would not even know where to start.

Luckily enough I still had the presence of mind to reach out for help. I sent a text to my wife and closest friends, one who happened to be an interpreter. When I went to this first counselling session my interpreter friend interpreted for me. There was no payment involved. It was totally pro-bono. I was very lucky indeed.

There are plenty of people who are deaf and experience mental health issues but do not have the same knowledge or contacts that I do. What happens to them? Who supports them? How will they get the same quality of support that I did? Lots of questions and so few answers. The reality is that, more than likely, they are required to fend for themselves.

The risks from lack of communication during a mental health crisis are many. These risks are compounded by the diversity of needs of many people who are deaf. What of those that rely on sign language interpreters, how do they get one at short notice when there is a crisis? What about people who are deaf who also have literacy and English language issues? Or what of people who are deaf who do not sign and rely on lipreading and quiet environments? The risks of misdiagnosis from communication breakdowns are many.

Sarah Bowen, B.A., M.Sc. notes that, “It is generally agreed that the best communication is achieved where health care providers and patients speak the same language.”   Bowen also notes, “There is compelling evidence that language barriers have an adverse effect on initial access to health services. These barriers are not limited to encounters with physician and hospital care. Patients face significant barriers to health promotion/prevention programs: there is also evidence that they face significant barriers to first contact with a variety of providers.” Finally Bowen notes that, “…evidence also demonstrates that they have reduced access to mental health and counselling-related services.[1]

Bowen is from Canada and her paper relates not only to people who are deaf but also to people from ethnic backgrounds who do not speak in the official languages of Canada. What is clear is that language is a significant barrier at the first point of contact in the health system. This includes mental health crisis type situations.

My experience of accessing support based on my own mental health crisis was far from ideal. A few weeks after my initial breakdown I had an episode that required me to attend hospital. My wife attended with me. She is also deaf but hears much more than I. She acted as my interpreter. Of course this is not ideal. My wife was already stressed from the distress that I was in. To have to interpret for me compounded this stress immensely.

Upon being admitted an interpreter was requested. We were told that there could be up to a 48 hour wait. While the nurse and doctors were wonderful, the burden placed on my wife was immense. I was admitted early in the morning. My wife had to return home to check on the kids so I was left on my own for a time. During the time alone I was visited by a woman. The role of this woman I am still not sure because communicating with her was difficult. She could have been a doctor, a nurse or simply a social worker, I have no idea.

The woman was obviously part of the mental health support team.  She had a disability, cerebral palsy. She walked with some difficulty. Her speech was probably ok to understand but because of the muscle coordination issues that she had she was difficult to lip-read. She communicated with me in a mixture of writing and speech. We got by but it was not a smooth experience. I managed to understand that – ‘I needed a rest’ – and that she wanted to admit me to a clinic for a few days.

After finding out my health insurance status would not cover the cost she later changed her mind. She said that I would go home and be assessed by the mental health team at home. It was not easy to garner this information because I was also distressed and exhausted. I am lucky that I have strong language ability and managed to get enough information to understand the basics. I do wonder what would have happened had I been a person who did not have strong language skills. It really is a recipe for disaster.

Poor communication could lead to any number of mistakes. It could lead to the wrong diagnosis and hence prescription of the wrong medication. Lack of communication could also lead to medication being taken wrongly. Or even worse, medication being prescribed that the patient might be allergic to. Indeed Bowen confirms these risks in her paper when she states that there are often, “ …differences in patients understanding of their conditions and compliance with treatment when a language barrier is present.”

After leaving hospital I was told that the mental health team would be visiting my home the next day to carry out a thorough assessment. Naturally I requested that an interpreter be present at this meeting. I was promised that this would be arranged. It was not. In total I was visited by the assessment team and then the mental health nurse three times – An interpreter was never booked for any of these appointments.

During the assessment I again had to rely on my deaf wife for communication support. Medication was prescribed. The possible side effects were explained. Any number of questions were asked about my condition to assist the team with diagnosis and planning of my support. Again I have to ask that if I had been someone without communication support and who did not have a strong language base what might have happened. It is really quite scary.

My experience of depression and the use of medication was relatively short. A friend who is deaf told me that they were in hospital with depression for three and a half months. When one is admitted to hospital for depression there are any number of treatments. Of course there is medication but there are support programs like group counselling, activities and so on. My friend noted that when in hospital there was no way that they could fully participate because interpreters were not provided for any of these activities. She was told an interpreter was too costly.

Indeed if interpreters were provided it was only for a limited time. This meant that for the most part, while in hospital, my friend was extremely isolated. My friend felt quite sure that the reason they took so long to become well again was that the isolation experienced in the hospital actually contributed to the worsening of their depression.

At some mental health type clinics treatment involves the imposition of limited access to social media and the outside world through technology. For the patient who is deaf this can be extremely isolating. For them there is little by way of access to facilities and activities because most of these activities require hearing.

Another friend commented that at the clinic that they attended there was only one communal television. While it had captions they were never turned on. My friend would get up and watch TV after everyone had gone to bed just so that they could get some access to captions. The rest of the day was spent largely alone. The isolation did not assist my friend to get well. It in fact contributed further to their depression.

The recent report from Deaf Victoria showed that in most cases, at most hospitals, people who are deaf rarely get access to interpreters or any communication support. Reliance on family members is common. Whether it is medical or mental health good clear communication at the entry point is essential and throughout treatment. This is particularly so in the area of mental health where treatment is so diverse.

Perhaps as advocates we need to turn our attention to this very important area that is mental health. Developments and improvements in the area of mental health support for patients who are deaf needs to be addressed.  Make no mistake, patients who are deaf can be at extreme risk when accessing the mental health support system. Improvements are desperately needed.

[1] http://www.hc-sc.gc.ca/hcs-sss/alt_formats/hpb-dgps/pdf/pubs/2001-lang-acces/2001-lang-acces-eng.pdf

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Deaf Parenting Laid Bare – By Gary Kerridge

kidBefore I got married I had six theories about bringing up children; now I have six children, and no theories. ~John Wilmot

I am a parent of three robust lads. They are great lads too. We are all best mates, most of the time anyway. I pity my poor wife sometimes because we lads are all sport nuts. The footies on we watch, the soccer is on we watch – particularly so if it’s the English Premier League (EPL). The lads and I sit awake into the wee hours of the morning watching EPL. Sometimes Fin is upstairs watching Manchester United on a crap and probably pirated media stream. Fin made the mistake of supporting them while I and the other two are rabid West Ham supporters. Three against one – There is only one team that we will watch on Fox. The mother? In bed long ago.

And the poor mother. Some sop romantic thing comes on and there are automatically groans of despair all round as she claims the TV to watch it. No matter, there is the Playstation. Of course the game of choice is FIFA 14. Sometimes we play alone and sometimes we play together. Usually it is alone so that we are all arguing about whose turn it is.

“But daaaaaad you’ve been on it for three hours!!!!!!”

“But kiiiiiiiddds I only play Fifa from start to finish once a year.!!! –

“But daaaaaaaad it takes you 12 months to do that!!!”

Meanwhile on the TV, or in the bedroom and most often in the bath, the mother is watching PS I Love you for the 5 000th time. Or it might be Phantom of the Opera or Les Misérables . No there isn’t a TV in the bathroom, she watches it on her laptop. It’s not all bad, the eldest and the youngest are great fans of Dr Who, as is the mother. It keeps them together.

Of course our kids are all CODA’s – Children of Deaf Adults. There are some advantages of being a Child of a Deaf Adult. All three abuse these advantages at will. I mean they will get up after they should be in bed to watch stuff on TV, late at night, knowing that we cannot hear them or the TV. Or the eldest will pretend to go to bed and sneak out and spend another four hours on the Playstation and go to bed around 4am in the morning. They will swear knowing we wont hear it and one will dob the other in. The dobbee will then claim that they didn’t and that the dobber was trying to get them in trouble . God knows what else they do. They naively think that we don’t know about their little secrets, but of course we do. The looks of profound innocence and the lame excuses they come up with when found out are things of great amusement. They are ratbags, the three of them.

It is interesting being a parent who is deaf. Particularly when the kids first start to realise what it means to be deaf. Most CODA’s will tell you stories of when they had to ‘rescue’ their deaf parents from sticky situations. It’s hard for the kids when they see their parents struggling in communication situations. Around the ages of 6 and 7 my kids seemed to have this great need to ‘save’ me or their mother.

Now I am a lazy communicator. I am one of those deafies that faced with a communication difficulty at a place like McDonalds or a shopping line will just nod in the vain hope that a nod is what is required. Of course this is fraught with danger. You may be asked if you want sugar in your coffee, which I hate, and you will end up with sugar in your coffee. Or more commonly you are asked if you have a Rewards Card, which I don’t, and the poor assistant waits with a bemused look for you to provide it when you have wrongly confirmed that you have a Rewards Card. Most deafies are guilty of this and I am sure a fair few reading this are cringing at the memory.

CODA’s observe this over a period of years. At some point in their development it twigs that mum or dad have not heard properly and they feel the need to hop in and save them. What will happen is that at a place like McDonalds they will answer the question before the parent has had a chance to. The conversation will go something like this:

“ Do you want sugar with that?”

“No, he doesn’t have sugar”

The parent, not having heard any of the exchange, invariably nods. The poor assistant then looks bemused. The CODA then rolls his eyes at the parent and signs or exegerrates their lip movements – “They asked if you want sugar and you don’t have sugar.” The CODA then looks to the assistant and then to the heavens as if to say – “Sorry my dad’s such an idiot.”

And of course, if your kids are ratbags like mine, they will find an opportunity to abuse these situations no end. Another conversation at McDonalds will go like this:

Assistant: “Do you want to upsize that?”

CODA: “Yes Please”

Of course in this particular situation the deaf parent has actually been able to lipread the question and answers just after the Coda has said “Yes please” with a “No thank you.” Naturally the McDonalds assistant is totally confused and they are usually left looking from child to parent in a desperate attempt to work out what is wanted. The deaf parent then looks to the child to work out what has happened and the child is usually beetroot red and staring down at their shoe laces. CODA’s can be cunning. Deaf parents are well advised to tell them early that the parent and only the parent answers the questions, rightly or wrongly.

“But you always answer wrong dad!!!!”

“Well that’s my problem isn’t it!!!”

The trick is to just keep reminding them that it isn’t their problem that mum and dad have problems communicating and that it is not the CODA’s responsibility to fix it. You have to be quite firm with this otherwise the CODA is forced to take on responsibilities that are way beyond their tender years and way too early. And of course the ratbags, like mine, will try to take advantage from time to time. That said, it cannot be easy for the CODA to watch their parents struggling sometimes. As deaf parents we need to understand that.

Being a parent is the best and most rewarding thing that a person can do. I firmly believe that. It can be tough to be firm but a child needs a firm hand, particularly in adolescence.

Adolescence is where your kids begin to find their way in the world. They begin to experiment. Relationships, sex, alcohol and pushing the boundaries as far as they can are the norm. But still you must be firm and love them just the same. Even when they burn a hole in your decking, or you find a beer in their bag or even when more recently a taxi driver ends up at your front door demanding payment cos your kid couldn’t get out of bed in the morning and was running late for an excursion that they didn’t want to miss. Yup, its exasperating, rewarding and quite often very funny all at the same time.

And it’s all worth it – I think! 😀

The trouble with learning to parent on the job is that your child is the teacher. ~Robert Brault,

 

 

If Marx was Deaf

marxWorkers of the world unite; you have nothing to lose but your chains.

Karl Marx

For many years this famous quote from Karl Marx was used to rally the workers of the world. In Marx’s time, and even today, workers were horrendously abused. Marx is commonly thought to be the father of communism but this is far from the truth. Marx, essentially, saw that rich industrialists abused the worker. He sought to level the playing field so that wealth was more evenly distributed.

I have no wish to go into a boring diatribe of the imbalance of wealth. In a nutshell Marx sought argue that the worker and the owners of industry needed each other. Without one, the other could not exist. In the 18th and 19th century factories were nothing more than sweat houses. While the industrialists got richer the workers got poorer and sicker. Hence that famous quote about workers – “….you have nothing to lose but your chains.”

I raise the spectre of Marxism because the rights of people who are Deaf and hard of hearing are under threat. Right now the Liberal Government is trying to consolidate disability under one roof. To be fair this is not something that is uniquely Liberal. The Labor Government, I believe, had a similar philosophy.

Governments, both Liberal and Labor, believe that disability is too fragmented. They do not get why there are so many different groups fighting for the rights of people with a disability. Indeed Bill Shorten often warned that too many disability groups sending the Government conflicting messages was a recipe for disaster.

Last week I heard a rumour that disability advocacy organisations are to be streamlined. The current Government believes that there are too many of them. While they have not really cut funding to disability advocacy groups, it would seem that the Government wants less disability advocacy groups doing more for the same money. It seems that the Government is particularly confused as to why the deafness area has two peaks. The cultural and medical perspectives of deafness are too much for the Governments befuddled minds to comprehend.

The simple answer for the Government is not for our two Deafness peaks to merge as one, rather it seems that they want to dissolve both of them. This current Government wants to see deafness issues absorbed into a larger disability peak, a consortium so to speak.

What this means is that the Government does not want a Deafness Forum and it does not want a Deaf Australia. It wants all issues of Deaf and hard of hearing absorbed into one larger disability peak. The reality is that both Deafness Forum and Deaf Australia only have funding until December and the Government wants them absorbed into this larger disability consortium. Both organisations have the fight of their life on their hands. It is one that I fear that they cannot win this time.

Cast your mind back to the 80’s and 90’s. Through the actions of our deafness peaks so many things were won. Free TTYs, the National Relay Service, Auslan for Employment later to be expanded to captioning, greater TV captioning and the National Auslan Booking Service to name a few. You will note that I do not list captioning at the cinema here because I believe that was a loss rather than a gain.

It is true that it was not the deafness peaks that were solely responsible for the gains that were listed above. However they helped by constantly keeping the issues under the Governments nose. I have been critical of our deafness peaks often but they served an important role. I strongly believe that we are about to see the demise of both of them.

I have no faith that a “Disability Consortium” will provide the deafness sector with the strong voice that they need. I would be far more comfortable having one Deafness Peak that could work out a process to represent the needs of both the Deaf and Hard of Hearing communities. It would seem that it might be too late even for that.

But that is the situation right now. Deaf and hard of hearing Australians stand to lose their voice in the muddle of a mainstream disability consortium. It scares me. People who are Deaf and hard of hearing need to take up the fight to the Government urgently.

Both Deaf Australia and Deafness Forum are probably restrained in what they can say against the Government because they are probably in the midst of a futile fight for their life. It would not surprise me if the Government has actually placed an embargo on them making any public comment on the issue.

What this means is that people who are Deaf and hard of hearing need to take the fight to the Government themselves. They need to let the Government know that the needs of people who are Deaf and hard of hearing need to be represented strongly and independently. Even if it is just one major Deaf and hard of hearing peak rather than two.

If people who are Deaf and hard of hearing remain silent they run the risk of being swallowed up into an enormous disability consortium where there needs will get scant attention in an organization that will have a largely medical and care focus.

 Deaf and hard of hearing people of Australia unite, you have nothing to lose but your rights!

 Remain silent at your peril – Fight for your rights now!!!

 

 

 

 

 

Speaking Their Minds!!!

ToneI love the Liberal/National Party (LNP). I love them because, without fail, each day someone from their front bench will say something that is both entertaining and cringe worthy, all at the same time. Followers of politics will know that the LNP are the bastions of free speech. It was Australia’s rather vile Attorney General, George Brandis, that suggested, In a free country people do have rights to say things that other people find offensive or insulting or bigoted.” A few weeks later the esteemed LNP, in direct contradiction to their policy, shut down all debate on free speech in parliament, thus rendering the ability to challenge the LNP view as moot.

Christopher “Whyney the Pyne” perhaps best summed up the free speech hypocrisy of the LNP in his approach to monitoring his Facebook page. Anyone that has commented on Whyney’s page will know that if you do not agree with him he will just block you. The problem is he blocks you but allows you to still see his posts. What’s worse, in a further insult to your intelligence, he allows you continued access to the share button. As if, after vehemently disagreeing with him, you would want to share his drivel.

His approach to free speech and immense hypocrisy was demonstrated with this rather amusing quote that he uttered in an interview with Erik Jensen, “I have 6026 likes on my Facebook site, which is a few more than yesterday, I usually go through the comments, because there will always be a rogue troll who pops their name down not because they like me but because they don’t like me, which I can’t fathom. And I remove them because this is a ‘likes’ page.”  From the mouth of the babes as they say.

Even though the LNP won’t allow others free speech it is just as well they practice it themselves. Why? Because by them practicing free speech we get to see exactly what they stand for. If you really want to know what the LNP stand for take a look at this astonishing collection of qutes from our lame excuse of a Prime Minister. Mr Abbott is scary.

On torture –Sometimes in difficult circumstances difficult things happen”.

On women“I don’t think that it’s a bad thing at all that we always have say – an enormous number of women simply doing house work.”

On Education“It’s all very well keeping kids at school past year 10, but they have to be the right kids being kept at school past year ten.”

On climate change The climate change argument is absolute crap, however the politics are tough for us because 80 per cent of people believe climate change is a real and present danger.”

On cars and pollution – They’re even good for the environment because cars that are moving spew out far less pollution than cars that are standing still.”

On same sex marriage – “I’m not someone who wants to see radical change based on the fashion of the moment.”

On the Asylum Seekers – “Jesus knew that there was a place for everything and it’s not necessarily everyone’s place to come to Australia.”

And quite simply this one is a WTF moment – “If we’re honest, most of us would accept that a bad boss is a little bit like a bad father or a bad husband … you find that he tends to do more good than harm. He might be a bad boss but at least he’s employing someone while he is in fact a boss.”

Keep it up Tones. Right up to the next election preferably.

But anyway the LNP certainly practice free speech. Joe Hockey rivals Mr Abbott for foot in the mouth politics. Of coursed Hockey, after having handed down the LNP’s immensely unfair budget, was photographed smoking a cigar on Parliament’s balcony and then went for a little jig in his office.

This is the same guy screaming that the, “.. Age of entitlement is over.” This is also the same guy calling people on welfare “leaners” while maintaining billions of dollars of subsidies to mega rich mining companies. He and Social Services Minister, Kevin Andrews,  seem to think that the imagined economic crisis that Australia is facing is the sole fault of people on welfare. The fault seems to be particularly with those on disability and unemployment benefits. These two giants of empathy will have people who become unemployed receive no income for six months. Just how these people are expected to live is not explained. But hey …. Living is an entitlement so ….

Graham Innes, who just got turfed as Disability commissioner, was incensed at the Government suggesting that people with a disability are “Leaners”. Said Innes, “I prefer a more positive, and less judgmental society, where everyone’s contribution is accepted and valued.  I want entrances where everyone – not just people who use steps – can come in. I communicate with Australian Sign Language (Auslan) so everyone – not just hearing people – can understand. This makes a more inclusive and more sustainable society.”

Indeed the disability sector, and people with a disability themselves, are responsible for a thriving disability economy. There are whole industries focused on disability. Who makes wheelchairs? Who makes hearing aids? Who helps people with severe physical disabilities to get out of bed and have a shower in the morning? Who puts captions on TV shows and movies? Who develops the software that enables people who are blind to read print and use their computer? These things don’t grow on trees you know. People are employed, being fed and paying off their mortgages because people with a disability exist.

I don’t know how many people work in the sector as a whole because statistics generally focus only on care. If you want the real numbers you need to include a whole host of professions – teachers, therapist, support workers, accessible cab operators, manufacturing and so on. What I do know is that the NDIS needs an extra 80 000 workers to meet demand, about double the number that are currently employed. It’s a kind of win, win here isn’t it? I am not sure who the lifters are and who the leaners are. But as Innes said we need an approach that considers, “… where everyone’s contribution is accepted and valued.”

Mary Shelley, author of Frankenstein, wrote these immortal lines , “…The whole series of my life appeared to me as a dream; I sometimes doubted if indeed it were all true, for it never presented itself to my mind with the force of reality.”   Australians having elected the LNP into power must be feeling similar sentiments. But no matter because with every passing day and with every utterance that they make the LNP are showing their true colours. As they continue to utter their bigotry Australians become more appalled. Only two more years and Australia can turf them out. There is a reason Abbott is the most unpopular PM ever – But how much damage can he do in two years? I shudder to think!!!