There’s an Election Coming Up

In case you hadn’t noticed it’s election time. Did you know that this election you get four votes. That’s right, four votes.

As well as your MMP electorate and party vote, you also get to vote yes or no to retaining MMP as the electoral system. Regardless of what you choose, you get to vote for your preference, should  the majority decide they no longer want MMP. Those four alternatives are:

• Supplementary Member (SM)
• Preferential voting (PV)
• Single transferable vote (STV)
• First Past the Post (FPP)

It’s worth finding out more about these alternatives voting systems so you can make an informed choice.

On Sunday morning I listened to an Insights debate on Radio New Zealand National . A number of ‘experts’ and ‘has-beens’ (depending on your perspective) from NZ Politics advocated for their preferred voting system.

I thought one of the most interesting comments of the debate came from Jeanette Fitzsimmons, an MMP supporter. Jeanette asked the questions “What are communities of interest?” and “Who should MPs be accountable to?” In the days before we could travel freely, our community of interest was local and it made sense to have an electorate MP representing our local  interests. But that’s not necessarily true today is it?

Jeanette cited a couple of examples of communities not built around geography, one being the disability community.
I looked at my own experience in the disability community, and tended to agree with her. Not many people I know in this context are in my electorate. My community is a broad, dynamic one and its members and locations can change depending on the current focus or need.

I’m going to think about this as I mull over the options. I’ve heard quite a bit of scorn poured on list MPs, but some of that is directed at the process that gets poor-performing electorate MPs in the back door to parliament as list MPs. If MMP is returned as the preferred option, there will be a review.

There’s no question that our parliament is more diverse than it ever was under FPP, and I would hate to see us go back to that system.  Have a listen to Insights for an interesting and informed debate. I’m going to listen again.

The Transition Generation

Transition is the current buzz word in one sector of the intellectual disability community in Wellington. The word ‘transition’ refers to a period of preparation and moving from one thing to another. In the context of the current discussion, it’s about young people moving from school to – well whatever there is for them to move to.

Currently in Wellington the choices are fairly limited, to the point of being virtually non-existent (in a practical sense) for some people. The range of what constitutes an intellectual disability and therefore the needs of the individuals is so diverse that it’s very hard to cater to everyone’.

Service providers are trying to create something that caters to a wide range of people. The way I see it, it’s a bit like trying to put fully functioning 17-year-olds in the same classroom as 5-year-olds and providing something that suits both age groups and everyone in the middle.

But it appears moves are a-foot to address gaps in vocational services. One provider has already held meetings with parents of the transitionors -young people who have just left school, or are about to leave soon. And they’ve announced an informational evening where they will brief us on ‘vocational modernisation.’

The flyer I received in the mail says it will be ‘presentations from people with intellectual disabilities and staff.’ For some in our community this may represent light at the end of the tunnel, and the hope of a vocational service that will meet the needs of young people. Sadly my first reaction was that if someone with an intellectual disability can talk about the service, it probably won’t be suitable for someone with the level of disability that my young man has. Cynic that I am, I’m more than happy to be proved wrong. But first I’d like to know more about it. And here’s my problem.

The RSVP provides only a phone number for the receptionist at their office. With due respect to the receptionist, I don’t think she (no sexism intended – it is a she) will be able to answer my questions. Which means she’ll put me through to someone who can, or she’ll take a message and someone will call me back. Now I’m guessing the person I need to speak to is, like me, time poor. So why isn’t there a simpler way to get the information I need? Leading a busy life means I want these details before I commit my time. I’m not really interested in potentially playing telephone tag with someone to get my questions answered.

You see, people of my generation are also transitioning too. We are transitioning from old-forms of communication, like letters, flyers and telephone, to new forms.

That’s not to say that these old forms don’t still have their place and a great number of people still prefer traditional means. But in 2011 they should sit alongside new, modern means of communication that are convenient for transitionors.

Believe it or not, email too is now acquiring the tag of ‘old-fashioned’, partly because it’s just not that efficient. For sharing information, I think you really can’t beat social media. Yes, I know some people don’t like Facebook, but it’s hard to deny that it is efficient.  And you don’t even need to have ‘friends’ any more to follow what’s going on.

Many people, including people in my generation, like to share – you only need to spend a bit of time on the web to see this. Forums and blogs, like this where you can leave comments and generate discussions are everywhere. It’s how many of us now keep up with what’s happening in our networks, our community, our country and the world.

So what I’d like to see is these disability providers embracing social media as a way to share information alongside paper, phone and email.
My questions can be seen by others, I can see theirs, and all of us who use this forum can see the answers. We can make really informed decisions about how to spend our limited time. And I can’t help but think that over time, if organisations use it properly, it would make better use of their time too.

Flyers in the mail with phone numbers as contacts just don’t cut it for me anymore. My world is cluttered with information I need to sort and prioritise. Organisations who want to get their message to me have to first connect with me. I’m trying to listen, but in my world of information overload, I’m having trouble hearing you when you mail me pieces of paper and invite me to phone you.

In the meantime, if I find out more about the transition buzz in Wellington I’ll be sure to share it here. And I hope you’ll share it with your friends and acquaintances too, preferbaly via a public forum, of course

Letting Go of James;

“How one family copes as their 16-year-old, autistic son starts full time residential care.”

I just listened to a BBC documentary called Letting Go of James, a story about  16-year-old James who has severe autism.

This  half hour documentary is about James’ transition from home to a residential school.  James’ family talk honestly about the emotions they experience as James leaves home.  I can relate to many of the  experiences this family has had over the years, and their emotions during the transition. I know it will be close to the heart of some readers of this blog too.

Letting Go of James is available  on the BBC for six days from the date this blog is published. Many documentaries on the BBC are archived to podcasts. I will post an updated link if this one is.

 

 

 

Who Misses Out in Health Service Rationinig?

Pharmac has been in the news a fair bit recently. It pops  up from time to time, and this time it’s because of our negotiations with the USA over the Trans-Pacific Partnership or TPP, a Pacific free trade agreement.

There are concerns about Pharmac’s accountable, transparency and openness to innovative medicine, according to Medicines New Zealand,  an  association  that represents  companies engaged in research, development, manufacture and marketing of prescription medicines.

An association with an obvious bias. However Medicines New Zealand did have an interesting opinion piece in the Dominion Post recently which raised one or two valid concerns about the drug-buying agency. But on the whole  I think Pharmac does a pretty good  of allocating scarce  resources.

Last week I a listened to an interview that had Pharmac squarely in the middle.  Allyson Lock has Pompe, a degenerative, neuromuscular condition. It sounds like a truly horrible disease , and there is no cure, only treatment. But the treatment is a drug that Pharmc won’t fund. Allyson said that she has been before a Pharmac committee to put her case to get the drug funded under special provisions. And she says  that at that meeting Pharmac put it to her that if they fund it for her, it will be at someone else’s expense.

I find that ‘guilt trip’ appalling but sadly it’s not the first time I’ve heard of professionals in the health system using it. And though it’s an awful thing to say to anyone – and shouldn’t be said to someone in that situation,  it is what happens. That’s because we have to ration our health resources. It’s not just New Zealand, every country rations health services in some way.

In the USA, for example,  it’s rationed by your ability to pay.  There, you can probably have any drug you need, so long as you can afford to pay for it. Pharmac limits the range and availability of drugs  to keep within its budget and provide a service that caters to the whole population, not just the rich. Neither system seems fair, but in my opinion, one system is much fairer than the other.

Two years ago I was part of a group that looked at a fairer way to allocate equipment to people with disabilities. We found  that in the current system, some decisions are made subjectively  because there isn’t a good mechanism for assessors to objectively judge one case against another. They are sometimes swayed by emotional factors, and this usually doesn’t lead to good decisions.

We saw examples where equipment was purchased and then wasn’t used because it was too complicated or difficult to use, or it didn’t actually meet the intended need.  What a waste of tax-payer money.

I understand a new system is being piloted which, if fully implemented, will result in better decision-making. Will it be fair? The outcome won’t always be fair, because with limited money available, someone will always miss out. But the process to get there will be much fairer. Which brings me back to Pharmac.

There’s much more to the Allyson’s story and The New Zealand Organisation for Rare Disorders (NORD) is advocating on behalf of her and other people who miss out on life-saving drugs because their diseases is so rare. You can read an article about that here.

NORD’s chairman John Foreman said in the article that “fairness and equity should be part of the whole decision-making process.” He’s right, and that ‘s why I found it rather disconcerting hearing Allyson’s case  put to Pharmac Medical Director Dr Peter Moodie in such emotional terms. Because sad as it is, there are other people in New Zealand in equally distressing situations.

Some people will inevitably always miss out. Has Pharmac got its decision-making processes right? I don’t know the answer to that, and there probably is room for improvement. One day it might be you or me who misses out on a life-saving drug, and we won’t think it’s fair.

Or elsewhere in the health system we’ll be denied an operation, a treatment, a mobility aid, a service …. I hope if it’s me or one of my family, that I would be able to accept it if I know the process that led to that decision was an equitible one, one where emotions are left at the door. They have to be if the system is going to be fair to everyone.

The irony is  that what  Allyson Lock was told is true -  if Pharmac funds the drug she so badly needs, someone else will miss out. And sadly that’s not likely to change, whatever internal changes Pharmac makes.  Because Pharmac will still have to work within its budget, and with the financial situation the country is in, that’s not likely to change very much either.

It’s not something any of us want to hear, but someone always misses out when it comes to health rationing.

Life’s Great Unknowns

Former US Defense Secretary Donald Rumsfeld once said “as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns — the ones we don’t know we don’t know.”

Or it was something like that. I guess he could have been misquoted.

Anyway, the reason I mention it is that I have a known unknown. I don’t know what time Tom’s appointment at the Respiratory clinic at Wellington’s Capital and Coast DHB is next week.

First I was given an appointment for 15:20 (3.20pm) Earlier this week they rang to see if I could change that to 15:00 (3pm). and I agreed to that. Yesterday I got the letter advising me of the change. It had a handwritten note confirming the appointment for 15:20 had been changed. But the computer printed time, highlighted in pink, said 16:10 (4.10pm). So I rang the Outpatients Clinic, who said the time in their records was 15:20. I rang the Respiratory clinic and they also said 15:20.

If you’re wondering why I’m writing the times in both analogue and 24-hour format, it’s because that’s what they do. Two letters and each uses a different time format. Confusing isn’t it? I recently read about the number of people who don’t turn up for their appointments at the hospital. I can’t say I’m really surprised. So what time is my appointment? Is it 15:00, 15:20 or 16:10? Sorry, there’s no prize for guessing the right answer. This isn’t a quiz show. This is real life.

I have been harping on about Capital and Coast DHB recently, but that’s probably because we’ve had several encounters with them in the past few weeks. They’re obviously on my mind a lot.

Yesterday I was talking to a friend who had her own story to tell. Her tale is about incontinence supplies. She has a 15-year-old daughter who is incontinent and my friend finds nappies awkward and, at time, undignified. For example, when she and her husband go out for an evening, one of their teenage sons can look after his sister – except for putting on the nappy. Having a similar family makeup myself, I know exactly what she means. So my friend asked the DHB about pull-ups which would make life easier for everyone involved. Even big brother could manage them.

But no, apparently the DHB will supply pull-ups to old people with incontinence but not to 15-year-olds. At least that’s what my friend’s been told. If that’s the case, it’s hard to understand why we can afford to give some members of society a little dignity and make life a little easier for their caregivers, but not others. It’s one of the great unknowns of life.

A Bouquet for the Dentist

In contrast to last week’s blog, which was a brick bat to the Care Coordination Centre at Capital and Coast DHB, today I want to deliver a bouquet to another department, and specifically to one of the dentists.

For some years now, Tom has been getting his teeth checked by a dentist at Wellington hospital. We used to go along every six months or so, and they’d take a quick peek in his mouth. Everything looks fine, they’d tell me. Let us know if he’s having any procedure that requires a general anaesthetic and we’ll give his teeth a clean at the same.

What this meant that he went for years without a proper dental clean because he’s hardly had any general anaesthetics. And I certainly wasn’t going to put him under just for his teeth unless there was a very good reason. So until last year, 2004 was the last dentist-administered clean that I can recall.

But what a difference one person makes. Last year, when he was having a muscle biopsy, we took that opportunity. The dentist came and spoke to me afterwards and said everything was fine, and she’d like to see him again in six month . Without an anaesthetic, I wondered? Surely this was going to be another complete waste of time.

But no. Six month later when we went along, she gave his teeth a good clean. I remember commenting at the time that she was the first dentist who, while he was awake, had attempted to get anything in his mouth for longer than about three seconds. To which she replied that the others just weren’t brave enough to give it a go.

Last week it was time to go back and once again she managed to pry open Tom’s mouth, give his teeth a good check over, clean AND a fluoride treatment. And all the while she chatted away to him, telling him what she was doing. Most health professionals do this now. I guess it’s part of their training. Always tell the patient what you are going to do, even if you don’t think they’ll understand you. And that’s a good thing, but sometimes you can tell they’re not comfortable. But unlike some, she did it in such a natural way, she could have been talking to anyone. It was lovely to watch.

And to top things off, the dental department is a really easy department to deal with. My experience is that it is efficient and well run. The dentist even apologised for keeping us waiting 15-minutes. If I had a dollar for every minute I’ve had to wait for appointments at that hospital I’d be a rich woman now. 15-minutes is nothing in my book. And as if to reinforce that, earlier this week I spent an hour waiting to see another specialist.

So a bouquet to the dental department and especially to Barb, the dentist at Wellington Hospital for making visits to the dentist a pleasure (for me anyway). And you are not allowed to leave your job anytime soon!

You and your disability are an adult now

Wow, there’s no denying the fact that Tom and his disabilities have hit adult services. It’s like moving to another planet, if my experience to date is anything to go by.

A couple of weeks ago I decided I really needed an Occupational Therapist to come and check out a couple of things. It seems there’s no such thing as a transfer from child to adult services, you just call to request services if you need them. It’s as if they’re hoping your disability needs will go away. I’m still waiting for that particular miracle to happen, so while I’m waiting I had to make this call. That’s after I eventually found the right number, buried near the end of my ‘farewell from child services’ letter. Clearly not a very important number.

Now, I ’m not naive. I’m really not. I fully expected go on a waiting list and have to wait, at minimum, several weeks for someone to contact me. What I didn’t expect, after 16 years of receiving disability services, was to feel like I was a new entrant in the system, starting at the bottom rung.
Apparently in our District Health Board (Capital and Coast DHB in Wellington), access is through something called the the Care Coordination Centre. A few years ago I worked in a Hospice so I was familiar with the term ‘care coordination.’ I knew it was a gateway, and it’s obviously a gateway to a wide range of health services. That, I thought, meant it could be a bit tricky navigating this new system and I wasn’t disappointed. Or I was, depending on how you look at it.

I spoke to an administrator or receptionist who made me feel like I had just arrived from Mars. Clearly, through no real fault of her own, she didn’t have an inkling of what I was talking about. I explained that I was the parent of a young person with a disability, so wouldn’t you think that was a good clue? Nope, because after several minutes of conversation she started talking to me about accessing services for the over-65 s. Hello, if Tom is 65, then that would make me at least 80ish. I’m darned sure I don’t sound that old, even if some days I might feel it. I don’t expect they have too many parents ringing up about services for their 65-year-old children. But I could be wrong.

We carried on talking past one another for a bit longer until she got to her next important point, by which time I was about ready to spit tacks. You’ll have to get a referral from your GP, she told me. I could practically hear the voice of 1970s tennis star, John McEnroe, a man renowned for his temper with the umpires, screaming in my ear. ‘YOU CANNOT BE SERIOUS!!!!!!!’

Now, I’m normally reasonable ok at getting my point across, and getting transferred to someone who is able to help, but by this time, I was at my wits end. Sixteen plus years receiving disability support services, some through this DHB, and you’re telling me I have to visit my GP to get a referral? Yeah, right!

She did eventually put me through to speak to another person. And while I still felt I might as well have been talking to the butcher, the baker or the candle stick maker, we did at least establish that Tom was in their computer system, and he didn’t need to get a referral from the GP. Hallelujah, Praise the Lord!

Not too many days later I had a call from a therapist, to clarify what I needed, and to tell me that the waiting list was about eight weeks. So the system does work. Ground control to Major Tom, we hear you.

I’m fairly tenacious so what concerns me about all of this, is that if I have this much struggle to get into the system, how on earth do more faint hearted people manage? I have visions of people trotting off to visit their GP, paying the GPs fee, all to get a referral they don’t need. There really does need to be a better way to transition someone with life-long disabilities from child to adult services.

Government Agencies; Do they talk to each other?

When is a human being not a human being? When they are a just a name in a file.

This is the frustration that people everywhere face on a day-to-day basis. But closer to home, it’s a frustration being felt by at least one group of New Zealand parents trying to set up a “home away from home” for their adult children. I bet they’re not the only ones in NZ either, but they are the ones I know. Their children are faceless names, passed from one government agency to another.

From what I can see, and from my past experiences in the disability sector, government agencies work independently and it’s often hard to get them to agree on something that just makes good common sense. I know somebody who at one time was having trouble getting her daughter to respite care (paid for by the Ministry of Health) because the Ministry of Education (who pays for the transport to and from school) would not deviate from the contract they had. The respite care was much the same distance from school as this girl’s home, but no, it was not possible. That was the parents’ responsibility. But as the parents lived about 50km from both school and respite, clearly this was not a workable solution.

For many parents caring for a disabled child, respite is critical to the wellbeing of both the child and his or her family, so you’d think it would be sensible for those two agencies to have a bit of a yarn and see if they can’t come up with something that works for everyone, if only to avoid even more agencies becoming involved and adding to the complication. More meetings, more paperwork, enough to make a bureaucrat take a second thought? Usually not.

In the latest example it’s the Ministries of Health and Housing. It’s not easy getting assessed and into the Ministry of Health’s system as someone eligible for residential care. So how is it that once a person with a disability meets this criteria for Health funding it takes so long for any progress to be made on housing. Over two years later these people are still waiting to move into their new home. How can that be?

The only conclusion I can draw is simply that government agencies do not talk to one another. Each has its own bucket of funds and each operates in a silo. Occasionally messages must pass from one to another I guess, but essentially they’re independent of one another. They’re answerable to their own minister but not to the community that their minister, as a member of the New Zealand parliament purports to represent. In whole of life cases such as setting up a future home for someone with a profound disability, someone who will forever cost the taxpayer a truck load of money, wouldn’t you think it would make sense for the relevant agencies to get a whole of life perspective? If only to make sure each gets the best bang for its buck.

Finding a suitable house to be a home for four people who are all totally dependent on others for their needs and who all use wheelchairs for all or most of their mobility is a challenge at any time; not least when budgets are tight as they are now. For this group, this particular challenge took about 18 months, but finally Housing found something suitable. Of course, with such high needs, nothing short of a purpose-built house was going to be entirely suitable, and so there’s renovation to do. The contract on the house was signed eight months ago. Settlement was six months ago but to date no work has started on this house. It is imminent. Apparently. Meanwhile the families wait and they grow more wary. Their adult children were supposed to move into this house in late 2010, then early 2011, then mid 2011. Now it’s looking more and more like late 2011.

In 2009 the government established a Ministerial Committee on Disability Issues. Key Government Ministers with an involvement in disability issues are members of this committee and it’s chaired by the Minister for Disability Issues. I wasn’t quite sure what their role was so I just took a look at their brief on The Office for Disability Issues site. It says “By having ministers from different portfolios working closely together, government agencies will better focus their activity and policy development on what makes a real difference in disabled people’s lives.” I just about fell of my chair laughing.

But seriously, this group is doing important work. After reading about their last meeting I’m reassured that at least facilities at Rugby World Cup venues will be accessible for disabled people.

Take a moment to get to know your neighbour

For a while now IHC New Zealand has been running a ‘Take a moment’ campaign where they ask us to take a moment to get to know people with intellectual disabilities in our community. While it’s a good idea, this might not be easy for everyone to do this, and perhaps some people need a wee bit of a push to help them to take a moment. Like being introduced to their neighbours, for instance.

Recently my husband saw our old neighbours. Before I get myself into trouble I mean ‘old’ in the nicest way; they were our neighbours in our last house. Age is relevant too, but more on that in a moment. These old neighbours were with a friend who happened to have new neighbours: people with intellectual disability in an IDEA Services residential home. The friend didn’t know her neighbours. None of the staff had introduced themselves or the residents, and she said she really wasn’t sure how to approach her neighbours beyond a simple ‘hello’.

‘Take a moment’ implies it’s our responsibility to make the first move, but we need to think about this for a minute. There will be plenty of people in our community who aren’t comfortable with intellectual disability. After all, it was hidden from view for so long; people lived in institutions, locked away from public view, and a whole generation of people had little or no experience of disability in their community. Hardly surprising then, that people of a certain age may feel uncomfortable making the first move. This lady said that recently she was driving home on a wet day when she saw one of her neighbours walking home in the rain. She wanted to stop and give him a ride, but hesitated because, as she said, she didn’t know what he’d been told about talking to strangers. She was worried that she might cause distress. So she just carried on driving.

It made me wonder if we expect too much from the community. It’s a big word, community, encompassing people from all walks of life; people who have lived with disability and people who haven’t, people brought up with disability in their neighbourhood and people from societies or an age where it’s hidden from view. How realistic is this if those living closest to people with intellectual disabilities don’t know them.

Perhaps IHC should have a word to its subsidiary, IDEA Services, and get them to make sure all their residents know their neighbours. Of course IDEA isn’t the only service provider in New Zealand, and you’d like to think they’d all do this. It just might save someone a cold walk home on a rainy day.

Have a look at a trailer for a ‘Take a moment with us’ exhibition here.

It’s needs assessment time

Two words strike fear into the hearts of many of us who received disability support services. Needs Assessment. If you don’t know what a needs assessments is, say a short prayer of thanks. And read on.

A needs assessment is the way those of with disabilities, or who care for someone with a disability access government-funded services. Like our country’s District Health Boards, Needs Assessment agencies are regionally based across New Zealand. Therefore the process can vary a little from one agency to another. And even within a single agency, processes vary. Some of my friends, for instance, have their assessment done over the phone every second year, but because our needs are considered high (read we cost the government a lot of money), I have the pleasure of a face to face visit every year. Sometimes it’s a short assessment (under two hours!) but every three years it’s a full assessment (up to three hours). Last Wednesday afternoon I spent a beautiful Wellington afternoon having the needs of my son and my ability to provide for those needs assessed. A perfect way to spend a perfect day.

When I tell you that a lot of feelings and emotions about caring for a loved one sit just below the surface, I’m sure I’m not alone. As carers we manage to function as (relatively) normal human beings most of the time but something like this drags up all those raw and deep emotions. For me it’s a time to reflect on how different our family is to our peers. Thank God these assessments only happen once a year.

I can’t really argue with the necessity of these. We live in a society where services are rationed and scarce resources are allocated based on need. It’s as simple as that. Assessing that need is not an exact science, plenty of people game the system while others fall through the cracks, but until someone comes up with a better way, we’re stuck with it. Incidentally, if you’re interested in a perspective on the unfairness of resource allocation in health services, have a read of Gareth Morgan’s column in the New Zealand Herald. He’s writing more about the wider health sector but the principle is the same.

Still, a needs assessment is a testing time. My life is built around routines. But as a consumer of public health services, I feel as if my life is in the hands of the person sitting across the table from me. And in many discussions I’ve had over the years, it’s pretty clear that I’m not the only one who’s life runs on strict routines. Any change, such as a reduction in services, could require significant changes to those routines.

Anyway, last Wednesday I felt fortunate to have a really lovely assessor come to my house and go through this process. I feel confident that she recognized that our current services match our level of need, and I’m not fearful of losing those services. Phew, home and hosed for another year. But it was still an exhausting two and three-quarter hours, and as I noted on my Facebook page, I had a bottle of wine chilled and waiting in the fridge.

Afterwards, as I was enjoying a glass of that wine in the Wellington sunshine, news came through of the second explosion at the Pike River mine. It was a timely and sobering reminder that there are always people worse off than ourselves.