Letters to Whaikaha
By Tracy Peters
Email: 17 April 2024
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17 April 2024,12:15
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Hello Whaikaha,
if I had a choice I would send this email directly to Paula (can't spell her last name) but I suspect Paula's email account is off-limits to us minions.
So I'll write this email and hope that whoever reads it considers why I am so confused and frustrated and maybe a miracle will happen and I'll get a response that makes sense and refers to the content of this email...(one can but hope) and if I'm really fortunate I might actually get a real and practical solution...(Ok so that might be expecting too much, but one can but hope)
Like many others who make contact with you, I get IF...at least I did, well I can see my funding allocation, it's there I just can't use it! So I'm assuming I still get funding...Um maybe???
So I rang my NASC with some questions, my NASC advised me to call Whaikaha who advised me to call Manawanui who advised me to call Whaikaha...who advised me to call my NASC....(Confused yet?)
But wait there's more! (and no it's not a TV Ad) I called Whaikaha again....(because I simply can't resist trying again, and again and well you get it)
I finally got a lady at Whaikaha who declined to give me a name, but at least she took the time to speak with me. I really did not enjoy the conversation. It felt very much like a Monty Python Skit and it's only funny if you're not the brunt of the Joke.
I was asking about still being able to use an approved travel service "Freedom" in Invercargill to attend medical appointments in Invercargill including a mammogram appointment as I'm in the age group who gets free Breast Screening. (really it's free for breast screening....for now anyway)
Can you comprehend my perplexity at the response I got.
WHAIKAHA - "Why do I need a mammogram? and do I have permission to have a mammogram? As I'm disabled should I be getting a mammogram?"
And "Why do I need to attend medical appointments and do I have permission? Why do I need to use a driver service?" Being disabled do I need these appointments?
ME - Well, I'm 58, and all NZ women from about the age of 49 are eligible for free Breast Screening and just because I rock a wheelchair does not exclude me and I rock a wheelchair and need to use a driver service to get to and from appointments and whose permission do I need and why???????
Why am I even having this conversation???????
Oh but wait there's more!!!
Whaikaha needed to contemplate their....I don't know what, but Whaikaha graciously agreed I could use my approved Travel Service to attend appointments...but I must ensure I had permission to have these appointments.....(Eh what and why and just WHAT)
I had more questions but had to take some time out to have a cup of tea (no I didn't ask anyone permission to have a cup of tea!!!)
Due to my spinal injury and Yey I got a freebie thrown in Spinal Myelitis, I need medication that is not available on prescription Metamucil Capsules. The free-flow powder is available on prescription but I need the capsules and they are not available on prescription....so I was advised to use my funding to pay for the capsules which I can't get on prescription....a bottle of 300 capsules from Chemist Warehouse is $74.99 no way I can afford that, but if I could get it on my funding then great.
WHAIKAHA - "How would having these capsules help? and Why do I need them and can't I just use something else and I should investigate other options and do I have permission to use them?? and I should just eat prunes and can't I just put up with it, I'm disabled.
ME - " Yes I am disabled, Due to the spinal injury and complications due to a lack of prompt medical care, my bowels don't work. I either suffer severe constipation or severe diarrhea, and my bladder is also affected. I need medical treatment that is not available in Invercargill as Invercargill does not have a Spinal Unit and I can't get to Burwood unless I move to Christchurch....so I'm on long-term medication, such as Coloxyl with Senna (which has turned toxic in my system, but I can't stop taking it until I get medical treatment, and that would be a bowel resection and a BAG for POOP) I'm also supposed to take at the direction of the doctors Metamucil Capsules which are not available on prescription and what do you mean do I have permission and whose permission do I need and why????
Explore other options? such as? Oh yeah I've had very long involved conversations with doctors, and the consensus is I need treatment as in an operation....only I live in Invercargill and the treatment I need is not available here in Invercargill....no I can't put up with constipation it can kill and just because I am disabled does not mean my life has less value...
WHAIKAHA - "Call your NASC or Manawanui...if they agree I could try claiming it, does it mean incontinence???? Can't I do without?
Permission from my caregivers?
ME - YES it means incontinence and No I can't do without! I'm an adult a very frustrated exasperated , well-educated, usually reasonable adult who has just developed an odd facial twitch...I'm capable of making my own decisions and I do not need or require someone else making decisions for me nor do I need anyone's "permission" to live my life. Such a suggestion is offensive, inappropriate and unprofessional, discriminatory and shows prejudice and a lack of comprehension and understanding. And Whaikaha need to address empathy training in all their staff....
WHAIKAHA - Well you could talk to your host.
ME - speaking of Carer Support/Personal Care. I have two people on contract, one works with my fabulous husband who is also on IF and one works with me.....What's the status of their contracts??
WHAIKAHA - My contract with my support person is void as of 18 March and with the funding changes, there is no certainty I can employ anyone. But not to worry, the fabulous husband's support person and contract is ok....maybe, I'll need to get clarification, but from whom I'm not sure...(Maybe Monty Python might know)
ME - I'm confused, very exasperated, and that facial twitch won't stop and I'm so frustrated....might even be stressed. I'm not certain about what can and cannot be under the Guidelines which are truly a work of artistic interpretation. (Monty Python has a lot to answer for) Or is that Shakespeare, to be or not to be, that is the question, (It's a philosophical debate, me, I just want practical solutions and answers, stuff the debate!)
It's time for me to be radical and go make a cup of tea without asking anyone else's permission or debate...
Before I do, think about this, disability is a fact, it can and does happen at random to anyone at any time. And just because a person is disabled does not make them less. What makes a person less is attitude! I did not shop for a disability, it's not something I can return because I don't want it anymore, I'm not ashamed of being disabled and no I would not change who I am as I'm proud of being disabled.
Being disabled, I need support, I was granted support, I used my funding with respect and appreciation and responsibility and then 18 March came along and now I have no idea what can or cannot be....your guidelines state one thing but reality does not match.
Tracy Peters....pretty sure the facial twitch is either stress caused by Whaikaha a lack of chocolate or both.....
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17 April 2024,13:47
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Hello Whaikaha,
I'm emailing with feedback once more as I have made another discovery about another negative effect of the IF Funding debacle of March 18.
Me, I'm a mature woman in a wheelchair, with Spinal Injuries on IF. (am also Dyslexic and slightly Autistic and have a brain tumor)
IF has been a huge benefit to me, my family, and by extension my community, as I have been thanks to IF able to contribute to my community as a Disability Advocate, (not paid)
IF allowed me to undertake rehab, by purchasing a gym membership so I could attend the YMCA Gym in Invercargill.
There is no spinal rehabilitation in Invercargill, no Physios or therapists who have the skills and capability to work with me. So I had to come up with my own plan with the guidance of my Spinal Injury Peers.
By going to the Gym each day I could work on muscle development, strength and core exercises and fitness. Rowing a manual wheelchair is hard work. (If you've never tried it, go borrow or hire a wheelchair and row yourself around your city for a week and then you'll better appreciate what I'm trying to explain)
There are no staff at the gym who can work with me as they aren't trained in spinal rehab. But I am part of the Spinal Peer Support Network and my peers provide support and guidance.
And because I suffer severe spinal spasms and a shoulder misalignment I was also getting Massage Therapy with an experienced spinal massage therapist privately who lives in Invercargill as there was no one available in the Public Sector in Invercargill with the skills and experience I need.
Stephanie, my private massage therapist came to my home as I could not get to her. For $85.00 a treatment Stephanie would come to my home and provide massage therapy which was a huge help.
The massage therapy reduced the pain, eased the stressed spinal cord and made it possible for me to go out in my manual wheelchair and take part in activities like grocery shopping, visit the library, meet friends and peers, and be physically and mentally healthier. I could stand upright at the kitchen bench for a few minutes, I could transfer dishes from my bench to the oven, pots from the cooker to the bench, simple tasks others might take for granted if you don't have a spinal injury.
Massage therapy and Gym workouts made transferring from my wheelchair safer and easier for me and my support team.
I could also hang out my laundry on the clothesline, I could lift the kettle without dropping it.
Massage Therapy meant I could manage household tasks better such as cooking, I really enjoy cooking for my family, and friends. I even enjoy doing the dishes, because it was something I could do, I could contribute to my family. Massage therapy and going to the gym meant I could be more independent and rely on my carer support less, I still needed them but not as intensely.
But then March 18 happened and I can no longer go to the Gym. I can no longer maintain my physical rehab and I can no longer have my massage therapy so I am more reliant on carer support. (And there's another issue as March 18 voided her contract, so thanks for that)
I will need more medical appointments, I find it more difficult to undertake grocery shopping and social activities.
My bowl and bladder are less healthy I need more medication...(Yeah wrote you an email about that conversation with one of the Whaikaha staff) I'll need more medical intervention because my bowl has totally failed because I can't go to the Gym anymore and can't get the massage therapy for my spinal injury...I'm crankier as I sleep less due to pain...(the local hooligans do not thank you for my crankiness, they now live in fear of the crazy wheelchair lady)
Now let's talk about my husband, he has Asperger's and EDS Ehlers-Danlos Syndrome, a connective tissue disorder and Synesthesia and some other stuff. He's high functioning, funny, kind, well educated and disabled.
The husband was allowed to use some of his IF to go to the YMCA Gym every day, (At a different time to me) it made a huge difference for him as again there is no one in Invercargill at the DHB with the skills and knowledge to help him, so we turned to the EDSNZ support network and the one doctor we could find who is based in New York who gave a seminar online.
The Gym has made so much difference, the husband is fitter, happier able to move easier, has made social connections, has fewer injuries, and sleeps better.
And then March 18 happened and neither of us can go to the Gym anymore.
If we weren't disabled we wouldn't join a Gym. We'd rather be outdoors getting our exercise, if I weren't disabled I wouldn't need a spinal massage for spinal spasms.
If I weren't disabled I wouldn't be in a wheelchair rowing everywhere and thereby putting immense stress on my upper body and muscular-skeletal system....
I am disabled, I need to use a Gym to stay healthy because I am in a wheelchair and I need massage therapy because I am disabled with spinal injuries gained through accidents which are not covered by ACC as my first injury happened before 01 April 1974.
We are disabled and we're proud of who we are, we'll never be ashamed of being disabled, the support we need is reasonable, we do contribute to our community, we pay taxes, we have value as human beings. We have always used our IF responsibly and respectfully.
I would really like our funding reinstated, as would all those affected.
Tracy
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17 April 2024, 16:03
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Hello Whaikaha,
Do you know what the difference is between acute services and disability needs?
Here's how it works for me a disabled woman and many of my peers.
I suffered an injury, was taken by ambulance to the hospital where I was assessed, admitted, and treated with surgery, given in-hospital physio, x-rays, scans, meds, OT, and then discharged. (I'm seriously summarising here)
My discharge summary included - permanently disabled.
I was promptly discharged from the DHB services with a permanent disability, no outpatient follow-ups for me, nope. Permanently disabled means they can't fix me, cure me or make me new again. (I'm ok with that), being disabled equates to being cut adrift and left to figure it out yourself (no so ok with that)
Hospital services are designed for acute treatment, break a leg for example, get it treated, do your physio, get back on your feet, get on with your life. You get discharged from outpatients and go your merry way. Your healed leg might twinge a bit every now and then, but you can ride a bike, go for a walk, or drive your car. Go dancing with your partner...enjoy sports etc.
A permanent disability is different, upon discharge from the hospital and outpatients your life takes a very different track.
There is no follow-up with the doctor at the hospital, there is no outpatient referral to physio at the hospital. (I was referred to hospital outpatients physio and declined because my injury was permanent and they only treat acute injuries and limited resources meant they had to triage based on who would best gain from their services. the Physios didn't see any benefit in treating the woman in the wheelchair despite the fact treatment would help me long term. But DHB's don't do it long-term.)
Disabled - If you're lucky you get referred to a NASC who does an assessment and you get IF and with that your life takes a very different track. The support you need might include, help in the house with housework, maybe you need someone to come in and help with getting you out of bed, and bathing. You might have tech like a wheelchair, maybe you've lost a limb or two or three. (Earthquakes are so pesky like that) Maybe you've had a head injury...
My point is that hospitals and their services are designed for acute patients, you go in, get treated, get discharged, and get on with your life. The DHB's understand this model, it's how they operate.
Disabled people need a different model. Our needs are all different, no two people are the same and this is where it gets hairy. Our situations are long-term, life long.
We live in Invercargill, there is a hospital that comes under Otago, but we live in Invercargill and many of the services you might take for granted and expect in Auckland - Wellington - Christchurch - Dunedin are simply not available. Regardless of what the mandate for the hospital is, they can only provide a service if they have the resources for those services and the desire to provide them.
So when Whaikaha say "Oh but the DHB provides that service" they might to acute patients, maybe.
But let's be honest please, there is a shortage of medical staff across all areas of medicine, so while you might say the DHB provides a service...they can only provide that service if they have the means and time and the desire to do so. Time is a serious issue when you have a medical need.
For the disabled, time and resources are always second to acute patients, we miss out on services because they are not available due to a shortage of medical staff, resources such as equipment, and time.
And hospitals will always weigh up who can benefit most from what they have to offer and disabled people will always come second in that model.
If a hospital has two patients and one is disabled and one is acute the second patient can make a full recovery...the Acute patient will get the care and treatment it's a fact it happens don't pretend it doesn't.
Disabled people need a different set of services, IF is a good way for the disabled to get what they need, it's not perfect but it's a good service because a disabled person is their own best advocate and expert. We have to be because being disabled means we have to learn about our disability so we can have intelligent conversations with medical personnel. We live firsthand with the disability, we learn quickly what we need, and getting our needs met is a challenge.
So Whaikaha, while you're contemplating the future of IF, consider this, Disability is not an exclusive club, you too could find yourself with a life-changing disability if you do, how do you want to be treated by society, your peers the DHB?
Tracy
Last Updated 17/04/2024
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