The Rat On The Wheel
I thought that my blog might take some sort of order - quite possibly chronological - but I think that it will never happen. This blog, like my life, is going to be messy! Very messy! Not a lot of order or structure but a heck of a lot of heart! So for all of you structured and ordered people I apologise in advance!
This week we had a HUGE VICTORY. Yeah I know the word "victory" conjures up a picture of a fight, a battle, quite possibly a war......and that's exactly what this issue has felt like....a WAR. A war against injustice, a war against policy, a war against stupidity. It sounds harsh and I am a little reluctant to put these words on paper but I will let you make up your mind.
Housing has been an enormous weight on my shoulders for the past 6 months as I have been advocating for Kristal as her rent has seen a huge rise over an eight month period. The home she has rented for nearly 6 years is fully accessible which has met her needs so well. Having a home that she can access while using her wheelchair and a bathroom that allows for her to be safe is imperative and so hard to come by. This home was purpose built and it shows. Kristal had previously rented a home that had a modified bathroom and was considered accessible - hmmm not sure how the three steps up to the front door fitted into the accessible box! Or the fact the wheels didn't manoeuvre easily, actually at all, once inside the house as the width of the hallway just didn't make the grade. So having an actual fully accessible home has been a huge blessing and the thought of losing it has been awful.
The trust that rents out the house charges 85% of market rent and that was affordable until rent prices increased in our area and consequently Kristal's rent went up too. I understand their situation and the need to pay mortgages and to have the ability to build more accessible homes for the huge need we have for accessible housing. I get that. What I don't get is the hours, that led to months, I have had to spend trying to sort this out. The process went a little like this......oh heck there was no little process, it was just a huge process that made me feel like I was running on a rat wheel with no chance of getting off or breaking free. Around and around and around and around and around and around and around and around some more....and then around some more! The good thing about running on a rat wheel I found is that while you never feel like you are going to get off you do learn how to squeak and the longer you run the louder you squeak until you finally find someone who can actually understand the squeaking and do something about it!
On first finding the rent was going up $50 per week I approached MSD/WINZ to see if Kristal qualified for an increase in her benefit, but she didn't so we helped her out over the past 6 months so she could stay put. But with the next rent rise looming, another $47.50 per week, I figured it was probably time to realise this was unsustainable so off to WINZ I did go (via the phone!) to ask if this time there would be the chance of a little increase in the benefit. But, alas, no. The benefit was maxed out!
So the conversations from that point went a little along these lines....so what happens then when Kristal can no longer afford her rent....perhaps you should get her a flatmate.....in my head - yeah that's so damn easy, why have I never thought of that...out loud - we have tried to get her flatmates but been unsuccessful although we have managed to have some boarders (live in support staff) from time to time but it's not something we can rely on - so let's say she can't find a flatmate, has no boarders, can not get a rise in her benefit and has to move out and has no where to go.....well she can go to emergency housing....fantastic I say - so emergency housing is accessible and there will be a bathroom that can accommodate her commode chair and staff to support her - did I mention that she needs to be showered while sitting firmly strapped into a commode as seizures are often triggered in the shower and we don't want her to die while showering......no emergency housing won't have that facility....awesome says me - so then what do you suggest......a motel is the answer......so you can't increase her benefit to cover the increase in rent but you can pay for a motel......yes was the reply. Seriously....is this even for real. There is something seriously wrong here.
Somewhere in the midst of this craziness it was suggested we apply for a social housing home so we did. Forms completed, not without the obligatory drama, and yes, Kristal qualified and was put near the top of the waiting list. However, there are no accessible homes available....actually there are no homes available BUT you are on the list! I am thinking the reality is we must wait until someone dies so they no longer have the need for the house - morbid but sadly quiet possibly true.
So yet more phone calls to HNZ/WINZ around how this may work for Kristal. A well meaning person suggested we take the alternations required off the application for social housing and then it may be easier to get a house. Then we could get the Ministry of Health to modify the house. Well meaning and good intentions but NO. Firstly there is no guarantee that the MOH would actually modify the house and secondly why would we want the already cash strapped MOH to fund alterations when there was a perfectly damn good house she already rented.
So back on the phone I did go..aha…..the tune of the seven dwarfs song kept going around in my head with modified lyrics....hi ho hi ho its off to WINZ I go....with a shovel and a pick...hi ho hi ho! You can draw your own conclusions on what I felt I needed a shovel and a pick for!
One of my many phone calls resulted in a conversation with someone who told me that MSD did have some other approved Community Housing Providers in our area. Having no idea what that meant I decided to put my amateur detective skills to work and google became my right hand man as I sought to understand what this meant. And oh my joy when I found out what an approved Community Housing Provider(CHP) was and Kristal's landlords were just that. A CHP means that a person qualifying for social housing could rent the house paying income related rent and the landlord would receive an income related rent subsidy to cover the rest. YES YES AND YES!
But NO NO and NO...of course it was never going to be that simple. I won't bore you all with the details but let's just say I was beginning to think the headline "Disabled, poor and now homeless" was going to feature in the NZ Herald.
All of sudden the rat on the wheel started squeaking louder and thankfully found some people within MOH and MSD who listened, heard, and had some ability to help out our situation. I need to say that the other people I spoke with along the way really were empathetic about the situation and while I appreciated it empathy didn't help. I feel for those people who had to listen endlessly to me and I apologise for not always being easy to deal with. I am sure they must have felt the urge to quit their jobs when they discovered it was me on the end of the phone cos heck I was losing the will to live every time I phoned them!
The end result is that Kristal can now stay in her fully accessible home with income related rent which is sustainable; we can employ people to support her; we can install the long awaited change table; and I can get off the rat wheel and enjoy other recreational activities!
Now that you have ploughed your way through these ramblings and endured the whole story I leave you with these thoughts:
*Never see a situation as a fait accompli
*Don't be surprised by anything
*Never expect the call centre staff to have all the answers or any authority
*Remember it is the system that is wrong - not the people working in the system
*Always do your homework and know as much as possible about the situation
*Challenge policies - ask for the legislation that informs the policy; keep pushing
*Make good use of your shovel and pick - they are great tools for getting to the bottom of the crap
*Don't ever give up - sure take rest - but don't give up
*Pray if you are inclined to do so - I am and I do - it never hurts to cover all your bases!
*Find the people who really have some clout and work with them
*Remember to say thanks to those who helped along the way
*After saying thanks ask what has been learnt through the situation, what will change, and hold people accountable
*Know the rat wheel can be your friend - it can teach you to squeak loudly
*Offer to advocate for someone who doesn't have a voice or the strength to continually fight
*CELEBRATE YOUR VICTORIES
This week we had a HUGE VICTORY. Yeah I know the word "victory" conjures up a picture of a fight, a battle, quite possibly a war......and that's exactly what this issue has felt like....a WAR. A war against injustice, a war against policy, a war against stupidity. It sounds harsh and I am a little reluctant to put these words on paper but I will let you make up your mind.
Housing has been an enormous weight on my shoulders for the past 6 months as I have been advocating for Kristal as her rent has seen a huge rise over an eight month period. The home she has rented for nearly 6 years is fully accessible which has met her needs so well. Having a home that she can access while using her wheelchair and a bathroom that allows for her to be safe is imperative and so hard to come by. This home was purpose built and it shows. Kristal had previously rented a home that had a modified bathroom and was considered accessible - hmmm not sure how the three steps up to the front door fitted into the accessible box! Or the fact the wheels didn't manoeuvre easily, actually at all, once inside the house as the width of the hallway just didn't make the grade. So having an actual fully accessible home has been a huge blessing and the thought of losing it has been awful.
The trust that rents out the house charges 85% of market rent and that was affordable until rent prices increased in our area and consequently Kristal's rent went up too. I understand their situation and the need to pay mortgages and to have the ability to build more accessible homes for the huge need we have for accessible housing. I get that. What I don't get is the hours, that led to months, I have had to spend trying to sort this out. The process went a little like this......oh heck there was no little process, it was just a huge process that made me feel like I was running on a rat wheel with no chance of getting off or breaking free. Around and around and around and around and around and around and around and around some more....and then around some more! The good thing about running on a rat wheel I found is that while you never feel like you are going to get off you do learn how to squeak and the longer you run the louder you squeak until you finally find someone who can actually understand the squeaking and do something about it!
On first finding the rent was going up $50 per week I approached MSD/WINZ to see if Kristal qualified for an increase in her benefit, but she didn't so we helped her out over the past 6 months so she could stay put. But with the next rent rise looming, another $47.50 per week, I figured it was probably time to realise this was unsustainable so off to WINZ I did go (via the phone!) to ask if this time there would be the chance of a little increase in the benefit. But, alas, no. The benefit was maxed out!
So the conversations from that point went a little along these lines....so what happens then when Kristal can no longer afford her rent....perhaps you should get her a flatmate.....in my head - yeah that's so damn easy, why have I never thought of that...out loud - we have tried to get her flatmates but been unsuccessful although we have managed to have some boarders (live in support staff) from time to time but it's not something we can rely on - so let's say she can't find a flatmate, has no boarders, can not get a rise in her benefit and has to move out and has no where to go.....well she can go to emergency housing....fantastic I say - so emergency housing is accessible and there will be a bathroom that can accommodate her commode chair and staff to support her - did I mention that she needs to be showered while sitting firmly strapped into a commode as seizures are often triggered in the shower and we don't want her to die while showering......no emergency housing won't have that facility....awesome says me - so then what do you suggest......a motel is the answer......so you can't increase her benefit to cover the increase in rent but you can pay for a motel......yes was the reply. Seriously....is this even for real. There is something seriously wrong here.
Somewhere in the midst of this craziness it was suggested we apply for a social housing home so we did. Forms completed, not without the obligatory drama, and yes, Kristal qualified and was put near the top of the waiting list. However, there are no accessible homes available....actually there are no homes available BUT you are on the list! I am thinking the reality is we must wait until someone dies so they no longer have the need for the house - morbid but sadly quiet possibly true.
So yet more phone calls to HNZ/WINZ around how this may work for Kristal. A well meaning person suggested we take the alternations required off the application for social housing and then it may be easier to get a house. Then we could get the Ministry of Health to modify the house. Well meaning and good intentions but NO. Firstly there is no guarantee that the MOH would actually modify the house and secondly why would we want the already cash strapped MOH to fund alterations when there was a perfectly damn good house she already rented.
So back on the phone I did go..aha…..the tune of the seven dwarfs song kept going around in my head with modified lyrics....hi ho hi ho its off to WINZ I go....with a shovel and a pick...hi ho hi ho! You can draw your own conclusions on what I felt I needed a shovel and a pick for!
One of my many phone calls resulted in a conversation with someone who told me that MSD did have some other approved Community Housing Providers in our area. Having no idea what that meant I decided to put my amateur detective skills to work and google became my right hand man as I sought to understand what this meant. And oh my joy when I found out what an approved Community Housing Provider(CHP) was and Kristal's landlords were just that. A CHP means that a person qualifying for social housing could rent the house paying income related rent and the landlord would receive an income related rent subsidy to cover the rest. YES YES AND YES!
But NO NO and NO...of course it was never going to be that simple. I won't bore you all with the details but let's just say I was beginning to think the headline "Disabled, poor and now homeless" was going to feature in the NZ Herald.
All of sudden the rat on the wheel started squeaking louder and thankfully found some people within MOH and MSD who listened, heard, and had some ability to help out our situation. I need to say that the other people I spoke with along the way really were empathetic about the situation and while I appreciated it empathy didn't help. I feel for those people who had to listen endlessly to me and I apologise for not always being easy to deal with. I am sure they must have felt the urge to quit their jobs when they discovered it was me on the end of the phone cos heck I was losing the will to live every time I phoned them!
The end result is that Kristal can now stay in her fully accessible home with income related rent which is sustainable; we can employ people to support her; we can install the long awaited change table; and I can get off the rat wheel and enjoy other recreational activities!
Now that you have ploughed your way through these ramblings and endured the whole story I leave you with these thoughts:
*Never see a situation as a fait accompli
*Don't be surprised by anything
*Never expect the call centre staff to have all the answers or any authority
*Remember it is the system that is wrong - not the people working in the system
*Always do your homework and know as much as possible about the situation
*Challenge policies - ask for the legislation that informs the policy; keep pushing
*Make good use of your shovel and pick - they are great tools for getting to the bottom of the crap
*Don't ever give up - sure take rest - but don't give up
*Pray if you are inclined to do so - I am and I do - it never hurts to cover all your bases!
*Find the people who really have some clout and work with them
*Remember to say thanks to those who helped along the way
*After saying thanks ask what has been learnt through the situation, what will change, and hold people accountable
*Know the rat wheel can be your friend - it can teach you to squeak loudly
*Offer to advocate for someone who doesn't have a voice or the strength to continually fight
*CELEBRATE YOUR VICTORIES
Can't begin to imagine the hours you have poured into finding and advocating for solutions with this one. Stoked that you got the victory and hopeful that change will come for others as a result of this
ReplyDeleteSo happy for you all that you finally have a resolution. But so wrong that you had to go through that whole crappy process!
ReplyDeleteYou are amazing, thank goodness for your incredible tenacity and commitment, I’m so pleased it’s been resolved but so sorry you had to endure so much to get a result.
ReplyDelete