THE ART OF DE­PEN­DENCY

The NDIS promised choice and con­trol

The Monthly (Australia) - - CONTENTS - BY MICHELINE LEE

When I was 18 and my dis­abil­ity had pro­gressed to the stage where I could no longer push my­self in a man­ual wheel­chair, a man in a van brought me an elec­tric wheel­chair. Ac­tu­ally, it was more like a bulky three­wheeled scooter. He slapped a sticker with a se­rial num­ber on the plas­tic orange bon­net that cov­ered the front wheel. He told me that it was the prop­erty of the state and should only be driven on cov­ered sur­faces.

Oh how I loved it the mo­ment I sat in the chair and pressed Go. All the worry and the mil­lion steps be­tween my des­ti­na­tion and how I would get there dis­ap­peared. I couldn’t help laugh­ing, zoom­ing along, start­ing and stop­ping with a flick of the lever, tak­ing my­self where I wanted. Peo­ple might have thought I was deliri­ous.

I was in first-year law at Monash Univer­sity and lived in a stu­dent col­lege across a seven-lane road from the cam­pus. For the first six months, be­fore I got my elec­tric chair, I was on the con­stant look­out for peo­ple to push me in my man­ual chair. I had only enough strength in my arms to shift my­self a few me­tres on smooth level ground. At about 8 am, I would po­si­tion my­self out­side my room, wait­ing to nab some stu­dent com­ing down the cor­ri­dor to push me to the din­ing hall. Af­ter gulp­ing down break­fast, I would do the rounds, ask­ing who was leav­ing for the univer­sity and whether they could push me on their way.

Once I was on cam­pus, the tough part was find­ing some­one to push me back to the col­lege at the end of my classes. Mostly I re­lied on stu­dents from my lat­est class or passers-by. The col­lege was of­ten out of their way, and it could take them 30 min­utes to walk there and back. Most of those I way­laid were kind and warm; one even asked me out. Some had an­other place they had to be. No wor­ries, I said, I’ll ask some­one else. But it be­came more dif­fi­cult each time I had to ap­proach some­one else, and I grew more ner­vous and beg­gar-like each time I asked.

A rare few clearly felt put-upon. One of these sur­prised me, a slen­der woman with blow-waved hair whom I thought I recog­nised from a law class and saw as a peer. She would not look me in the eyes when I asked but im­me­di­ately stepped be­hind me, grabbed the han­dles and started push­ing. She let out an an­noyed huff. I said, it sounds like you might be busy, that’s OK, I can ask some­one else. But she kept on push­ing, fast and, it seemed from the jerk­ing and the huff­ing, fu­ri­ously. Ar­riv­ing at the col­lege, she gave me one last shove, turned around and walked away with­out say­ing a word.

That elec­tric wheel­chair lib­er­ated me – as long as there were no steps in the way, and as long as it didn’t break down. But it did break down, of­ten. It some­times took weeks to fix. I dreaded fac­ing the man from the state gov­ern­ment agency. He would shake his head, warn me that a chair can only be re­placed ev­ery seven years and say, What have you been do­ing with it? I did take it over grass, of course I did. And, yes, I rammed kerbs – it was the only way to get over them.

Ev­ery year, more mo­tor neu­rones died, my mus­cles wasted, my breath­ing weak­ened. With each part of my body that froze, the more my elec­tric chair and other equip­ment would loom, needed, vi­tal. An anx­i­ety grew in me.

Six months af­ter I got my elec­tric chair, I ap­plied to an in­ter­na­tional host pro­gram. I un­der­played my dis­abil­ity and didn’t men­tion I used a wheel­chair. A host fam­ily in Ger­many and an­other in France in­vited me to stay. I took only the man­ual wheel­chair, leav­ing the elec­tric chair be­hind. On see­ing me in a wheel­chair, the host in Stuttgart still took me in, but the one in Greno­ble with­drew. I was left skint, with­out any sup­ports and with no place to go. It was the po­si­tion I feared. It was also the po­si­tion I had put my­self into. My lone trav­els be­gan.

Three years later, back in Aus­tralia, I started to go out with David*. He was able-bod­ied. There was a beach we had dis­cov­ered with high tides that flowed over the sand, mak­ing it firm enough to take my wheel­chair. One hot, still af­ter­noon, we were dis­mayed to find our usu­ally bare beach teem­ing with peo­ple. We weaved our way to a va­cant patch of sand, and he spread out our tow­els and lifted me down from my wheel­chair. Too quickly, he let go of me and I nearly top­pled back­wards. We were out of kil­ter, aware of all the sur­round­ing eyes on us. With­out telling me what he was do­ing, he pushed my empty wheel­chair to the edge of the sand, hid it be­hind a shrub, and re­turned to lie down next to me.

Later I asked, Why did you do that, are you ashamed of me be­ing dis­abled? And he said, I was just putting it out of the way, it was none of their busi­ness. Right there and then, though, I said noth­ing. I wanted only to lie on that crowded beach, one body among many.

With David around, I did not have to worry about how I could get to the toi­let next, or whether I had enough en­ergy to pull a dress off over my head, or that I might fall trans­fer­ring from my elec­tric chair. Not only that, he took me bush­walk­ing on his back. To­gether we climbed moun­tains! We were in love. Still, I wor­ried that I needed him more than he needed me.

I told my­self that he would come to his senses even­tu­ally. It would be nat­u­ral for him to re­gret that he had not cho­sen a woman who was vig­or­ous and able, and only duty and pity would make him stay with me. He would then de­serve those looks he only got from peo­ple when he was with me, the ones we laughed about, those “what a good Sa­mar­i­tan you are” looks.

I be­came a lawyer. I was also an artist, but when my arms be­came too weak to han­dle a brush I took up writ­ing.

I think we should be more open and go out with other peo­ple as well, I said. He flinched. Hurt showed on his face. No, he said. That’s not how I want to be with you. My heart was thank­ful but I had to get away. This time I trav­elled for two months in Kenya and Tan­za­nia on my own, again tak­ing just the man­ual chair. There was no rea­son why I chose those African coun­tries ex­cept that they were un­known to me and travel would be hard.

That was about 25 years ago. Each year my mus­cles have at­ro­phied fur­ther. Now I have barely enough phys­i­cal strength to hold a book. I be­came a lawyer. I was also an artist, but when my arms be­came too weak to han­dle a brush I took up writ­ing. David is a writer too, as well as a univer­sity lec­turer. To­day he’s at work. I’m at home, tak­ing the day off work, be­cause there are prob­lems with my dis­abil­ity sup­ports that need sort­ing.

Our 16-year-old son bursts in, back from school. He gives me a hug, stuffs his face with what­ever food is close to hand, grabs his moun­tain bike and heads out the door again. It’s two hours be­fore the win­ter dark and he’s got to get to the bike trail, the one he and his mates dug with spades into a hid­den-away side of a hill, be­cause the jumps on the coun­cil-made trail were not big enough, and the turns not crazy enough. He asks me if I want to come and watch but I tell him I have to make a call.

I ring the Na­tional Dis­abil­ity In­sur­ance Scheme call line. An au­to­mated voice comes on and then the hold mu­sic. The NDIS was in­tro­duced to re­place a dis­abil­ity ser­vice sys­tem that was widely recog­nised as un­der­funded, un­fair and in­ef­fi­cient. On com­ple­tion in 2019, it will pro­vide in­di­vid­u­alised fund­ing to 475,000 per­sons un­der the age of 65 who have per­ma­nent and sig­nif­i­cant dis­abil­i­ties. The fund­ing can be used for dis­abil­ity-re­lated sup­ports such as per­sonal care, ac­cess to the com­mu­nity, ther­apy ser­vices and equip­ment. Af­ter a trial pe­riod, the NDIS started rolling out last year by lo­cal­ity and I was one of the first to tran­si­tion to it. Over the years I have be­come what is called in dis­abil­ity ser­vices a high-needs client, or a “com­plex par­tic­i­pant”, in the lat­est lan­guage of the NDIS.

I joined the cho­rus of peo­ple with dis­abil­i­ties who fought for the in­tro­duc­tion of the NDIS. We raised aware­ness of how peo­ple with dis­abil­i­ties have been ex­cluded from a so­ci­ety whose phys­i­cal and so­cial struc­tures are de­signed for the non-dis­abled per­son. In Aus­tralia, peo­ple with dis­abil­i­ties have lower lev­els of in­come and em­ploy­ment, and less ac­cess to health care and hous­ing. Many are iso­lated and seg­re­gated, and pre­vented from us­ing their skills and tal­ents to ben­e­fit their com­mu­ni­ties. Some re­main vul­ner­a­ble to ex­ploita­tion and abuse. Aus­tralia is ranked low­est of the OECD na­tions for the rel­a­tive in­come of peo­ple with dis­abil­i­ties. We called for the sup­ports that peo­ple with dis­abil­i­ties need to par­tic­i­pate equally in life, sup­ports that would give us con­trol and choice.

The re­sponse was un­prece­dented, the good­will from Aus­tralians heart­warm­ing. I re­mem­ber think­ing that we had made it to the main­stream con­scious­ness when I saw Bill Shorten, who fought for the trapped min­ers at Bea­cons­field, lead our fight. It should have been Rhonda Gal­bally in the news, of course, or one of the other peo­ple with dis­abil­i­ties who spear­headed the cause. But we were grate­ful for all the sup­port we could get.

The NDIS be­came law with bi­par­ti­san sup­port. It promised to pro­vide choice and con­trol of ser­vices to the per­son us­ing the ser­vices. Fund­ing would go to the in­di­vid­ual to buy the sup­ports they chose, rather than to the ser­vice provider in block form. There would be no more one-size-fits-all sup­ports, no more bud­gets that varied depend­ing on the econ­omy and the re­quire­ments of other port­fo­lios. Re­plac­ing all that would be an in­sur­ance ap­proach based on need, which recog­nised that early in­vest­ments would reap long-term ben­e­fits. At full op­er­a­tion, dis­abil­ity ser­vices fund­ing would be more than dou­bled, to $22 bil­lion a year (al­most the cost of Medi­care). The Pro­duc­tiv­ity Com­mis­sion found in 2011 that

the ben­e­fits of the NDIS would out­weigh the costs, in terms of com­mu­nity in­te­gra­tion, em­ploy­ment and ef­fi­ciently de­liv­ered ser­vices, and would add al­most 1% to Aus­tralia’s GDP. Fif­teen min­utes have passed on hold. Last time I waited for 45 min­utes. I get out the plan, the NDIS-gen­er­ated doc­u­ment that lists what dis­abil­ity ser­vices I have been given. I don’t un­der­stand this doc­u­ment. Pre­vi­ous dis­abil­ity ser­vices had prob­lems, but this is the first time I have not been able to un­der­stand the care plan.

About 12 years ago, when the help I needed be­came too much for David to do alone, I filled in the forms, ob­tained the re­quired oc­cu­pa­tional ther­apy and med­i­cal re­ports, and ap­plied to the rel­e­vant Vic­to­rian depart­ment for per­sonal care fund­ing. An of­fi­cial told me there was a long wait­ing list and that some­one al­ready on the scheme would have to die or go into hos­pi­tal for a place to be­come avail­able. I was re­ferred to my lo­cal coun­cil’s dis­abil­ity ser­vices. Again I went through a long process fill­ing in forms, and ob­tain­ing more OT re­ports. The coun­cil started pro­vid­ing me with a carer two hours per week at a sub­sidised rate.

Grad­u­ally the hours in­creased. At first David and I had fights about hav­ing these car­ers in our home. David es­pe­cially hated the in­tru­sion but we could not have kept up our jobs and our health with­out this help, so we adapted. There was lit­tle flex­i­bil­ity in the ser­vice. We could not choose our car­ers or, of­ten, the times they would come. My son was five at the time, and the coun­cil would not pro­vide the dis­abil­ity sup­port I needed to care for him. An­other time it in­sisted that two car­ers were re­quired to op­er­ate a hoist to lift me al­though I clearly only needed one. Then I was told the fund­ing would not stretch to two.

Af­ter about a year on the wait­ing list, the Vic­to­rian depart­ment ac­cepted me on its pro­gram. Even­tu­ally, it of­fered di­rect pay­ments so re­cip­i­ents could pay for the ser­vices with fund­ing de­posited into their own ac­counts.

I en­joyed the au­ton­omy un­der the evolved Vic­to­rian pro­gram. How­ever, as I grew weaker the fund­ing was in­suf­fi­cient to pay for the ad­di­tional per­sonal care that I needed. Three years ago, I ap­plied for more fund­ing. The pres­sure on David was too much, my abil­ity to main­tain my job was be­ing com­pro­mised. I was hav­ing to skip show­ers, I couldn’t get to the toi­let enough, and I had de­vel­oped a blad­der in­fec­tion. But the bud­get wasn’t there, and all the dis­abil­i­ties of­fi­cer could do was add me to the wait­ing list. Some peo­ple on the wait­ing list did not even have any ser­vices. Some were forced to live at home while wait­ing, depend­ing on their age­ing par­ents for care. An ac­quain­tance of mine only had enough funds for a carer to help her in and out of bed each day. Some­times she used the funds to pay for a carer to help take her out, and would be forced to spend the night sleep­ing in her wheel­chair.

My reliance on dis­abil­ity equip­ment in­creased. My house is full of it – elec­tric, travel and man­ual wheel­chairs, ramps, hoists, lift­ing beds, braces, com­modes and res­pi­ra­tory aids. I also need mod­i­fi­ca­tions to my car, home and of­fice, since ev­ery­thing is de­signed for the av­er­age able-bod­ied per­son. Some­thing is al­ways break­ing down and need­ing to be fixed. Be­cause the mar­ket is small, ev­ery­thing is ex­pen­sive – at least two or three times the price you would ex­pect for a com­pa­ra­ble main­stream item – and I can’t pay for it all my­self. There have been many times I wished I could, how­ever, be­cause the hoops I have had to jump through are hu­mil­i­at­ing and stress­ful, wast­ing the time and en­ergy I need to get on with life and my job.

Many peo­ple with dis­abil­i­ties ex­pe­ri­ence far greater chal­lenges. I have a sup­port­ive part­ner, am ed­u­cated and em­ployed, and can gen­er­ally speak up for my­self. How can peo­ple deal with the sys­tem if they don’t have all that? Be­cause of com­mu­ni­ca­tion dif­fi­cul­ties or the bi­ases of the in­sti­tu­tions pro­vid­ing their care, these peo­ple are less likely to be heard or be­lieved. Some have suf­fered sex­ual or vi­o­lent abuse at the hands of car­ers. Even where com­plaints were made, the abuse con­tin­ued be­cause ser­vice providers failed to act.

Thirty min­utes have passed on hold. I pick up the plan again. When an NDIS of­fi­cer an­swers, I will ask them to in­ter­pret the bu­reau­cratese for me. It is hu­mil­i­at­ing. I can’t be­lieve the NDIS is treat­ing plans like con­tracts, when we are not even given the chance to agree to them. The NDIS promised us choice and con­trol, but if a dis­abil­ity sup­port you need is not listed in the plan, you have to go through a lengthy re­view and make a whole new plan.

Thirty min­utes have passed on hold. When an NDIS of­fi­cer an­swers, I will ask them to in­ter­pret the bu­reau­cratese for me.

My en­try into the NDIS started with a phone call in May 2016 from a NDIS as­ses­sor called Nicole. She said I had to do a screen­ing as­sess­ment. She would guide me through a ques­tion­naire about my dis­abil­ity that would take about an hour. I ques­tioned the need for this when reams of cur­rent in­for­ma­tion about me were al­ready avail­able on my Vic­to­rian depart­ment file. Every­one, she said, has to do this ques­tion­naire to get on the NDIS. Assess­ments de­press me, es­pe­cially un­nec­es­sary ones. I spend all my en­ergy fo­cus­ing on what I can do and sud­denly I’m called to de­fine my deficits. It brings to mind the young male physio who as­sessed my spine. I thought I was look­ing rather fit in my bathers. He took one look at me and ca­su­ally said, Yep, the sco­l­io­sis sticks out like dogs’ balls. But it was the NDIS and I co-op­er­ated be­cause I wanted it to work.

Nicole read out the ques­tions one af­ter the other:

Can you stand?

Can you com­mu­ni­cate?

Can you feed your­self?

Was there any­thing you couldn’t do in the last two weeks? How would you rate your qual­ity of life?

The ques­tions went on and on.

Sev­eral times I asked her the pur­pose of the ques­tion, or its con­text. I’m just read­ing them out, Nicole said. Every­body gets the same ques­tions. At the end of the in­ter­view I asked her for a copy. She said that wasn’t pos­si­ble. As a gov­ern­ment agency, I said, un­der in­for­ma­tion pri­vacy laws, you are re­quired to give me ac­cess to my an­swers as recorded on the form. I’ll con­sult my man­ager, she said. Later she told me again it wasn’t pos­si­ble.

Af­ter six months with­out word, an NDIS of­fi­cer called Deirdre rang. She said that the re­sults from my screen­ing as­sess­ment had con­cluded that my dis­abil­ity needs were min­i­mal. How­ever, she had checked my med­i­cal and dis­abil­ity in­for­ma­tion on the Vic­to­rian depart­ment file, and re­alised this con­clu­sion was wrong. Deirdre told me I would have to re­peat parts of the screen­ing as­sess­ment. In an­swer to my query, she ex­plained that other par­tic­i­pants also had to do this, be­cause the ini­tial as­ses­sors did not have the train­ing to prop­erly in­ter­pret the ques­tions.

She re­vis­ited the ques­tions from the screen­ing as­sess­ment. You said you had no dif­fi­cul­ties manag­ing all house­hold re­spon­si­bil­i­ties, she said. Is that re­ally cor­rect? What the ques­tion re­ally meant was, can you ac­tu­ally phys­i­cally do the house­work your­self? No, I said, I mainly su­per­vise. She said, OK, that’s what I thought. It wasn’t prop­erly in­ter­preted for you. I will change the an­swer.

She went on. Ac­cord­ing to the ear­lier as­sess­ment, she said, you had no dif­fi­cul­ties so­cial­is­ing. How of­ten do you go out so­cially? Maybe once in four weeks, I an­swered, feel­ing ashamed. Why don’t you go out more of­ten? she asked. I said, I’m of­ten sore from sit­ting, or too tired from work. It’s dif­fi­cult to or­gan­ise, and friends’ houses, trans­port and many places aren’t ac­ces­si­ble. I felt even worse. Right, I’ll change that an­swer too, she said. I told her I must have thought at the ini­tial in­ter­view that the ques­tion was about my so­cial skills!

The next ques­tion was about per­sonal hy­giene. In the ear­lier as­sess­ment, you said you had no dif­fi­cul­ties manag­ing your hy­giene, she be­gan. Be­fore she had the chance to start in­ter­pret­ing the ques­tion, I blurted out, I know now you’re go­ing to say that the ques­tion was about whether I could shower my­self – I must have thought she was ask­ing me if I was dirty! I started laugh­ing, and when I tried to stop, more snig­gers erupted. Deirdre waited pa­tiently. She seemed like a nice woman try­ing hard to do a good job, and per­haps if we had been face to face she would have seen the joke of it too.

We con­tin­ued through the ques­tions. At the end, she added up the new scores. Be­fore you got 55.5 out of 100, or min­i­mal needs, she said. Now you have 88.8 – com­plex needs!

Then came the draft­ing of my plan. A face-to-face meet­ing was not nec­es­sary or pos­si­ble, Deirdre said. The plan would go to a del­e­gate. If it fol­lowed all the rules and didn’t gen­er­ate a re­view, it would be ap­proved. What rules? I asked. She told me each dis­abil­ity sup­port I asked for had to be rea­son­able and nec­es­sary, it had to be linked to a goal, it couldn’t be a sup­port

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