Friday Lunch at the Benalla Uniting Church in rural Victoria is a free two course meal for anyone, and for which I am a volunteer once a month. There are some older folk who live alone and come for the company, but mostly the people who come are long-term unemployed, and/or with mental problems, and their children. We cater for thirty but sometimes have more and have to stretch the food. It is amazing but there is always enough, and if there are not many present, "seconds" are very popular.
How I got to know Robin
I first "came across" Robin about 7 years ago, when he arrived at Friday Lunch. He didn't speak or make eye contact with anyone. He was not clean and rather smelly but everyone at Friday lunch has problems so he was respected by the other diners, and of course the volunteers. And then he just kept coming. At that time he used to walk everywhere, and for many hours a day, so it was no problem for him reach the Church.
I always felt that he needed help but it was impossible to reach him, and so time went by. Gradually he started to make eye contact and say a few words. Sometimes if the weather was extremely hot I would drive him home, or collect him beforehand. About 2 years ago his health began to fail and so I would say "Ring me if you need anything". I tried to convince him to have Meals on Wheels, to which I got the reply "they are only for old people". Well, I thought he was old already!
In 2013 he crashed his car in Shepparton due to a seizure or mini-stroke. He was transported to the Alfred, then back to the local hospital and a social worker took him home. Robin asked her to ring me. So I went to the house and for the first time went inside. It was appalling but more of this later. He needed something for dinner so off we went to the fish and chip shop where he was welcomed by name and asked who his girlfriend was! Having been in hospital he was at least clean!
After that he was in-and-out of hospital a few times, but I was not involved and didn't find out until he was home again. He was having falls, and a couple of seizures, and began to have trouble walking. This meant that he couldn't go to the Royal Hotel for a $9 lunch nor to get fish and chips for dinner. Malnutrition began but with someone who gives nothing away it is not easy to detect, and at this stage I didn't realise that his $9 lunch, and fish and chips, were what he survived on. His Friday shopping continued to be $1 bottles of red lemonade, and 3 boxes of cheddar shapes, and after a while it became apparent that apart from Friday lunch, this was all he was eating.
In October 2014 he fell on the way to Lunch and was rescued by a passerby, so I decided to take him to Emergency at the hospital. From there he was referred to the local clinic, and sent home (via me) with a prescription which I had made up, and then he told me that he already had those pills at home but had stopped taking them! By now the afternoon had nearly gone, so I left with my usual "Call me if you need me", and agreed to take him to Centrelink the following Monday.
It was then that I discovered that he was on New Start Allowance and had to report regularly to Centrelink. He was never going to start anything, but because he was only 64, he didn't qualify for the Age Pension and the only alternative is New Start. He said that someone had previously applied for a Disability Support Pension but it was unsuccessful. He was happy for me to attend Centrelink with him and, in reality, he could not have got in the door without me, so I resolved to get the forms to apply again. The employee took one look at Robin and handed them over, and we arranged for me to become his Centrelink nominee. He also had a doctor's appointment so I asked if I could come in while the GP filled in the medical section. Then I started on the rest of the form with Robin supplying the details such as bank accounts. I had to go into the house to get some information and to stop Robin from falling. The house got worse the further in you went.
What I discovered about Robin as I filled in the DSP forms
He has had a sad life with none of the joys we take for granted such as family, children, friends. He did year 11 at school and then worked in a local bank for a few years before being transferred to Kyneton. He wasn't happy there so returned to live with his parents in Benalla and never worked again. He had 3 brothers, one of whom died in childhood, one a few years ago in NSW, and his surviving brother lives in Box Hill but is not interested in helping Robin in any way. His father died in 1978 but he doesn't seem to have fond memories of him. He was "a mad scientist", qualified wireless operator, excellent mathematician, sometime teacher and inventor. His mother lived until 1996 and for some time Robin was her carer. After that he took to walking to fill in the day, and lost any practical skills he might have had in home maintenance, cooking etc. He knew almost no-one despite having lived here since the age of 17. Like many people with a fragile grip on real life, his literature showed that he was always seeking the spiritual dimension to life – from TV evangelists, to mainstream churches, to quackery, it was all in his house. As I got to know Robin better it became apparent that he had an excellent sense of humour. Never having had a partner or married, there were lots of questions on Centrelink forms that we were able to ignore, and he enjoyed the joke when I said "Gee I'm glad you never married Robin because we can skip from Question 39 to 72"! And he enjoyed teasing me if I forgot to pick him up – as I did a few times in the early days – with "if you remember"!
On Friday October 31st I arranged to take him home from Lunch but when I arrived one of the other volunteers had already loaded him into his car, with the help of one of the other clients, and took him home. I worried about him all afternoon as he was barely able to stand up, so I rang up and said that I would take him to the hospital. He was reluctant to go but agreed. It was after 5pm when I got him there. I said good-bye and left as I knew he would be admitted. Or did I?
The next morning I went to Medical ward to visit him and he wasn't there. I went to Emergency to see if they could throw any light on the matter. "Oh yes" the sister said "we said that we would like to admit him and asked if that would be alright and he said NO. So we called a taxi and sent him home". [This says a lot about the system where our "rights" are more important than our health]
I was worried about him but it is very hard to know when to interfere and take charge. Fortunately this was decided for me less than a week later when, on Thursday 6th November, the district nurse rang to say that she had called the ambulance for Robin and would I come and sit with him until it arrived. I was out, so heard this on the answering machine 40 minutes later. I rushed to his house but the ambulance had already collected him, so I went to Emergency again - this time with the knowledge that he absolutely could not go home, and therefore I would have to stay to ensure that he agreed to be admitted. This meant juggling my own commitments with the GP's visit to the hospital, and the various tests that were ordered, but I was there at the crucial time and he was admitted. From that moment my life took on "The Life of Robin".
As I said, he was admitted to hospital on Thursday 6th November and from that moment his life took a turn for the better. Firstly, it is a sad indictment of "the system" or modern society, but he was treated with much more respect because I was his friend - I cared, and I advocated for him with the staff and the GP. Secondly, he received regular meals, and thirdly someone else was taking care of day-to-day issues, which by the state of his house, he could no longer cope with. I visited him twice on Friday and also on the weekend. I introduced him to my husband, Alan, and Robin made eye contact and beamed at him. What a joy that was!
On Sunday the staff said that Robin might have to go home on Monday. I was appalled. I could not allow that to happen as, being only 64, he was not eligible for meals-on-wheels or home help (stated by the Community Care Co-ordinator), although the house was by now well beyond that. The only thing to do was to be at the hospital at 8am and stay until the GP arrived. I had no idea what was going to happen but I knew he wasn't going home. Fortunately the GP said that he would keep him until the end of the week which at least gave valuable time to make a plan. Robin also said to me that morning "Would you like to be my power of Attorney?" I thanked him for trusting me and said that of course I would do that. I didn't really have a choice. There was no-one else.
During the day I began to think about low care hostel accommodation and later in the afternoon on the way to the hospital I made a snap decision to visit "Cooinda" the local aged-care facility to make enquiries about how such accommodation was financed. I was welcomed by the Director of Nursing to whom I explained the situation. After chatting for a few minutes her next statement nearly blew me away "we will have a bed available next week". My prayers were answered. What a miracle!
That was a problem solved, but for me the work was just beginning, and the rest of the week is now a blur of filling in the hostel's form and Centrelink forms, getting a solicitor to the hospital, visiting, going to Robin's house many times, going to Cooinda, making sure that the Aged Care Assessment Team (ACAT) were requested to come, organising clothes for him in the Hostel (even buying underpants!), making sure that everything was done because Alan and I were going to be away the next week, and arranging for someone to actually take him from the hospital to the hostel, about 100 metres. At least he realised that he couldn't go home, agreed willingly to the hostel and moved there on 19 November 2014. We had a lovely week away and I came home refreshed ready to face the rest of the tasks.
Cleaning the property and preparing it for sale
What a job that was! Robin owned his small 1950s house which had to be sold and for this I needed help. Living in a small town does have its advantages and I was easily able to find someone to clean up the yard (Peter, the clerk of courts, in his spare time!); someone for the garage and someone to clean the house after I had "cleaned it up". The block of land is quite large (1/4 acre) and it took Peter 12 hours of solid work to remove all the rubbish, slash the grass and clear the paths. The rubbish was more than 3 cubic metres - that was the first skip filled to over flowing.
Then Alan and I started on the house. It was like a tip from front to back with papers, books, clothes both new and dirty, envelopes, fish and chip wrapping, and all manner of other items everywhere. Nothing had been thrown out or cleaned since his mother died in 1996 and possibly for longer. The cupboards contained mostly envelopes - all bills, all receipts, bank statements and the occasional personal letter were replaced in their envelopes with the date and details inscribed on the front. Sadly there were also many carefully concealed "girlie" pictures. Obviously Robin had no organisational skills, and there were lots of some things and nothing of others. For example I found 40 pairs of new socks scattered throughout. He was always cold in the house and I had a lot of trouble convincing him that in the hostel he would never be cold again. In fact I had to buy him new shoes/slippers because he always wore two pairs of thick socks so bought his shoes at least one size larger. It also became clear that today he would probably be classified as Aspergers Syndrome. He spent many hours doing higher maths calculations but only ever used a few pages in an exercise book before starting another one. There were hundreds of new exercise books, writing pads and note books around the house as well as all the hardly used ones. And biros in 5 different ink colours. He wanted to return to the house twice and mainly took his calculations, spare exercise books, biros and 5 new pocket calculators out of the twelve which were on the floor. I had to restrain him from more socks! Because of the state of the house an hour at a time was enough, but we got it all done with some help from a friend who smashed up lounge chairs to fit in the skip, and took his mother's bed to the tip. That was another 3 cubic metre skip full.
While we were in the house, Graeme was the man for the job in the large garage/shed. Like the house it hadn't been cleaned or organised for years and the third skip was soon filled. But there was another problem when we opened the only cupboard which was attached to one wall. It was about 4ft wide x 8ft high and eight inches deep with nine shelves and it was filled with a collection of at least 130 bottles and jars of analytical chemicals and poisons, all of which had not been touched for many years. Making enquiries I found that it was Robin's father's home laboratory which had not been touched since at the latest 1978, when he died! Many phone calls and visits to government authorities revealed that none of them were able to remove the chemicals. The best suggestion they had was for me to drive 100 kms to Wodonga where the tip had a facility to receive chemicals. Brilliant idea except that I certainly wasn't about to put this lethal cocktail in the car, and for many of the chemicals you require a permit to transport them. I persevered with phone calls and eventually some-one suggested Tox Free in Melbourne. What a relief to find a very helpful person on the end of my email! Yes they could do the job, so with photos and a description of some of the chemicals I received a quote - $2600! This was over the Christmas period and I was in a hurry as I couldn't have a garage sale or put the house on the market until they were removed. I was very relieved that Tox Free were not on holidays, and delighted when I received an email saying that the job would be done on New Years Eve.
I washed, cleaned, scrubbed, soaked and polished anything from inside the house which could be sold at a garage sale, and ascertained from the local antique dealer if any items were of value. None of the china or other small items were worth more than $25, but the furniture included some valuable pieces. Another complication in the garage was an 8ft deep pit which was popular with home mechanics for working on their cars. It had to be covered before the public could be on the property.
The cleaning lady was remarkable – a youngish woman whom I would not have expected to do that job and I kept apologising for the state of the house. She, however, was not fazed and set to work. Seven hours of work later it was done, and she bought some of the items for sale as well!
While all this was going on there was banking to sort out and the phone, still in his mother's name, to cancel. That could have been a nightmare but, by going to the local Telstra shop, it was done without any drama. The banking too was interesting. There was one CBA term deposit no longer extant - Robin had withdrawn the money and put it in a passbook account getting no interest; one account at GMCU which I didn't know existed; and the operating account at Bendigo Bank which was getting no interest although there was a 2% retirement account available. Now I have to deal only with a retirement account and a term deposit at Bendigo Bank, and a term deposit at GMCU. But there is always a trap waiting to catch me. I forgot to tell Centrelink that the account for his payment had changed, and I didn't find out until the pharmacist rang to say that his entitlement for $6 prescriptions had been cancelled.
Red tape is extraordinary and the wheels turn ever so slowly, but the staff are unfailingly polite, and as helpful as the regulations allow. In December I received a letter advising that Robin had to attend Centrelink in Wangaratta for a face-to-face interview as the last step in the process of applying for a Disability Support Pension. No amount of arguing could alter this, despite the fact that Robin had been assessed as needing hostel accommodation and been admitted. So on Monday 5th January we went to Wangaratta for an interview with psychologist Lyn. She began the conversation with the words "Haven't I seen you before Robin?" and proceeded to tell me that it was a social worker from Benalla Hospital who had previously gone through the same routine. That application for a DSP was not successful because the GP's certification was inadequate to say the least, and the social worker was supposed to get more medical evidence and re-submit the application. That was the last Robin saw of her! I also was horrified at the poor completion of the form by the GP, but Lyn said that it was better than last time! Being new to the world of Centrelink I didn't take the ACAT report but Lyn said that it would probably swing the decision in Robin's favour, and would I take it to Centrelink in Benalla that afternoon. When I returned home a Centrelink letter had been delivered – Robin had to report to Centrelink on Wednesday 7th to keep his New Start Payment. Good idea – I will do that for him this afternoon, but no, that would be too easy. He has to report on the actual day and not before! But I could do it online – more numbers and passwords – but it was satisfactory, and hopefully that is the last of Centrelink for a while.
Robin in the Hostel
He is blossoming! He sits at a table with five old ladies for meals and tells me which ones are mad! He initiates conversations and is well-liked. He buys himself a cappuccino at the hostel kiosk some mornings, and sits outside in the sunshine with some of the men before breakfast. He attends activities. He told me with amusement when I joined him for a coffee recently, that the hostel has a doll's house for sale. "Where is it" I said. He laughed – "Oh the men have to put it together!" "Are you doing that?" "Yes they have all the tools in the room down there". My routine with Robin is that every Friday morning I take him to the shops and then to Friday Lunch, and it seems we will have a coffee either at the hostel (only $2.50 there) or at a cafe, and Alan will join us sometimes.
The Garage Sale
The 24th January was the DAY. Graeme had covered the pit in the garage and cleaned up and sorted a most amazing collection of old tools, boxes, tins, planes, drills, miners pick etc etc. He organised and priced the items, mostly in groups ($10 the lot), for the sale, and in total spent 19 hours in the garage! The small items from the house were on 3 trestles outside the garage and we left the furniture inside. There were some typical garage sale pieces, as well as some valuable antiques.
We set the alarm for 5.30am and were at the house at 6.20am on a fine, warm, and cloudy morning, and Graeme was already waiting for buyers! One advertises a sale such as this for 8.00am but keen buyers always arrive early and the first ones were swarming around at 7.15am! Three friends arrived to help soon after, but went home about 9.30am because the rush was over. People kept coming right through the morning until at Noon we started to pack up what was left. Some of the later buyers got bargains as it was important to sell as much as possible, and some helped move heavy items and pack up at the end. One man bought a wardrobe for $10 (it was very ordinary) but when he came back to collect it, he decided that it wouldn't fit in his house. I offered to return his $10, but he said not to worry he would spend it on something else. And I managed to sell two things twice!!
Was the sale successful? It certainly was! We sold almost all the household goods, and 90% of the garage contents. There were buyers for three large antique items, two lovely clocks, and some of the cheaper furniture. A very nice piano, a smallish cedar dining table and five dining chairs remained, but later sold privately.
Some Interesting Items
Items of interest which I sold beforehand were headlamps and fog lamps for a car. We found them in the rafters in the garage and wondered what car they had belonged to. Enquiring from Robin, we learnt that his father owned an Austin Sheerline which were only in production from 1947- 1952. A friend referred me to the local newsagent who suggested the usual avenues such as the Austin Club, but I had already tried these through the Internet, and then he picked up a car magazine from the shelf. There, in club notices, was the Austin Sheerline Club with a telephone number, so I was able to sell the lights for $250 to someone who appreciated them. They were in our second bedroom for sometime while he and I looked for someone going to Bendigo, but the money was in the bank. Also in the rafters were a lot of old radio valves and other equipment which a radio ham friend sold for $70.
Pen and Alice visited us early in January and I showed them three old books from the house. One was an enormous (about 5 inches thick) Websters Dictionary; one "The Lives of the Popes" published in 1759 (with of course the "s" written as "f" etc); and the last one was entitled "City of the Seven Hills". Pen was intrigued by all three and generously paid the $150 I was hoping to get for them. Thanks Pen.
Benalla Museum bought WW1 and WW2 binoculars and a very fine brass telescope, and friends bought two exquisite lace crochet large oval dressing table mats.
After the Sale – Sunday 25th January
I went to the house this morning for my friend Jenni to collect some large items of furniture which she had bought. For this some extra young "muscle" was required, and I sold the piano and a bedside table to one of the lads. Another friend arrived and bought 3 dining chairs. What a sale it has been! The takings are over $4000 which will almost cover the expenses of getting the property to this stage.
Selling the house
The property had a "For Sale" sign put up the evening before the garage sale at $187,000 - $2000 above what two agents considered the upper limit. It was possibly only land value as the house was in a bad state. Robin and I need a quick sale so I had my fingers crossed for luck and it worked. The house sold on Tuesday 27th for the asking price! A local man whom I didn't know came to the garage sale and said that it was just what his brother was looking for, and that his brother would be in Benalla that long weekend and would contact the agent. It felt like a miracle had occurred as it could have been on the market for months.
The Disability Support Pension
The application for a DSP was rejected so I had to appeal that decision. You are notified of the decision with an unsigned computer generated form, and despite giving information about the appeal process, there is no information about where to appeal and to whom. Tina, a Centrelink staff member in Wangaratta, phoned to explain that Robin only had 15 points of impairment and he needed 20, and that an appeal would not reverse the decision but I said "Well I am still going to appeal". She then typed this into the computer and said than an Authorised Review Officer (ARO) would contact me by phone within 21 days. This was most unsatisfactory so I decided to get the ball rolling. I contacted the Nursing supervisor at the hostel. She arranged for me to meet the attending GP at the hostel to get better medical evidence for the DSP. There is nowhere on the application for supporting evidence such as the state of the house so I used parts of this document to write my own submission and took it and the GP's letter, to the local Centrelink. Wendy, who I have been fortunate to see each time, took the papers and scanned them in so that they would be waiting for the ARO when he/she was ready! So I wait again but not with much hope as the medical information was still basic.
So far our welfare system has let down a very vulnerable member of the community. Although he hasn't worked for many years, he has not asked for financial or other assistance. New Start Allowance does not cover his Daily Care Payment in the hostel and to any reasonable person he qualifies for a DSP, especially as he has been asessed by an Aged Care Assessment Team as needing permanent care. It is an indictment on our society that he is discriminated against in this way.
It is now Thursday 5 March (5 months have passed) and there is still hope.
Tina rang on Monday and said that she had found some other information which may enable Robin to get the DSP. (I like to think that she was feeling bad about the whole scenario!). What was needed was the nature of his impairment and the reason for care, likelihood of discharge, and his ability to perform activities of daily living. I said that I would ask the Nursing Supervisor and Tina said that would be perfect! A phone call to Cooinda, and two hours later I had a most informative document, which I am lodged at Centrelink Benalla that afternoon. This time I am very hopeful but have been advised that the decision will still take weeks.
Payment for the Hostel Accommodation
The bond, now called the Residential Accommodation Deposit, is a minefield and as one government employee at one of the numerous agencies told me "the RAD is in the land of no-one". That is, everything is strictly regulated except the RAD for which a hostel can charge what it likes, and if you are unable to pay the full amount, the resident is charged interest at 6.63% on the balance. Who can get that rate on their own money? The RAD for the hostel is $300,000 which Robin didn't have, and the advice from "all and sundry" was you will have to negotiate to bring the amount down. With the $180,000 from the house I thought that we could manage a RAD of $200,00, with interest on $50,000, so was relieved when I was informed that the RAD would be $250,000. In fact, I have paid $220,000 with interest to be paid on only $30,000, and this still leaves enough for emergencies.
Victory and Justice at last
On Thursday 12 March Tina rang to say that the DSP had been approved and would be back paid to October 11th as originally promised. This was a great relief as Robin's finances were going backward fast with only Newstart Allowance as income, and interest on $300,000 for 5 months until the money from the house was available.
Final thoughts on the journey with Robin
It has been amazing, interesting, fascinating, frustrating. The work has been time-consuming and dirty. I have learnt an enormous amount about all sorts of things and been exhausted. When I didn't know which way to turn, the solution was supplied, and each small achievement gave much joy. But best of all it has been worthwhile. Robin is very content in the hostel and doesn't rely on me, except on Fridays to take him to Friday Lunch, to buy anything he needs, and to collect the all-important Powerball ticket at Tatts. I still don't know what that is but he tells me that he will have the necessary numbers to win millions in a couple of weeks! Here's hoping!
It has been a rare privilege to save a life and to see it blossom.