1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

seeking thoughts on a letter Im about to send to SADisability service

Discussion in 'General ME/CFS Discussion' started by taniaaust1, Feb 9, 2013.

  1. taniaaust1

    taniaaust1

    Messages:
    8,243
    Likes:
    5,211
    Sth Australia
    Im having a bad time with states disability org. as my current needs arent being met. Can people please tell me if this letter sounds okay or not.. does it sound too harsh? anything I should add to it or change?

    Here's my letter Im thinking of sending them

    "
    To Whom it May Concern.
    Im writing in regards to my home support not being swapped over to a new support org in "reasonable time" and of the actual negative impacts this has had on me and my health. Before I moved, I was reassured as I'd been concerned that home support wouldnt be put in place quickly enough when I moved to not have negative impacts on me... that it would be done in a reasonable time. DisabilitySA knew the date of my move etc etc (actually 2-3 before I moved.. it may of been longer I cant remember.. as I had to get the date to be out of the house extended twice as I found it IMPOSSIBLE to be able to do the moving stuff in time due to my health even thou I was getting some help).

    I'd think a "reasonable time" would be one in which a clients health isnt going to be made actually WORST or causing medical issues by the impact of not having the support in place, the fact that my health is EXTREMELY VULERABLE due to having so many different symptoms of the ME/CFS and by doing any more then I currently do (or should do) can make me FAR SICKER... it dont seem that came into the decision at all on what was a reasonable time and what wasnt.

    Also is waiting weeks for my support to be swapped over and put in place reasonable when I cant do many things which are NECESSARY in life? eg jobs which involve just standing (due to Postural Orthostatic Tachycardia Sydrome. POTS.. an issue caused ME/CFS) without risk of an unconscious collapse or seizure like incidents (possibly while holding a knife in my hand if Im doing something like the dishes at the time).

    I moved into the new home and ended up not being able to get anyone to do my dishes for me for the next 2.5 weeks (an elderly friend of my mothers got a lift from another as she didnt drive and got dropped off at my placecaafter 2.5 weeks and did them as she knew I was distressed about the situation). Having dirty dishes sitting in my kitchen that long, resulted in ants all over my house which were even biting me and waking me up in bed alseep (as currently my bed isnt put together so my mattress is on the floor). This ant issue which resulted from dishes going unwashed here for weeks due to my health issues..the ants since I moved in have had a big party as no one here to do the cleaning things I cant myself do. This issue has now resulted in me having to ring yesterday in the early hours of the morning.. the out of hours dr as I ended up getting an ant in my ear so got woken up with something which I didnt know what at the time.. moving about inside of it. Dirty dishes left for weeks is also a HYGIENE issue.

    That's just a start of the issues the home support not being put in place in the time my condition needed it to be done. Cause my health has been run down more DUE TO HAVING TO DO MORE re lack of home support.. in the past 2-3 weeks Ive ended up going throu all kinds of symptoms I rarely get (well since Ive had the home support in place originally.. this helps stop me from getting sicker).

    Ive now had some "viral reactivation" thingy going on cause Ive got run down while still waiting for the support to happen (or when Im run down Im extremely suspectable to anything going around thou I hardly see anyone at all.. .anyway.. I usualy get sick as soon as I get run down if I do more physical stuff in my life eg have to do more home things or if Im put under any stress at all which then affects my immune system too). This has resulted in giving me a 3 week cough esp at night and left me with issue with my chest (much discomfort there).

    I FINALLY got to go to doctors on the 8th Feb and after listening to my chest, she's given me Salbutamol (an asthma pufffer to help my chest and it sounded like she was suggesting I have asthma going on). Note.. a doctors never had to put me on asthma puffers before.. this was the direct result from moving and not having the support I needed to do so and hence having to do more then I usually do and pushing my body too hard so suddenly Ive got a viral thing again making me sick.

    My condition is so bad that the dr I saw (Dr Belinda Coyte is the dr I saw.. I'd been recommended to her throu contacts with another dr, due to her knowledge on a rare condition I probably have that often goes with my other conditions) kept asking if she could ring an ambulance for me cause I collapsed onto the floor of in her waiting room.. to sick to even be able to leave my home for long and be able to just sit in the medical waiting room in a seat. I was on floor in tremors (cause I over did things just by leaving my house that day) in a hot flush sweat and too weak to get myself up off the floor. I think I may of had tachycardia too.. my POTS flaring up (she had to take my pulse and BP a few times after I got assisted off the floor and onto her clinic bed). In reality I probably should have a wheelchair and are actually sicker due to my condition I'd think then MOST of your wheelchair patients but for some reason home support for me wasnt arranged promptly by your agency and now my whole health is worst due to that. I feel like my needs for prompt home support put in place again were not properly assessed and I feel like I wasnt listened to in my concerns about lack of home support once I move.. and now its too late.. Im sicker. :(

    Im now feeling more exhausted and able to do LESS then I could do before I moved.. being forced to do more eg cook more or miss out thou I have missed out on some of my meals, a situation which probably didnt help my immune system either (my home support used to cover making some of my meals too).. and have no idea how long it may take my health to pick up to the point it was up before the move and before I lost my home support. My health is so run down now that again Im having outbreaks (and completely new health issues too) of various things. I'll include some photos of other things the lack of home support has caused me to get in the past 3 weeks (unfortunately most of my health issues thou cant be seen with ones eyes unless Im seen collapsing onto the floor) .

    Ive never got sores from the medical support stockings I need to wear for the POTS before (to try to keep enough blood in my brain when Im upright) anyway... suddenly I started breaking out in sores over my legs from my medical compression stockings (photo was taken some time later when these were almost healed)... I have Multiple Chemical Sensitivity as part of my ME/CFSD and suddenly became sensitive to the silcone in the stockings for a while causing the skin to start coming off my legs where the silicone which holds my stockings up touch (and then wasnt able to go to a dr about it as I didnt have a way to get to one, thou I need to wear those stockings for the POTS sso my lack of being able to wear them just was making me sicker.. more dizzy, lack of blood to my brain..able to stand up even less).


    This other photo is of one of the lumps which appeared on my tongue as I was too run down (asnt able to get to a doctor about my mouth lumps either while it was going on)...
    I dont know how much your agency knows about ME/CFS but it obviouisly doesnt know as much about it as it should , it isnt just about a person being tired!! as there doesnt seem to have been the awareness there of that me having to try to do more was going to make me sicker or the severity of severe ME/CFS patients and the interaction of the effects of doing too much or stress also (its been highly stressful having things like over 2 weeks dishes and ants crawling all over my place along with the other things I wished I could do which needed to be done but which I couldnt do) and how doing more can trigger off so MANY different symptoms in us and make us sicker. (I get over 90 different symptoms with the illness and hence its horrific if mine is being set off as I dont know what my body is going to start to do next or how sick I will get or how long it will take for me to recover from overdoing something eg by just trying to meet normal daily life needs..which I actually cant in fact do).

    I do not know if the red cross will accept even giving me a ride to a medical appointment appointment again due to my collapse (which was only lucky I didnt go completely unconscious at the time) which the red cross guy also saw at the doctors (He had to wait for probably an hour more then I'd booked him for the dr to be able to deal with my collapse etc etc. I'd said I'd be an hour..and I was more like 2hrs). He said they can deem people too sick to transport and heard the doctor asking several times if I wanted her to call an ambulance to get me to hospital (unsuitable place for me esp with the nurses who wear perfumes so I said no.. hospitals always keep me in overnight then say my doctors should be dealing with me as its a "chronic" health issue which needs treating by my GP or specialists so then kick me out..my medical issues are highly specialised areas and most hospitals do not have a specialist in them). Red cross is unsuitable for my transport needs anyway.. as they said they usually pick up several people and as I can have very bad reactions to perfume eg it can cause me to collapse (on top of the POTS also causing my collapses).. So that isnt a good option for me to use to get to medical appointments.

    (Im noting all this down in my letter as the other day one of your DisabilitySA people told me they had no awareness of my transport issues in getting to the medical appointments I need thou Ive mentioned it to people there more then several times over the time Ive been a client there and even before. So it was upsetting to be told as this has always been one of the main iseus Ive mentioned many times (Ive discussed this with Gus before with my boyfriend present and to others at DisablitySA too).. that nothing was known about it. I feel like no one is reallly listening. Now that you have it there in writing rathert then verbally..no one can at DisabiolitySA say you dont know about this.)

    Ive heard that your wheelchair clients are arranged home support swap overs quicker then what's happened for me... but most of those probably have their houses modified so at least they can be at a sink and do their dishes while waiting for home support to be switched over to a different org if they move. I dont even have that option so I'd think my case is even worst then many of those. Most of your wheelchair clients probably arent at a huge risk of quickly worsening health issues either if placed under stress and having to attempt to do more then I should be doing for how bad my condition is..

    I feel with the length of time its taken to do the change over, I dont know if its the case or not but I feel like Ive been discriminated against based on my ME/CFS diagnoses rather then what medical issues Ive got from it and what my needs actually are/were. (fortunately I got someone to take me shopping otherwise I would of been without food for the last 3 weeks as I CAN NOT go to the shops alone even in a taxi due to the risk of my collapsing while there. I could of been easily left without food for THREE weeks while waiting for the home support to be changed over as my boyfriend who helps me at times is away a lot..currently he's back in Sydney right at this very moment)..

    Im writing this letter as a complaint so please make sure it gets to where it needs to go. as I got told the wait Ive had is an reasonable one..but is it in fact reasonable if it was forseeable that such a wait would make a clients health go downhill more and worst?? which was the case with me. Im now on a asthma puffer due to not rapid enough service put back in place, among all the other issues it has caused for me.

    Every time I ring there, someone asks me if Im happy in my new home.. I love this new home but the experience has been like a nightmarish so no Im not at all enjoying my new home like i should of been able to do.. with what the no home support currently has put me throu.. back to missing my meals at times, not being able to find important things due to my gear being packed in boxes and with no one to help me unpack from the move.. it took 3-4 days for me just to find things like my cooking utensils.. I was trying to turn eggs with sticks!!! Not well enough to go throu boxes to try to find things. 10 days before I found my sheets and was able to put on onto my bed so was sleeping without a sheet (something I do not at all usually do) and so many other issues due to things still in boxes as I not well enough to do much and not able to go to shops to get urgent stuff. (I had no milk for 3-4 days). I havent even got things like my dresses in my wardrobe yet. still all packed in boxes.. at least i found my pjs the other day.

    Tanya Selth.

    ps.. I want a response in writing to a couple of questions I have as Ive been told DIFFERENT things from different people and hence dont know what is going on and I want this to be clear.
    1/ I rang DisabilitySA ..I think it was on Friday so that would make it the ??? (its sunday today I think so 2-3ago) . I think Ive been dealing with Gus when I usually call? (thou currently feeling confused if I ws dealing with Victor Habour branch or another branch of DisabilitySA and if it was Gus or not). The duty officer on that day (I asked for Gus but he wasnt working that day), told me that the home support agency didnt even have my contract yet and that the application had been only put in 3 days earlier.

    Whoever has been dealing with me (Gus??) thou old me the application was put in while ago (probably about 2 weeks ago now. So im being told completely different things). There was a big home support agency mixup with the wrong agency who came out to home visit me (Calverysilver Circle?. The ladies name was Jo who came out with another person) and arranged home support with me which was done..only then to have them ring day before the day they were actually going to start doing the home support to be told they were still waiting on the DisabilitySA contract for me. At that time I spoke to the one who was arranging things at DisabilitySA and it was at that point I found out there was a big mixout.. and the DisabilitySA person (a guy) said that a different agency (CSI) had my contract there. If that was in fact true.. why was I on Friday (or it may of been Thursday) told that the home support agency by this other (the duty officer lady) that the home support agency hasnt yet even got my contract??? and said it still had to go throu approval. Are I being lied too?? or are people at DisabilitySA makng mistakes hence telling me different things? Im wanting now to know what is going on in writing as I keep being told different things via different people there.

    2/ Other government agencies when I rang them upset over the fact I havent been able to get to any needed medical appointments for weeks and desperating trying to do so (I think it was 6 weeks since I last cancelled out a follow up appointment in regards to my new treatments with one of my specialists as II couldnt get to and do, due to a lack of transport and cause my health was so badly run down by my house move which then necessitated in me having to do less.. so havent made others I need for follow up with my specialists/doctors). They (gov services health advice lines etc) didnt understand at all why DisabilitySA isnt providing me with transport to get to my medical appointments and said DisabilitySA usually sort that for clients. So Im asking and would like the reply in writing as Im wondering if Im being lied to or not (are I being discriminated against due to having ME/CFS?? which for many is a controversal illness and Ive struck must biased from others in the past due to the diagnoses name and thier lack of knowledge of ME).

    Is it is true what Ive been told by your department, that they dont arrange for clients to be able to get to their specialists and drs? I'd like to know the exact rule and policy DisabilitySA have around helping clients get to medical appointments thing. Are other of your clients getting transport arranged by DisabiltySA over 10 kms arranged to get them to specialists ?. (Im quite willing to pay car costs and petrol but if im paying for hours.. The Disability pension dont go far at all.. as it is I had to pay over $40 for the red cross to get me to an apppointment (+ annual joining fee) $40 which is probably the same price as a full price taxi would of been.. but with the taxis.. I have issues with the air fresheners many of them hand in their cars so once again not a good option for me due to health grounds, they make me sick).. So big issue for me right now is lack of any suitable transport I can use to get me to medical appointments which dont put me at risk of having a collapse or makes me do. Usually need my feet up in a car eg often have to put up by the dashboard or often need to put my need back to lay (needed to do that in red cross car but still had a collapse at the doctors clinic making her want to ring an ambulance).. and need to if others are in the car too have them wearing no perfume Im going to get sick or collapse from).


    Looking forward to getting some clarification on the whole thing. If DisabilitySA cant at all help me with my transport so Im able to attend medical appointments I need, can you please tell me who I need to contact in regard to these issues in your response letter.

    Thanks
    .........
    reminder to myself.. dont forget to include the photos
     
  2. Lynne B

    Lynne B Senior Member

    Messages:
    106
    Likes:
    97
    sydney, australia
    Hi, Tania,

    Some thoughts: Don't address it 'to whom it may concern', because then it's no one's responsibility.Ring up and find out who to send it to, such as the Secretary or Head of the Department. Use the correct name of the Department itself, as well as its street and mailing address. Give the date and your own particulars and phone number. Head it 'Dear Sir/Madam', or similar. Perhaps mention a case number if you have any.

    You want to sound like a reasonable, educated, middle-class citizen, as though you were one of them. And you want the letter to sound like a reasonable complaint or request, one that can and should be solved promptly.

    As to the letter itself, shorten it to about one third of its current length and only discuss your main points. Delete repetition and intricate explanations. Correct the grammar.

    What do you want the letter to achieve for you? Tell them that, and only that, and ask for an early reply.

    cheers, Lynne
     
    Valentijn, Ema and Sea like this.
  3. Ema

    Ema Senior Member

    Messages:
    3,493
    Likes:
    3,968
    Midwest USA
    Hi Tania
    I think Lynne has given you really excellent advice.

    It is way too long and that makes it less likely to be read. It needs to be super concise and you can expand on your complaints on follow up once you make contact with a suitable person.

    Make it super clear what you are requesting them to do and give them a time expectation as well.

    I'm sorry you're having such a rough time. If you need help with the editing, let me know and I'm happy to take a stab at it.

    Ema
     
  4. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,881
    Likes:
    962
    US
    I don't think grammar matters, but I agree they would be happier if the letter was shorter. If they get confused they might decide to put your letter to the side for a few days?
     
  5. jimells

    jimells Senior Member

    Messages:
    527
    Likes:
    870
    northern Maine
    Hi Tania, I agree with the other folks that shorter is usually better. Think "Executive Summary", if you know what I mean. It's hard to hold an executive's attention for more than one page before they are interupted. If you can find a written policy that states when they are supposed to respond, and what they are supposed to do, it could be helpful to quote part of the policy and show how the agency failed to follow their own rules.

    If they made a decision that you don't qualify for some service, there may be an appeals process, where you can ask for a hearing before some kind of neutral hearing officer. My state Dept of Health and Human Services periodically tries to kick me off Medicaid, which pays for medical care. Then I have to ask for a hearing, ask the Legal Aid people for a lawyer to help me, etc. Eventually DHHS gives up and my benefits continue for another year before it starts all over again. They are counting on folks just giving up, because they can't take the stress. I won't give them the satisfaction.

    And I'm sure you won't either.

    Good luck.
     
    Valentijn likes this.
  6. Lynne B

    Lynne B Senior Member

    Messages:
    106
    Likes:
    97
    sydney, australia
    Hi, Tania,

    I feel like we might be bombarding you with advice here, but I like Valentijn's advice on your other thread also, about keeping notes of all calls and copies of your correspondence. I've never tried asking a department to confirm my summary of the calls and promises or decisions made in them. It could be interesting, though, if you had the energy.

    Anyway, once again, good luck. And if you can't do all of what we suggest, just do what you can.

    Cheers, Lynne
     
  7. taniaaust1

    taniaaust1

    Messages:
    8,243
    Likes:
    5,211
    Sth Australia
    thanks all for the comments. I'll respond more another time.. im so needing a stress day today. Im so drained emotionally and mentally over what is going on and thats now affecting me physically.

    Thanks again
    I will try to shorten that email tomorrow. Ill see if my boyfriend will help as he gets back from Sydney again tomorrow.... as the whole thing is really sapping my energy to the point that im not now even unpacking from the house move (havent done any unpacking at all for past two days).
     
    Valentijn likes this.
  8. angieishere44

    angieishere44

    Messages:
    7
    Likes:
    2
    Yes what every one else said along with the fact that if its not short and to the point, they won't read it. I don't know the rules for disability over there and i wanted to ask if you have insurance, we call it medicare or medicaid in the U.S. and that's who handles all the transportation issues, medication issues etc., Either way you should have a case worker who's job it is to tell you about all these services and help you get the ones you need. I hope you find enough information here to help you move through the bureaucratic maze to get some help.
     

See more popular forum discussions.

Share This Page