Biting the Hand That Feeds Us!

I have written a letter I plan to send to some local politicians.  To understand it Centrelink is our Social Security benefits agency, and NDIA is a new system for funding disabled people.  Autism is impossible to explain.

Just a note I have met one person that defrauded Social Security; he was probably a Sociopath, definitely a drug addict, and being on Social Security was probably safer for society than anything else he could have done.  What’s more; they would have never caught him using assessments.  Assessments are probably easy to fake but the damage done to anxious, autistic people is incredibly high.

The letter:

10th January 2016

 

To Whom It May Concern,

I have just received a demand on my phone for my autistic, depressed and anxious daughter to attend a medical review in 3 days’ time.  This is better than last time when I received the information 2 hours after the proposed appointment.

The paperwork hasn’t arrived but the appointment paperwork last time arrived 5 days after the appointment.

My daughter received both demands in better time.  But the messages so terrified her that she did not tell anyone about them.

We have informed Centrelink numerous times not to send letters to Catherine because they traumatise her; they will not stop they just send us both copies presumably so we can both have the psychological damage.  But she doesn’t have to open letters; she can give them to me.  Telephone messages on the other hand are immediate and inescapable.  Always with the cheery adjunct “failure to comply may result in loss of benefit”.

The National Disability Insurance Scheme planner decided she should do a Job Capacity Assessment with Centrelink (I don’t remember the name).  Considering she is autistic they authorised 20 hours professional preparation so she could attend.  This was insufficient and it took significant family assistance to get Cat there.  The results were clear; she was not suitable for any of the current programs.

Half way through the final month we received notification that she was to attend a Job Capacity Assessment accompanied with the usual threat.  I spent 1 week telephoning every weekday; either being disconnected after a couple of hours, or my hours of waiting would take me past their time cut off.  When I finally got through I was assured there was no requirement for her to attend the 2nd appointment.  I thought I was safe; I took her name & the call had a receipt number.  But it was irrelevant she had missed her appointment she was going to be cut off. 

On my third visit to Centrelink Midland I waited over 2 hours to ask for a form (for the doctor to fill out, 2 weeks after filling out the first identical form.  Because I am autistic with depression and anxiety, I was stressed at my 3rd physical visit to this confusing and terrifying place in a month.

On my first visit I went to a counter instead of stopping at the invisible line (there were no customers waiting) to be approached.  I was reprimanded; I have agoraphobia & autism, it was both humiliating & terrifying, the carer with me did all the talking after that as I was mute (a temporary effect of stress).  The 2nd time my mother took me unfortunately this meant we had to take another of my children with me.  When my adult child fainted in fear & then started to tic I became immobile & mute, my mother could not physical get us out of the building.  The long wait was a blessing this time as I could move (with tics or stims) and could speak (with a stammer). 

Although visibly, physically in distress we did not at any time receive the slightest offer of assistance from any member of staff.  If people; like us, with known Neurological & Mental Health Issues are forced to attend these appointments isn’t it negligent to not even offer assistance.

But my 3rd visit catapulted me into tics; physical (stimming or repeated random movement) and verbal (repeated words or sounds).  This caused other customers sufficient distress that they said I was on drugs and dangerous.  A security guard moved close presumably to protect property as he offered me no assistance and did not even speak to me or return eye contact.  I progressed to scratching my arms & face and then hitting my fists & head into a pillar.  These symptoms are uncontrollable by me & have been medically documented; but Centrelink is too important for considerations like the physical safety of a mother of 4.

I was unable to leave the house or communicate by telephone for a while after that so the job of getting my daughter to her important appointment was done by Autism Association Support workers.  Because of the emergency of both carer (me) and person (my daughter) being overwhelmed they were given an extension because support workers need notice to attend appointments.

The reason she had to have 2 Job Capacity Assessments so close together was; according to Centrelink) because the NDIA had forced them to do the first, so she wasn’t going to get out of the randomly drawn second.  How much taxpayers’ money was wasted on 2 identical assessments including Centrelink personnel, the doctor’s time to write 2 reports separately, and the support workers’ time.

The support coordinator who attended the appointment with my daughter; the 2 weeks’ notice was insufficient to secure a support worker, informed me that they had been told it was over and there would be no further surprise appointments for a minimum of 2 years.

When I received the telephone message that my daughter had been required to attend an appointment 2 hours before I received the message; I was fortunately with my own support worker as I became extremely distressed.  On medical advice the support coordinator handled contacting Centrelink because I am the closest in my family to being able to cope with this kind of thing and I was already severely impaired by the stress.  Lovely timing less than a week before Christmas.

However the support coordinator has not been able to contact Centrelink in the last 3 weeks.  Working as she does for a government funded agency she is not permitted to exceed 2 hours in a telephone queue. 

Today my daughter & I received the message that she must attend an appointment in 3 days.

  • 3 days is insufficient time to organise a support worker to take Catherine or to organise care for her disabled sisters.
  • The appointment is over an hour away.
  • The appointment is outside of her own home (My daughter & I are both affected by agoraphobia).
  • The appointment is in a place she has never been (Fear of change & new places is a basic symptom of Autism)
  • This appointment is with a person she has never met (Fear of strangers is a basic symptom of Autism)
  • The qualifications of this person are not known to me. Autism is a neurological disorder not a mental health disorder.  Psychologists and Psychiatrists must be specially trained to deal with Autism, conventional treatments can cause severe psychological damage to a person with autism.

 

At the very least the stress of this meeting ihas already started to send both my daughter & myself backwards in terms of our progress.  A waste of a lot of professionals’ time and work.

 

If their specialist does not understand Autism; many medical professionals with no specialist training in autism believe that the treatments they use are universally applicable.  It is like giving a dog a feline enteritis vaccination (Cat flu).  If he is not the right specialist his report will be at best useless & at worst mean further tests and appointments.

 

My daughter is in a dangerous state of mind; members of the family are concerned she may be suicidal.  I am at a dangerous level of stress; family members are concerned I may enter a state of withdrawal & do myself harm.  My husband who is also disabled is also so highly stressed that he is already self harming.  My husband is likely the only available transport to this appointment.

 

How is it reasonable for Centrelink to do this much damage in the name of random checks?

Her disability is extremely well documented; by government agencies & specialists.  Her negative reactions are in line with her disability, they are not even uncommon for a person with her diagnosis. 
If Centrelink took away a blind person’s dog or stick, put them somewhere unfamiliar & told them to walk across an obstacle course or they would not receive the money they needed to buy things like food; there would be a huge public outcry.  Yet it appears there is no limit to the amount of pain & distress they are permitted to inflict on people with autism.

 

But who can we complain to?  There are 2 ways to communicate with a human at Centrelink; in person or by telephone.  In person means a wait potentially for hours in an area that could not be worse for a person with agoraphobia or sensory sensitivities if it were specifically designed that way.  No food or drink is permitted; this is an additional issue for some people with autism.  Then one speaks to a person; I have no idea of their qualification but the only results I have ever seen were; they gave you a form to fill out, or they took your form, checked it, made copies and/or typed the information into a computer and then tell you that you will be informed of the decision by letter, or if you ask a particularly difficult question they leave and ask a supervisor, regular people are not allowed to put their own questions to a supervisor.

 

On the phone usually means an even longer wait than in person.  Over the phone you can ask questions; but the answers are wrong much of the time; for example do I need to go to the second appointment.  If your question is difficult you have to go into the office.

 

Centrelink does not even allow regular people to make appointments, there is no ‘what day is suitable for you’, or ‘what day can you get transport’.  Centrelink staff at the office can  not make appointments if it is determined that an appointment is necessary by staff either

 In the office or the telephone they can not make that appointment they can merely send the information that an appointment is needed to somewhere else.

 

Beyond the opinion of the person you are speaking to; or if you are really lucky their supervisor, there is no way to get answers to your questions from Centrelink; that I have found.  The only communication between regular people and people who make decisions are forms.  If there is any issue that a regular person needs to communicate to anyone in Centrelink who can affect anything, that is not covered by a standard Centrelink form there is no vehicle for that communication.  Absolutely none!

 

Where do you even start?

 

Yours sincerely,

Lisa Holt.

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29 thoughts on “Biting the Hand That Feeds Us!

  1. I’ll bet you any money that because you write so well they’ll immediately jump to conclusions and assume you are bullshitting about your condition. No understanding at all.
    And I’ve had the same problem with therapists, no knowledge, qualifications, or experience in this field and yet some of them think they can just wing it. The damage they cause can be immense. It would be like me waltzing into a hospital and demanding to be allowed to perform open-heart surgery on people just because I read a book on first aid once.

    Liked by 2 people

    1. I’m okay, according to Centrelink I’m not disabled I’m the carer. Oddly enough NDIA accept me but they don’t accept my husband who Centrelink has completely written off as incurable. I studied psychology for a couple of years it was inane; every lecturer thought that his method was the universal cure to all human ills. So for a lot of psychologists it’s a matter of picking a side & mindlessly applying it to everything! Great to hear your thoughts, mate!

      Liked by 1 person

      1. I so agree with your comment here about some psychologists having uncritical confidence in their chosen theory/method, and applying it as a filter to anything and everyone. Sometimes I think that what type of a person and personality the psychologist is (including personality/empathy /life experiences) outweighs the theory/methodology she/he subscribes too. I remember reading somewhere (Jeffrey Masson perhaps?) that what we mostly all need from carers (and friends) is nothing more (or less) than genuine acknowledgement (of what we feel and have been through) – but understanding and insight can be hard to find. As your post more than underlines.

        Liked by 2 people

      2. To be fair though there are some open minded people who combine knowledge and genuine listening to be truly great psychologists, I have met a few that had brains, knowledge, empathy & openness and they are fantastic. But if I had to choose I’d go for a half trained idiot who was willing to change, to the most academically advanced closed minded specialist. You are right personality is so important. 🙂

        Liked by 1 person

    1. What frustrates me is the lack of logic, unfortunately that is an autistic trigger. A lot of us have real trouble dealing with things that don’t make sense to us. I know everyone does but if you have autism it is a new level of impossible.
      Sympathy helps a lot, thank you!

      Liked by 1 person

      1. Darn, I should have thought of that earlier. Alex on a bad day speaks nonsense like a native; she should be our family spokesman from now on. Oh darn I didn’t realise Alex reads over my shoulder now I have to scrape her off the floor.

        Liked by 1 person

  2. Hugs to you. I’m in the US and haven’t had that experience yet because my kids who are on the spectrum are not eligible for SSI yet. Your post made ME stressed and I’m thousands of miles away. I’m sorry you and your family had this experience…Sending support across the miles

    Liked by 2 people

    1. Thank you so much! I was expecting trolling, I’m so embarrassed at our dependence on Welfare. My child is 23 and was diagnosed late, I really hope your kids will be in a position not to need welfare, but if they do I hope constant pressure & education of the authorities will mean these things don’t happen by then. 🙂

      Like

  3. You wrote clearly and cogently about an unbelievably horrible situation–in fact, just reading about what you are going through made me shake, whereas you actually have the courage to fight back. You totally rock! I really hope this ordeal for your family is over soon

    Liked by 2 people

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