Terrible Palsy

To the person who searched “dealing with the miserable parents of handicapped children” and got this blog – Welcome!  Have a read!  I hope you enjoy the blog:-) 

This story is kinda long, so I’m going to do it in parts.  The first part started when my good friend Active Voice asked me if I was going to do a submission to the Parliamentary Secretary for Disability Services.  

Sure.  Why not.

My problem is that if I don’t do things straight away, I never get around to doing them.  So I sat down and blurted the whole letter out there and then.  This is what I wrote:-

Dear Mr S,

I write to you today to express my concerns of the current state and federal situation when it comes to anything disability related in our society.

I am the incredibly proud mum to four boys.  My second youngest child who is a strong-willed, energetic and delightful four year old, also has a severe form of cerebral palsy – a physical disability.  The last four years for our family has been filled with much laughter and tears.  We are incredibly fortunate that my son survived his extremely premature birth.  Though have faced a steep learning curve whilst we have come to terms with the cards we were dealt.

My husband and I are both Solicitors.    We both work incredibly hard looking after our client’s best interests, often each working in excess of 80 hours a week.  We do this out of necessity, not only love for our work.  We do this so that we can provide our son with what is really the necessities of life.  Again, we are fortunate enough to be in a position to do so.  But as a result of juggling our work/business and being our son’s full time carers, exhaustion has become just a part of our lives.  We have not slept a full night sleep in over 4 years. 

In my naivety, I thought that when we brought our brain injured son home from hospital, that we would receive regular support.  That there would be services there to support us.  That this is what our tax system was set up to do – support the less fortunate.  Instead, we took up our home son without any regular support.  We were placed on waiting lists.  No-one ever made any effort to let us know what possible services or programs we could access.  We were left to make our own way without a compass.

Over the last four years, I have met and developed a support group of other parents in similar situations to myself.  This didn’t happen as a result of anything other then sheer luck at times and a constant search for information.  I’ve found out about programs that would have helped my son and I after he grew to be too old to fit the criteria.  I have entered the world of intrusion where everyone thinks that they have the knowledge and ability to tell me how to parent my child.  A world where I am being continuously judged as to my ability to parent my child without any care or consideration as to what is best for the family.

Following my son’s birth, I was unable to work for almost 8 months.  When I finally found employment, I could only maintain this employment for a year, when a 5 day hospitalisation for pneumonia, sent me to the edge.  My employer could not understand why I needed to be with my son whilst he was in hospital.  After all, wasn’t that what the nurses were there for?  They didn’t understand that you can’t leave a sick child in hospital unattended as nurses are overworked and understaffed.  That to leave him alone is a recipe for disaster.  And whilst I spent the five days juggling hospital, providing surrogate family members to stay with him in hospital and trying to keep my employer happy, I realised that I had to admit defeat.  That I could not be the superwoman that I was expected to be.  That all the balls had fallen on the floor and it was time to regroup and work out the next move.

My break from the workforce lasted almost 2 years.  We became a one income family which made our lives incredibly difficult.  Whilst the government support payments recognised the extra expenses associated with having children, it does not recognise the extra expenses incurred when that child has a disability.  We have received and continue to receive the carer’s allowance.  This now equates to just over $100 per fortnight.  The yearly sum, including the carer’s bonus, is around $3,300.00.  In real terms, this yearly sum equates to:-

·      twice the cost of nappies for the year; or

·      almost ¾ of the cost of a manual wheelchair; or

·      a shower chair and a Kelly chair; or

·      fortnightly therapy for either occupational therapy, physiotherapy or speech therapy (but not each of these cause why would you need each of these therapies?) for a whole year; or

·      3/5 of the cost of a pony walking frame; or

·      1/3 of the cost of an electric wheelchair; or

·      1/10 of the cost of renovations to your house to allow access for a wheelchair (ramps, widening doors, rails etc).  Said in another way, the carer’s allowance will cover the costs of renovations after you have been receiving it for 10 years; or

·      1/20 of the cost of a converted motor vehicle to allow wheelchair access.  Put in the other way, you will pay the costs off in 20 years of receiving the carer’s allowance; or

·      the cost of a modified computer for schooling; or

·      15% of the yearly expenses to do an alternative therapy called ABR that benefits my son and his contractures; or

·      2 hours a week for a carer to come into the home and provide assistance.

If I had to, I could probably go on.  I hope I don’t have to.  It’s kinda depressing.  I’m sure you get my point.  And yet my husband and I continue to pay for all of the above stuff (save for the electric wheelchair where we got a partial subsidy) and also pay the normal rates of tax.

We have now applied for three successive years for assistance from Disability Services.  We have received three successive knock backs.  When I questioned our latest knock back, I was told that our family was rated that we needed regular assistance everyday.  However, as our family was not considered to be at risk of breakdown, then we were not a priority.  I was further informed that out of the 200 requests from families for assistance in our city, that only 5 were granted.  Do you want me to do the sums on that as well?  The population of our city is widely accepted as being in excess of 500,000 people.  That is one approval for every 100,000 people.  Cerebral palsy is presently thought to occur in at least one in every 1800 births.  The numbers just don’t stack up do they? 

So, what is the solution?  There are many solutions.  The wiki – What Carer’s Need contains many thoughtful solutions to everyday occurrences experienced by Carer’s and persons with disability alike.  The wiki can be located at http://whatcarersneed.wikispaces.com/.  This website was set up by my good friend and myself in the lead up to the federal government elections.  To be quite honest, the most effective means of support that could be given to my family at this present time is 100% tax deductibility for medical, therapy expenses, modifications/conversions and equipment.  We are slowly going broke paying for all these things.  We have now used up almost all the equity available in our house to fund necessities for our son.  I don’t know how we are going to continue to do this into our futures. 

Should you have any questions or require clarification of any issues, please do not hesitate to contact me.  I thank you for your time in considering this submission.

Yours faithfully,

Jacqui 

I sent it to Active Voice to have a check and with a couple of amendments (not included above as I’m on the wrong computer), I sent it off.

Would you believe I got a response from the guy within 40 minutes.  Knock me over with a feather!  I’m going to stop complaining about things I swear.  

I’ll let you know what happened in the next post.