I grew up next door to Morris Iemma* (well his parents house backed onto the back of my parents home). In fact Morris went to school with my brother whilst I went to the girl’s school. There are many similarities in our childhood, my father worked for Sydney City Council and my mother worked in factories around the Alexandria area. Both my parents struggled and worked hard.

 (*Morris Iemma is the Premier of NSW)

However the major difference in our stories is that I was 16 when my father died (from problems associated with his World War 2 service and also the fact that he had had a very hard life caring for himself from the age of 13 when both his parents died) and I subsequently left school to work. I have worked most of my life only taking a break to raise my two daughters until they started school (5 years) and whilst I studied. During that time my husband supported us. I was in my late 20’s when I returned to school and completed my HSC. I then went to university and obtained a Bachelor of Applied Science in Occupational Therapy. Prior to Alexander’s birth I had begun working as an Occupational Therapist. I am now a sole parent because when my marriage of 16 years broke down I entered into a long term relationship with my son’s father, Glenn.  After 2 years in this relationship Glenn sexually assaulted my then teenage daughter and I refused to go back into the relationship.

 Because of Alex’s disability and the fact that he requires constant care 24 hours a day I have been unable to return to work. It is not because I am caught in the welfare trap, I have tried to work, but the level of care that Alex needs has made it impossible for me to hold down a job. So at the current time I am totally dependent on government assistance, via parenting payment ($238.15 pw), family tax benefit ($109.55 pw) and the carer allowance ($46.20) to live and to support my son. I receive no child support because the Child Support Agency cannot find Alex’s father, even though he was convicted of the child sexual offence in 1994. Currently there is over $10,000 owing in child support arrears; however that is possibly an underestimate because he has not completed a tax return in over 8 years.

 I am writing because Alex and I are in urgent need of help, and I hope that you will be able to help us. We find ourselves in an impossible situation at the moment due to the appalling state of disability services and the impossible contradictions that exist within the systems of both health and disability. At the present time it has reached the point where I have been advised to and may actually have to ask the NSW Department of Community Services to make Alex a ward of the state for 2 weeks simply so that I can go into hospital and have urgently needed surgery.

 I do not believe that I should be forced into a situation where I should need to even consider having to make my son a Ward of the State, simply so that I can access respite care for an emergency situation. Especially not when Centrelink and Senator Patterson are telling me that he is not disabled enough to receive the Carer Payment and at the same time the Commonwealth Carer Respite Service is telling me that he is too disabled to access respite care services even in emergency.

 Primarily I am concerned about

 This letter is long, for which I apologise, however it is only so because I have endeavoured to be complete, thorough and accurate in order that you have the complete picture of Alex and I and also the complete disarray of the Commonwealth and State systems for those with a disability. Where possible I have referenced sources and information.

 Trisomy 18 effects every stage of the babies development in utero and every body system can be effected, often quite severely. The effects are far more severe than Down syndrome and consequently most doctors deem trisomy 18 to be “incompatible with life”

 Evidence of Trisomy 18 is actively sought prenatally because if diagnosed parents are actively encouraged to terminate due to the severity of the condition. Greater than 90% of pregnancies diagnosed as being affected by a trisomy (other than Down syndrome), of which Trisomy 18 is the most common, prenatally result in the termination of the pregnancy. Statistically 40% of children born with trisomy 18 will die within the first week of life, 60% within the first month and 90% will not live to see their first birthday. Of those who do reach the age of one, only 1% will live to see their 10^th birthday. In Victoria there has not been a live birth for a child affected by t-18 in at least 2 years.

 The prognosis for children with trisomy 18 is that if they do survive they will be profoundly affected, physically, intellectually and medically. They are not expected to walk, talk or even recognise their parents. Given this scenario most parents opt not to actively intervene after birth once a trisomy is diagnosed because of the severity of the condition. Instead they allow the multiple physical anomalies to go untreated, some even opt not to place a feeding tube, and allow the baby to die. Indeed this condition is viewed as so severe that in the UK recently doctors took a mother to court and won the right not to resuscitate a child because he suffered from Trisomy 18. (Luke Winston-Jones)

 I admit that had the results of testing been made known to me prenatally I would have joined the majority of the population and not continued with the pregnancy.

 However in Alexander’s case the hospital failed to give me the results of the prenatal testing and for whatever reason, there was an error with the blood test taken by the hospital when Alexander was born. The only explanation that they can give me for the error is that it was not Alexander’s blood that was tested.

 Consequently Alex was treated quite individually, each problem as it presented was treated and I was constantly assured that given time he would catch up. He was 19 months old before his correct diagnosis was known. I was offered at that point the option of withdrawing treatment and allowing “nature to take its course”, however after 19 months we had already been through so much, including multiple surgeries. I could see a child who wanted to live, who was nothing like the “vegetable” described in the medical texts and so we decided to keep on trying. Unfortunately many within the medical profession saw this as unrealistic and obtaining care for Alex got harder and harder. We have on a number of occasions been refused medical care when it has been needed based purely on his genetic diagnosis.

 Alex is now 10 years old. As you can see from his photograph he is a beautiful little boy who is very full of life. He attends mainstream school, albeit with a full time teacher’s aid by his side. For the most part he keeps up with mainstream curriculum even though he misses on average a 1/3 of the school year each year due to illness and hospitalisations. He is active in the 1^st Kirrawee Cub Scouts and absolutely adores abseiling and kayaking. Last Christmas, thanks to our local community who helped me raise almost $1,000 for the modifications, I was able to purchase Alex a latex free bicycle which he is now learning to ride. He loves animals of all types and has a therapy dog who is his constant companion, a cat and chickens from which he earns his pocket money by selling the eggs to neighbours. His latest “pets” are the unusual Maclay Spectre Stick Insects.

 On the other side of the coin Alex has many complex medical and developmental issues. One of the most life threatening is Shapiro’s Syndrome

Shapiro’s Syndrome

Alex suffers from an extremely rare medical condition known as Shapiro’s Syndrome. Shapiro’s Syndrome is thought to be a disorder of the hypothalamus, a small gland in the centre of the brain. Signs that he has Shapiro’s Syndrome that are evident every day are his inability to shiver and the fact that he does not produce tears. At times however, for no discernable reason, the hypothalamus starts to malfunction and produces too much of the wrong chemicals. This leads to what is known as a Shapiro’s Crisis.

 During a crisis Alex begins to perspire profusely, in fact the sweating is so profuse that he can dehydrate in an hour during a severe crisis. With the profuse sweating Alex’s body temperature begins to drop. During a mild crisis he can become mildly hypothermic (34.5^O – 35.0 ^O Celsius) however if not treated or a severe crisis develops his body temperature can drop to less than 32 ^O Celsius. In further response to the crisis he becomes bradycardic (slow heart rate), his blood pressure drops. His breathing becomes shallower and shallower until he begins to have apneic episodes (periods where he stops breathing).

 Whilst this is happening Alex loses consciousness. As the crisis progresses Alex, can and has on at least 4 occasions gone into cardiac arrest due to the increasing bradycardia (slow heart rate) and hypotension (low blood pressure). After the 4^th cardiac arrest in 1999 the surgeon implanted a pacemaker to try and prevent cardiac arrest during a crisis leaving us more able to cope with the respiratory arrests, rewarming, keeping him hydrated and his electrolytes balanced and so on.

 There is little that can be done to stop a crisis once it has progressed past a certain point, other than to support his bodily functions. The primary aim with the management of these crises is to detect them early and try and stop Alex getting too hypothermic from the outset. This is done by keeping him dry and in so doing preventing the perspiration speeding the cooling of his body. We also aim to prevent the loss of body heat and to rewarm him with blankets, heaters and such. We cannot use direct heat such as an electric blanket as heating him too quickly leads to him having a seizure. One day I hope to have the funds to purchase a “tastic” light to install above his bed as they have in the hospital.

 Fluids are given continuously, at home using his gastrostomy (Alex is usually unconscious, or else his level of consciousness is impaired compromising his already poor swallow). If Alex is in hospital fluids are replaced both via the gastrostomy and via IV fluids.

 His breathing, heart rate and temperature are monitored constantly during a crisis. If he starts having apnoeas he is placed onto Bi-PAP, a form of home ventilation. If he goes into respiratory arrest I use oxygen therapy combined with either Bi-PAP or artificial respiration. Additionally his blood sugars need to be monitored as the crisis burns most of his available sugar complicating the fact that he sufferers from hypoglycaemia.

 There are two medications which we can use during a crisis. Midazolam, a form of sedative usually used for seizures. This gives us a short lived (about 30 minutes to an hour) rise in body temperature of around 1 degree. It is used primarily to buy time whilst manual rewarming is started. The other is Clonidine or Catapres. Clonidine has a limited effect in stopping the outpouring of the chemicals that cause the crisis. It is given in stat doses but because of side effects Alex needs to be closely monitored once it has been given and a constant dialogue maintained with his paediatrician and/or neurologist.

 These crises can last from a few hours to 3 days and can occur as frequently as daily, or he can go weeks between a crisis. However on average Alex misses up to a third of the school year because of these crisis and other illnesses. After a severe crisis there is also a significant amount of recovery time as they are almost always accompanied by a loss of skills. For example he often will lose 3 months of skills, that is anything that he learnt in the previous 3 months are completely lost and he has to start all over again.

 The crises are completely spontaneous with only subtle warnings that they are starting. The only pattern that we have been able to discern is that they occur more frequently during the change of seasons (when the weather goes from hot to cold or cold to hot suddenly. And they are worse during the warmer months of the year. We have found that we can lessen the number and frequency by keeping Alex in an environment that has a stable temperature – that is an air conditioned environment.

 As I mentioned there are only subtle warnings that a crisis is starting. These warnings are behavioural. Typically Alex starts slurring his speech, he becomes very sweaty, most noticeable around his head. He becomes uncoordinated and walks as if he is drunk. Sometimes he will become extremely violent as the change in brain chemicals seems to cause an uncharacteristic neurological rage. Because of the unpredictable nature of these crisis, the frequency with which they occur, and the serious nature of the crisis Alex always has an adult, trained in first aid and in managing these crisis in attendance wherever he goes. At school he has a full time teacher’s aide, at Vacation Care he has an SNS worker. All other times I am in attendance with him.

 If he is asleep however it is impossible to pick up on these subtle behaviour changes that indicate a crisis. When he was an infant I used to sit up with him or else sleep with him on my chest. This led to constant sleep deprivation on my part. Initially Alex was ventilated all the time, however we learnt that he did not require ventilating all night, but rather only when he is in a crisis. It is in Alex’s best interest not to place him on Bi-PAP except when he needs it. Consequently he is now monitored by a machine to alert me of a crisis starting so that I can intervene before it becomes dangerous, support his breathing with the Bi-PAP as needed, monitor the progression of the crisis and call for help before it threatened his life.

 The monitor costs around $20,000 and continuously monitors his heart rate, cardiac function, temperature, oxygen level and rate of breathing.

 Because of the frequency of these problems it is virtually impossible to sleep at night. On a number of occasions I have tried and unfortunately I have slept through the alarms of his monitor. Consequently, for a number of years now, I have been more comfortable with the pattern that I stay awake at night and sleep (or attempt to) whilst Alex is at school.

 School holidays are more difficult as there is no window where I can sleep except when I send him to Vacation Care. The days and hours that he is at Vacation Care are limited to what the Federal Government will fund through the SNS scheme.

 Also there are frequent periods where he cannot attend school, for example Alex is home today because all of the teacher’s aids are on a course. Consequently I regularly function in a sleep deprived state.

 I am unable to get help with Alex at night. At one stage I did receive funding for a PCA (Personal Care Assistant) for one night every 2 weeks. I was not allowed to leave the PCA alone with Alex, but it did allow me around 6 hours of sleep on the night that they attended. However that funding was withdrawn a number of years ago and Alex reassessed as needing a registered nurse.

 I have complained long and frequently regarding this situation. The circular situation is that the Federal Government claims that this is a health issue and therefore a state responsibility. The State government claims that they do not have the funds and that it is a disability related issue and therefore a Federal responsibility.

 A couple of years ago I complained to the Health Minister (again) and the solution was to give me a case manager for 6 months, something we have not has since Alex was 2 years old. The role of the case manager was to obtain respite care for Alex. She is still with us, her time paid for by the program, because she has SILL been unable to locate any regular respite care. She is brilliant though and did track down a program that had surplus funding and convinced them to give that to Alex. We are using that to engage a registered nurse one night a week, a Saturday night, so that I am not regularly going 50 odd hours without sleeping at all. This still happens when Alex is unwell but I so look forward to a full nights sleep in my own bed.

 The funding however is excess funding and when it runs out, it is gone and we will be back to the same situation.

 Shapiro’s Syndrome is however only a part of Alex’s overall problems. In addition to these crisis Alex suffers from

 Poor, uncoordinated  swallow

A lack of hunger

Hypoglycemia

This means that he suffers from low blood sugar. He is unable to convert stored energy into useable energy. As a result he must eat small meals frequently to avoid him going into a hypoglycaemic crisis (coma). This sounds easy enough except that Alex has no sense of hunger – that is he does not feel hunger. Additionally he has difficulty with chewing and swallowing. He was in fact unable to eat anything at all by mouth until he was 5. Up until that time he was fed totally by gastrostomy (a tube directly into his stomach). At 5 Alex started to be able to eat small amounts of soft food, albeit with a great deal of difficulty.

 He can now eat a number of different foods if they are prepared correctly and is supplemented via his gastrostomy. He still has to be watched whenever he eats because he frequently chokes. Consequently there is no set pattern to his meals. Every meal needs to be calculated and the amount given by gastrostomy calculated against what he has managed to eat orally.

 Life was definitely easier for me when he was totally dependent on the gastrostomy, but again it is in Alex’s best interest to eat as much as possible orally.

 Low Tone

Altered Perception of Pain / Failure to Feel Pain

Alex has very hypermobile joints that frequently dislocate. Consequently he wears AFO’s or braces on his feet to stop his ankles rolling and further damage. Already Alex suffers from a degree of arthritis and he has dislocated multiple joints in the past.

The low tone and hypermobility are also present in his hands and as a result he has great difficulty with writing. He uses a special hand splint when using a pen and uses a keyboard or computer to do most of his schoolwork.

One of the problems with the low tone is that it also makes Alex quite clumsy. Consequently he falls a lot and with an altered perception to pain he does not realise that he has injured himself.

 A typical example of this was a few years ago when he fell down some stairs at school. His hands and knees were grazed and tended to however no one, not even Alex, realised that he had broken his ankle until it became so swollen that he could not bend it.

 Impaired Endurance

As a result or combination of a number of issues Alex (low tone, spina bifida, Allergy to latex, too much exertion precipitating a crisis etc) Alex has need of a wheelchair. Again he is not totally dependent on the wheelchair, indeed he loves to walk and play with his peers as much as possible. However in a crowded or unfamiliar environment, on uneven ground, for long distances or when we will be out for an extended period he does need to use a wheelchair.

 Spina Bifida Occulta

Alex suffers from spina bifida occulta, this impairs his ability to walk to some extent, however, the primary problem is that it has caused incontinence at night. We have tried everything to get him trained at night but between his illness and the spina bifida we don’t believe that he will ever be continent at night. During the day, if reminded and directed to use the toilet frequently he will and we therefore consider him toilet trained (or toilet timed) with just the occasional accident but at night he still uses diapers.

 Allergy to latex and to peanuts

When Alex was an infant and the feeding tube was placed the hospital, not convinced that it would help Alex survive, opted to cut costs and placed a latex Foley’s catheter as a feeding tube until he proved that he was going to be a long term survivor. The latex Foley’s catheter was left in place for around 6 months before a proper feeding tube was placed. This was despite the doctors being well aware for a number of years that using indwelling latex catheters could sensitise the individual to latex causing a latex allergy which can be severe and life threatening.

 Alex was subsequently sensitised to latex. The allergy is now so severe that he is at risk of anaphylaxis if he so much as comes into contact with a rubber band, a balloon or even a tennis ball in the playground. Alex has even had severe reactions from medications in hospital simply because they were prepared and placed into the tubes using a latex catheter.

 Consequently everyone who has anything to do with Alex must constantly be on the lookout for latex content and have training in anaphylaxis management, that is, in the use of adrenaline. Despite the fact that Alex’s latex allergy stems from Department of Health cost cutting, because of the focus on “user pays” within the NSW health system I must pay for all anaphylaxis training. The cost of training someone in anaphylaxis management is $100. This is for an individual or a group. However I cannot combine individuals to create a group. For example I cannot send his scout leader to a training session with his teacher’s aid, they could attend the same session but it will cost me $100 each.

 Sometimes if I am lucky the group themselves will pay for the training however it tends to be the volunteer and community groups that pay for the training, eg the Cub Scouts raise the money themselves and complete the training. Those that receive government funding for special needs like Miranda Therapy Centre, The Northcott Society either refuse to do the training or insist that I pay. The Northcott Society has actually refused to allow Alex to attend their respite facilities in part because of his latex allergy. Miranda Therapy Centre will not train their carers, and insist that I pay for the training (even though they are funded which includes a training budget and I also make a payment towards the carer as well)

 Deafness and CAPD

Alex has a hearing impairment. He has a severe hearing loss in his right ear and a moderate hearing loss in his left. He wears a hearing aid and also uses an FM system in class. Because he was born with very deformed ears he has great difficulty keeping hearing aids in and when he wears the FM system the weight makes it even harder for him. Consequently he performs better in class with an FM Sound Field however we cannot obtain funding for this.

Because of his hearing loss Alex was slow to talk, in fact he did not start speaking words at all until he was 5. He does speak now and also signs, however he speaks with a speech impediment. We cannot access speech therapy however as his intellectual disability is not great enough for him to qualify for services through DADHC and his problems are too great for the resources of the local speech therapy team.

 Consequently any speech therapy that he receives, which includes therapy for his eating skills, is done through private services which I pay for.

 His hearing loss is getting progressively worse though no doctor can tell me why. He can no longer use a regular telephone, and to listen to a telephone conversation he must switch the telephone to speaker phone. Even then he mis-hears much of the conversation.

 Developmental Dyspraxia

Alex suffers from Developmental Dyspraxia. It is complex and difficult to explain so I have included a description of developmental dyspraxia taken from The Australian Dyspraxia Support Group. Alex suffers from all three forms of dyspraxia (and probably a few additional praxis).

“Developmental Dyspraxia is a neurologically based disorder, a motor planning difficulty present from birth. It is believed to be an immaturity of parts of the motor cortex (area of the brain) that prevents messages from being properly transmitted to the body. 

Motor Dyspraxia inhibits an individual from moving as planned and organising sensory input. Children with Motor Dyspraxia appear to be clumsy”

Attention Deficit Disorder

Alex suffers from ADD – but this is not the same as ADD that most people associate with ADHD. Because of the repeated cardiac and respiratory arrests Alex has suffered some brain insults / injury. This has left him with residual problems that lead him to difficulties with concentrating and staying focused on a task. He will start doing a task, then become distracted and go off and do something else.

 The resulting effect of this is that Alex requires constant reminding and supervision to complete most tasks and to prevent dangerous situations arising. For example Alex may go outside to feed his chickens and be distracted by a butterfly. He may then start to follow the butterfly and walk out on the road or wander from home.

 I attended the clinic on the 28^th July and was told that despite the anaemia the earliest that he could do the exploratory surgery to investigate the cause of the bleeding was the 18^th August. I did explain the severity of my sons care needs, and that I was really feeling very weak, but he was adamant that the 18^th was the very earliest that it could be done. He also stated that the earliest I could have a hysterectomy, which in his opinion was likely the only way to control the bleeding was about 12 to 18 months. When I expressed concerns to him about my ability to care for my son the way I was feeling for that length of time he said that I would have to just do the best I could as that was the length of the waiting list.

 I attended the pre-operative clinic the following Tuesday and was seen by the anaesthetist. He was concerned with my health and requested an urgent haemoglobin test before I left the clinic. That haemoglobin result was 8.3, it had fallen more than 1.5 points in 4 days. Given the severity of symptoms he was concerned and rang the specialist and had the surgery moved to 2 days later on the 4^th August. He stated that he was hoping to have the surgery done before I reached the stage of needing a blood transfusion. 

 Unfortunately post surgery my haemoglobin had fallen to 7.3 and I was experiencing chest pains. The anaesthetist decided I did require the blood transfusion which necessitated an overnight stay in hospital. I came home on the Friday evening with my haemoglobin back up to the level it was when I initially went to the doctor feeling unwell. Nothing had been done to halt the cause of the blood loss, and I had not even seen the gynaecologist since the original appointment but at least I was feeling marginally better.

 Care During the First Hospital Stay

Care for Alex during the 2 days that I was in hospital was organised by the Commonwealth Carer Respite Centre. They employed a registered nurse to care for Alex in my home after school on the Thursday until he went to school on the Friday. When my stay was extended they extended the nursing care so that the nurse collected him from school on Friday and she was only going to stay until the Saturday morning. Because the doctors were still unsure whether I had had a heart attack or if the chest pains were being caused by the anaemia it was unclear when I would be discharged. So to ensure that Alex was not left alone they extended the nurse until the Monday morning. I did however come home late on the Friday evening.

 I attended the gynaecological clinic on the following Thursday for the results of the curette and hystoscopy. Although my appointment was for 2.30 I was not seen until 4.30, and then did not see the doctor (who was there) but the resident. The resident told me that I had pre-cancerous or early cancer and they wanted to do a radical hysterectomy ASAP. She said that they were placing me on the waiting list to have it done within 30 days.

 I received a letter from the hospital last week telling me that the waiting list was 1 to 2 months.

 I have not seen the doctor since the initial appointment in July, I have not had the opportunity to discuss the results with him and given that nothing has been done to halt the bleeding while I wait the 2 months for surgery I am concerned that I will again get so anaemic that I will need another transfusion before the surgery even takes place, or alternatively, that I will be so weak that they will not be able to do the surgery. This does not take into account how I am supposed to care for Alex in the meantime, especially as he has been ill, not at school and therefore I have had no time to sleep.

 They have requested that I source additional funding and that if I cannot do this my only option will be to force the Department of Community Services into paying for the care by making Alex a Ward of the State.

 The Commonwealth Carer Respite Service is well aware that there are no other alternate sources of funding. Indeed they are well aware that other respite centres will not accept Alex unless I send him to their programs with a registered nurse that I fund myself.

 For the last 10 years I have been trying to access respite services for Alex. I have written and phoned the minister many times about this issue. Four years ago the solution was to give me a case manager for 6 to 9 months in order to organise respite care.

 The Case Manager has been wonderful, but she is still with me because in those 4 years she has not been able to access any respite care for Alex other than the surplus funding which I have explained earlier and occasional days through the Commonwealth Carer Respite Centre where they hire a registered nurse to care for Alex in my home. I have not used the Commonwealth Carer Respite Centre for the last 18 months until now.

 We thought 3 years ago that we were getting close and that the Northcott Society would allow Alex to access their respite care facility. Many of their clients have spina bifida and their parents receive the Carer Payment. Many of their clients are in a wheelchair, either full or part time. They require turning at night, urinary catheterisation and some are tube fed. Yet Northcott claim that Alex’s needs are too high for their house staff and will only allow Alex to access their respite program if I provide and fund a registered nurse to attend with him 24 hours a day. This is despite the fact that we have explained that Alex does not necessarily need a registered nurse during the day – that school and Vacation Care only use aids that have been trained and familiarised about Alex’s condition.

 This anomaly, that his disability is not great enough (“profound enough”) for Centrelink so that I can access the Carer Payment, yet his needs are too high for a respite service who regularly provide a service to others who DO receive Carer Payment does not make a lot of sense to me.

 The Commonwealth Carer Respite Centre are well aware of this situation and have in fact refused to pay for the registered nurse to attend the Northcott program with Alex, because they are funded for occasional not regular respite services. They are also well aware that I have purposely not accessed their services very often because I knew that their funds were limited and that in an emergency I would need them as I have no other family to support me in Alex’s care.

 All other respite or care facilities have refused to take Alex at all. For example the Spastic Centre will not accept him and Bear Cottage tell me that he has now lived too long beyond his prognosis to qualify for hospice.

 We do not qualify for state funded respite services either. DADHC only fund respite programs for children who have a moderate or greater intellectual disability, this means that Alex does not qualify as his intellectual disability is only mild / moderate.

 Health NSW provides no funding for respite services.

He is not eligible for admission to a nursing home as they do not have the staff or experience to care for Alex. Additionally he functions too highly and is too mobile so it is quite inappropriate.

Admitting him into hospital (social admission) whilst I am in hospital is also not a desirable option. The hospital environment is a dangerous one because of the latex allergy, and additionally they still need to employ additional nurses on the ward if I am not there with him. (Typically the hospital asks me to stay with Alex if he is admitted to hospital)

The most appropriate place for him to be cared for a short time is in his own home. That is where his equipment is, the home is already a safe environment and close to the familiarity of his school and friends.

There is no way that I can afford to pay for Alex’s care myself from the pension. A registered nurse costs between $51 and hour and $75 an hour (depending on the time of day and the day of the week). That means that it will cost between $1200 and $1800 a day or for the 2 weeks between $16,800 and $25,200. Taking into account all my allowances and benefits I receive only $393.90 per week. So the cost of Alex’s care for the 2 weeks is most likely going to cost more than I receive for the entire year.

My only remaining alternative, which is what is being recommended by the federal government agencies, is to approach the NSW Department of Community Services and make him a Ward of the State by claiming that he is a child at risk so that they will be forced to pay for his care.

 To me, as a mother who loves her son, who has done everything in her power to make his life and health to be the very best that they can be, this is a totally unacceptable situation.

 He is not at risk from me but from a system that is constantly trying to find ways to avoid helping those who they claim that they value and do help but in reality only pay lip service to.

 The system is not set up to try and help, rather it systematically tries to find ways to avoid helping those who need it the most.

In the UK those caring for a person with a disability are entitled to receive up to 102.90 per week, or around 244.27 Australian dollars per week. This is not means tested but purely because they acknowledge the additional costs in caring for a child or adult with severe and multiple needs. [http://www.dwp.gov.uk/publications/dwp/2004/gl23_apr.pdf ]

In the US sole parents who care for a child with multiple or severe disabilities are entitled to receive a means tested SSI (Supplemental Security Income) [http://www.ssa.gov/notices/supplemental-security-income/text-understanding-ssi.htm] of around $579 a month (around $770.00 Australian) not including individual state additions to the SSI amount.

Yet in Australia the equivalent to these is the Carer Allowance. We get $46.20 per week that’s $198.00 a week less than those in the UK and $160.00 a week less than those in the US.

The Carers Allowance is not designed to cover the additional expenses associated with caring for a child with a disability, rather it is “compensation” for the additional time that they require.

In Australia we receive NO additional funds to cover the additional expenses associated with our charges and these expenses are HUGE. Expenses associated with Alex’s special needs, that is only those expenses that you would not normally associate with raising a child of his age, total over $250 a week. If it were not for charities such a St Vincent de Paul who visit me every 2 weeks with food vouchers we would not eat or even have clothes to wear.

I have a lounge because a radio station organised for one to be donated, a TV because a friend gave me her old one, a VCR because I picked it up during a council clean up. The constant worries are never ending, how do I find the money to buy Alex a bed? to buy a new vacuum cleaner because the one that has been held together with tape for 2 years finally died and I have nothing? That is not living, that is not why I struggled to put myself through Uni to make things better for myself and my family……………

The pension was never designed for people to live on for long periods of time. It was, and should be, a short term solution for a short term crisis. We need to acknowledge that for some people, for those with severe and multiple disabilities, that there is a need to live long term on society’s grace simply because we are a valued part of the very substance of that society.

Even foster carers would receive more per week because the child they care for has special needs. As a foster child Alex would at least have access to therapies and such – but because I choose to save the government money and care for Alex myself we are denied even this, a basic for a child like Alex.

Many people assume that Alex gets his own pension – but he doesn’t. Carers Allowance and Carers Payment has absolutely nothing to do with the Disability Support Pension. Carers payments are made to the young only when they cannot live without someone to provide substantial care and attention.

Alex will probably qualify quite easily for the Disability Support Pension when he turns 16, but he will also need a carer, he quite probably, barring a miracle, will always need a carer as well. That is someone who is willing to give up their own life and dreams to care for him.

And anyone who does will give up their life and be forced into a situation where they will not have access to even such basic things as dental or medical care, unless of course they have their own private income.

It is not caring for our children (and adults) with special needs that is so hard, it’s living that’s hard. The government says that it values what Carers give, to society, to the people that we care for yet they deny us access to the basics of life, food, clothing, dental and health care, medications – the list is endless, because we live well below the poverty level.

We do not do this because we want to do nothing. I did not pursue my education as an adult not to work. Nothing would make me happier than to be working and earning $40 - $50 and hour. But for me life intervened and chose a different path for me to walk. No one voluntarily chooses to do what I do if there is an alternative.

The government even discriminate against such basics as mobility. Most people don’t realise that children, or anyone in a wheelchair don’t automatically get even the small amount known as a “mobility allowance”. Only those over 16 who are working or training for work are entitled to the mobility allowance. Yet everyone acknowledges that it is vitally important for those we care for to venture out into the community.

As a child Alex doesn’t even receive concession train fares – they are only eligible for those on a pension or benefit. I get a pensioner concession, but usually end up paying more than my fare for Alex’s fare and for that privilege I get to carry he and his wheelchair up station steps and fight my way through crowds who will not allow a wheelchair through. I have even been abused for not using a wheelchair accessible railway station – which is another 20 minutes walk away!!!

Two years ago I took Alex to Melbourne for my Aunts 90^th birthday (and to meet her). His train fare cost me almost 3 times what my own did and that took every cent I had (more actually). (we did nothing else while we were there – no sight seeing, nothing other than visit my Aunt, but at least he can say he’s been to Melbourne!!)

As a child we aren’t even allowed taxi vouchers – not that we could afford them anyway.

The government is so busy making sure that the system isn’t rorted that they have forgotten to help the people who need it.

I have no idea who will be Alex’s carer, or even what will happen to him when the day comes that I cannot. If left to the government I think I may as well just plan on needing two graves within a short space of time.

All this is especially grievous given that I do not qualify for Carer Payment and that under the proposed changes to Parenting Payment that I may well be forced to “return to work” as of July 2006.

The legislation governing the receipt of Carer Payment for the parents of children under the age of 16 is very specific and restrictive. It is vastly different to the giving of Carer Payment for those over the age of 16. A copy of the requirements for Carer Payment for those caring for children is attached in appendix 2.

I originally attempted to change from Parenting Payment to Carer Payment on the advice of the social worker at Centrelink in 1999/2000. The staff at Centrelink however would not give me the forms stating that there was no difference between the two payments. Indeed the two payments are quite similar. At the time I attempted to change payments our main concern was that Alex had just had another cardiac arrest and if he were to die I would have longer to seek work (12 weeks) if I was receiving Carer Payment than the 6 weeks I had if on Parenting Payment.

In recent years there have been greater differences develop between the two payments, most noticeably recipients of Carer Payment received an additional bonus of $1,000 a year the last 2 years and now also there will be a huge difference if recipients of Parenting Payment are going to be forced to return to work once their child turns 6.

In 2000, if I had been allowed to apply, Alex’s care needs at that point would have made me eligible to qualify. As it is he still meets all the criteria in part, but because of the restrictive wording of the criteria we do not meet the criteria.

Let me explain in more detail. The legislation states that Alex must meet a primary criteria:

Alex was on Bi-PAP every time he slept up until about 3 years ago. That was when we discovered that it was more efficient to use it only when it was absolutely indicated rather than to protect him all the time. If I were seeking the easy way out it would be easier to leave him on Bi-PAP at night, but it is not Alex’s best interests to do so, instead I increase his care by monitoring him instead and only use the Bi-PAP when its absolutely needed. As a result I would estimate that he uses the Bi-PAP and or oxygen, 24 hours a day for approximately 3 months of the year. Time wise I estimate that he uses the vent for 2,900 hours a  year. If I could accrue the 8 hours a night into a lump amount it equates to the same 2,900 hours of being vented 8 hours a night. If we could replace the “ventilator” with monitor we would have no trouble meeting this criteria.

Again had I been allowed to apply in 1999 we would have qualified for this.  

Again this is a criteria that Alex does not necessarily meet. He is not fecal incontinent during the day because he is toilet timed and because he suffers such a degree of constipation I know when he needs to pass a motion because of the medication he gets. We only have fecal accidents if he becomes so constipated that he suffers from “over flow”. He is however urinary incontinent and I am not sure why there is a distinction between urinary and fecal incontinence.

Again in 1999 we would have qualified.

This criteria Alex has absolutely no trouble meeting.

If we could add all the part criteria of the parts numbered 4, 7 and 9 that Alex meets as 100%, as we could if I had more than one child.

If we could change accept the total of number of hours ventilated in 6 as well as

The 100% of part 10 – we would qualify.

But I will not lie or exaggerate on the application and I will not ask his doctors to do it either.

A child who has spina bifida will meet the 3 criteria quite easily, they will be incontinent, unable to stand without support, and require 2 or more occasions of care during the night to be turned. Yet the same groups who care for these children (Northcott Society) tell me that Alex’s problems are too severe for even their facilities. The problem lies within the criteria and the Federal Governments definition of profound. Profound simply means “coming from great depth” The definition of disability is “something that hinders or incapacitates” No one would deny that Alex’s multiple disabilities are profound.

The Federal Government introduced the new compulsory “return to work” concept back in May. I rang both Centrelink and Senator Patterson’s office asking how that would affect me – yet no one could tell me. It scared me beyond belief. If I work during the day when do I get the chance to sleep? Who will collect Alex from school when his temperature drops? How do I hold down a job when I am constantly being called to care for Alex? What sort of child care can I get when current arrangements even for school stipulate that I am no more than 10 minutes away from the school in case he suffers a Shapiro’s Crisis or requires what is considered a “medical procedure” (oxygen, ventilation, resuscitation, medication etc)

If I cannot even get respite care for a day or a weekend, or in an emergency, how on earth am I supposed to find care so that I can return to paid employment.

I was the one who asked Senator McLucas to raise the question in parliament last week (appendix 3), yet Senator Patterson chose not to answer the question or to give reassurances. Instead she accused Senator McLucas of scaremongering. I would like to tell Senator Patterson that it is not Senator McLucas that is scaring people, it is instead Senator Patterson that is not listening to the fears of the people you are supposed to represent. I am not the only carer in this position, I know that there are many many more of us “out there”

Senator Patterson in question time stated that caring responsibilities will be “taken into account” but still refuses to give any guarantee that we will not be worse off than we already are. Given the “hoops” that many families need to “jump through” simply to receive the Carers Allowance one wonders what new hoops the Federal Government will devise for us to prove that our children have a significant disability and care needs.

Simply to qualify for the Carers Allowance means that our children need significantly more care and attention that other children of the same age. Over the years the extensive form that you need to fill in, the exacting criteria that have been introduced have ruled out all the children with “mild asthma” or “controlled diabetes” from receiving the Carers Allowance. In parliament Senator Patterson insinuated that Alex’s disabilities equated to these and that was why she would not give any guarantees that we would not have to jump through hoops or take reduced benefits come July 2006.

If his care needs are not great enough for me to qualify for Carer Payment, what makes me think that Senator Patterson will deem his care needs great enough that I will be unable to return to work?

If their care needs are too great to allow us to work even 15 hours a week, why can’t we qualify for Carer Payment?

I realise that when Senator McLucas raised the issues surrounding Alex in Parliament last week that Senator Patterson accused Senator McLucas of scaremongering and stated that “provision will be made”.

It is not Senator McLucas that is scaremongering, it is Senator Patterson that is causing the fear by announcing a philosophy, that while essentially sound in theory, has not been thought through in practice. If it had been thought through in practice then I believe that Senator Patterson would at least be able to explain what these “provisions” might be.

I was the one who approached Senator McLucas asking her to try and find out what will happen to parents like myself because Senator Patterson’s office and Centrelink could give me no answers.

I am not convinced that the “provisions” that Senator Patterson is talking about will take into account the real situation that exists for carers of children with disabilities and I ask that Senator Patterson tell us the details of these provisions and either allay our fears or allow us to challenge them with time and thought.

Current guidelines for Centrelink tell me that Alex is not severely enough disabled for me to qualify for Carer Payment. This is despite the fact that Alex requires 24 supervision and has intensive care needs, both medical and physical.

In the last 10 years I have not been able to access respite for Alex unless I provide a registered nurse to care for him, whether that be a respite care facility or in home. A registered nurse costs between $51 and hour to $75 an hour depending on the time of day and the day of the week. And it is I who must provide the registered nurse as there is no funding State or Federal for nursing care – and Alex’s care needs are so great according to these agencies that he needs a registered nurse.

Remember I receive less than $400 a week in all benefits and allowances to care for Alex, even if I devoted my entire pension to paying for a registered it would not even cover ONE NIGHT of 8 hours sleep!! And when I do get a few hours respite that’s all I do because I don’t have enough money to even buy myself a cup of coffee let alone go out anywhere!! And that’s if I could get a nurse to care for Alex for even many nurses will not take on the risks associated with Alex’s care.

For the last 3 or 4 years I have been trying to get Alexander into the respite program operated by the Northcott Society. The Northcott Society get funding from the state government for a centre based respite program and their target population are children who would not normally be able to access other programs because of their high care needs. Indeed a large number of their clients in the program require tube feeding, catheterisation and turning regularly during the night. Despite this they are still claiming that Alex’s needs are too high and the risk too high for him to access their program unless he is accompanied by a registered nurse, the cost of which I am expected to pay myself as there is no program within NSW that allows me to access a registered nurse unless it is on a one off emergency basis.

It would take 5 ENTIRE weeks of my pension to pay for ONE weekend of care!!!!

When I first discovered that I was anaemic and that it would probably take some months to resolve I approached Home Care, from whom we already receive 2 hours of help in the home from, about some additional short term help – at least until the surgery on the 18^th August. Even every day activities such as taking Alex to school and walking across the playground are leaving me exhausted. Making a bed, something that would take 10 minutes normally is now taking close to an hour and leaving me extremely short of breath and feeling exhausted.

Home Care responded with the fact that under no circumstances could they provide additional short term help. They may be able to provide help long term if I could justify significant reason to warrant a review. Being as ill as I was, was not sufficient reason. I and our case worker asked and even begged to double check but the answer remained the same.

 In preparing this document I read the HACC guidelines and then rang Home Care to ask why it stated in the HACC guidelines that they could provide acute and post acute short term services to existing HACC clients, yet they were saying that they couldn’t. They kept insisting that they couldn’t.

 Sadly I had to say to the service co-ordinator that I would make a formal complaint a nd also take it to the media if I needed to and point out that they were refusing to provide a service that was clearly stated within their guidelines as being within their ability to provide. It was only at this point that the service co-ordinator agreed to ring her area manager and check.

 She rang back a short time later to say that yes they could indeed provide a short term increase in service to existing HACC clients but that it would depend on the availability of hours and subject to a review which she would try and organise for the next week.

The next morning she rang and asked to come out and do the review the same day. At that time they agreed to double my existing hours to 4 hours per week for the next 6 weeks.

 Today was the first of the additional service and I found that they have increased it by one hour a week – not double (which would be two)

 I am grateful for the additional assistance, but why does it take threats and for me to access the HACC guidelines and point out to the service provider that they are breaching their own guidelines. How many people have asked for the exact same help and been refused and then don’t have the resources or ability to fight the service on the provision.

 The same situation exists for Community Transport. Yes Community Transport offers assistance for children and their carers. BUT there are limitations the two most prohibitive are that

The other restrictive criteria is that they will not provide transport to therapy, early intervention, vacation care, extra curricular activities and a whole host of things that children will do. These services were designed for the elderly – no one ever took into account children and the needs of them and their carers.

The entire system for disability, health and for carers is in complete disarray and needs a total review. I am only one of thousands out there in the same situation we need help and we need it urgently.

 The government needs to review the whole situation, it needs to talk to the carers themselves and see what is needed (not the supposed peak bodies which are often run by people who have no real understanding of the situation). Senator Patterson and many others need to come and live with a family for a week and see what it is like, that we do not choose to do this because we are in a welfare “trap”.

 We do it because we love our children and because there are no other alternatives. We and the people want to be a part of society – to share the same social relationships as others. We want to enjoy the companionship of society but we can’t do that without society’s help. And that doesn’t mean just removing the physical barriers, it means giving us the means to live within society, physically and emotionally.

 You say that the disabled and those who care for them are valued – yet we are forced to live beyond poverty, are denied access to the community and society at large. We are even denied access to basic health and dental care. Businesses need tax cuts, we need access to therapy. Workers need holidays – we need equipment, and its needed when it’s needed, not when an arbitrary budget says that it can afford it.

 And I do give back to society what I can. Whatever time is left over after caring for Alex I spend supporting others. I run an Australian support group for other families effected by the rarer trisomy disorders (in Australia over 200 families a year will be touched by a trisomy diagnosis), I run an online community along similar lines and I am one of the founders of a research group – tracking and researching the effects of these “orphan” genetic disorders.

 I am not well at the moment, and I do not feel that I should be worrying about where I can obtain care so that I can go into hospital and become well again. I also do not feel that I should be worrying about how long that will take and if I can survive that long. I should be sitting here with my son, being with him, reassuring him – because he is worried. He has never seen his mother this ill for this long. He is expressing his concern by asking even complete strangers, anyone who shows him a kindness, if they will look after him when mummy dies. No - I should not be fighting for what should be basics of life, basic needs for someone in my situation and who is also (or should be) a member of caring society – I should be by his side loving him and being his mother, not worrying about how much worse he would feel if I was forced to make him a ward of the state to save some government departments budget.

 I love my son beyond all else, and I will choose not to have the surgery I need rather than make my son a Ward of the State.

 Again I apologise for the length of this document but I desperately need your help. The entire population of those with a disability and their carers need your help. I believe that the situation is so bad that unless society demands change nothing will happen.