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Children with special needs

parental support for parents with live with children who have special needs.
This can put so much stress and pressure on family, relationships, Schools, support groups. Where is the government in all of this with regard to funding to help ?? Reply

Last reply: 7th Jul 2015 / 24 replies / Post by pammy

Replies

turtle

Posted by: turtle
Posted: 15th Sep 2011

turtle says: I couldn't agree more I have several friends that are in this situation and I strongley believe that the government should assist these families more than what they are getting even when they do get financial support they are still questioned as to why they need it. Reply

marybell

Posted by: marybell
Posted: 7th Jul 2015

turtle says: I couldn't agree more I have several friends that are in this situation and I strongley believe that the government should assist these families more than what they are getting even when they do...

marybell says: Children with special needs are so vulnaruble so it take real giving on the goverment side to supply support for families and monetry funds so the children can have a good quality of life.. Reply

wazzu

Posted by: wazzu
Posted: 5th Nov 2011

wazzu says: Hi i have a child who is down syndrome and the so-called financial help i receive is pitiful. we manage because we have to however there is a Carer magazine that comes out every three months with so much valuable stuff in there as well as a Carer's online support campaign which i have signed to support and collectively voice our concerns to the government. so many good things happening in that quarter. Reply

Houdini_1994

Posted by: Houdini_1994
Posted: 9th Nov 2011

Houdini_1994 says: I strongly agree with you, because many of the friends parents have been in this situation. I do agree with the stress it puts on the families and to cope with all of that, doesn't do them any favors. I think the government should give a good amount of money to support these families. Reply

Bigpalooka

Posted by: Bigpalooka
Posted: 15th Jun 2015

Houdini_1994 says: I strongly agree with you, because many of the friends parents have been in this situation. I do agree with the stress it puts on the families and to cope with all of that, doesn't do them any...

Bigpalooka says: I recently applied for a job with Ozcare & was introduced to the concept öf "respite where the carers are given a temporary break to help them re-energize etc Reply

whosthekat

Posted by: whosthekat
Posted: 16th Nov 2011

whosthekat says: Hi I have 2 beautiful boys both diagnosed with autism, the older also has both verbal & motor dyspraxia. I appreciate the assistance I do get from the government, but it really isn't enough. I cannot work as I need to be here at home for the boys and also be available for speech therapy/OT/paediatrician/psychologist appointments and anything else that may crop up along the way. My partner, bless him, works his butt off to support us but we barely scrape by, at the moment we are actually kinda going backwards a bit financially, but according to the government he earns too much for me to even qualify for a family health care card, let alone carer's payment! It really is a struggle, especially when you constantly get people saying "are you sure they're both autistic, doctors do tend to over-diagnose things these days" - really unhelpful comments like that can do alot of damage to someone already struggling to deal with the problems associated with caring for special needs kids. I am lucky my boys are reasonably high functioning, I cannot imagine what it must be like for those who are in a worse situation and I know there are lots of you out there! Chins up all, we'll get there in the end! Reply

verfeta

Posted by: verfeta
Posted: 23rd Nov 2011

whosthekat says: Hi I have 2 beautiful boys both diagnosed with autism, the older also has both verbal & motor dyspraxia. I appreciate the assistance I do get from the government, but it really isn't enough. I...

verfeta says: I have similar experience with you. The school is fully support, however, as my boy was diagnosed when he was 5.5 y.o. put him at a long 'waiting list'
And yes.. I know exactly how you feel when people ( who only meet him few times or even just met him for 5 minutes) make a comment of "are you sure he's autistic ? he looks fine..don't worry..each kid has their own personality"
aarrrrhhh.... Reply

whosthekat

Posted by: whosthekat
Posted: 23rd Nov 2011

verfeta says: I have similar experience with you. The school is fully support, however, as my boy was diagnosed when he was 5.5 y.o. put him at a long 'waiting list'
And yes.. I know exactly how you feel...

whosthekat says: We were not so lucky with his first school, he was bullied very badly, but he coped until he got to year 3, at this time his new teacher bullied him too. She was one of those people who believe the only child who deserves extra attention is a gifted child and my son has learning difficulties. She put her hand up in his face every time he even tried to speak, and no one in the class was allowed to speak to him or comfort him as he sat there crying. I found out when the mother of a girl in his class called me because her daughter had come home in tears about the way he was being treated. When confronted, the principal had the nerve to ask "are you sure it isn't that his perception of events is wrong? He is autistic, after all". This was in a meeting with my son's phychologist, the Department of Education, the school principal and the school counsellor. My husband had to physically restrain me at this point. Even when the psychologist pointed out that another "normal" child had raised the alarm, they all just looked at each other with that "mm hmmm" look. At this point we applied for a position in an autism transition class and fortunately he was accepted into the class. It was based at another mainstream school a few suburbs away. The concept is they go into that class and are eventually reintegrated back into their mainstream school. We actually moved house so we were in the zoned area for the new school, he is currently transitioning into a mainstream year 5 class at that school and he is a different kid now. Still on antidepressant/anti anxiety meds resulting from the treatment at the other school, but nobody questions his diagnosis here and the other kids all understand, having grown up with the "special needs classes" on site. Unfortunately due to the late diagnosis, he will be reintegrating essentially into year 6 and will only have about 3 terms to adjust to mainstream before he is off to high school! Soooo not looking forward to that, but we'll get there! At least my younger son is getting his schooling in this more understanding environment at an earlier stage in his life, we have just applied for a spot in the special class for him too, although due to high demand he may not secure a spot. He has learning difficulties too but at least this school wants to help, if he doesn't get into the autism class, he will be classified as a priority for in-class support which will help greatly. He had a kid bully him, I told the principal and within 2 days the kid's parents had been notified and he had been reprimanded for his behaviour. Slightly different response than my older son's first school! Funny, as apparently both schools have the same zero tolerance policy toward bullying. Says alot about general understanding of special needs, doesn't it?! Reply

col

Posted by: col
Posted: 7th Apr 2012

whosthekat says: Hi I have 2 beautiful boys both diagnosed with autism, the older also has both verbal & motor dyspraxia. I appreciate the assistance I do get from the government, but it really isn't enough. I...

col says: hi,i also have 2children with autism, 1 high functioning , 1 low functioning and get comments from people saying that they are just naughty kids and all they need is a good hiding.i would like to see them have them for a few hours they would be handing them back real quick. the cost of having the children is huge as you are constantly replcing things and you don't have a social life as we can't take them places.i find i get so much support from our school and the staff are great. Reply

Roch

Posted by: Roch
Posted: 22nd Dec 2011

Roch says: I think that the goverment need to give more funding available for people and children with disabilities. I was a support worker who did cleaning at disabled people's home's. I am glad I could help in a certain way. They really need a lot of support from the community as well and churches I would say.
I also know they need help with study's from home as well and also need to get out of home to meet other disabled families as well. It will be good for them. Reply

gill64

Posted by: gill64
Posted: 10th Jan 2012

gill64 says: i agree with you i have a child with heart disease am constantly baggered in regards to how much care i provide and whether i am entiled to any goverment payments Reply

gill64

Posted by: gill64
Posted: 18th Feb 2012

gill64 says: i have a child with congenial heart disease hwho has already endured 3 major operations in her 5year life span,families do not recieve enough help from government to help with the special needs of raising a child with a permanent disabilty wake up and smell the roses government we need more help Reply

Fluffy

Posted by: Fluffy
Posted: 18th Feb 2012

Fluffy says: as a foster carer, I would like to see Centrelink being more approachable. A huge issue with our current kids in care is brain damage from fetal alcohol and drug abuse. They look normal, but have challenges only the carers are aware of. Reply

Ganic12

Posted by: Ganic12
Posted: 29th Mar 2012

Ganic12 says: I can say it's very dificult work ,to raise a child with special needs. My daughter is 17 now,born with cerebral palsy and later diagnosed with Asperger's Syndrome. All these years,I was very much wondering ,how much some teachers weren't supportive to her. I am not surprised with other kids ,they are growing up and sometimes can be cruel.In plenty situations,when she was literally bullied,the theachers always found a problem started with her. Simply,it's like phenomen that they ignore a bulling adressing problem on bullied child. Reply

Jade Simpson

Posted by: Jade Simpson
Posted: 1st Apr 2012

Jade Simpson says: I have a son with Aspergers Syndrome but get no funding or help as I am a New Zealander living in Australia. I can not even apply to become a citizen so I am stuffed there. Reply

Speed

Posted by: Speed
Posted: 12th Apr 2012

Speed says: As an educator I see children with special needs and very little support for parents and families. I would be great to see more funding for schools to accommodate these children as in rural settings schools are often seen as respite for some parents and families. I enjoy the challenge of teaching children with special needs and would love to see more support for these chlldren Reply

mistymae53

Posted by: mistymae53
Posted: 18th Jun 2012

mistymae53 says: This subject is close to my heart and it hurts to discuss it, but yes the help parents with special needs children get is pitiful, and so many people like myself find themselves in situations too difficult to even comprehend. No loving parent should find themselves in a position like I have been in due to a lack of funding, or worse still the inability of professionals to diagnose your child's problems. Lack of support and understanding, its hard enough having a precious, special child but when they suffer from some other complication such as cancer for example, no parent should have to try to cope without adequate support or empathy. Keep your chin up, I think the role of wonderful loving parents to these very special children is beginning to be recognized, from some-one who has been there, and by choice will always be there, you are important, its really hard! Take care! Reply

mistymae53

Posted by: mistymae53
Posted: 31st Jul 2012

mistymae53 says: Parents with children with disabilities are often living in very stressful situations with little financial or emotional support. Isolation experienced by parents and their children is often overwhelming, and respite is difficult to obtain and expensive. Children with a formail diagnosis some-times receive a little more help than those who can not be diagnosed, but even then the support is so minimal its barely worth mentioning. Government help, whats that? I do hope if the National Disability Scheme is intoduced on a full scale that there will be a decent amount of money allocated by the Government in order to support it, and that it will not be another pie in the sky promise to win votes, as so many parents of disabled children not only do it tough, many live in abject poverty in order to meet the complex needs of their children! Reply

Amandaa

Posted by: Amandaa
Posted: 21st Aug 2012

Amandaa says: going to the asylum seekers. Reply

jo

Posted by: jo
Posted: 12th Oct 2012

jo says: I agree parental support a must for children with special needs,and definately need more government support !! Reply

Sil

Posted by: Sil
Posted: 15th Apr 2014

Sil says: I understand what your saying & it's true more help is needed but I'm concerned with families (whom I have met) who have more than one child with serious special needs, sorry I wouldn't be having more than the one I already had. I don't want to sound insensitive but I was shocked to meet people who have 2-3 kids who are very sick, shame Reply

kmc64

Posted by: kmc64
Posted: 17th Apr 2014

Sil says: I understand what your saying & it's true more help is needed but I'm concerned with families (whom I have met) who have more than one child with serious special needs, sorry I wouldn't be having...

kmc64 says: All children have specials needs just some are more challenging than others. Our society has lost persepective and is concentrating resources away from where the real need is. It is not just government funding it is society in general that need to refocus and reprioritise Reply

Parsimony

Posted by: Parsimony
Posted: 2nd May 2014

Parsimony says: If you listen to the Commission of Audit and our PM then the Govt is backing away at a great rate.
The plan is to slow the roll out of the NDIS thereby ensuring that there are more kids not getting their required equipment and wary intervention and more families breaking down.
The folly of slowing the roll out is that this will increase the lifetime cost of care for many people and families. Some of the kids with a disability who have been involved in a family breakdown are now costing more than $250,000 a year to support. The NDIS is now averaging $34,000 a year per person to support.
Doesn't take Einstein to do the sums there but you can bet that the NDIS roll out will be slowed.

And just to show how much is being spun about "the budget emergency" Saul Eastlake - an economist who has been around for a long time pointed out this. Australia's debt to its total production each year (debt to GDP) is currently 14% and will rise to 17%.
Compared that 17% figure to other developed countries economies where the Average is 74%, make you think.
I am not saying we should do nothing but I am not sure running around saying the sky is falling and we need to cut almost everything is needed. Reply

lura

Posted by: lura
Posted: 6th Jun 2015

lura says: i have a baby with a rare disease she is australian however the government don't want to help cause is the only known case in australia is like it doesn't exist so we live of donations from friends and family i have to stay at home all day every day with her so i can not work my husband to be able to receive carer payment from centreline had to stop working cause you are not eligible to receive payment f you work how bs is that ! so yes we really need the help the support the medical assistance cause she is in hospital every week or the doctor or the phisio or speech how do i suppose to get to those appointments if i can not afford a car or petrol or train or house or milk ??? Reply

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