Lack of support for parents with severely disabled children

Lilibet

Can you imagine the despair of grandparents when they are suddenly trust into the position of having to care for a disabled or seriously ill grandchild? With an already limited income and energy reserves, they are forced into a situation over which they have no real control. Child welfare believe that children in this situation are always better off with a relative, and in most cases I would agree. However grandparents, although they may be able to provide a safe home situation for the child, are faced with they awful knowledge that they are now wholly responsible for the needy child. Dealing with school issues provides a real challenge let alone trying to convince authorities that they need significant financial help.

Lilibet

So true, that parents with kids with any form of disability have to fight tooth and nail to get any help at all. If they are lucky enough to get their child supported in school, they still face enornous cost hurdles getting support for ongoing health, respite and any special equipment or programs that may help their child reach whatever their potential is. When that child reaches an age where they have to leave the school environment, there is frequently no support available and its at that time that the parents are faced with additional cost associated with looking after an adult child and having to try to provide stimulation to keep them interested and alert. This seems to be a time when parents reluctantly relinquish thier child into state care -such as it is - they are at their wits end financially, emotionall and physically. No-one would give up their child if there was a reasonable alternative available to them.

mistymae53

So true, that parents with kids with any form of disability have to fight tooth and nail to get any help at all. If they are lucky enough to get their child supported in school, they still face...

Then their are parents who adore their children, but where their child's disability is difficult enough to endure, they may find their child also born with a potentially life threatening illness as well, and regardless of having to fight to keep them alive from the day they are born, eventually find they have to relinquish their child to the state as they are financially and emotionally drained with all coping mechanisms almost totally depleted. Life can be so unfair!

Anonymous

I have been on the waiting list for respite for 8 years. I am not considered urgent. The fact that I am a single mum with 3 kids and 1 being autistic, I work 5 days a week and have no time to my self, but also no time to do things with the other two. It is a sad fact but they do not support families enough.

angelskies

unfortunately a parent knows that the child will get a lot more help and support if given to the state, which makes it very difficult when ou are struggling and have no support to stay strong.

Added in 85% of marriages fail when there is a sn child involved and it can be a hard life. Funding has been stripped from many aspects and the waiting lists for respite are huge (eg 4 or 5 years in some areas of australia!)

of course the government should do more, they shut down the homes and put the majority of the care on the parents (which i completely agree with) but then didn't restore half the same level of funding or services to these kids and familys. Added that the severity means often one parent can't work or can't hold a job, plus other issues such as lack of super/depression there is a lot more that can be done.

You have a child diagnosed with a severity disability in many cases you walk away with literally the phone number for the disability services in your state and THATS IT (and that may see you once a month if you are lucky) there is a lot more the government could do. counselling/financial planning more support in schools -a level 1 child non toilet trained nonverbal autistic in many mainstream schools would get a maximum of 8 aide hours a week.. thats insane. of course a lot of parents give up hope if thats all they can give their child!

add in that many of these children have sleep disorders and you have parents running on no sleep, with more financial stress then you can imagine, feeling like they are letting down their child every day by not providing more support and its a situation that is bound to fail some children.

mistymae53

Any child is a gift, and these children are particularly special! So often parents have to extend themselves so much further to meet the needs of these precious children. Parents are like anyone else, and often find themselves totally burnt out, but unable to get any rest due to lack of respite, or even the financial support to pay for it. Some disabled children have chronic health care needs also, and it is a full time job looking after them. Formal diagnos or not, any special needs child needs a lot of extra care, in order for them to meet their full potential. No parent should have to give up their child in order to get the help for them that they so desperately need. Unfortunately it is often the case, ans loving parents increasingly are faced with making this agonizing decision. This is so totally unfair!

walli

I had no idea. That's terrible! Maybe all parents faced with this could be more encouraged or financially supported to seek formal diagnosis for their children so that they can access the ongoing support that is available to others. Is it because they don't want their child peigeonholed that they don't seek diagnosis, or because there is no current diagnosis that fits?