Lack of Government Assistance for an extremely rare condition

By Bray, SLC1A4, Australia, March 1, 2020

I have a 6 year old grandson with a condition known as SLC1A4  of which there are approximately 20 known cases in the world.

Dean who is epilectic with intelligence issues cannot walk,crawl,sit up,talk or eat solid food....only soft 3 month old baby food and he needs 24/7 care.

He has become too heavy for one person to lift and carry upstairs to his bedroom where he can be monitored through the night by the rest of the family. Both Parents now have back problems

His family resides in a double story unit with a very small study on the ground floor.

Yet the SDIS in its wisdom, against expert advice has rejected my sons application for .a lift on the bassis that Dean can be accommodated in the small study on the ground floor which can be transformed into a bedroom.

Not only is there no additional space for a wardrobe or anything else, he will be so far away from the family upstairs in case he has a seizure and they do not hear him.and reach him fast enough.

These schemes are available for those that require them, I ask my self what kind of condition should one have that could be worse than Deans and qualify for this special assistance.

Bray

 

 

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