Waiting for autism assessment in temporary accommodation

san23

Hello Everyone, this is my first time on scope. I am in need of advice please.
my son is 3years old.He has complex medical history,4 surgeries,11 weeks premature born with intrauterine growth restriction with extremely small birth weight of 625 grams,intensive care stay of 4.5 months,chronic lungs disease supported by supplement oxygen,necrotising enterocolitis,nasogastric feeds,grade 2 brain haemorrhage,currently he is diagnosed with Failure to thrive,Bronchiolitis, growth developmental delay,severe speech delay, learning and behaviour difficulties, social and communication difficulties, recently had gastrostomy surgery,PEG fed through stomach, severe oral aversion,sensory aversion,nil by mouth,only water intake,does not respond to his name, does not talk,cannot communicate his needs,is able to walk but cannot walk upstairs/downstairs, not able to jump or kick ball,at significant risk of neurodevelopmental delay because of extreme prematurity and waiting for autism assessment by Community Paediatrician.

Under care of more than 9 health professionals.Attends special needs nursery, space allocated by SEND after assessment.

we are staying in one room temporary accommodation from last 2 years along with my husband. I have been placed on band 3A as moderate priority. I have asked for rehousing and to consider his medical needs for placement, but getting no response. Asked children services if they can do child in need assessment but they refused saying they only intervene on safeguarding issues. I should deal with housing department myself. He does not have diagnosis and they cannot help.

I am so lost, feel like nobody is listening. I got child who does not understand risk / dangers .Space between bed and kitchen platform is 5 feet and that is space left for his activities. He now tries to explore each corner. Will turn oven knobs, get on chair and try to touch sink, electric hob, platform where I cook if of one arm length, I am scared any accident can happen. 

I asked to increase priority.if not atleast help us and provide something in private sector but no help.

janer1967

Have you contacted your local mp 

san23

No I haven’t contacted MP. I actually found email of Director of housing and shared my concerns. She has now passed it to Operation manager for investigation. But I feel like they won’t do anything to help me and just boast about how right their department and there is shortage of social housing.

san23

They are not understanding needs of child. Only parent who has autistic child can understand where I am coming from. After Social worker refused for assessment that by law is mandatory, I feel like it’s a lost battle against system.

janer1967

It does feel like it at times and is a real struggle 

I'm not saying your mp will do anything but worth a try also see if local press are interested in your story 

You might also find the shelter charity are really good advisors in this subject 

san23

Thanks Janer1967 for your response. I will definitely seek advice from Shelter. Will wait one last time from Housing , outcome of investigation. Then approach MP/ press. I will definitely not give up.

Ross_Alumni

Hello @san23

Welcome to the community and thanks for introducing yourself. 

Just on this:

"I am so lost, feel like nobody is listening. I got child who does not understand risk / dangers .Space between bed and kitchen platform is 5 feet and that is space left for his activities. He now tries to explore each corner. Will turn oven knobs, get on chair and try to touch sink, electric hob, platform where I cook if of one arm length, I am scared any accident can happen. "

I know you earlier said that social services wouldn't help with the housing query, but have you approached them and explained all this about your son? If they knew your fears and these risks, your local authority might be able to do a needs assessment for him to see if there's any way in which they can support him and you in the home. 

san23

Thanks Ross for response.Yes I did mention to Social worker in detail why rehousing is urgent to cater my child’s needs. She simply refused saying it’s between you and housing department and they only intervene during safeguarding concerns. And since child had health professionals around him, I should seek support from them rather than social services. As per her medical threshold is high and my son is still waiting for diagnosis so she cannot help. I don’t understand sometimes health conditions do not even have diagnosis , in that case is there no support given to child. 

Ross_Alumni

Hello @san23

That is strange, you would think that if there are risks with the oven knobs, getting on chairs and electrical appliances like you mentioned above, then that might qualify as a potential safeguarding concern. 

There certainly are issues around only being able to receive support if you have a diagnosis. I can understand why, but it must be terribly frustrating especially when some diagnosis can take so long.

Tori_Scope

Hi @san23 I just wanted to check-in to see how you were getting on? 

san23

Hello Tori, I did not get any response from Housing team.I am actively looking in private sector, so hopefully will be able to secure accommodation.Will update here. 

Tori_Scope

I'm sorry to hear that @san23, but I'm glad you're actively looking in the private sector. Very best of luck, and please do keep us updated.