‘Things need to change and SEN children/adults with disabilities need to be taken into account for them to live full lives’-Mother of SEN teenager asks council to be fair in their approach.
These children face so many challenges in their lives already, why now must they have further restrictions due to lack of funding?
‘Us SEN parents are tired but will not give up the fight, never.’
The Panorama documentary aired last night, Monday 18 March, highlighted the uphill financial battle Havering Council and other councils across the country face due to a shortage on government fundings.
The documentary featured the story of 17 year old Harley from Romford and his mum Ila who face potential changes to the way Harley travels to school if the council makes funding cuts to the transport system for SEN children across the borough.
Harley was 18 months old when he was diagnosed with a brain tumour. After a successful eight hour operation at Great ormond Street Hospital it was fully removed but left him with multiple disabilities. He has been left with cerebral palsy, a brain injury and autism and is fully reliant on a wheelchair.
His mum Ila told the Havering Daily: “I have always taken Harley to and from school up until September 2023 when he started his special needs college. For him to be safe and travel independently away from having to always rely on his parents, I used the Havering transport service and it has been an amazing choice. He has a consistent escort and driver on the bus that have got to know his disabilities and make him feel safe. He enjoys not only the socialisation with his friends but the feeling of being more mature and included. Mainstream students of Harley’s age are generally able to travel to and from their education settings without their parents and it is a vital part of transitioning to adulthood. For Harley, using the Havering bus is the only way he can experience this as he remains in his wheelchair to travel which is very limiting to the vehicles he can travel in. Harley is hoisted for all transfers out of his chair and requires 24/7 care which we as his parents provide and will continue to provide for as long as we can. However, we feel that Harley has to spend so much of his time on the outside looking in due to his physical disabilities it is one service that he can be a part of without that happening and is vital for his independence.”
Harley loves his bus ride into school, the programme aired clearly showed a happy smiling teenager enjoying his time with his friends as all teenagers do. It also gives him that bit of independence that allows him the right to thrive like all 17 year olds.
Ila is sympathetic to the council’s needs and does understand the challenging issue they are faced with.
“We completely understand the council having to look at finances due to the struggles. I raised during a meeting held by Havering that I personally would be happy to pay for the service as it has such huge benefits for Harley, however, that means testing should be fair and financial assessments made on the individual over 18 using the service, as it is done in social care, to determine the amount that could be contributed.
I am anxious for the future because him travelling independently to his education setting or daycare setting when leaves education is so very important, but no as I will ensure that he is able to attend where he needs and if that means him having to be taking by ‘mum’ then that is what will have to happen but it will be a step back for his independence.”
Harley and his mum are faced with endless challenges that they should not be faced with.
“Harley cannot car share or use many taxis due to the size and height of his electric wheelchair with him sat in it and he requires a full ramp to enter a vehicle.
When you have a child with SEN you have to fight for everything right down to their independence and inclusion in society. Harley cannot even use his own town centre to shop/use cinema etc as there are no changing places facilities he needs – even though the council were awarded the funding for two. Things need to change and SEN children/adults with disabilities need to be taken into account for them to live full lives.”
We asked Ila want changes she would like to see and what her message is to the government and local council.
“Be fair in your approach and make decisions on individual cases. Do not blanket and pigeon hole our children as each one is unique.
Government: look at the whole system – from carers allowance (which is pitiful when you have given up your career to become a full time carer from child to adulthood) to the children and adult services which are overstretched and overwhelmed. Us SEN parents are tired but will not give up the fight….Never.”
Harley is a happy, smiling teenager who has the same right as every other teenager to travel to school as independently as he can. He should have access to enjoy his town centre at the weekends as all other teenagers do. Yet this is not even a possibility for him. Why now, are we going to remove his only bit of independence he has, which is travelling to school by bus and laughing with his friends, because of financial cuts?
Every child has the right to an education. SEN children do not have the a voice, so it is their parents who stand up and make their voices heard. These children face so many challenges in their lives already, why now must they have further restrictions due to lack of funding?
Harley with his mum and dad at his school prom.
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