Page 15 - Community Living Magazine 35-1

Life after ATU

Williams listened to the family and Expertise benefits others
respected their expert knowledge of their Determined to use her expertise and the
child and was, in Hannah’s words, “really knowledge gained throughout Rex’s
instrumental in getting everyone to do journey, Hannah decided to help other
what they were supposed to do”. families whose loved ones’ needs meant
This meant that Rex was discharged that they required bespoke programmes.
from hospital in two weeks, rather than As if a foundation in Ghana and a UK
5.6 years – the average length of stay, charity were not enough, she has
according to NHS Digital figures from 2020. established SEND UK Solutions (www.
senduksolutions.org). SEND UK Solutions
A new home and the family designed Rex’s bespoke
Four months after discharge into short- adult learning programme to develop his
term provision in Kent, Rex had his first numeracy and literacy, as well as skills for
care, education and treatment review. His life in areas such as laundry and healthy
social worker suggested a care provider eating. SEND UK Solutions works with Axcis
that she had worked successfully with in Education (www.axcis.co.uk) to provide
the past, Right Support Management his personalised education programme.
(www.rightsupportmanagement.co.uk). Hannah and Rex Otoo She continues to run SEN Parenting,
They identified a three-bedroom which runs workshops, informal meetings,
property 20 minutes from the family the furniture accommodated Rex’s wellbeing sessions and a WhatsApp group.
home that could accommodate Rex, his sensory and self-regulation needs. More recently, she has been working on
2:1 support and an overnight carer. They “Every day, he needs to run round a lot crisis prevention with NHS England and
provided the tenancy and the care team, just to release energy. He has a little soft voluntary organisation A2ndVoice (www.
carefully selecting staff with the right skills area where he can bounce on his ball… a a2ndvoice.com), running training for black
to work with Rex and collaborating with space so he can run around… a little and minority ethnic families with children
the family from the outset. garden… We are planning to get him a and young people who are autistic and/or
“We the parents were working with him swinging chair to give him sensory input.” have a learning disability.
throughout from day 1,” says Hannah. The provider listened and took on board “Because of my experience in Ghana and
“We explained Rex’s childhood, his past, Hannah’s expertise in her son as well as cultural background, I know the main
what he likes, what triggers him, how he her professional knowledge. She taught problems that affect stigmatisation, the
communicates… And they took it all in. Rex’s staff how to use calming strategies family not accepting. They can look down
We are fully part of the care team.” and cook his favourite meals. on people with disabilities and feel they are
The care provider worked with the Thanks to this partnership working, Rex’s not supposed to mix with them or they have
family to adapt the house to meet Rex’s transition to his new home went well. He is to ‘go back to the gods’. It’s that community
needs – latches on windows, wipeable now an active member of his community. thinking that it’s a curse so you have to have
flooring and boxing in potentially His week is planned with activities he prayers or something,” she says.
hazardous items. enjoys – visiting local shops to buy the “They [services] say it’s bad parenting
They installed a sensory light system African foods he loves, learning how to skills and the barrier of communication as
that he could control, and important areas cook, trampolining, going to the park and well… In my experience, training can work
and items were labelled with PECS restaurants and seeing friends he has for not only the mums and dads but also
symbols. Most importantly, the layout of known since childhood at Bible meetings. the wider family… So, when they accept it
and they understand, they know how to
help them and then they respond.”
For Hannah and her family too, there
has been progress: “It’s like a dream come
true. He’s much more settled and smiley
and much more able to engage and
learn… Although he has his needs, we’ve
created the house to accommodate his
sensory needs and his communication
needs… it’s bringing the best out of him.”
Although Rex’s needs have been
described as complex, the key things he
needs for a safe and happy life in the
community are simple, as Hannah
explains: “Living with people who
understand him and want to make him
happy, who will work hard to get the best
out of him, interact with him and see him
as a person. And family being part of his
everyday life. Getting close to the family
– that’s the number one.” n
A normal home life: Rex choosing food he likes ● This is the second article in our series on a
and looking after his adapted flat positive life after assessment and treatment
www.cl-initiatives.co.uk Community Living Vol 35 No 1 | Autumn 2021 15