Springtime in the Midlands
‘Spring’ announced Indy, symbolically. It was Day 1 in his new house on a bright January morning. It was, finally, a fresh start.
Indy is slowly regaining control over his life. He makes more choices than ever before. His medication has been reduced and despite negative associations from the past, his trust in health professionals is increasing. He has a place of his choosing and a mobility car. After 15 years he has re-learned to ride a bike. He visits the park gym. He shops at B&Q and gets a burger from the van outside. He likes to look good and has a fortnightly haircut. It is the stuff of a normal life.
Crucially, Indy is also learning to manage his autism and his anxieties, particularly now finding the texture of his quilt reassuring. Even through the Covid lockdown, incidents have become the exception rather than the rule.
Indy’s story provides pointers for all those involved in supporting young people through difficult transitions to adulthood, as manager Emma and parents Mr & Mrs Singh together explain:
Mr & Mrs Singh
“Until age 12, Indy was thriving,” recall the Singhs, “But the combination of bullying, entering adulthood and a change of school and family home set him on a 2-year journey to violent behaviour, a crisis and an adolescent unit. This was when, as a family, we began to learn how much we would have to fight for our son.”
The unit was followed by three years at residential school and then two disastrous residential care placements that culminated in a hospital admission. He was there for 3 years.
“What did the system get so wrong? So much, but I’d like to highlight Medication, Listening, and Attitude:
“Indy was put on antipsychotic drugs aged just 14. He was never psychotic, it was simply the easy option. And following an epilepsy diagnosis there was little consistency in the administration of his medication. One ‘care’ home didn’t even record his seizures and simply stopped administering the drugs, resulting in a massive tonic-clonic attack.
“Indy was given too much of the wrong types of medication, inconsistently and without proper review. It was literally a recipe for disaster. At one point we could see from our family tracking that his behaviours were related to his epilepsy and the medication wasn’t working. Why couldn’t they?”
“As a family we knew he needed a change of medication and a consistent approach but we could get no-one to listen to us. We’ve taken every opportunity to inform and guide all the various agencies in Indy’s life, never missing a review, but to little avail; I believe the system is designed to react to a person’s symptoms rather than considering their cause. It responds to a crisis rather than focusing on preventing one.
“Because of this we had to employ an educational solicitor and a private social worker to advocate for us to fight the local authority and the NHS over a period of years – we’re lucky that we could afford these costs.”
“I believe most parts of the system saw Indy as a money machine. How much money could they extract for how little work.
Most staff were neither trained in meeting Indy’s needs nor interested in responding to his preferences. They blamed him for his challenging behaviour; never did a provider acknowledge that this was the product of his environment.
They didn’t care.
There was a point at which Indy simply stopped speaking, eating, drinking and washing. He would enter a catatonic state for hours on end. That resulted in a lifesaving hospital admission. It was Indy’s final, desperate way of calling for help.”
“We will forever be grateful for Indy’s hospital admission. But they’re under so much pressure to discharge patients quickly. They tried to discharge Indy within the first year. We fought against this, against the risk of another unsuitable placement and before Indy’s medication had been properly, comprehensively reviewed and tested.
“The turning point, for us, was finding a private social worker to advocate for and guide both Indy and us. Someone who could use the Care Act properly. Someone who was able to get Indy’s medications properly reviewed. Someone who was clear that Indy needed to be in a single-person supported living environment, but not before his long term care and treatment were thoughtfully arranged.
“Indy’s family are central to every decision that we make,” says Emma. “They fought to get him out of hospital and we make few decisions without consulting Mr and Mrs Singh first. After all – no-one knows Indy better. We have a grown-up relationship where we can discuss difficult issues and usually find a shared view. We both have Indy’s wellbeing at the centre of all our decisions, and that of course helps. Beyond that, I’d like to highlight three features of Indy’s support that have made all the difference. His housing, his staffing and his Behaviour Support:
“Indy has a proper bachelor pad. It’s painted cool shades of grey, it’s open plan, it’s exactly what most young men would be looking for at this stage of their lives. Our housing team was able to make some design alterations to provide staff escape routes etc without compromising the aesthetic. Most importantly, Indy chose it. It is his home.”
Indy currently has 2:1 staff 24/7. His team was matched to him – he likes people to look after their appearance, and he is more comfortable with older adults (sorry team!) They are devoted to him, going the extra mile through lockdown especially to keep him safe and happy. As visiting the barber has been impossible, one colleague has even taken to hairdressing to keep Indy groomed in the way he likes.
Because change is a trigger for Indy, the team has adopted unusually long shift patterns. This also means that Indy’s choices of how to spend his day are rarely restricted by changeover times.
Behaviour Support on tap
“Expert behaviour support input has been pivotal from day 1,” says Emma. “I’ve worked in support for 22 years and in my view this is what makes our support truly distinctive. I have behaviour support input and advice on tap, as needed. From the very beginning of our involvement with Indy, we’ve put behaviour support strategies in place to help him regain control over so many areas of his life. This has underpinned everything.”
The Singhs conclude, “We’re working together on plans, post-Covid-19, for Indy to be able to visit us independently and to take a holiday. Beyond that? We want him to do more and more – lethargy is bad for his mental health. We want him to have friends, be active and be happy.”
It shouldn’t be too much to ask.
- Indy now lives in his own home, that he chose.
- Indy is learning to manage his autism and his anxieties
- Indy's medication has been reduced
- Indy has greater choice and control over his life
- Indy's trust in health professionals is increasing
- Indy is now leading a more active life out in his local community.