Choice Support, alongside all of the More than a Provider partners, has many stories showcasing the positive impact that enabling support can have on individuals with a learning disability. Here are four examples of the outcomes being achieved
Richard
Richard, an autistic 36 year old, had lived in six different placements by the time he was in his late teens. From a special school to a residential service for young people and a special unit, all these placements had broken down.
At his last placement, Richard was restrained 180 times in a year. The 24-hour three to one staff support designed to protect him had become a trigger for his aggression. Overwhelmed by the constant staff presence, the autistic teenager bit, kicked and punched others and self harmed by hitting himself or headbanging the wall.
Richard’s support was dominated by physical restraint, with staff unable to see beyond his reputation for being violent, unpredictable and difficult to manage.
For 18 years, however, Richard has been supported by a community-based care provider, living in his own home near his parents in the north of England. Within a year he was no longer restrained, needed only two to one support, and his annual support costs fell from £350,000 to £250,000.
Once considered too high risk to use a public gym, Richard has been a regular at his local pool, sports centre and cinema. Sunday nights at his local pub were on hold due to the pandemic, so instead he had weekly “home pub nights†with drinks, music and if he wanted, dancing.
He likes cooking and, with minimal support, plans and prepares meals like spaghetti bolognese and roast dinner. Richard has developed a love of music and is learning the piano. In a landmark moment, he played a lullaby for a 60-strong audience at a talent show organised by his support provider.
Richard’s provider employs a PBS (positive behaviour support) approach. This means an environment is created to suit him and staff are specifically recruited to meet his needs and reflect his interests.
Because Richard feels unsettled with too much choice, he has charts to outline meal options and his daily routine. Richard, not his staff, decides his schedule. Instead of the constantly changing agency staff, which he experienced in his previous support, Richard now has a familiar and permanent core team.
In place of restraint, staff use distracting, non-aversive approaches like reading aloud from Richard’s favourite book, possibly from another room, if they sense he needs some space.
Richard is now planning a trip to Disneyland Paris. Planning for the future is, Richard’s parents say, just one example of how he has “regained his life”.
Andy
Andy, 30, is autistic, learning disabled and has an anxiety disorder. In a seven-year period from the age of 18 he was sectioned twice, spending six of those years in several specialist inpatient units and ATUs. Although during this time he had short spells at his family home in the north of England and in supported living, these failed within months.
When under section, Andy would try to strangle staff or rip radiators from the wall when his anxiety spiralled. Restrained multiple times a day by five staff holding him to the floor, he was prescribed four drugs to control his behaviour. He was the kind of person, one social worker told his current support provider, who would be “lucky to last six months in the community”.
Five years on, Andy now lives in his own house a stone’s throw from his family home, with two to one support. He is a member of a social club, is part of a radio enthusiasts’ group that meets at the local pub, and is a regular at club nights for learning disabled people in his town centre.
Andy is on the lowest dose of two of the four medications he was on and instead of restraint, his staff use techniques such as distraction to help him feel calmer. For example, if Andy becomes anxious, they might withdraw from the room to give him some space while continuing to talk to him.
Fundamental to Andy’s care is the way his support provider has built a relationship of trust with him. This involves going at a slower pace (with new activities, for example) that suits Andy. It also means constantly reassuring him that he is no longer in an institution and does not need permission to do things in his own home. Initially after moving in, Andy would ask permission to use his own toilet.
This approach means Andy feels more relaxed and comfortable in his home and his personality and sense of humour are starting to emerge. He has, for example, a repertoire of impersonations that includes good-natured impressions of his staff. He is, as one of his support workers says “a natural mimic and a joker”.
George
George, 56, has moderate learning disabilities and autistic traits. He spent 37 years more than half his life in three secure inpatient placements and institutional style residential care.
George has a history of sexual offending and borderline personality disorder, which makes him emotionally unstable. At his most recent inpatient unit in the south of England, George was known for targeting staff with bouts of verbal aggression, often continuing for up to 24 hours. Over one six-month period, staff at this unit noted around 68 incidents of verbal aggression. Their restorative justice approach meant George had to apologise repeatedly until the person he had verbally abused felt ready to accept his apology. He was allowed out once a week for shopping, but only if he had run out of snacks. As a result, he would compulsively eat everything he bought immediately on return, knowing this gave him a chance to go out the following week.
After a year’s worth of planning and preparation by his new community-based support provider, George moved into his detached cottage at the end of 2020. In contrast to the restrictive approaches he’d experienced previously, staff trained are trained in PBS. They understand that George’s aggressive behaviour is his way of communicating that he is distressed and is also sparked by a failure to meet his needs.
After years of living in institutions, George expected punishments like losing the privilege to go out and was constantly on his guard. Staff supported him to understand that he has choice and control over his life. In the first month in his new home, the incidents of verbally aggressive behaviour fell by half. There were just six incidents in a month, lasting an average 30 minutes each.
Because he can help himself to snacks at home and goes out every day, George no longer hoards food or binge eats. On the first night in his new home, he asked staff to help him make a favourite meal – sausages and mash. He is now collecting recipe cards and wants to learn to make a pavlova.
He exercises daily and visits the coast at least once a week, which helps his mental health.
George’s two-to-one round the clock support has also enabled him to explore new interests like woodwork. He is currently designing a wooden guinea pig pen and looking forward to owning a pet.
Not long after moving in, he rang a friend he made in the secure hospital to tell him how great his life is on the ‘outside’.
Michael
Michael, an autistic man of 45, had lived in 10 institutional settings since the age of six including two hospitals and a residential school. In these settings, he was restrained multiple times a week, was on daily anti-psychotic medication and had five to one support. His behaviour included kicking, punching, and head butting staff. In one placement, Michael’s violent outbursts led to £25,000 worth of damage. Yet within four years of moving to a new-build bungalow in the south east of England in 2013, Michael was off anti-psychotic medicine, no longer being restrained, and his support fell to two-to-one at home, and three-to-one in the community.
The purpose-built new home has an autism-friendly design with assistive technology. It finally made Michael feel settled enough to invite his parents to visit, and to visit his family home for the first time in 14 years. The build itself was the result of a partnership between a provider, health and social services, and further developed by another provider.
A director at the first provider, says: “If there was one word to describe what this housing solution has done for Michael, it’s ‘opportunity’.”
The open-plan design of the one bedroom bungalow is modern and minimal so there is no sensory over stimulation. The plain colours, uncluttered spaces, and absence of fussy fixtures and fittings like curtain ties or visible pipework create a calm environment. Having external access to the boiler, mains water, and electricity means minimal disruption to Michael as tradespeople do not need to enter his property for maintenance purpose. In previous placements, having unfamiliar people in the house triggered Michael’s distress.
The assistive technology includes infrared movement sensors so Michael does not need direct support in his home at night. However, staff are on site just a few metres away. Sensors also detect if Michael has had an unsettled night, so staff are aware that he might be more tired the next day.
One challenge was reassuring Michael’s anxious family that, after a succession of support failures, the new bungalow would be a success. His family was involved in the design and decor, advising on colours and furniture. Aware that a new environment might add to Michael’s anxiety, the detailed moving plan included storyboards showing the process, so Michael was aware and involved.
The house is a short walk from local amenities, which Michael frequently uses. The current support provider director says: “The joint working at the planning/design stage of accommodation is key part to the success of this accommodation.”