Case study three: Downs Syndrome, autism and supported living

Case study

Carl is the second oldest in a family of four, with an older brother, a younger sister, and younger brother. Carl has Downs Syndrome and autism, along with health issues including Coeliac and liver problems. After attending a specialist school and then a local college that didn’t quite suit him, he enrolled in the National Star College for a three-year course. The original plan was for him to transition smoothly into supported living after college. However, the local authority’s barriers and delays forced him to return home for three months, as there was no clear matching service, just the vague idea of placing him wherever there was an opening.

Carl’s family always knew about supported living, with the intention for him to stay local. Despite working within the system and being familiar with the Care Act, they received little guidance from the local authority. Frustrated with the lack of answers and a proper assessment, Carl’s family took matters into their own hands, sending a pre-action protocol letter in 2020 with the potential for a judicial review.

The experience of finding a suitable place was challenging, marked by negativity and a bureaucratic maze involving three different social workers. The turning point came when a local house with four occupants was suggested. The home manager played a crucial role in making the transition smoother, and eventually, one of the managers had to step in to resolve issues.

Supported living, as described by Carl’s family, is a positive arrangement where your child shares a house with others having similar disabilities. It’s akin to a typical flat share, but with a support provider catering to the individual needs of your young adult. While compromises are necessary, the overall experience can be positive, and resources like an online book called “Moving into Adulthood” offer valuable insights.

Barriers in the process mainly stemmed from a lack of empathy and support from social workers, who seemed more focused on budgets than finding suitable placements. The process lacked proper timing and needed more training for social workers to understand the unique challenges of learning disabilities and autism.

Fortunately, gender did not impact Carl’s case, but mental health support for both the family and Carl was virtually non-existent, with frustrations ignored.

To improve supported living in the UK, Carl’s family proposes more training for social workers, especially in understanding the profound impact their decisions have on someone’s entire life. They advocate for a longer preparation period leading up to the move, ensuring spare rooms are not filled hastily. Providers should undergo more training to empower those in supported living to be active members of the community, promoting a proactive approach over a passive one.

The family perceives the system as broken, emphasising that individuals needing support can still lead productive lives and be part of a community. There’s a plea for more respect and better pay in the care industry, with a call for updated social care training and specialised modules. Carers and support workers deserve a proper career pathway, recognised training, and qualifications, accompanied by an improved pay structure. In essence, the system needs an overhaul to prioritise the wellbeing and potential of those in supported living.