Anyone who has been involved in the process of finding the right accommodation and support for an individual with Prader-Willi Syndrome (PWS) will know it can be a difficult task, but what about when that person also has additional complex needs and behaviours that challenge and give rise to compatibility issues with others?
For these individuals, the right care and support to meet all aspects of their unique needs is critical but also presents a multi-faceted and complex challenge.
Prader-Willi Syndrome, a rare genetic disorder affecting 1 in 15,000 births in the UK, is characterised by a persistent hunger and excessive appetite which can lead to serious health consequences. As it is a spectrum disorder the other range of cognitive, emotional and behavioural challenges associated with PWS vary depending on the individual. Most will present with a learning disability whilst others experience more acute symptoms that result in complex needs and/or mental health problems.
When the current successful model doesn’t fit all
Residential care has proved a successful model for people with PWS who live in a shared setting with others who have PWS. This allows peer support, 24-hour food security and improved health outcomes but success is dependent on compatibility of those sharing, which can be difficult when an individual has additional complex and challenging needs.
Similarly, for individuals with PWS, the philosophy of greater levels of control promoted within a tenancy based supported living environment can be problematic when establishing boundaries around access to food both at home and in the community.
So, the question then becomes what is the right accommodation and support model for an individual with PWS who isn’t suitable for either setting?
The living space needs to suit their complex needs but also have the right lifestyle structure and support system in place to ensure food consumption is managed. The support team need a strong understanding of PWS and the Positive Behavioural Support to help reduce behaviours associated with the condition and a level of expertise in supporting additional complex needs and mental health issues.
Pioneering a unique solution
Weston Villa, a unique PWS service, was pioneered by Consensus in response to this challenge. Consisting of four individual flats and a communal lounge and garden, the service is an innovative flat based model of accommodation and support which draws on the key elements that have made the traditional household model a success, while also delivering an individualised living environment enabling compatibility issues to be supported more easily.
Ray Godwin, Head of Development and Partnerships, North, explains, “At Consensus, we have spent many years developing our world-renowned PWS services alongside our traditional offering of support and accommodation for individuals with a learning disability who may also have complex needs and behaviours.”
“We were in a unique position to use our dual knowledge and experience to bring something new to the table, to bring the right balance of structure, space and support for each individual. The service retains the fundamental elements of a successful residential PWS service and 24-hour food security but with individualised support in their own flat from a team trained in both PWS and Positive Behavioural Support.
“At meal times, the support team measure out ingredients and deliver them to each individual at their flat where, depending on their level of independence they can then prepare their meal on their own or with support. This gives individuals more choice and control,” Ray continues.
“The fact that all four flats were taken up before the service was opened shows there was a real demand for this type of service model and this demand is ongoing.”
For more information and/or to discuss opportunities for future partnerships, please contact: Ray Godwin, Head of Development and Partnerships via: email@example.com