Julie and her son William (who is a Guideposts Better Connected Member) are based in Oxfordshire and have been working through the pitfalls of social care and housing to maintain William’s independence as an adult who is autistic, has dyspraxia and learning disabilities. We follow their experience of facing the cost of living crisis, falling through the cracks of the system and what they have learned from the experience.

William’s Story

William (29 years old) has been a member of Guideposts and Better Connected for many years and lives in Oxford. Julie (also a coordinator for the Dyspraxia Foundation in Oxfordshire), his primary carer, recently contacted Guideposts looking for assistance and a letter of care in applying for William to
have assistance in social housing and social care support.

Up until September 2022, William had been living in accommodation assisted by a family member in Oxford, which was also close to his mother’s residence. This was ideal in that although the rental was expensive, William received support from family members with daily living tasks which he needs and benefits from. William is independent socially, employed full time in Oxford and lives close to work. He has a good level of autonomy which is a tribute to the ongoing support Julie has established with William throughout his life in working with his disabilities. Julie had reached a position where due to retirement and other personal circumstances, she wanted to sell her residence and William couldn’t maintain the increasing rental and bills on the property he was house sharing in Oxford.

The Problem

Julie moved further afield as property in Oxford is expensive and William needed to find new accommodation in Oxford, close to his employment. This placed William in a position of either having to move into cheaper shared accommodation in Oxford, which would be very challenging given his vulnerabilities; or ideally he could live alone with regular professional support from carers. With Julie approaching the limitation on physically being a carer, long-term professional support for William would need to be managed as a solution to maintain his independence.

Support for William in his later years had to be considered in case Julie may no longer be available in later life. Private carers were too expensive to afford if William was living alone and through necessity, Julie had to approach the Council for support in care and also to apply for social housing. In applying for support from the Council and social housing in July 2022, the Council noted that with William’s disability being mild, he would not be a high priority for social housing and the application, if accepted, could take years before being offered a place, given the current demand for, and shortage of, social housing, particularly in Oxford.

What Happens Now?

William has been offered, in principle, a weekly hour of care support from the Council. Julie noted this would unfortunately not be sufficient for the level of assistance William would need in maintaining daily living, assistance with managing aspects of his finances and other needs, especially as William gets older.

In approaching the Council for assistance both for ongoing care and in the application for social housing, Julie realised this would not be a quick process and contacted Guideposts and other affiliated organisations that support William for assistance.

The Council would need letters of care to evidence that William would be a priority with respect to his disabilities in terms of his listing in social housing. The Council had already informed William and Julie that William’s level of disability did not qualify him for the existing council-run supported residential accommodation. This has left Julie and William with no option but to rent a flat in Oxford so William is in travelling distance from work. Julie recently moved to Witney and now commutes regularly at expense to support William in his daily living tasks and for other care.

Helping Hands

Most help has come through friends, voluntary organisations and by word of mouth.

Although there are support structures out there, Julie has struggled to get reliable assistance to help maintain William’s independence in this forced transitional period and for the long term.

They have found that the problems and complexities in having to prove disability and justify assisted care has exacerbated the problem, and will possibly lead to more severe issues when Julie is no longer available to support William. This has brought into focus the need for stronger official support structures and organisations that will help individuals who have developed their independence within their disability to a good level, to maintain their productivity and independence in society throughout their lives.

If you are in a similar situation, you might like to ask William and Julie a question, or share your story with us. Please call us on 07850 648 104 or email betterconnected@guideposts.org.uk