One of the biggest barriers to living an independent life as a disabled person is the lack of suitable, accessible housing.
This is why Pathfinders Neuromuscular Alliance is partnering with Duchenne UK, to address the lack of choice and control over accessible housing for people with muscle-weakening conditions.
The project was devised following the outcome of a survey from Pathfinders, which showed that finding suitable housing is the issue that adults with muscle-weakening conditions most want to address. It will be led by Dr Jon Rey-Hastie, CEO of Pathfinders Neuromuscular Alliance, and Dr Janet Hoskin from the University of East London.
Pathfinders will be carrying out research with people with a range of muscle weakening conditions. Pathfinders hopes to use this project as a springboard for an accessible housing campaign that can improve availability of accessible housing for the entire neuromuscular community.
Duchenne UK will be investing £15,936 in the project, looking specifically at experiences of people with DMD and their families, which will run over the course of six months, and expect to be able to share results by the end of the year. This funding will allow a series of focus groups and surveys, to identify the housing needs of people with DMD and their families and explore the current barriers.
Dr Jon Rey-Hastie shared his own experiences and aspirations for the project: “As an adult living with DMD, the lack of accessible housing has been a major barrier to me throughout my life, from not being able to live with friends at university to struggling to relocate for work and family. I have had to navigate a discriminatory, complex and inconsistent system to be able to live independently in my own home. It is my hope that through this project we can identify and take meaningful actions to provide more options for other people living with muscle-weakening conditions seeking to live independently.”
If you have personal experiences of seeking accessible housing and would like to be involved in the project, please contact firstname.lastname@example.org to express an interest.
We would like to thank Duchenne UK’s charity partner, Alex’s Wish, and the following family funds for contributing to this project: Help Harry, Jacobi’s Wish, Jack’s Aim, Ralphy’s Fund, Henry’s Hurdles and Cure4George.