Diolch, Dirprwy Lywydd. I'm delighted to, once again, be able to raise the issue of motor neurone disease in the Senedd, and I've agreed to Mark Isherwood and Dai Lloyd that they can have a minute of my time. 

In 2014, I held a short debate on the plight of people living with motor neurone disease and called on the Welsh Government to recognise some of the challenges that people in Wales are facing and look at ways it can better support the MND community. While some progress has been made, and for that I know that I and people living with MND are very grateful, there's still much more than can and should be done. Today's debate specifically is about the need to support people living with MND by adapting the current process and making it easier for them and their families to adapt their homes in response to living with the condition.

Undoubtedly, MND is a cruel disease. It's one that robs people of their dignity and, unfortunately, carries quite literally a death sentence. And so if one message is taken from this debate, it's that time is critical for people living with MND. It's believed that MND kills a third of people within a year and more than half within two years, and so time is so important in ensuring that they can live in a safe and suitable home. Housing adaptations and the process by which they are made to a property need to be quicker, more joined up and ultimately need to recognise the importance of swift action to ensure that people living with MND can live as comfortably as possible. 

Now, in 2018, the Auditor General for Wales published a very important report on housing adaptations more generally, and that report highlighted a number of significant issues. Indeed, that report states that user satisfaction with housing adaptations masks a hugely complicated reactive and inequitable system that is not delivering for all those who may need it, and public bodies are not taking opportunities to improve value for money. The report also highlights that the current system for delivering adaptations reinforces inequalities for some disabled and older people, and addressing need is complicated by the different sources of funding. And people living with motor neurone disease are very much within the umbrella of people living with complex neurological problems who are struggling to adapt their homes quickly enough. 

Now, following the auditor general's report, the Public Accounts Committee, which I chair, also undertook a short inquiry into housing adaptations to focus on some of the themes and established ways in which we could help guide the Welsh Government to improve its processes. What the committee found was that there were so many sources of funding and policies for adaptations it results in disabled and older people receiving different standards of service and therefore the Welsh Government needed to set standards for all adaptations to ensure disabled and older people receive the same standard of service irrespective of where they live, who their property owner is, and whether indeed they own their own home. 

Now, to the Welsh Government's credit, some very important work has been done to review and implement changes to the adaptations process, and I fully appreciate, and the MND Association fully appreciate, that this is a process that will take time. As I understand it, the Welsh Government has established service standards that apply to all adaptations irrespective of tenure, provider or source of funding, and that's been in force since April 2019. Secondly, the Welsh Government has attempted to review the policy on means testing and implement changes, and I know that some work has been done with the housing adaptation steering group, the HASG, looking at how means testing should not be applied to less complex small and medium adaptations or individuals receiving palliative and end-of-life care. The Wales Centre for Public Policy was then tasked to take this forward, involving significant engagement with local authorities. However, the current COVID-19 pandemic has meant that the work has been paused, and the research done by the Wales Centre for Public Policy has not been able to progress as planned. In the meantime, people in Wales living with motor neurone disease and other neurological conditions continue to struggle to get home adaptations done quickly, and, as a result, some are living in homes that are neither safe nor suitable for them. And this is having a very direct impact on health and well-being, which may lead to isolation, lack of physical activity, disengagement from family and community, and unsafe environments contributing to accidents and falls.