Key Takeaways
- People with motor neurone disease (MND) are facing huge backlogs in applications for essential home adaptations, with an average wait of 375 days in England.
- A third of people with MND die within a year of diagnosis, and about half die within two years, meaning they are spending their last months fighting for support.
- The MND Association is calling for a formal fast-track process for people with the disease and other rapidly progressive conditions, as well as waiving the means test for adaptations.
- The government has invested £711m in the disabled facilities grant to cut down waiting lists and fund thousands of additional home adaptations.
- Campaigners are highlighting the need for urgent action to support people with MND, who are often left in unsafe and unsuitable homes due to delays in getting access to funding.
Introduction to the Issue
People with motor neurone disease (MND) are dying waiting for grants to make their homes fit to live in due to a huge backlog in applications. The MND Association has found that it takes an average of 375 days for people in England to get essential home adaptations through the government’s disabled facilities grant (DFG). This is a significant issue, as a third of people with MND die within a year of diagnosis, and about half die within two years. As a result, many people with MND are spending their last months fighting for support, often in unsafe and unsuitable homes.
The Impact on Individuals
The delays in getting access to funding are having a devastating impact on individuals with MND. Nicole Foster, 56, was diagnosed with MND in May and has spent her entire life’s savings, as well as money fundraised on her behalf, replacing her bathroom with an accessible one after she was told she faced a two to three-year wait for DFG funding. Foster has also been told she needs a through-floor lift, but faced with another lengthy wait, she ended up paying for a stairlift. She has fallen at home a number of times, the main reason why her husband has given up his job to care for her. Foster’s experience is not unique, and many people with MND are facing similar challenges in getting the support they need.
The Need for Urgent Action
The MND Association is calling for urgent action to support people with MND. The charity’s chief executive, Tanya Curry, said that waiting a year or more for vital adaptations is equivalent to being denied them altogether. The association wants the government to introduce a formal fast-track process for people with the disease and other rapidly progressive conditions, as well as waiving the means test for adaptations. This would help to ensure that people with MND get the support they need in a timely manner, rather than being left to struggle in unsafe and unsuitable homes.
The Government’s Response
The government has invested £711m in the disabled facilities grant to cut down waiting lists and fund thousands of additional home adaptations. A Ministry of Housing, Communities and Local Government spokesperson said that waiting for DFG funding can have a devastating impact on people’s lives, which is why they expect local authorities to progress as quickly as they can. However, campaigners argue that more needs to be done to support people with MND, who are often left in desperate situations due to delays in getting access to funding.
The Importance of Fast-Tracking Applications
The MND Association is highlighting the importance of fast-tracking applications for people with MND and other rapidly progressive conditions. Alex Massey, head of campaigning, policy and public affairs at the charity, said that the current timeline is just totally unworkable and unacceptable. Massey argued that people with MND need to be prioritized, and their applications need to be treated as urgent because their needs are only going to progress over time. The association is calling for a formal fast-track process to be introduced, which would help to ensure that people with MND get the support they need in a timely manner.
Conclusion
In conclusion, people with motor neurone disease (MND) are facing huge backlogs in applications for essential home adaptations, which is having a devastating impact on their lives. The MND Association is calling for urgent action to support people with MND, including the introduction of a formal fast-track process for people with the disease and other rapidly progressive conditions. The government has invested £711m in the disabled facilities grant, but more needs to be done to support people with MND, who are often left in desperate situations due to delays in getting access to funding. It is essential that urgent action is taken to support people with MND, who are spending their last months fighting for support in unsafe and unsuitable homes.
