Motor neurone disease (MND) is a progressive, incurable neurological condition that causes irreversible loss of muscle function. Getting existing homes adapted or finding accessible homes can be challenging for MND patients. This briefing from the MND Association, foundations, and Royal College of Occupational Therapists aims to support better practice in delivering disabled facilities grants (DFGs) by reducing the time from assessment to completing adaptations, ideally through fast-track systems. It highlights issues like the means test, bureaucracy, and condition degeneration outpacing services as hurdles and provides key documents on MND costs and the need for timely adaptations.

1. ADASS Briefing MND DFG
A collaboration between the MND Association, Foundations and
the Royal College of Occupational Therapists
Alex Massey – Policy Manager MND Association

2. About motor neurone disease
• Progressive, incurable & terminal neurological condition
• One third of MND patients die within one year of diagnosis
and 50% die within 2 years of diagnosis
• Irreversible loss of muscle function
• Affects different parts of the body in different cases
• Progression rates vary but can be extremely rapid
• Extensive associated health, care & support needs

3. MND Costs (2018)

4. New report

5. Issues
• Getting existing homes adapted
• Home unsuitable to adapt - people struggle to find
appropriate accessible homes
• Financial impact
• Where funding is available it can take some time to
get adaptations undertaken
• Rapidity and unpredictability of MND - no time to
wait.

6. Timeliness is the essence
“A DFG process that can meet the needs
of a person with MND in a timely way will
be a good process for everyone”

7. Aims
• To support the development of better
practice in delivering DFGs
• To focus on reducing the time taken
from assessment to adaptations being
carried out: in particular, that
streamlined fast track systems,
whatever format these take, are
brought into place

8. Hurdles
• Poor access to advice and information
• Impact of the means test
• System pressure
• Bureaucracy
• Condition degeneration outpaces the service

9. Content – ethos and layout
• Carrots not sticks
• Collaborative – supportive – best practice
• Problem
• Solution
• Good practice example

10. Main messages

11. Content - Key documents
• MND Association - MND Costs
https://static.mndassociation.org/app/uploads/2017/06/19135031/DEMOS-FULL-
report.pdf
• MND Association – Act to Adapt
https://static.mndassociation.org/app/uploads/2019/09/23162517/Act-to-Adapt-
Full-report.pdf
• Foundations DFG Review
https://www.foundations.uk.com/media/5665/dfg-review-2018-main-report-
final-nov-2018a.pdf
• RCOT – Adaptations Without Delay
https://www.rcot.co.uk/adaptations-without-delay

12. Endorsements
• RCOT
• Foundations
• MND Association

13. Distribution
• ADASS briefing
• Website
• Training
• Not a public facing document

14. Next steps
• Follow up through ADASS newsletter
• Collect any good practice and cascade