This week saw the launch of Muscular Dystrophy UK's latest report, 'Breaking Point', which examined to what extent housing and adaptation needs for people with muscle-wasting conditions are met by local authorities.
The overall findings are worse than I anticipated, and I knew it was going to be pretty bad. As a lifelong wheelchair user with Spinal Muscular Atrophy type 2, I know first-hand that looking for an accessible house is like looking for a needle in Loch Ness. Finding somewhere with no steps or stairs is far easier said than done, and many people find themselves spending several years trapped in an inaccessible property, waiting to move or have adaptations made.
Here are the highlights of the report:
• 70% of people surveyed live in properties which do not meet their mobility needs.
• Council waiting lists for accessible properties go into the hundreds, with precisely zero available properties.
• More than a third of families surveyed had no option but to spend tens of thousands of pounds to make necessary adaptations to their home, sometimes incurring large debts in the process.
To fix the crisis in affordable adaptations and accessible housing, Muscular Dystrophy UK is calling for:
1. The Department for Communities and Local Government (DCLG) and local authorities to act immediately to increase the building of accessible properties.
2. The Government to increase the statutory maximum grant available for Disabled Facilities Grants (DFGs), and ensure that this figure moves up in line with inflation.
3. Local authorities to make more use of 'discretionary payments' for DFGs, and for all local authorities to have a policy to consider requests for these payments.
4. Local authorities to apply criteria on 'minimum residency periods' (criteria that must be met before an individual or family can go on their housing register) with greater flexibility.
5. All local authorities to hold a register of accessible properties.
The report was launched at the All-Party Parliamentary Group for Muscular Dystrophy, and Muscular Dystrophy UK invited me to attend and speak in front of MPs and Peers. The usual call was sent out to rally the troops and, despite the best efforts of some protesting taxi drivers blocking Westminster and the torrential rain, there was a pretty good turn out, as a group of hardy young disabled campaigners from Muscular Dystrophy UK's Trailblazers stormed Westminster on Wednesday.
As I was late, and rather rain-drenched, I skipped what I'd prepared and dived straight into the middle of the discussion. Housing is my "broken record" subject and I won't deny I had been looking forward to this meeting.
The current red tape/guidance and legislation is designed to make sure that accessible housing is available to those who need it, but as the report shows, it is not routinely followed, monitored, or enforced. The results of this can be devastating to families, including young children with changing needs, yet there seems to be no appetite to tighten the regulations, or make sure the current regulations are being followed.
Local authorities hold the responsibility for delivering Planning, Housing, and Adaptations in their local area, but as we've seen they leave a lot to be desired. There was a suggestion that change needs to come from the local authorities themselves, but the Planning and Housing officers I've previously spoken to seem unaware of how to solve these problems. They cite lack of examples of best practice, pressure from developers, and a lack of information.
A few of us stayed on for Round 2, sharing our experiences and perspectives with Marcus Jones MP, Parliamentary Under Secretary of State (Minister for Local Government). He seemed genuinely interested in hearing the findings of the report, and I am hopeful that he will look deeper into the causes and consequences of these issues to find mechanisms for change.
Up to now, it almost looks like each organisation has been blaming another, waiting for another to make the first move, ignoring a problem that's not their responsibility to fix.
Meanwhile, as a result of an ageing population and continuing inflation, the gap between what is needed and what is available continues to grow, leaving more and more families at physical and financial risk.
What we are calling for is for local and central government to meet the obligations they have been failing to meet for almost two decades; to honour commitments that are neither new nor revolutionary; and to accept their responsibility to work together to end this crisis.
When hundreds of people per town are living in unsafe housing for years with no other option, something needs to change.