Written evidence submitted by Muscular Dystrophy UK [DPH 027]

About Muscular Dystrophy UK

1. Muscular Dystrophy UK (MDUK) is a charity that connects a community of more than 110,000 people living with one of over 60 muscle wasting and weakening conditions, and all the people around them. So everyone can get the healthcare, support and treatments needed to feel good, mentally and physically.

2. We do this by sharing expert advice and support to live well now. We fund groundbreaking research to understand the different conditions better and to lead us to new treatments. We also work with the NHS towards universal access to specialist healthcare. Together, we campaign for people’s rights, better understanding, accessibility, and access to treatments.

Executive Summary

3. Many people living with muscle wasting and weakening conditions rely on accessible housing features to live independently. To understand how to improve access to housing, we heard from our community networks about the barriers they face. We also reviewed developments since our 2015 report on housing and the progress in two areas: accessibility standards for new homes and the Disabled Facilities Grant (DFG). Our concerns echo those of the wider disability sector. We found there continues to be significant challenges in the supply of accessible and adaptable homes, which has wide-ranging negative impacts reducing quality of life. Delays in taking forward existing commitments risk further exacerbating these longstanding effects. Government should urgently progress on mandating new accessibility standards and work with local authorities to improve local planning for wheelchair accessible homes. Government should also clarify its full policy position on reviewing the DFG, including the upper limit.

Introduction

4. Muscular dystrophies and neuromuscular conditions cause muscle weakness or wasting. These are generally progressive, multi-system conditions that can lead to lifelong disability. They can impact the way we walk, move and breathe. They make engaging in everyday activities, including around the home, more difficult. Many may then rely on others for support as well as assistive devices like wheelchairs. As a result, people living with muscle wasting and weakening conditions can require complex, long-term and multidisciplinary care to help manage their condition, maintain independence and improve quality of life.

5. The lack of accessible and adaptable housing is problematic for many in our community because of how living in unsuitable accommodation makes our everyday lives so much harder. Suitable accommodation needs to consider the needs of the individual (eg a wheelchair user), the equipment (eg hoist) and any additional support (eg carers). The progressive nature of these conditions means that adaptations may need to be periodically reviewed to ensure they meet changing requirements.

6. Outside the house, for example, a heavy door would make entering the property a challenge for someone with limited use of their muscles. Steps in front of a building may also severely limit accessibility. Lifts are indispensable, so that disabled people are not forced to only live on the ground floor. Inside the house, there needs to be ample turning space and wide door frames. Easily accessible bathrooms, including on the ground floor, are important so that people do not have to rely on makeshift adaptations. Without an easy alternative, parents often have to carry children up and down the house so that individuals are not restricted to always staying in one living space.

7. The lack of accessibility features in one’s accommodation can make the difference between existing or surviving, and living in a house.[1] People living with muscle wasting and weakening conditions can in turn experience a loss of independence, compromised family life (including for those wanting to move out of their parent’s home), worse health and wellbeing, and ultimately a lower quality of life. Later on, we also discuss the financial strains involved in pursuing the necessary adaptations to mitigate some of these negative consequences.

Methodology

8. Addressing the mismatch between supply and demand in the wider housing sector is fundamental to improving disabled people’s – including those from our community – access to suitable housing. Although we include some commentary on this issue, we recognise it is not the primary focus of the inquiry.

9. Instead, we have focused our response specifically on the follow-up to the government’s accessibility standards for new homes consultation (question three in the call for evidence) and the role of the DFG (question five). Our commentary also touches on the role of government and local authorities in ensuring access to accessible housing (questions one and four).

10. We tapped into our community networks to hear about which issues were hindering access to suitable housing and how much of a priority these issues continue to be. We consulted our regional information and support teams, who are in direct contact with our community members. We also heard from our helpline team, who regularly answer requests for support and also provide more in-depth advocacy support.[2]

Discussion

The housing stock is an integral issue in the debate on accessible housing

11. Amidst the wider housing crisis, there is a considerable shortage of accessible housing.[3],[4] In terms of accessibility features, in 2018-19, only 9% of English homes had all four accessibility features required for a visitable home.[5] This should be contrasted with the new accessibility standards set for new homes; M4(1) vs M4(2). In 2019-20, four out of five homes (81%) that required adaptations because of health conditions felt their home was unsuitable. Moreover, 53% of homes did not have all the adaptations they needed, compared to 45% five years earlier.[6]

12. There is also a lack of adaptable housing. We frequently hear that people’s existing properties are too old or structurally cannot be adapted to meet their needs. In some cases, it’s not safe to do so. If there is no accessible accommodation, people may look for a house that could be adapted, which in turn can increase how long it takes before they ultimately live in a home suited to their needs.

13. Our community faces long waiting lists. Already in 2015, our Freedom of Information Requests (FOI) to local authorities revealed a shocking lack of available accessible properties. In some cases, waiting lists stretched into the hundreds with few or no corresponding properties available.[7] In 2022, there were 20,000 people estimated to be on waiting lists for wheelchair homes and 104,000 for an accessible or adaptable home.[8]

14. These issues are consistently raised with our teams and can have huge repercussions on people’s lives. Living in inaccessible housing can pose a risk to care not being safely managed. Long waits can cause emotional distress. Having to look beyond one’s local area to find available and suitable properties can disrupt social ties.

15. In the face of projections for growing numbers of people living in unsuitable accommodation and on waiting lists for social housing, issues around the housing stock should not be excluded from the wider debate.[9] It will not be possible to ensure suitable homes for all disabled people who need them without addressing the wider lack in supply of accessible and adaptable homes.

More needs to be done on the implementation of accessibility standards for new homes

16. The decision to raise minimum accessibility standards for new homes was a significant step forward, but more still needs to be done. Following a consultation on raising accessibility standards for new homes, the government published its response in July 2022.[10] Decisions relating to both M4(2) (Category 2: Accessible and adaptable dwellings) and M4(3) (Category 3: Wheelchair user dwellings) are relevant for our community. For M4(2), the government decided to mandate this as the minimum standard for all new homes, the technical details of which would be subject to a further consultation. For M4(3), the government confirmed the situation would continue as is, where the standard would apply in local planning policies “… in which a need has been identified and evidenced”. The supply of wheelchair accessible homes would also need to continue being tailored to local demand. We broadly welcome the move to mandate the M4(2) standard as minimum. But against the backdrop of a significant lack of accessible housing and the wider housing crisis, we remain concerned about the lagging follow-up on M4(2), as well as the lack of national and local action on M4(3).

17. There are still no clear timelines for when the government will publicly consult on the M4(2) standard, in view of its implementation. A year after the government’s consultation response, there has still been no follow-up consultation on M4(2). Its latest mention is in the new Disability Action Plan 2023-24, but with no further details on when the government will take this forward.[11] We are concerned delays in the implementation of the new standard will further set back the much-needed construction of new accessible and adaptable homes. We urge them to formally commit to a timeline to action their commitment to mandate M4(2) as the new minimum accessibility standard.

18. The aforementioned local process for implementing the M4(3) standard is not working well enough to close the gap in wheelchair accessible housing availability. First, there are still too many local authorities that do not account for the M4(3) standard in local plans. In 2020, Habinteg found 48% of local plans included a policy for a proportion of wheelchair accessible homes to be built.[12] In September 2023, they found that “… of England’s 324 Local Plans, 162 have no target included for such homes.”[13] The issue of a lack of wheelchair accessible housing has been longstanding, so we echo here calls from our 2015 housing report and 2022 accessibility standards consultation response, on having set percentages for the proportion of new M4(3) housing.[14] Specifically, we endorse Habinteg’s calls for the government to “revise the National Planning Policy Framework to explicitly require all local plans to include a specific policy and target for new wheelchair accessible (M4(3) homes, and where no local target is set to require 10% of new homes to meet the standard.”[15]

19. Second, there is a widespread lack of data about the local availability of accessible housing. For our 2015 housing report, responses to our FOI requests revealed a number of local authorities had no disabled housing register and some had no way of recording what accessible properties they had available.[16] Following FOI requests of their own, Habinteg found in 2022 that more than half of local authorities could not supply data on demand for accessible housing.[17] Without up to date information on the availability of accessible housing, it is difficult to accept that local authorities have the required data to appropriately plan for the needs of their populations. Without appropriate planning, it is unlikely that local authorities could effectively tailor the supply of accessible housing to meet local demand, as per the government’s position in response to the accessibility standards consultation. Therefore, in line with wider sector calls, eg from the Housing Made for Everyone (HoME) coalition, we urge the government and local authorities to improve data collection on accessible (and wheelchair accessible) housing, including via the use of dedicated registers/databases. This would help to more easily match people with the right homes, as well as improve and expand the implementation of the M4(3) standard.[18]

The government should not drop its commitments to improve the Disabled Facilities Grant

20. We support the role that the DFG plays in helping people living with muscle wasting and weakening conditions to fund adaptations to live in suitable accommodation. To that end, we welcome the increased investment in the DFG over the past decade and the overall rise in the number of DFGs being allocated.[19]

21. However, there are several areas in which we find the DFG lacking in being able to fully support housing adaptations and those who need them. The concerns we heard from our community include those around the process being very lengthy, lacking transparency and varying significantly between localities. There are also issues around assessors and their ability to fully capture the needs of people living with muscle wasting and weakening conditions.

22. These categories of issues will have largely been recorded in the government-commissioned independent review of the DFG, published in 2018.[20] While there is some suggestion that the government is still considering the findings of the report, the government’s 2021 white paper on adult social care reform outlined the steps it would take on the DFG in light of the review.[21] The white paper committed the government to publicly consult in 2022 on three areas of the DFG: increasing the upper limit, looking at how funding is allocated to local authorities to ensure better alignment with local demand and considering changes to means-testing. While we urge the government to clarify its full response to the 2018 review, the remit of this submission is not to re-run through all the issues captured in the independent review. Instead, we will focus on the upper limit, £30,000, which is often insufficient to fully meet the needs of people living with muscle wasting or weakening conditions.

23. There is insufficient official data on the DFG to fully capture the level of demand for grants nearing, reaching and exceeding the limit. Foundations, the National Body for Disabled Facilities Grant and Home Improvement Agencies in England, analyses annual local authority DFG returns data.[22] Their analysis shows that over the past decade (2009/10 – 2021/22), the proportion of grants exceeding £15,000 has stayed approximately the same, at around nine percent. It also shows how the average number of completed grants costing £30,000 or more per local authority has almost halved, from 7 in 2009/10 to 3.8 in 2021/22. But, it should be noted that the information submitted by local authorities is voluntary and unaudited.[23] The government also does not hold data on applications submitted for amounts between £25,000-£29,999.[24] As a result, the available data and analysis presents a partial and unverified assessment of the reality.

24. This is in stark contrast to reports we often hear from our community members, that the amount granted is not enough to meet their needs, where the outstanding funding requirements can sometimes stretch into tens of thousands of pounds. This aligns with the broader picture about funding for adaptations. In 2019/20, of the households that needed adaptations but did not have them, 18% said it was because they thought it would cost more than they could afford (the second leading reason why). But only 8% said adaptations were lacking because they were not worth doing, meaning many households still need the adaptations.[25]

25. In our experience, if the DFG is insufficient, families only have a few options available to them. Some may rely on personal funds (in some cases using up their life savings), some may crowdfund (although not everyone likes to present themselves in that way), some may look to other grant funders (though, of the ones we are familiar with, those additional grants may not cover much and may be means-tested) and some may even resort to the press or their MP after exhausting all other options.

26. The government recognises that DFG maximum grants may not always be enough and points to the option of discretionary local payments. But from what we hear, these can be hard to get. It is also unclear how many people are even aware of this option. Top ups can depend on local authority budgets, which have faced considerable financial strains of their own in recent years. Indeed, according to Care England, “… as many as one in ten local authorities have already served, are looking to serve, or have taken urgent action to mitigate serving Section 114 notices…”[26]

27. Funding these vital adaptations from outside the DFG can place families into serious financial hardship. Our 2015 report into accessible housing, for which we extensively surveyed people living with muscle wasting or weakening conditions, found over a third of people faced debt and serious financial hardship trying to fund these adaptations.[27] These strains are made even more severe by today’s cost-of-living crisis, which disproportionately affects disabled people by virtue of the additional costs associated with being disabled, such as the cost of ongoing housing adaptations for those living with progressive conditions.[28] To mitigate families falling into financial hardship and better support housing adaptations, we strongly welcome the government agreeing to increase the upper limit. We would at a minimum endorse the 2018 review’s recommendation that “the maximum amount of the DFG is raised in line with inflation, with a regional weighting based on building costs and an amount for professional fees.”[29]

28. It is unclear whether a public consultation on the upper limit will still happen. Although the government was due to consult on this matter in 2022, there has been no such consultation to date. In response to a parliamentary question on this delay earlier this year, the government said that “as with all aspects of the Disabled Facilities Grant, Government will continue to keep the upper limit under review.”[30] This consultation was not included in the government’s 2023 policy paper, serving as a follow-up to the 2021 white paper on social care.[31] Aside from top up DFG funding, none of the three DFG consultations from 2021 were mentioned in this 2023 paper. The government was separately asked why another 2021 white paper proposal was similarly not included in the follow-up document. They confirmed not wanting to proceed with some white paper proposals right now, having “… rightly considered how best to target resources where they are most needed to ensure value for money for taxpayers…”[32] We therefore urge the government to clarify whether it is still government policy to publicly consult on a review of the DFG upper limit. By extension, we urge them to clarify whether they still plan to consult on the other two areas of the DFG committed to in 2021.

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