Written evidence submitted by The Challenging Behaviour Foundation [DPH 029]

Housing for people with a (severe) learning disability

People with a learning disability need housing that can meet their needs. Everyone with a learning disability will have different levels of need – ranging from needing ‘mainstream’ housing with minor adaptations, to needing a fully bespoke building designed with them in mind. The Government needs to ensure that local authorities, housing associations, and any other relevant bodies have the knowledge, the funding, and the flexibility to put in place housing solutions that can meet the needs of their local learning disability population.

For people with severe learning disabilities and complex needs, including behaviours that challenge, housing needs to be robust, bespoke, and person-centred if it is to meet their needs. We frequently hear from families that we support that their relatives have been admitted to inpatient units, not because they have a mental health condition that needs treatment, but because there is not suitable housing available within the community, which in turn leads to or exacerbates behaviours that challenge; this is supported by a range of research and policy[1]. A lack of suitable housing options within the community is also the most common reason for delaying the discharge of people with a learning disability and autistic people back into the community[2], and if housing is not got right, people with a learning disability can enter a cycle of readmission[3]. With the upcoming change in the law to stop people with a learning disability and autistic people from being sectioned under the Mental Health Act if they do not have a co-occurring mental health condition that needs treating, it is crucial that the right community support, including the right housing, is put in place.

Ensuring that people with a learning disability can access accessible and adaptable housing

People with a learning disability need housing that can meet their needs. Everyone with a learning disability will have different levels of need, ranging from needing ‘mainstream’ housing with minor adaptations to needing a fully bespoke building designed with them in mind. People with a learning disability, in particular those with severe/profound and multiple learning disabilities and complex needs such as behaviours that challenge, also need there to be suitable alternative accommodation within the community so that in cases of emergency, they are able to go somewhere that can meet their needs on a temporary basis and avoid inappropriate admissions to hospitals. The Government needs to ensure that local authorities, housing associations, and any other relevant bodies have the funding, the flexibility, and the knowledge to put in place housing solutions that can meet the needs of their local learning disability population.

We frequently hear from both families that we support and from members of the Housing Group that a major barrier to getting housing right for people with a severe learning disability and complex needs is that it is overly difficult to access adequate funding to commission and build bespoke housing. This has also been reflected in research, for example the recent joint report by the Learning Disability and Autism Housing Network and Housing LIN.[4] Due to these difficulties accessing funding for bespoke housing, people with a learning disability with behaviours that challenge are frequently limited in their housing options; we are aware of a large number of people who have, or are likely to be, discharged from inpatient settings into housing that did not/will not meet their needs. This includes people who need to live alone being discharged into shared housing; people with sensory needs being found housing that does not meet these; and properties not being robust enough to withstand behaviours that challenge. This in turn significantly increases the likelihood that placements will break down and that the person will be readmitted to an inpatient unit.

We also are aware that local authorities and integrated care boards do not always have a clear understanding of how many people with a learning disability are likely to require housing either currently or in the future, or of what their needs are.[5] This makes it difficult for them to develop a housing strategy that will provide enough homes, including bespoke housing and alternative/respite accommodation (which may be known as ‘safe spaces’ or ‘crash pads’[6]), for people with a learning disability. Local authorities and integrated care boards should have key roles in ensuring that people with a learning disability within their area are able to access accessible and adaptable housing that meets their needs, but the lack of comprehensive data that they have on their local population is limiting their ability to do this. Likewise, there is a lack of integration between local authorities/integrated care boards and housing partners which means that housing is not planned in advance, but is frequently dependent on short-notice decisions, e.g., if an individual experiences crisis. One action that local authorities should take to improve this is involving housing partners as part of the ‘transition to adulthood’ process for young people with an Education, Health and Care Plan (which statutory guidance says should begin at age 14).

It is particularly crucial that local authorities and integrated care boards are aware of the number of people with a learning disability within their area who currently live with family carers, in particular parents, and that they use this information to plan for the future, for example as parent carers grow older and/or pass away. We are aware that this information is not commonly held by local authorities, which can mean that plans are not in place and that action is only taken once family carers are no longer able to care (e.g., due to illness, old age, infirmity or death) - this is despite the fact that this issue has been raised multiple times over the last few decades, including in Mencap’s 2002 report ‘The Housing Timebomb’.[7] This in turn can lead to people with a learning disability ending up in unsuitable housing situations, including being inappropriately admitted to residential or inpatient care.[8] Action should therefore be taken to increase awareness of housing needs for this population at the local and regional level, and to ensure that this is acted upon to either adapt or build housing that meets these needs. This may involve Government introducing specific legislation requiring this to happen and setting out what needs to be done, with clear accountability and oversight procedures including routes to challenge if action is not taken or responsibilities are not met.

Meaningfully involving people with a learning disability and their loved ones in discussions about housing increases the likelihood that housing will be right for the individual and reduces the likelihood that placements will break down.[9] This is generally included in good practice guidance, but we are aware that this frequently does not take place. Introducing statutory guidance setting out that people with a learning disability and their families should be meaningfully involved in housing decisions, including having direct design input in cases where a bespoke housing solution is needed, will enable people with a learning disability to access housing that meets their needs and reduce the likelihood of future issues.

The Government can make it easier for people with a learning disability to access accessible and adaptable housing by:

1. Ensuring that a) local authorities and b) housing associations are able to access flexible funding that enables them to build bespoke housing for people with a learning disability who have complex needs

       We have been told by housing organisations that the conditions around existing sources of funding, such as the Affordable Homes Programme, do not enable them to utilise these to build enough bespoke homes for people with a learning disability to meet local and national demand

       Consequently, the Government needs to review these policies and either make changes to them or replace them with sources of funding that are accessible and flexible

2. Increase awareness of what adaptations can be put in place for people with a learning disability, in particular for people with a severe learning disability and complex needs including challenging behaviours
3. Increase awareness of the rights of people with a learning disability to access the Disabled Facilities Grant
4. Ensure that a) local authorities and b) integrated care boards are aware of how many people with a learning disability there are within their area and what their current and future housing needs are, and require them to have comprehensive plans for developing housing to meet these needs

Improving access to the Disabled Facilities Grant for people with a learning disability

People with a learning disability, including those who are also autistic, are entitled to access the Disabled Facilities Grant to adapt their houses; this also applies when families seek to access the DFG to make adaptations that will support their relatives, including young children. However, despite these entitlements, people with a learning disability do not have equal access to the DFG – 89% of adaptations funded through the DFG are to meet the needs of people with a physical disability.[10] The DFG does not, therefore, fully support housing adaptations.

People with a learning disability struggle to have their needs for adaptations met through the Disabled Facilities Grant for three main reasons. Firstly, people with a learning disability who do not also have a physical disability and their families are not always aware of[11] or told that they are eligible for the Disabled Facilities Grant; because there is a perception that the DFG is there to support people with a physical disability and older people, for example to make houses wheelchair accessible or to install stair lifts, people who do not have a physical disability may not realise that they are also entitled to have their needs met. There is also a lack of awareness of this entitlement among local authorities and those who are responsible for assessing and approving DFG applications, for example occupational therapists; evidence from the EHRC shows that these groups are not always aware of what needs people with a learning disability have, or that they are entitled to adaptations to meet these needs via the DFG.[12] Finally, even for those who are aware that people with a learning disability are entitled to access the Disabled Facilities Grant, there is often a lack of awareness of what adaptations are possible, particularly for people whose behaviour challenges. A 2022 roundtable event hosted by Foundations found that there was a lack of guidance for people who carry out or commission assessment services and that there were significant difficulties finding good quality information on what adaptations can be made to support being with a learning disability whose behaviour challenges[13] – despite there being resources in existence.

There are a range of adaptations that can make housing more suitable for people with a learning disability, including for people with behaviours that challenge.[14] These adaptations can prevent damage to the house, including damage that would make the house structurally unsafe/unliveable[15]; prevent harm to them or their families, for example where an additional room is needed so that a young person with a learning disability whose behaviour could result in themselves or others being harmed could have their own room, rather than sharing with a sibling, or where a person with pica[16] needs adaptations around the house to prevent them from ingesting materials that could be harmful or fatal; and can provide an environment that reduces, rather than exacerbates, behaviours that challenge and the risks to someone’s own and others’ safety that can accompany these behaviours. They therefore meet the criteria for adaptations under the DFG, increase quality of life, and reduce both the likelihood of someone with a learning disability being admitted to an inpatient unit (or, in the cases of both children and adults, into care[17]) and barriers to discharging them back into the community (a lack of appropriate housing is the most common reason for delayed discharge[18]).

Making information about what adaptations are possible for people with a learning disability more widely available would help to ensure that housing adaptations for this group are more accessible – this recommendation was also made in the 2018 Independent Review of the Disabled Facilities Grant.[19] In particular, there should be information, guidance, and best practice examples made available to those within a local authority, such as commissioners or occupational therapists, who have responsibility for these decisions. A list of resources which could be used in this can be found in the footnotes.[20]

Adapting housing for people with a learning disability as they age

People with a learning disability are living longer than before, and so are increasingly likely to need adaptations to help them as they age. In particular, people with a learning disability are more likely to develop dementia, and to develop it at a younger age than people without a learning disability.[21] They are also likely to develop mobility issues. In this respect they, like the rest of the population, are likely to need adaptations to enable them to continue living in their homes – however, for people with a (severe) learning disability, this is made more crucial as if their housing situation is not right, this can cause or exacerbate behaviours that challenge, which in turn increases the likelihood that they will be inappropriately detained in inpatient settings. If housing is being designed for people with a learning disability, in particular if bespoke housing is being built to meet the needs of someone with a severe learning disability and complex needs, it is important to consider whether the house will be adaptable in future. Issuing guidance and good practice examples around this will be beneficial to both housing providers and local authorities. We believe that this is an important action that the Government can take to improve access to adaptable housing for people with a learning disability.

September 2023