This month we meet the winners from the National Healthy Housing Awards.
Adaptations for Children and Young People With Behaviours of Concern
We have taken information from a report we published on the topic in 2021. This report sets out to share the benefits that adaptations can bring to families. Foundations wants to see recognition of the role of using RRO flexibilities for children with complex needs and the cost-benefit of large adaptations compared to the alternative – particularly in the wider system.
Everyone wants to be able to live safely, independently and well in a place they call home. However, for some people, their home needs to be adapted to enable these aspirations to be met. Each local housing authority has a budget to help meet the cost of such adaptations.
This guide has been developed by Foundations, the national body for Home Improvement Agencies (HIAs), to provide advice and information for local authorities and Home Improvement Agencies dealing with requests for adaptations for people with behaviours which challenge by providing advice and guidance for staff carrying assessments and for staff determining applications for funding. It will also be useful for occupational therapists and staff in other agencies working with children and young people with behaviours that challenge whose homes may need to be adapted as well as their families and carers.
The aims of this Guide are:
- To provide some background and context to behaviours that challenge;
- To outline the rules and regulations relating to Disabled Facilities Grants (DFG) and discretionary housing assistance policies;
- To provide advice on how the funding can be used;
- To include case studies and examples of good practice in order to support the effective use of the DFG and discretionary housing assistance policies so that children and young people with behaviours that challenge are able to continue to live at home where that is in their best interests and the interests of their family.
Note: Although the focus of this guide is on adaptations which might be needed for someone living with their family, it will also be relevant to people with autism and/or learning disabilities who are living in their own homes (for example, in a supported living scheme or living independently with care and support provided). It should be noted that where an adaptation involves some degree of restriction of a person’s independent movement, there may need to be a consideration for the Deprivation of Liberty Safeguards (DoLs) and a necessary consideration in the person’s best interest.
Note: It has been announced that DoLs will be replaced by Liberty Protection Safeguards in April 2022.
Note: We will also be publishing a best-practice approach to the adaptation process. This guide will look at the assessment, recommendations, design and installation elements of the process, and we’ve been able to do this piece of work thanks to the support of Safespaces. Read more about the project here.
The definition of disability with regard to eligibility to apply for a Disabled Facilities Grant is drawn widely and clearly and encompasses people with autism and/or learning disabilities. However, the vast majority (89%) of adaptations funded through a DFG are to meet the needs of people with a physical disability.
Many families of children and young people with autism and or/learning disabilities face significant difficulties in continuing to provide care and support to enable their family members to continue to live in the family home, particularly when the child or young person has behaviours that challenge them. This may be because for a person with autism and/or with severe learning disabilities, living in a world designed for neurotypical people can be difficult and may cause them distress or anxiety because their underlying sensory needs are not being addressed.
Understanding the reason for the behaviours and how to create a safe sensory environment is key to responding to the needs of the individual and providing effective support. Research has highlighted the importance of an appropriate and safe environment at home for children with autism and their families. Whilst many people with autism and or/learning disabilities can live with their families independently or with support, some people, their families, and their caregivers may face profound challenges due to an inadequate or inappropriate home environment.
Disabled Facilities Grant funding can make a substantial difference in such circumstances. Funding can be used where the criteria for mandatory disabled facilities are met. This may include adaptations designed to minimise the risk of danger where a disabled person has behavioural problems which causes them to act in a boisterous or violent manner damaging the house, themselves and perhaps other people. Other adaptations specifically mentioned in the DFG guidance include ‘the provision of shatterproof glass…..or the installation of guards around certain facilities such as fires or radiators…..as may be cladding of exposed surfaces and corners to prevent self-injury’.
Local authorities also have substantial discretion under the Regulatory Reform Order (RRO) to fund additional works which fall outside the mandatory purposes for which a statutory DFG can be given.
Discretionary assistance can also be provided to meet the cost of works which exceed the current maximum DFG of £30,000. As the Guide notes, although in some situations the cost of necessary adaptations can be significantly above this limit, research by the School of Law at Leeds University and the children’s neurological charity Cerebra has shown that the financial benefits for the wider health and social care system are substantial and can avoid the considerable cumulative costs of providing residential care where the person’s parents can no longer provide care in the family.
The Guide shows that effective and creative use of DFG budgets can make a significant impact on the lives of people with autism and/or learning disabilities as well as on the lives of their families and carers. Such an approach can also make sense financially. By helping to avoid unnecessary admissions to residential care, appropriate use of DFG budgets not only delivers better outcomes for people with autism and or/learning disabilities and their families but can do so whilst at the same time delivering better value for money for local authorities.
- Behaviours that challenge have a specific purpose or function, and it is important to focus on the underlying reasons rather than the behaviours themselves. Understanding the reason for the behaviours and how to create a safe sensory environment is key to responding to the needs of the individual and providing effective support.
- Multi-disciplinary/multi-agency assessment and intervention planning is essential to ensure that the needs and rights of children and young people with autism/and or learning disabilities are fully understood and that any adaptations to their home are appropriate and proportionate to meet their needs (and in particular their sensory needs).
- The purposes for which a mandatory DFG can be given cover a wide range of situations which may help to create a better environment for someone with autism and/or learning disabilities, in particular, to make the environment safe for the person and those people who live with them.
- Flexible and creative use of the powers under the Regulatory Reform Order (RRO) can enable local authorities to develop specific discretionary grants to meet the needs of children and young people with autism and/or learning disabilties.
- It is essential to see DFG funding as part of an integrated approach to meeting the needs of children or young people with autism and/or learning disabilities. Although in some cases the cost of adaptations can be significant, by helping to avoid unnecessary admissions to residential care, appropriate use of DFG budgets not only delivers better outcomes for people with autism and/or learning disabilties and their families but can do so whilst at the same time delivering savings for health and social care budgets.
With thanks to all those who have provided comments and suggestions during the writing of this Guide including colleagues in the Ministry of Housing, Communities and Local Government, the Royal College of Occupational Therapists (including members of the Royal College of Occupational Therapists Specialist Section – Housing) and members of the Access Committee for Leeds.
Paul Smith. Director, Foundations
“Physical accessibility issues are easily understood in a way that autism-related needs are not.” (Mother of a 22-year-old with autistic spectrum disorder quotes in Making Homes That Work).
“We’ve seen that very little of the Disabled Facilities Grant budget goes towards autism and behaviours that challenge – we wanted to shine a light and show what is possible.”
Behaviours That Challenge
One of the most widely used definitions of the term ‘behaviours that challenge’ is that of Emerson who defines it as ‘culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to seriously limit the use of, or result in the person being denied access to, ordinary community facilities. The term ‘behaviours that challenge’ describes the behaviour as challenging to services, rather than the problem being with the person (“this person presents us with a challenge in how to support them” as opposed to “this person is being very difficult”). This encourages carers and professionals to find effective ways of understanding a person’s behaviour and its underlying causes.
It should be noted that because such behaviour arises from a response to the world around them, rather than being intrinsic to either autism and/or learning disabilities, the alternative ‘distressed behaviour’ is also sometimes used to describe such responses.
For people with autism and or/with learning disabilties, living in a world designed for neurotypical people can be difficult and may cause them distress or anxiety because their underlying sensory needs are not being addressed. It is these sensory issues which may sometimes result in people with autism and or/people with learning disabilties displaying behaviour which may challenge people who live with them or services which support them.
Behaviours that challenge have a specific purpose or function, and it is important to focus on the underlying reasons rather than the behaviours themselves Understanding the reason for the behaviours and how to create a safe sensory environment is key to responding to the needs of the individual and providing effective support.
In many cases, the behaviour provides a way for a person to control what is going on around them and to get their needs met. It may also be to block out pain or to communicate high levels of distress.
The nature of the home environment can have an adverse impact on people with behaviours that challenge them. Research has highlighted the importance of an appropriate and safe environment at home for children with autism and their families. An inadequate environment which doesn’t provide this can directly influence the decision to place someone with autism and/or with learning disabilties in a care setting. As George Braddock or Creative Housing Solutions noted, ‘you cannot fix a problem behaviour in a broken environment’.
Ensuring that the needs and rights of children and young people with autism or learning disabilities are fully understood and that any adaptations to their home are appropriate and proportionate to meet their needs (and in particular their sensory needs), usually requires multi-disciplinary/multi-agency assessment and intervention planning. Moreover, early intervention is paramount to ensure the environment is adapted before the child/young person or their family members are at significant risk of harm.
Autistic Spectrum Disorders
Autism is a spectrum condition. All people with autistic spectrum disorders (ASD) share certain difficulties but being autistic will affect them in different ways. People often struggle with sensory processing and integrating sensations, the neurological process of interpreting and managing the sensory input they receive, and it can be hard to make sense of sights, sounds, smells, tactile and other sensory information.
For some individuals with ASD sensory input can be completely overwhelming. They can have difficulties dealing with noisy environments. This is often described as ‘sensory sensitivity’ or ‘sensory avoiding’ and refers to those people with ASD who are prone to sensory overload which can result in confusion, anxiety, and withdrawal. For others, sensory input is hardly felt, leading them to crave additional input. ‘Sensory seeking’ refers to those people with autism who crave additional sensory input. This might involve sensory-seeking behaviours such as head banging against hard surfaces.
Whilst many people with ASD can live with their families independently or with support, some people, their families, and their caregivers may face profound challenges due to an inadequate or inappropriate home environment.
The term ‘learning disability’ refers to a range of disabilities including mild, moderate, severe, and profound/multiple learning disabilities, and as with autistic spectrum disorders, learning disability affects people in different ways. People with mild or moderate learning disabilities can often lead independent lives with low levels of support. However, someone who has a severe or profound/multiple learning disability may:
- Have little or no speech;
- Find it very difficult to learn new skills;
- Need support with daily activities such as dressing, washing, eating, and keeping safe;
- Have difficulties with social skills;
- Need life-long support;
- May also have physical disabilities.
It is harder for children with learning disabilities to develop the communication and social skills which other children use to get what they need or want.
This may mean that they present with behaviours that may challenge others and they are unlikely to “grow out” of those behaviours on their own and will need skilled support in order that their needs can be met in a different way.
Pica is a medical term which refers to the persistent eating of non-nutritive, or non-food, items. Cases of pica are reported in many different groups including in people with learning disabilities and/or who have autism, although pica is itself a separate diagnostic condition. Pica is reported to be often more severe in autistic people or people with a learning disability. Pica can be compulsive, and very dangerous and preventing it can also be difficult.
The Autism Act
The 2009 Autism Act places a duty on the government to produce and regularly review an autism strategy, with an associated duty to provide statutory guidance to local authorities to implement the autism strategy locally. The first autism strategy, ‘Fulfilling and Rewarding Lives’, was published in 2010 and a new strategy ‘Think Autism’, was published in 2014.
In 2018, the government announced that the autism strategy was to be extended to include children. Statutory guidance published in 2015 stated that ‘people should live in their own homes with support to live independently if that is the right model for them’. (Section 7.3.).
The Think Autism governance refresh published in 2018 grouped the existing nineteen strategic objectives into five domains. Domain 5, ‘Participation in Local Communities’ includes ‘access to an appropriate range of accommodation options’, which for many young people with autism will mean continuing to live in the family home. NICE guideline NG93 published in 2018 recommends support in the community for children and young people with behaviours that challenge as an alternative to residential placements away from home and to reduce the potential need for such placements.
Behaviours might include:
- Causing self-harm or self-injury (e.g., head banging, eye poking, hand biting).
- Causing harm to others (e.g., hair pulling, hitting, head-butting).
- Destructive behaviours (e.g., throwing things, breaking furniture, tearing things up, damaging the home).
- Eating inedible objects (e.g., pen lids, bedding).
- Flight behaviours (e.g., absconding, climbing, hiding, withdrawal).
- Distress behaviours (e.g., screaming, stripping, urinating, defecating, vomiting, spitting, repetitive behaviours).
It should be noted that there is no definitive list because it is any behaviour that is challenging to those around the person, or that has a negative impact for the person.
Common causes of behaviours that challenge include:
- Pain or health reasons: a reaction to something that hurts e.g., banging head on the wall may be expressing that the person has an earache.
- Social attention: everyone needs attention and behaviours that challenge may be a good way of getting other people’s attention, even if it is negative, e.g., being told off.
- To get something: a child may learn behaviours that get them things they want, e.g., food, objects etc.
- Escape: a child may seek to avoid things that they do not like e.g., seeing the dentist.
- Sensory: sometimes people enjoy the feeling that certain behaviours give them, i.e., rocking, humming, etc.
- A response to perceptions of sensory overload or sensory deprivation.
This Guide is based on the mandatory framework for Disabled Facilities Grants set down in the Housing, Grants, Construction and Regeneration Act 1996 as subsequently amended through relevant Orders and General Consents. It also includes details of the Regulatory Reform Order 2022 which can be used to enhance the provisions of the HGCRA 1996. Reference is also made to other legislation such as the Autism Act 2009. It has also drawn extensively on existing reports and studies all of which are referenced throughout the Guide.
Case studies from practitioners and organisations working with people with autism and/or learning disabilties and their families have been used to demonstrate how the legislation can be used to enable the funding of adaptations for people with behaviours that challenge. Additional design guidance is based on advice from the Foundation for Challenging Behaviour and is drawn from Foundation’s website. The cost benefits of adaptations for people with behaviours that challenge are based on a research report published by the School of Law at Leeds University and the children’s neurological charity Cerebra.
This Guide has benefitted from comments and suggestions from families with a direct interest in adaptations for people with behaviours that challenge, and from professionals and organisations working with people with autism and/or learning disabilities and delivering adaptations to meet their needs.
Making Homes That Work – A Resource Guide for Families Living with Autism Spectrum Disorder + Co-occurring Behaviours – George Braddock, Creative Housing Solutoons LLC & John Rowell, Rowell Brokaw Architects, PC 2011
Managing Behaviour that Challenges and Creating Safe Environments – Heather Scott & Anne Eddison, Presentation to the RCOT Specialist Housing Section, February 2016
Adaptations for Children and Young People With Behaviours That Challenge Case Study 1: Creating A Safer Environment
Adaptations for Children and Young People With Behaviours That Challenge Case Study 2: Provision of Additional Bathroom/Toilet Facilities
Adaptations for Children and Young People With Behaviours That Challenge Case Study 3: Adapting a Bathroom
Adaptations for Children and Young People With Behaviours That Challenge Case Study 4: Multiple DFGs for the Same Household
Adaptations for Children and Young People With Behaviours That Challenge Case Study 5: Provision of a Sensory Room
DFG Legislations and Guidance
Local housing authorities have a statutory duty to provide a Disabled Facilities Grant (DFG) to disabled people to help meet the cost of a range of adaptations to their homes. The legislative framework for Disabled Facilities Grants is set down in the Housing, Grants, Construction and Regeneration Act (HGCRA) 1996.
The purposes for which a DFG must be approved, subject to the eligibility of the applicant and the test of resources, are defined in Section 23 of the HGCRA as amended. The basic legislation has been further expanded in a number of Orders and Consents.
Funding to meet the cost of DFGs is allocated by the Ministry of Housing, Communities and Local Government (MHCLG) according to a national formula. It should be noted that whilst the legislation applies to adaptations in any tenure, the cost of adaptations to the homes of council tenants is met from the local housing authority’s Housing Revenue Account and not from the DFG budget provided by MHCLG. Detailed guidance about how the Act should be applied was published by the Home Adaptations Consortium (HAC) in 2013 and revised in 2015.
The HAC Guide
The HAC Guide described the key principles underpinning the DFG legislation and states that ‘the focus is on identifying and implementing an individualised solution to enable a person living within a disabling home environment to use their home more effectively rather than on the physical adaptions itself’.
The [social model of disability] recognises that whilst people have physical, sensory, learning ability and psychological differences, these do not have to result in disability unless society fails to take account of these, and makes the necessary adjustments to ensure the inclusion of the individual regardless of those difficulties’ (Section 1.6).
This is further elaborated in Section 1.8: ‘The starting point, and continuing focus, of those seeking to provide a high-quality adaptations service, will be the experience of the disabled person and their carers…The appropriateness and acceptability of the adaptation outcome should be measured by the extent to which it meets the needs identified by that disabled person sensitively, efficiently, and cost-effectively.
Definition of ‘Disabled’
The definition of disabled for the purposes of a DFG is included in Section 100 (1) of the HGCRA and states that a person is disabled if:
- Their sight, hearing, or speech is substantially impaired;
- They have a mental disorder or impairment of any kind;
- They are physically substantially disabled by illness, injury, impairment present since birth, or otherwise.
The HAC Guide contains further guidance about the definition of disabled and refers to the definition in the Equality Act 2010 which states that a ‘person has a disability for the purposes of this Act if they have a physical or mental impairment [specifically referencing people with autism in section 7.47/8] which has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities’.
DFGs and Young People With Behaviours That Challenge
The Disabled Facilities Grant Review carried out in 2018 noted that the number of grants going to young people under the age of 20 is relatively small. Over the last 10 years, the percentage of grants for this age group has ranged between 6.6% and 8.5%. Whilst these trends reflect broader levels of disability in the UK, it is likely that within this age group, the focus is predominantly on young people with physical disabilties since, as was also noted in the Review, the majority of DFGs (89%) have been awarded to people with physical disabilities.
The only information about the nature of impairments comes from a Freedom of Information request in 2017. It is simply a snapshot in time and does not provide much detail. It shows that most grant recipients were identified as having a physical disability as their primary impairment and only 11% were recorded as having another principal impairment. Of that ‘other’ group, dementia, sensory impairment, and learning disability were the main issues identified. The number of grant recipients who had multiple conditions and mental health conditions was not recorded.
As the DFG Review notes ‘the DFG was originally devised to solve physical impairment problems. There needs to be better guidance about the use of the DFG for mental health issues. Better guidance is also needed for children’s cases, which are increasingly likely to be about learning disability, autism spectrum disorders or behavioural issues’ (p53).
Whilst the number of adaptations for children and young people with behaviours that challenge is still relatively small, anecdotal evidence from occupational therapists indicates that the number of such referrals is growing. Such cases are also likely to be complex and the needs of the young people will change and develop over time. Teenage years and the transition to adulthood may present additional challenges.
What Work Can Be Funded With a Mandatory DFG?
A mandatory DFG must be awarded (subject to a test of resources, which does not apply to applications for children and young people aged 19 or under who are in ‘ordinary, non-advanced, full-time education’) for any ‘relevant works’ which meet one of the purposes laid down in the HGCRA (Section 23) and which are deemed both ‘necessary and appropriate and ‘reasonable and practicable to carry out’.
The list of relevant purposes for which a DFG must be considered is included in Appendix B. Although typically these have focused on meeting the needs of people with physical disabilities, many of the purposes will also be relevant for people with behaviours which challenge. This may be particularly the case for adaptations which are identified that meet the purpose described in Section 23 (1)(b) of ‘making the dwelling…safe for the disabled occupant and other persons residing with them]”. For example, the provision of an additional bedroom where a sibling may be at risk from the behaviour of another sibling with behaviours which challenge may be considered necessary and appropriate and therefore eligible for DFG funding. A legal case involving Calderdale Council helped to clarify the relevance of Section 23(1)(b) in such circumstances when on appeal the court found that ‘the purpose of providing a separate bedroom for D was to make the dwelling as safe as was reasonably practicable’ was a ‘relevant purpose’.
It should also be noted that the HGCRA Section 23(30) states that ‘if in the opinion of the local housing authority the relevant works are more or less extensive than is necessary to achieve any of the purposes set out in subsection (1) they may, with the consent of the applicant, treat the application as varied so that the relevant works are limited to or, as the case may be, include such works as seem to the authority to be necessary for that purpose’.
It is the responsibility of the Housing Authority to decide if the relevant works are ‘necessary and appropriate’ to meet the needs of the disabled occupant. However, the HGCRA states that ‘a local housing authority which is not itself a social service authority which is not itself a social services authority shall consult the social services authority’, S23 (3) to determine what works meet this criterion.
The Housing Authority must also confirm that it is ‘reasonable and practicable’ to carry out the relevant works. As is described in the assessment framework in the Royal College of Occupational Therapists’ publication ‘Adaptations Without Delay’, adaptations for young people with complex needs are likely to require specialist intervention with the support of a professional occupational therapist to identify the appropriate solution(s).
The HAC Guide states that when carrying out assessments for people with learning disabilities or people with ASD that ‘assessors and staff developing specifications should…rely upon the advice of specialist colleagues’ (Section 7.42 and 7.48) and should also involve the person needing the adaptation and their family and carers in the assessment discussions and the decision-making process (Section 7.47).
Assessments for adaptations for a young person with behaviours that challenge should be holistic and involve multi-disciplinary professional input in addition to contributions from the young person wherever possible and those who know the young person best.
Although the needs of a child may change as they grow early intervention is paramount to ensure the environment is adapted before the child/young person or their family members are at significant risk of harm, and there is no minimum age below which an adaptation cannot be considered.
NICE Guideline NG 11 notes that when assessing the need for adaptations the assessment will consider the person, their environment, and the interaction between the two. The occupational therapist’s assessment should include a broad consideration of all the options, working with the family to explore these in full. This may mean, for example, considering ways to make the home generally more accessible and safer in order to allow a young person to move around and explore safely rather than restricting adaptations to one area. Where a specialist sensory assessment is required it may be possible to fund this from the DFG so long as the assessment is being carried out by an occupational therapist with the necessary experience. Any DFG funding for such fees would not however be paid until after a DFG application has been approved.
An assessment of what work is both necessary and appropriate should also consider the needs of parents and any siblings living at home, as behaviours that challenge can have a significant impact on the ability of the whole family to continue to support a family member with behaviours that challenge.
This may be particularly relevant with regard to adapatations which support someone with disruptive sleep patterns as this can and frequently does affect the whole family. As the HAC Guide notes, ‘assessment of disabled children should take into account the developmental needs of the child, the needs of their parents as carers and the needs of other children in the family’ (Section 7.18).
Further advice about relevant works which may be eligible for DFG funding is provided in the HAC Guide Annexe C.
This includes ‘adaptations designed to minimise the risk of danger where a disabled person has behavioural problems which cause them to act in a boisterous or violent manner damaging the house, themselves and perhaps other people. Where such a need has been identified, the DFG is available to carry out appropriate adaptations to eliminate or minimise that risk’ (Annexe C, Section 19). Other adaptations specifically mentioned include ‘the provision of specialised lighting…toughened or shatterproof glass…or the installation of guards around certain facilities such as fires or radiators…as many be cladding of exposed surfaces and corners to prevent self-injury’ (Annexe C, Section 21).
It should be noted that where an adaptation involves some degree of restriction of a person’s independent movement there may need to be consideration of the person’s best interest. This could be relevant where, for example, a young person is prone to climbing out of windows and it is proposed to change window (or door) locking mechanisms to ensure their safety. In such cases, there may be a need to consider the balance of risks of the adaptations being carried out or not.
It should be noted that where the person concerned is 16 or over and lacks the capacity to give informed consent, depending on the nature of the adaptation, there may need to be consideration of any requirements under the Deprivation of Liberty Safeguards (DoLs). Note it has been announced that DoLs will be replaced by Liberty Protection Safeguards in April 2022.
Funding of Equipment
The provision of equipment is usually the responsibility of social services and in some areas, it is common practice that the cost of equipment which can be installed and removed fairly easily with little or no structural modification is funded by the social services authority. It is also the case that Regulation 2 of the Community Care (Delayed Discharges etc) Act (Qualifying Services) (England) Regulations 2033 provides that any community care equipment and minor adaptations for ‘the purposes of assisting with nursing at home or aiding daily living which a person has been assessed to need, and for which he or she is eligible, should be provided free of charge by the social services authority, provided the cost is £1,000, or less’.
It is therefore sometimes assumed that equipment cannot be funded by a DFG since the DFG is a capital grant. However, the HAC Guide states that ‘the provision of some equipment will clearly contribute to [the purposes for which a DFG can be given], commonly the use of stairlifts. Other equipment, particularly in the context of assistive technology and monitoring equipment may form part of a wider package of care contributed to by health and social care services’ (Section 2.14).
Earlier guidance on the DFG (DOE Circular 17/96) advised that ‘ultimately it is for housing authorities and social services authorities between them to decide how particular adaptations should be funded’. As the Circular went on to note, the key aspect is that there is an agreement between the respective authorities ‘to ensure that such adaptations are progressed quickly’, and to ensure that the needs of the disabled person is the overriding factor. It should also be noted that the legislation does not set out a minimum value for a DFG and there is no reason why a mandatory DFG for less than £1,000 should not be approved, especially where, as is the case for an adaptation for a disabled child or young person, not test of resources is applied.
Discretionary Housing Assistance Policies
The Regulatory Reform Order 2002 gives local authorities general power to introduce policies for assisting individuals with renewals, repairs, and repairs, and adaptations to their homes through grants or loans. In 2008 the government made a number of changes to the way the DFG was administered and the ways in which it could be used. These changes included the relaxation and removal of the ring fence (in 2010), allowing monies to be used more flexibly and as part of wider strategic projects to keep people safe and well at home, so long as the spending still meets the definition of capita expenditure.
‘From 2088-09 the scope for use of DFG funding will be widened…to support any local authority expenditure incurred under the Regulatory Reform (Housing Assistance) (England and Wales) Order 2022 (RRO). This will enable authorities to use specific DFG funding for wider purposes, which may be more appropriate for individuals than current DFG arrangements allow’. Over 90% of councils in England have now developed a discretionary housing assistance policy.
Such policies may include general provisions which will be of benefit to people with behaviours which challenge them. A typical element in such policies is the option to approve discretionary assistance in excess of the statutory maximum of £30,000 (in England) for a mandatory DFG. This can be of considerable benefit in considering adaptations where the cost of the relevant works is likely to exceed £30,000, which is often the case for adaptations to meet the needs of people with complex needs.
Discretionary grants can also be introduced to meet needs that are not included in the list of purposes for which a mandatory DFG can be given. For example, the provision of a sensory room may have a substantial impact on supporting the self-management of the behaviour of young person with ASD but is not a ‘relevant purpose’ for which a mandatory grant can be given. However, such a provision could be included in a discretionary assistance policy.
Discretionary housing policies could also include other provisions which may meet the cost of adaptations for people with behaviours that challenge. For example, this could include financial assistance with soundproofing or sensory calming measures. As with all discretionary powers, housing authorities must exercise their power to fund additional adaptations rationally and reasonably.
It is unlawful for an authority to operate a blanket policy of refusing to make any discretionary payments to fund adaptations; each individual case must be considered on its merits.
DOE Circular 05/2003 states that ‘Authorities must also avoid fettering their discretion to provide assistance’ noting that whilst they can refuse an application for assistance which falls outside their agreed policy, they ‘cannot refuse an application that is an outside policy without their being a mechanism in place to determine such cases. The mechanism should ensure that exceptional cases that fall outside policy are individually considered on a sound and informed basis and approved where appropriate’ (Section 4.5).
Other Relevant Legislation
As a result of the Care Act 2014, Section 2 of the Chronically Sick and Disabled Persons Act (CSDPA) no longer applies to adults. It does, however, continue to apply to children. This requires local authorities to arrange practical assistance in the home, and any works of adaptation or the provision of additional facilities designed to secure greater safety, comfort, or convenience for a disabled person. Guidance issued by the Department for Communities and Local Government in 2006 states that local authorities ‘have a duty to ensure that the assistance required by disabled people is secured. This includes those cases where the help needed goes beyond what is available through DFG, or where a DFG is not available for any reason, or where a disabled person cannot raise their assessed contribution (para 2.8). The RCOT Guide to Home Adaptations and the Care Act notes that Section 2 of the CDSPA ‘is capable of covering the provision of major adaptations’.
In 2017, the School of Law at Leeds University and the children’s neurological charity Cerebra studied the cost-effectiveness of home adaptations (averaging £60,000 each) for six disabled children. The adaptations were primarily designed to provide additional safe space (including safe garden space). The principal cost-benefit was that the adaptations had avoided the need for young people to be taken into care.
It was calculated that up to 14 years of local authority funds for care placements have been saved due to adaptations. The adaptations also reduced the pressure of caring for parents and had a significant impact on the wellbeing of the young people’s siblings. The report also noted that whilst the cost of adaptations was met from housing budgets (primarily the DFG budget with additional discretionary funding) the consequent significant savings benefited health and social care budgets.
This reinforces the need to take a wider approach to identifying costs and the savings generated by expenditure on adaptations. Adaptations should be seen as one element of an integrated approach to the delivery of services supporting wellbeing and independent living, involving housing, health and social care services. Whilst the cost of adaptations may be substantial, as in the example cited on the following page, with potential costs of residential care exceeding £40,000 pa the alternative cost to the public purse of a care placement can be much more.
Where adaptation costs are likely to be significant, it may be appropriate to develop a whole systems business case demonstrating future health and social care cost savings as part of an approach to agree on joint funding for the proposed adaptations.
Ian and Karen’s son Joshua, aged 11, was awarded [statutory and discretionary funding totalling] £165.000. Significant adaptations included additional safe play space for their son, padding to prevent injuries and a big bedroom allowing someone to sleep next to Joshua, helping prevent self-harm. A safe outside play area was also provided. Ian, who left his job to look after his son, said: “Joshua’s school visits would include some costly overnight stays if we didn’t have adaptations. It is exhausting caring for Joshua. We are struggling now with his behaviour and he will get bigger. We look after Joshua because we love him but doing so reduces public spending and it’s a strong argument for more families with autistic children to have funds to adapt their homes accordingly”. From the Cereba/Leeds University research study
As the practice guidance issued in 2000 to the Children Act 1989 noted, ‘When houses are well adapted for a particular child, the family’s life can be transformed’.
The purpose of a DFG is to enable disabled people to continue to live independently, safely, and well in their own homes.
DFG legislation distinguishes between the applicant, who is the person who has a legal interest in the property to be adapted, and ‘the disabled person for whose benefit it is proposed to carry out any relevant works’. The disabled person can be of any age.
“I don’t think I had any sleep for about two years because I was having to come into Hannah’s bedroom and stop her harming herself from banging against the walls and furniture so I was like a zombie during the day…Since having a Safespace, I’ve been able to get two part-time jobs. They are totally flexible so if Hannah isn’t well, I don’t have to go to work but I could have never of taken those on if I was feeling before like it did before the Safespace.” – Colin, Sheffield
General Design Guidance
The following elements, which particularly focus on sensory issues, may need to be considered when assessing adaptations required to meet the needs of someone with behaviours that challenge.
Control acoustics to minimise background noise, echo, and reverberation to suit the individual and level of focus required. Think about how to minimise the impact of repetitive behaviours such as head-banging.
Adjustable and appropriate light levels can provide a more calming, relaxed environment e.g., ambient warm lighting which avoids harsh bright ‘blue’ light. Lighting may need to be robust and difficult to access (e.g., downlighters recessed into ceilings) and may need to be waterproof.
Design spaces in a logical order based on use to support routine and predictability. Use one-way circulation so people can move between activities as seamlessly as possible with minimal distraction.
Organise a space or building into compartments with clear functions and sensory qualities which help define the use. Separate spaces using furniture, floor covering, floor level, or lighting.
Provide space for respite from the overstimulation of the enviroment. This be a small, partitioned area, a Safespace or crawl space in a quiet section of a room or building. Make the sensory environment neutral and customisable.
Using transition zones helps the individual recalibrate their senses as they move from one level of stimulus to the next. These spaces may be anything from a distinct node that indicates a shift to a full sensory room.
Organise spaces according to their sensory quality. This means grouping spaces into ‘high stimulus’ and ‘low-stimulus- areas with transition zones aiding the shift from one zone to the next.
Safety is especially key for people who may have an altered sense of their environment. Alterations might include using hot water safety fittings and avoiding sharp edges and corners.
Non-institutional design with consideration to colour schemes, patterns (or not), textures/finishes and themes so as to create homely spaces that do not overstimulate and can provide differentiation between spaces if required (as above).
The foundations’ website includes advice from the Challenging Behaviour Foundation with design considerations for adaptations for people with ASD and behaviours that challenge.
It should also be noted that the Building Standards Institute (BSI) in its role as the UK National Standards Body is developing a new project to create the first set of guidance for the design of the built environment to include the needs of people who experience sensory and neurological processing difficulties and/or differences. This includes neurodivergent, neurodegenerative and other neurological conditions which may affect sensory processing and mental wellbeing.
The fast-tracked standard, PAS 6463 Design for the Mind – Neurodiversity and the built Environment – Guide, will provide information for designers, planners, specifiers, facilities managers, and decision-makers on particular design features which make public places more inclusive for everyone, in particular by reducing the potential for sensory overload, anxiety or distress. It will address sensory design considerations including lighting, acoustics, flooring and decor. The standard will be developed by a steering group of experts in the built environment, transportation, planning and neurodiversity fields. It is expected to be published in April 2021.
Neurodiversity, a term which refers to variation in the human brain regarding sociability, learning, attention, mood and other mental functions and encompasses people with autism or learning disabilities, is currently referenced in the current BS8300 ‘Design of an accessible and inclusive built environment’.
As was stated at the beginning of this guide, everyone wants to be able to live safely, independently and well in their own home. However, for many people with autism and/or learning disabilities, their home environment can be disabling and can present significant difficulties for a person with major sensory processing issues.
These challenges have been compounded by the additional pressures created by the covid pandemic when people are having to spend more time than previously at home. What this guide has shown is that effective and creative use of DFG budgets can make a significant impact on the lives of people with autism or learning disabilities as well as on the lives of their families and carers. Such an approach can also make sense financially.
By helping to avoid unnecessary admissions to residential care, appropriate use of DFG budgets not only delivers better outcomes for people with autism and/or learning disabilities and their families but can do so whilst at the same time delivering better value for money for local authorities.
- Newlife Foundation – https://newlifecharity.co.uk
- Safespace – https://www.safespaces.co.uk/
- Contact a Family – https://www.contact.org.uk/
- Fledglings – https://fledglings.org.uk/
- Disabled Living Foundation – https://dlf.org.uk/
- The Challenging Behaviour Foundation – https://www.challengingbehaviour.org.uk
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Our team of Regional Advisors are at the heart of what we do – providing advice and support to Local Authorities and Home Improvement Agencies.