Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Section 4: Housing and Independent Living

Introduction

The consultation document highlights the need for appropriate housing as an essential requirement for independent living. This in turn, will improve health and wellbeing and consequently save money in the long term from health and social care costs. However, reference is made to the 2018 Equalities and Human Rights Commission report which found that many homes did not meet specific requirements, therefore housing was not fulfilling disabled people's rights to independent living.

The consultation detailed aims to better protect and uphold rights around housing and independent living. Although there are currently a number of measures in place to assist with housing, it was suggested that the LDAN Bill could provide a stronger focus on how public authorities’ duties around housing and independent living can be best met for people with learning disabilities and neurodivergent people. Five proposals were put forward:

• Proposal 1: Advice, Advocacy and Guidance - consider specialist advocacy services for housing support to enable people with learning disabilities and neurodivergent people to access their rights to housing and independent living.
• Proposal 2: Neurodivergence and Learning Disabilities Strategies - require strategies produced by local authorities to set out how independent living principles are embedded into assessment and allocations policies, to ensure real choice and control. Consider whether currently produced Local Housing Strategies must also set out how the needs of people with learning disabilities and neurodivergent people are met, and to evaluate their progress. Consider requiring Integration Authorities neurodivergent and learning disabilities strategies to: set out how housing, care and health services are integrated; describe the supports available to people to help them live independently; and evaluate progress against this.
• Proposal 3: Mandatory Training for Housing Professionals - extend the requirement for mandatory training to housing service professionals.
• Proposal 4: Data - (a) improve the way data is collected and shared by relevant public bodies (such as local authorities) on the requirements of people with learning disabilities and neurodivergent people, and their housing needs, and (b) collect data on how many people with learning disabilities are considered not to have access to appropriate housing.
• Proposal 5: Inclusive Communications - some documents in relation to housing need to be available in Easy Read formats.

Main Findings

Overall, 420 respondents provided feedback at this section. Nearly two thirds of these respondents agreed with all five proposals as each had merit and could be impactful in relation to housing and independent living.

Where respondents did not agree with all proposals, the single most supported option was introducing mandatory training for housing professionals (Proposal 3). This was followed by the provision of advice, advocacy and guidance (Proposal 1), developing strategies and/or incorporating consideration of people with learning disabilities and neurodivergent people into existing strategies (Proposal 2), and providing inclusive communication (Proposal 5). Very similar numbers of respondents supported both Proposals 2 and 5. The proposals related to data (Proposal 4) was the least well supported of all five options, and received the highest levels of explicit disagreement (albeit by a small number of respondents).

The following sections set out the main reasons for support or disagreement with each of the five proposals in turn, however, it should be noted that comments and discussions of each was limited. Rather, many respondents discussed issues in the housing sector more generally and/or identified key areas that needed to be addressed - these issues are discussed after the proposal specific coverage.

Proposal 1: Advice, Advocacy and Guidance

Many respondents agreed with the need for more advice, support and advocacy. The general feeling was that a more regulated/standardised approach in this area would increase accessibility and may also help with navigating other government departments and systems surrounding housing:

“…this needs to be specialist housing support - the range of conditions covered by LD (learning disabilities) and ND (neurodivergence) is gigantic - and it must not assume that someone who has 'low support needs' would not struggle with housing related issues.” (Neurodivergent Individual and Family/Friend/Carer)

A few also felt that improvements in this area would help to make the housing system more people-centric rather than led by process. The need for specialist support, and therefore specialist training, was regularly cited in response to this proposal.

Although only a handful of respondents disagreed with this proposal, their reasons typically corresponded with caveats and concerns raised by those who supported it. It was felt that advocacy and support should be overarching and not just ringfenced by sector. This echoes sentiments shared in the overarching themes section on advocacy where some respondents felt that individuals would benefit from a one stop shop or single point of contact for a wide range of issues rather than different specialist advocates per sector.

Proposal 2: Neurodivergence and Learning Disabilities Strategies

Many respondents agreed with the proposals set out for the development of neurodivergence and learning disability strategies. It was suggested the current system was inadequate and that improvement in this area would be of great benefit to people with learning disabilities and neurodivergent people. In particular, it was felt that having a strategy and a requirement to evaluate progress against this would ensure that policies were inclusive and effective at addressing the specific housing needs of local populations:

“We fully support the proposal that legislative requirements should be established for national and local strategies to ensure that the principles of independent living are deeply embedded into the assessment and allocation policies of local authorities. This ensures real choice and control for neurodivergent people and those with learning disabilities.” (Advocacy Service)

There were, however, some caveats alongside support for this proposal. Consistent with concerns raised throughout this consultation, a few respondents were concerned that a lack of resources would inhibit the implementation of any strategies. It was felt that, against the backdrop of public sector budget cuts, it would be difficult to achieve any real changes or improvements.

Another concern, again echoed across the consultation, was that allowing individual authorities to create their own strategies could result in a difference in standards between authorities and a lack of accountability or ambition.

Proposal 3: Mandatory Training

The most popular individual proposal was the requirement for mandatory training for housing service professionals. Respondents were very much in favour of this proposal, with some referring to their own experience of poor service. The general feeling was that specialist training regarding both physical and sensory needs would bring significant improvement to the system. Some stated that improved specialist training would result in a ‘kinder’, more understanding, person-centred approach, with more suitable homes being offered since support staff would be more aware of individual needs.

There was also a common call for such training to be extended to other services and professionals related to housing, for example, inspectors, trades people, letting agents, landlords, etc.:

“Some of the existing housing legislation, particularly "safety" legislation like gas safety and electrical safety inspections are extremely traumatic and feel like severe invasion of my "safe space" by very unpleasant, poorly trained and unsympathetic people.” (Neurodivergent Individual)

Again, consistent with views expressed elsewhere, it was suggested that training plans be developed in partnership with people with learning disabilities and neurodivergent people.

There was very little disagreement with Proposal 3, however, one individual raised concerns about the efficacy of existing training, with online training seen as ineffective and treated as a tick-box exercise.

Proposal 4: Data

While many respondents agreed with Proposal 4 linked to data, the majority did not offer reasons for their support or provide much discussion of the issues in this respect. Only a few responded with the general notion that the proposal to improve data collection would help the housing system to evolve appropriately to meet specific needs.

As noted above, this proposal elicited the highest levels of specific disagreement, albeit from a very small number of respondents. Consistent with the concerns raised at the overarching theme related to data, a variety of caveats, concerns and queries were raised in relation to housing based data:

• Some questioned what information would be recorded, how and by whom;
• Some were concerned that data collection could lead to discrimination; and
• Some emphasised the need to make good use of the data.

A few also suggested that much more information was needed to develop this proposal.

Proposal 5: Inclusive Communications

Again, many respondents agreed with Proposal 5 and the need for inclusive communications within the housing sector. The main considerations were again consistent with those expressed elsewhere. Namely that, provision of alternative formats should be mandatory and provided as standard so that people with learning disabilities and neurodivergent people and their families/carers do not have to know it is available/ask for this, and that inclusive communication should not be restricted to Easy Read, but rather a wider range of communication/information types were also needed. This included audio and video format, and via advocates:

“Proposal 5 should make it compulsory for housing authorities to provide Accessible and Inclusive Communication materials.” (Carer)

No respondents disagreed with Proposal 5, although one did suggest that not enough information had been provided in relation to this.

Other Comments and Considerations

A large number of respondents discussed issues related to housing more generally. This included identification of the problems or difficulties in the current system, as well as identification and discussion of the challenges faced by the housing sector in providing appropriate housing to fulfil independent living requirements. Some also outlined other measures that could be helpful in tackling the current issues in this sector. A wide range of additional comments were provided, highlighting other issues that should be given further consideration, as below.

More Suitable and Supported Accommodation Needed

One of the main issues discussed by respondents was the lack of affordable/low cost and/or social housing generally, as well as a lack of suitable accommodation and supported accommodation for people with physical disabilities, people with learning disabilities, autistic people and neurodivergent people. Respondents highlighted the impact this had on both the individuals and their families/carers. The lack of suitable options meant many adults remained in the family home with their parents much longer than their neurotypical peers (thus impacting their independence and autonomy), while families/carers discussed the worry and anxiety they had over the future:

“Housing and support is one of the main concerns for parents of LDAN adults. This is a concern which is made worse by the lack of housing and suitable supported accommodation caused by a lack of vision and planning by Local Authorities.” (On behalf of a LDAN person, and Family/Friend)

Respondents stressed the importance of increasing supply and ensuring provision happens in a planned and managed way. However, there were differing views and preferences for the types of housing required, with suggestions including fully and partially supported housing, fully independent housing, adapted homes, as well as shared and community living options. Overall, a wider range and choice of options was perceived to be needed, either via local authorities or registered social landlords (RSLs), and supported by the Scottish Government.

Transition and Ongoing Support

Several respondents commented on the need to provide greater education and information to young people, as well as proactive support so that they are able to live independently. It was felt that younger people were given little choice of housing or limited information about what was available to them, and there was a sense that authorities were more inclined to leave young people in their family home wherever possible.

A handful of respondents specifically discussed residential care or schooling for children, as well as the transition from childhood to adulthood and the difficulties faced with housing options at the interface. It was said to be very difficult to accommodate some young people in their local area, but it was argued that providing continuity of care and housing as a person transitions from childhood to adulthood was important.

A few respondents also highlighted the need for ongoing support once people with learning disabilities and neurodivergent people are housed. They said without suitable levels of ongoing contact and consistent support from other services (such as social work/social services), newly housed individuals are “set up to fail” as they are often unable to maintain their tenancy:

“Checking on people with NDs [neurodivergence] is important. There's numerous cases where social services and housing authorities have dumped people into houses and then leave them without any support.” (Neurodivergent Individual)

In addition to supporting young people and adults directly, several respondents also suggested that support be given to their carers or family members. It was thought that supporting carers with training, information and signposting would develop them as effective advocates for their loved ones housing needs.

Investment and Funding Needed

Additional funding and support was said to be needed within the housing sector, both to address issues related to housing stock, and to deliver the aims and proposals set out in this section of the consultation.

It was felt that the current financial situations that public bodies and local authorities are in, budget cuts, financial restraints, and the declared housing crisis in some areas meant tackling the housing stock problem would be difficult without significant investment and increased funding being made available:

“…recent cuts to the affordable housing supply programme are likely to limit the ability of registered social landlords (RSLs) to achieve their aspirations for the development of new housing. Issues about capital and revenue funding arrangements for supported housing models are a disincentive to develop the specialist models of housing that some people require.” (Housing Sector Organisation)

Several respondents (an equal mix of individuals and organisations) also commented on the need for dedicated government funding to ensure that the aims and proposals set out here could to be turned into reality.

Understanding Needs in Infrastructure, Policy and Housing Allocation

Several respondents felt that people with learning disabilities and neurodivergent people should be considered as high priority on housing lists alongside disabled people, those who are homeless, and asylum seekers. It was mentioned that the points-based system for housing often does not include neurodivergence and respondents felt that this should be corrected to provide a more holistic approach and to ensure such individuals do not become homeless.

Several also highlighted the need for autistic people in particular to have their own space in family homes and/or to live alone upon becoming an adult. They stressed the difficulties and inappropriateness of shared accommodation provisions. However, it was noted that current allocation of social housing for families did not take account of neurodivergence and would often result in room sharing between siblings. Further, it was highlighted that the housing element of Universal Credit did not provide for more than a room in a shared flat until a person reached the age of 35. This meant that housing choices were limited and often unsuitable.

Again, several respondents detailed how sensory issues can result in people being overwhelmed, and therefore noise, light and smells needed to be understood and considered within housing design, adaptations considered, and in relation to housing allocation. Respondents felt that such needs are often dismissed:

“…the needs of neurodivergent people are every bit as vital as the physical adaptations made for other disabilities. Even something like a grant to cover the cost of adding adequate soundproofing to my home would make an enormous difference to my overall ability to function on a day to day basis.” (Neurodivergent Individual)

A handful of respondents also mentioned that the use of technology could assist people with learning disabilities and neurodivergent people with everyday independent living. This included presence sensors, Artificial Intelligence (AI) central heating controls, and motion-detector systems.

Greater Involvement of Other Professionals

A number of respondents (mostly organisations) mentioned the need to include, or ensure greater involvement from more specialist services. This included involving Speech and Language Therapists in the development of inclusive communication, and Occupational Therapists in the development of training and housing strategy, as well as individual assessments around housing needs and any adaptations required to support independent living:

“Currently [local authority] works in close partnership… to ensure close cooperation between the services, this include funding a dedicated Housing Occupational Therapist. This has been a successful model and illustrates that partnership working and a degree of service integration can best meet the needs of the wider community and specific groups within it.” (Local Authority)

Home Owners

Finally, a handful of respondents commented that little consideration was given in the consultation document to those who rent privately or own their own homes. They asked that support for buying and owning a home be included in the LDAN Bill.