DSH0012

Written evidence submitted by The National Autistic Society

The National Autistic Society is the UK’s leading autism charity. Since we began 60 years ago, we have been pioneering new ways to support people and understand autism. Based on our experience, and with support from our members, donors and volunteers, we provide life-changing information and advice to millions of autistic people, their families and friends. We also support professionals, politicians and the public to better understand autism. 

Autism is a lifelong disability that affects how a person communicates with and relates to other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that while there are certain difficulties that everyone on the autism spectrum shares, the condition affects them in different ways. Some autistic people are able to live relatively independent lives, while others will need a lifetime of specialist support. It affects more than one in 100 people in the UK.

The National Autistic Society campaigns for better services for autistic people across the country. We want to try and improve the availability and quality of community services for autistic people including supported housing, to prevent them from reaching crisis and/ or from being admitted as inpatients to mental health hospitals.

We highlighted many of the issues that autistic people and their families face through our Transforming Care campaign. We run the Autism inpatient mental health casework service (England) which offers advice and support to autistic people and the families of autistic people in England who have been detained in a mental health hospital or are at imminent risk of detention or re-detention.

This submission will address the Public Accounts Committee’s Call for Evidence on Supported Housing with a focus on the impact on autistic people. All autistic people should have the right to live where they want with the right support in place. Supported housing can be crucial in enabling some autistic people to lead independent, fulfilled and happy lives at home with the right support in place. However, too often, the right supported housing options are not available. Investment to secure the supply of more supported housing options is needed to make sure that all autistic people have a suitable home.

Delayed discharges from mental health hospitals

Despite previous commitments from Government to improving the supply of supported housing for autistic people, adequate supply has not been achieved. This has many negative and often costly consequences. The lack of supported housing has often led to long delays in discharging autistic people from inpatient settings. NHS Digitial Assuring Transformation data shows that as of the end of April 2023, 43% of delayed discharges were due to a lack of suitable housing provision. Autism is not a mental health condition, and it is widely recognised that mental health hospitals are not the right place for autistic people and can be deeply damaging. The lack of supported housing being such a significant barrier to discharge therefore, poses a serious human rights concern.

Not only can a lack of suitable supported housing prevent autistic inpatients from returning to the community it’s also a prominent driver for them being admitted in the first place. A chronic lack of funding for adult social care and support, including supported housing, means that there aren’t enough services for autistic people and those that do exist are often inadequate and understaffed. To address delayed discharge and indeed admissions in the first place, health and social care reform is needed.

Look Ahead in their The Financial Case for Integrated Mental Health Services and Supported Housing Pathways report illustrate the “benefits and cost savings that can be made with an integrated approach to mental health care which combines the provision of clinical care, social care and housing support.”[1] Look Ahead’s housing model comprises Crisis and Recovery Houses, Rehabilitation services, Forensic step-down, Housing and advice workers and Community-based support. They estimate that “that these services together save around £5 million a year and if scaled up to the rest of England, could generate savings of around £0.95 billion.”[2]

However, a lack of funding for social care in general prevents adequate investment into supported housing. The National Audit Office (NAO)’s investigation into supported housing reveals that “the Supporting People Programme provided local authorities with ring-fenced funding between £1.8 billion (cash terms in 2003-04) and £1.64 billion (cash terms in 2010-11) per year to pay for care and support services to help vulnerable people to live independently.”[3] The ring-fence was removed from funding in 2009 and following this, “local authority spending on support services generally reduced in cash terms from £1.3 billion in 2010-11 to £320 million in 2019-20.”[4]

Without funding for improvements to community support and housing, autistic people will continue to be at risk of reaching crisis at which point the only remaining options are costly and damaging admissions to mental health hospitals.

Inadequacies of current provisions

The Department of Health and Social Care’s (DHSC) Building the Right Support Action Plan (BtRS), which aims to make sure that all autistic people and people with a learning disability have access to the right support at the right time, recognises the need to improve access to supported housing if it is to fulfil this ambition. The plan refers to several measures intended to increase supply of housing including the . However the National Audit Office report on the Affordable Homes Programme, funded by DLUHC, “found mixed progress in delivering new supported housing. As at March 2022, the 2015 and 2016 iterations of the programme had provided around 12,000 new supported homes outside of London (there were no targets set). However, as at May 2022, DLUHC did not expect to meet its targets of 15,700 to 16,500 new supported housing units under the new 2021 programme.”[5]Affordable Homes Programme.

However, the NAO report on the Affordable Homes Programme, funded by the Department for Levelling Up, Housing and Communities (DLUHC) “found mixed progress in delivering new supported housing. As at March 2022, the 2015 and 2016 iterations of the programme had provided around 12,000 new supported homes outside of London (there were no targets set). However, as of May 2022, DLUHC did not expect to meet its targets of 15,700 to 16,500 new supported housing units under the new 2021 programme.”[6]

According to the Building the Right Support Action Plan a further £15 million is available from 2022/23 through NHS Capital Funding for community accommodation for autistic people and people with a learning disability.[7] It is hoped that this will help to prevent some people from experiencing unnecessary hospital visits in the first place as well as creating more homes for people once they have been discharged from hospital.

However, given the scale of the shortage of supported housing, £15 million will not be enough to resolve the gap in provisions. As well as this, a lack of monitoring and data collection makes it hard to determine the efficacy of this measure, in terms of how much has been spent and how many new homes have been created so far. The BtRS Action Plan also refers to the Care and Support Specialised Housing Fund as a means of improving the supply of supported housing. However, since the end of April 2022, this scheme has been closed

Overall, the funding schemes and programmes cited by Government as a means for providing the right support to autistic people, have been woefully ineffective as there are increasing numbers of autistic people in inpatient mental health hospitals. Assuring Transformation data shows that at the end of April 23 there were 2,060 autistic people and people with learning disabilities in inpatient mental health hospitals in England 1,320 (64%) of these people are autistic this is an increase of 6% since March 2021 and an increase of 26% since 2015.[8] As well as this, the issue of delayed discharges has not been mitigated.

Unregulated supported housing

Campaigners and care watchdogs highlight a concerning loophole in supported housing regulation. At present, providers that do not provide the regulated activity ‘Personal care’ do not have to be registered with the CQC. In one case “The family of an autistic man say he was subjected to sexual and psychological abuse while living in supported housing that was not regulated by the Care Quality Commission (CQC), and that other residents were locked in their bedroom by staff.”[9]

The lack of regulation can have disastrous consequences for autistic people and mean providers are not being held accountable. We know, even in regulated mental health hospitals, there are too many examples of abuses including those exposed in Winterbourne View, Whorlton Hall, the Edenfield Centre and within the Essex Partnership University NHS Foundation Trust.

Without regulation preventing and uncovering abuses is even harder. The lack of protection and accountability within unregulated housing can mean that closed cultures develop, and that autistic people are particularly vulnerable. Not only this, but the lack of oversight and monitoring means that the performance and quality of these supported housing providers is not assessed, making value for money impossible to determine. There is no collected data that reveals how many autistic people are in unregulated accommodation meaning the scale of the potential problem is unknown.

Gaps in data

While the data we do have illustrates the difficulties autistic people face in securing supported housing, there are also many areas where data is inadequate. The NAO investigation into supported housing reveals “The Department for Work and Pensions (DWP) and DLUHC do not routinely collect data at a national level on the numbers of all people in supported housing or the numbers of units of supported housing.”[10]

More information is needed to answer the following:

- How many autistic people are currently waiting for supported housing?
- How long do autistic people wait for the right home?
- How accessible are Government supported housing schemes and programmes, how widely are they known about and utilised, by autistic people?
- How many new supported homes are needed?
- What are the costs of supported housing placements?

The gaps in data will be particularly crucial to address in light of the proposed changes to the Mental Health Act, which will remove autistic people and people with a learning disability from scope of section three if they do not have a co-occuring mental health condition. This much needed legislative reform must be treated as the catalyst for also developing adequate support in the community and the Government must act quickly to provide an appropriate supply of supported housing to make sure that current inpatients and those at risk of admission are able to be sufficiently supported in the community.

In September 2021 RedQuadrant were commissioned by DHSC to undertake an analysis of the funding flows associated with BtRS including an assessment of whether investment is sufficient and being used and directed to the best effect.[11] This is particularly relevant to making an assessment of the efficacy of supported housing as “the financial model for the BtRS national plan is based on releasing savings from a reduction in inpatient care and using those savings to fund:
- accommodation with care and support for those discharged from inpatient beds
- community support services which would better support people in their homes and therefore avoid the need for the volume of inpatient admissions that had hitherto been the case.”[12]

Ultimately, RedQuadrant encountered significant difficulties in accessing the financial data required to make an informed assessment stating that “the lack of consistent and readily available financial data demonstrating how resources have been allocated, committed and spent limits the ability of the national system to be able to determine the cost-effectiveness of the programme.”[13] As well as this, the efficacy of existing Government provisions have not been sufficiently evaluated. As a result, the number of new homes that have been provided and the numbers of autistic people that have been discharged from hospital as a result cannot be determined.

Despite difficulties in obtaining an accurate analysis of funding flows, the lack of progress in ensuring autistic people have adequate support in the community included supported housing speaks to the fact that the measures are inadequate. The RedQuadrant report suggests that the financial model of BtRS which relies on releasing savings from a reduction in inpatient care and using those savings to fund supported accommodation is insufficient and that “some form of additional funding stream is likely to be required to ensure that the impact of the creation of significant deficits on local health and adult social care system budgets does not begin to act as a disincentive to discharge those with higher levels of need.”[14]

While data collection is needed to confirm the correct levels of investment needed and the financial benefit this would provide in the long term, there is increasing evidence for and support for reforming adult social care through funding community provisions. Look Ahead in their report on integrated mental health services and supported housing pathways[15] suggest that integrating housing support with clinical and social care would not only “enable individuals to receive tailored treatment, interventions and care closer to home”[16] but that this model would also create long term cost savings through improved health outcomes and a reduction in the use of other services, for example crisis admissions to mental health hospitals.

These changes would also be in keeping with intentions set out in the NHS Long Term Plan including reducing unmet demand on NHS services through renewed focus on prevention, providing better social care and community support and commitments to support adults to live well within their own communities.[17] Alongside financial incentives it is vital to recognise the moral argument for improving the availability of appropriate supported housing. This can be vital in enabling some autistic people to obtain independence and to live a happy and fulfilled life on their own terms.

June 2023