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Our latest blog comes from our Chief Executive Officer, Jane Howson. Jane is also Chair of the Autism Alliance which is a network of specialist autism charities in the UK. In this blog Jane talks about the latest Panorama programme “Hospital Abuse Scandal” and how the health and social care system is failing people on the autism spectrum. This links into the Alliance’s #KnowYourRights campaign, which you can learn more about here

The latest Panorama programme highlights, once again, that the health and social care system is failing people on the autism spectrum. This in the same week as CQC raised concerns about seclusion of autistic adults and children within these environments. This is not an isolated failure of one provider. It is an indicator of a whole system approach that is in crisis. Eight years on from the distressing images from Winterbourne view, it appears we have learned very little.

Anybody who has studied human behaviour in institutions, from the renowned Stanford Prison Experiment onwards, will know that the power dynamics behind closed doors are critical. One or two bad apples, without suitable checks and balances can dominate and poison a staff team. As Sir Stephen Bubb, author of Winterbourne View –a Time for Change said recently, the key is to meet needs within community settings.

We know that around 2300 autistic and/or learning disabled people are still in Assessment and Treatment Units at an average cost of £180k per person per annum. We understand that more than half of the people are on the autism spectrum. This is despite more than £100m being allocated to the Transforming Care agenda nationally.

Charitable and other organisations are out there with the specialist knowledge and skills to provide care outside of hospital, so why is it not happening. More importantly what is creating the constant pull of autistic people into the secure hospital setting?
The answer is that the system is in crisis at every level.

The provision of appropriate person centred services start with appropriate assessment. The legislation is clear that people are entitled to an assessment that is suitable to their needs, undertaken by someone with the skills and knowledge to understand autism and its impact on them as an individual. We know this is not happening across the country. Our recent Know Your Rights campaign found that 75% of people only met the person conducting their assessment on the day of the assessment. Only 25% of local authorities offered their staff more than a days training on autism and we found only 10% that were using autism specific assessment tools.

This matters because if needs are not accurately assessed, they will not be appropriately met. This is happening in the context of local authorities facing unprecedented financial pressures with around half of central government funding having been cut under austerity measures. This resulted in a 425,000 reduction in people being supported by social care in the first 4 years of cuts alone. Around 55% of local authority spending is on social care and 66% had resorted to using their financial reserves to prop up services by 2016/17.

These cost pressures have not only resulted in poor assessment. Local authorities have understandably been trying to push down the cost of social care packages to meet assessed need. This means that individuals have had support packages cut. The financial pressures on providers have been enormous. Costs have risen continuously due to the upward pressure of the living wage and recent rulings about sleep in shifts, in addition to general cost of living increases. These upward cost pressures have often been met with an equal push for a downward trend in fee rates. Many local authorities are reluctant to pay the higher fees required to commission specialist autism care and support. Specialist support is more costly as it requires more training and experience and greater investment in suitable environments.

The additional costs of specialist social care are insignificant when compared to the £180k per annum of placement in the Assessment and Treatment Units, but they come from the social care budget rather than an NHS budget. Despite this we have seen case study after case study of individuals thriving when they revert to social care in the community. This should not be interpreted to only mean supported living, which when done properly is brilliant. Supported living is very popular with local authorities, as the housing costs come from housing benefit and provide savings to the social care budget (although the over all cost to the state is often higher). However, when supported living is in a shared house, with little choice and control on the part of an autistic tenant who might have a high level of sensory needs, it can be the worst of all worlds. It also receives much less regulatory scrutiny than registered care.

A further issue is the very rigid application by the CQC of their ‘Registering the Right Support’ Guidance. This has undoubtedly been part of the slowing down of new provision within the sector. This policy seems to be based on minimal evidence and is significantly restricting the choice of individuals on how and where to live. It is not logical, for instance, to interpret easy access to the community as everybody must live in an urban area. For some autistic people the peace and space offered in a rural/semi rural setting can only be beneficial. Easy access might be by car driven by a support worker, the benefits of the rural environment might significantly outweigh the opportunity to walk to community services, probably still accompanied by a support worker.

Another part of the guidance that is overly rigidly applied is the perceived maximum suitable number in any home of 6. There is no evidence that larger homes are less likely to be rated as outstanding or good by CQC than smaller services. Even where we supply people with their own flats within registered care 6 is seen as the max on any site, or within one postcode area. If it were supported living you could build a block of 30 flats and fill them with autistic adults and the CQC would not need to register the site or visit the setting on inspections. The risk of not achieving registration, which you can’t apply for until after you have developed the property, has definitely made some investors think twice. This barrier to investment is singularly unhelpful at a time when we need more provision.
We know that families are often not aware of the rights of their family members, or they might not have the fight left in them to challenge decisions that are made. We know that many autistic adults are not being offered their statutory right to an independent advocate. 80% told us that they needed more information about their rights.

We need some national leadership that enables autistic people to access the services they are entitled to, provided by well trained and experienced autism practitioners, in environments that are designed with autistic individuals at their heart. The Secretary of State for Health Matt Hancock’s announcement, at the launch of the Embracing Complexity Coalition, of a new unit within his Department to co-ordinate support for neurodivergent people is therefore very welcome.