The challenge of autism

Many people with autism and severe learning disabilities need high levels of skilled care and support throughout their lives. Most have limited capacities for speech and communication and may need help with activities of daily living, such as washing, dressing, eating. Many suffer epileptic seizures, others have mobility problems and need close attention to keep them safe. Some may present with mental health problems or challenging behaviour, risking injury to themselves or others. Such individuals sometimes need supportive staff in a ratio as high as two carers to one service user, some at night as well as during the day.


In the not so distant past, individuals with severe and complex disabilities were contained in institutions. Now they live in the community and it is the responsibility of local authorities to provide services that enable them – and their families – to enjoy a decent life. Just as somebody with a leg injury may need a crutch to enable them to walk independently, for somebody with severe learning disabilities to enjoy a degree of independence they may need the support of a network of skilled and experienced carers and specialised services. Such support is inevitably costly – and, where needs are life-long, it is unlikely that levels of support can be reduced without risking loss of independence and wellbeing.


Autism in Haringey

Population estimates suggest that there are around 2000 adults with autism in Haringey, though most are not known to the Council. There is no formal provision for adults with autism who do not have a learning disability, though they may need help with housing and employment or support from mental health services.


Only adults with severe learning disabilities and other complex needs are eligible for adult social care services. This group is growing in number as more young people with higher levels of need make the transition from children’s services. Because the life expectancy of many individuals with life-long needs has increased in recent years, this population poses particular challenges for adult social care services – at a time when resources have been drastically curtailed by government spending cuts.


Buildings-based day services

Adults with autism and learning disabilities often benefit from access to dedicated buildings-based day services. These provide places to meet with friends and familiar staff in conditions of security and safety. They also offer programmes of purposeful activities, both indoors and, with appropriate support, in the wider community, and provide respite for hardworking family carers.


Day centres also provide a vital safeguarding role as experienced staff can identify early signs of neglect or abuse and symptoms of physical or mental ill health. As many adults with autism and learning disabilities continue to live with their (sometimes ageing) parents and other family members, such day opportunities also provide vital support and respite for home-carers.


Legal responsibilities

According to statutory guidance issued in 2015 under the 2009 Autism Act, local authorities and health services are obliged to provide a range of services for people with autism. These include autism awareness training for all staff and specialist training for key staff (such as GPs and community care assessors). They are also required to develop a clear pathway to diagnosis and assessment for adults and to commission services based on adequate population data. Authorities have further responsibilities in relation to preventative support and safeguarding, ‘reasonable adjustments and equality’, employment and criminal justice.


Under the 2014 Care Act local authorities have a duty to promote the well-being of service users and their carers and all carers are entitled to an assessment of needs. Family carers need independent advocacy and support, a service which should be independent of the Council and its imperative to cut care costs.


Haringey’s record

The fact that Haringey Council has failed to establish the numbers of adults with autism in the borough reflects its failure to recognise the needs of individuals across the autistic spectrum. It has particularly neglected the needs of those with associated learning disabilities and other physical and psychological difficulties, whose needs are greatest.


Since 2010 Haringey Council has closed 17 residential and day care facilities for vulnerable adults. It now offers a service at the Ermine Road hub for only 15 people with autism and complex needs. This is half the number who formerly attended Roundway, Haringey’s flagship autism service which was hurriedly closed in 2017.


Many people with autism and learning disabilities are now obliged to go out of the borough to find suitable day opportunities. This results in higher transport costs for families and longer periods of time spent in travelling. It also means that it is more difficult for family carers – and service commissioners  – to maintain close contact with these provisions. This has been recognised as a significant factor in the failure to recognise neglect and abuse of the sort that has been exposed at Winterbourne View and elsewhere.


People with autism and more complex needs who live in residential care or supported living schemes are, following recent cuts and changes to adult services, denied access to Council day opportunities programmes. Adult Services data show that, of the 41 users at Ermine Road in April 2016 who lived in Supported Living or residential provision, only four remained at Ermine Road in August 2017. These users have been excluded from the Council’s only day centre for learning disability. Support workers, who may lack appropriate training or expertise, are obliged to organise day activities as well as providing basic personal care.


The future we need

Haringey council leaders and officers have cynically used the rhetoric of progressive community care to justify service cuts resulting from their austerity budget. They emphasise their commitment to promoting ‘choice’ and ‘independence’ and disparage current services as ‘traditional’ and ‘institutional’. But people with high levels of disability can only become more independent through the support of skilled and experienced support workers. They can only remain independent if appropriate support is maintained: ‘a need that is met remains a need’. Cuts in care services are likely to result in deteriorating mental and physical health, perhaps provoking psychiatric illness and challenging behaviour and leading to hospital admission (and higher care costs).


We need a local autism centre in Haringey that can cater for the diverse needs of people across the autistic spectrum and their families and carers. We need:


  • A centre that can provide day opportunities for those with associated severe learning disabilities and complex needs;

  • A centre that can be an information hub for parents and family carers, where they can meet for mutual support;

  • A centre that would provide a link for autistic people needing to engage with local services for health, training, employment, housing and leisure.

Because people’s needs are different, there must be scope for different sorts of day opportunities and scope for individual choice.


The May elections in Haringey offer the chance of a change in direction. We need a change in Council policy away from the fatalistic pursuit of austerity and the adoption of an approach that puts the needs of the borough’s most vulnerable residents at the top of its agenda.


We ask that incoming councillors pledge their support for:

    A freeze on cuts and closures;

    An independent inquiry into the current state of adult social care in Haringey;

    A Haringey Autism Centre