North west charity Autism Together, supported by four other regional autism charities, has written to the leaders of all main political parties calling for urgent intervention by central government to rescue a sector in crisis. You can read it here: Autism Together open letter
The plea follows an April 2017 survey by Cordis Bright Viewfinder into the financial health of all social care sectors. In what the report authors called a ‘shock to the system’, the survey found that 77 % of autism providers are struggling financially, with nearly two thirds stagnating or shrinking.
The charities (Autism Together, Autism East Midlands, Autism Sussex, the North East Autism Society and Kent Autistic Trust) stress that their services – such as residential care homes, supported living in the community and day services – are under-funded by cash-strapped local authorities, which continue to face their own pressures.
One in every hundred people in the country now have an autism diagnosis. This unique, lifelong condition remains the only disability to have its own act of parliament. The Autism Act (2009) recognises generalist support strategies – such as those which may be applied to people with learning disabilities and Down’s syndrome – do not work with autism. Autism-specific support workers require expensive and lengthy training to cope with complex mental and physical challenges.
The charities call for urgent action in four areas:
1. Local authorities must pay hourly rates which reflect costs. The living wage and new sleep in legislation have dramatically impacted the costs of service providers yet the rates local authorities are prepared to pay have not increased in tandem. Autism Together reports a £500,000 increase in costs in 2016/17 yet one of the lowest hourly rates nationally (£13.55 per hour) for supported living.
2. An end to the slashing of care packages. Social workers are now routinely slashing care packages without person centred review meetings, checking only that the person with autism is ‘safe’ and abandoning any concern for their quality of life.
3. Increased co-operation from health and social care workers. Autism providers are finding it impossible to negotiate effectively with commissioners, who seem intent on cutting costs rather than considering wider options. One charity chief executive called the behaviour of commissioners ‘alarming’, fearing it would lead to ‘long-term catastrophe’ in the form of dramatic rises in hospital admissions.
4. Support workers must be paid what they’re worth. The charities report recruitment and retention of support workers is extremely challenging (average staff turnover in the sector is 27.5%). Many workers are leaving their roles for less demanding and better paid jobs. One manager reported that a highly skilled and dedicated staff member had recently resigned and gone to work in a discount store.
Chief executive of Autism Together, Robin Bush, said, “We have supported living services failing right now because of this whirlwind of poorly considered budget slashing. We care deeply that Alan, a quiet man in his forties, is too scared to go home at night because his anxious flatmate is experiencing deep paranoia and displaying challenging behaviour. Social services will no-longer let us have a full-time support worker in the house to manage these vulnerable people. This house had worked exceptionally well for nearly eight years.”
Chief executive of Autism East Midlands, Jane Howson, said, “This feels like a continual battle. We’ve had a very recent case of a gentleman with autism who was being extremely challenging to staff and other clients. We allocated a dedicated support worker to him and his behaviour improved dramatically. Despite the fantastic success of this case, his funding has been cut and his dedicated support worker removed. This short-term decision is likely to have long-term implications for him and us as well as increase long term costs.”
The charities state that council tax rises and injections of cash into social care alone will not resolve their issues. First, they need recognition from both central and local government (whichever political party that may be) that, as providers of specialised services, their costs are higher.