Not registering the right support to transform care

As the clock ticks down towards the end of the Transforming Care Programme in March 2019, there is widespread concern the programme has been unsuccessful in realising the ambitions set out in the Building the Right Support strategy.

These ambitions, rooted in the wake of Winterbourne View and similar scandals, were to develop more community services for people with learning disabilities and/or autism, who display behaviours that challenge, including those with a mental health condition, and to close some inpatient facilities.

However, for a variety of reasons, including lack of appropriate alternative care in the community, there are a substantial number of people with learning disabilities and/or autism who remain trapped in, and continue to be inappropriately admitted to, assessment and treatment units rather than living with support in the community.

Appropriate services

There is a real need to ensure that there is appropriate person-provision available to allow people with learning disabilities to move out of hospital type settings when these are no longer appropriate.

Numerous established and reputable providers of learning disability services with a proven track record of delivering high quality person-centred care for people with learning disabilities or autism are being refused registration of new services or small numbers of additional beds by the CQC

What is also vital is that there is the opportunity for people with learning disabilities and autism to exercise the same choice about the appropriate service and accommodation for them in the same way as anyone else would.

From a provider perspective, a real difficulty which has presented itself in the provision of appropriate services for people with learning disabilities and autism, is achieving Care Quality Commission registration.

In certain circumstances, the CQC’s rigid application of Registering the Right Support appears to be compounding the problem of lack of availability of alternative provision to in-patient accommodation.

Registering the Right Support (June 2017) is the CQC’s policy on registration and variations for providers supporting people with a learning disability or autism. It was designed to ensure that registration decisions are developed and designed in line with Building the Right Support and other best practice guidance.

Feedback from Providers suggests that, notwithstanding statements to the contrary in the Registering the Right Support guidance itself, the CQC is slow to allow any measure of flexibility in the application of the guidance and is reluctant to register any type of service which sits outside its preferred national model of a six bedded unit in the community.

Numerous established and reputable providers of learning disability services with a proven track record of delivering high quality person-centred care for people with learning disabilities or autism are being refused registration of new services or small numbers of additional beds by the CQC.

The reason being that the CQC consider they do not comply with the principles of Registering the Right Support because they do not fit within the parameters of the national model.

Practical reality

The practical reality of this is that providers who have developed high-quality services to provide support to meet the needs and choice of people looking to move out of unsuitable placements, are unable to do so as they cannot achieve registration.

What seems to be being forgotten is that people should be offered a choice of housing options and that decisions should be based on what is right for each individual

One wonders what impact this will have on the market generally and the development of appropriate care to meet the Transforming Care agenda if independent providers are dissuaded from investing and developing services because it appears they will not be able to get registration perhaps without lengthy legal challenge, if at all.

It is quite correct that for many people, small scale supported living will be the right decision. We hope that these services will continue to be developed to meet the demand required and to assist in furthering the Transforming Care agenda. However, they will not be the correct type of accommodation for every individual with learning disabilities and/or autism.

Some will have levels of need such that supported living is not appropriate for them. Others simply may not want to live in supported living and are actively seeking residential care with small groups of people. Particularly at those services where they see other residents receiving high quality person-centred care and achieving good outcomes.

What seems to be being forgotten is that people should be offered a choice of housing options and that decisions should be based on what is right for each individual. The Care Standards Tribunal has recognised this and has warned that CQC should not fall into the very trap that their own guidance warns against by being overly prescriptive and creating a “one size fits all” approach to registration of services for people with learning disabilities and autism.

However, it remains to be seen whether this approach is being filtered down to those making decisions on the registration of new services or beds.

These applications ought to be looked at holistically, taking account of the needs of the individuals that the services are designed to meet.

This will allow a market with a variety of appropriate services which ensure real choice for people with learning disabilities and/or autism. This in turn will assist in achieving the aims under Transforming Care to ensure that people are not left in unsuitable placements or institutions for any longer than they need to be.