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A community-based service for autistic adults

Frank Chapman, Clinical Psychologist at Mersey Care NHS Foundation Trust, and colleagues from the NHS and University of Manchester discuss how they developed a diagnostic and assessment service for autistic adults that included post-diagnostic support and interventions.

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Authors: Frank Chapman, Matthew Loughlin, Tracey Thistlethwaite, Charlotte Cox

A community-based service for autistic adults 

How the service began

Despite many people with a diagnosis of Asperger syndrome (AS) having significant and complex needs, they are often deemed ineligible for provision from either mental health or learning disability services. Moreover, this absence of services (or at the least this absence of appropriate services) for people with AS means that there is also a gap in the provision of diagnostic assessments for those who may have the condition. Living with undiagnosed AS can result in reduced entitlement and access to social care provision; in turn this can result in isolation, mental health problems and often misdiagnosis (Barnard et al., 2001).

For people with AS living in Sefton, Merseyside there had been an absence of such a dedicated service. A passionate carers group had lobbied for a specialised service for a number of years, and legislation developed at a national level over the last decade (Department of Health, 2009, 2010, 2014) gave the calls of this group extra credence. In 2014 Sefton’s two Clinical Commissioning Groups (CCGs) agreed to fund the establishment of a new AS service.

The legislation and guidelines were to a degree ambiguous in terms of what provision statutory services were required to deliver. As a consequence it appears that local authorities and healthcare providers have interpreted the requirements and developed services differently across the country. This has resulted in differing models of provision for autistic people.

For example some services have focused solely on people without a learning disability whilst others provide for everyone on the autism spectrum. Some have focused solely on meeting the need for diagnostic assessments, with post-diagnostic support provided by other statutory or third sector services. Others have provided post-diagnostic interventions in addition to autism assessments. In the context of high demand and limited resources we set out to develop a service that would support our service users in the most effective and efficient way possible.

Developing the service

From the outset all stakeholders were in agreement that an assessment and diagnostic service alone would struggle to meet the often complex needs of this population. It was therefore directed by the CCGs that the new service would also need to offer (where appropriate) short-term post-diagnostic interventions, alongside opportunities for service users to receive support to access mainstream services and provision.

Using a Managed Care Network model

The proposed service model was to operate as a Managed Care Network, with a small team consisting of one of each of the following:

  • Community Nurse
  • Administrator
  • Clinical Psychologist
  • Assistant Psychologist.

The team was envisaged to act as a central point of access for all referrals into the Managed Care Network. They would then take on a co-ordinating role ensuring communication and continuity between services, which would allow individuals to be referred into the services that most suited their needs.

Figure 1: the Managed Care Network (click on image for enlarged view)

The team was to provide the following services:

  • screening
  • assessment
  • diagnosis
  • interventions
  • follow-up services.

Interventions

Our group programme is available to everyone who accesses the service. This focuses on understanding Asperger syndrome, managing anxiety and handling social situations. In addition we also offer 1:1 interventions for those who struggle to access groups, or for those with additional more complex needs. These include:

  • cognitive behavioural therapy
  • personality, relationship and sexuality therapy
  • systemic family therapy
  • group therapy.

We provide risk assessment and management plans for complex and forensic patients.

Awareness training is offered to professionals to ensure good practice is shared with other sectors and agencies, and carers and families can access psycho-education sessions to develop better understanding and awareness of autism.

Follow-up services

We adopt tried and tested approaches from other nationwide services such as our step-down service.#1 This allows our service users to remain in touch with the team for advice and guidance at monthly phone clinics six-months post-discharge, which helps our service users to feel safer at the point of discharge.

Beyond this the role of the team within the network is to embed itself in the local community, and to support our service users to access mainstream and specialist provision. This involves us working alongside local services such as:

  • schools and colleges
  • housing associations
  • primary and secondary healthcare services
  • services for people involved in the criminal justice system
  • services for those receiving support for alcohol and substance misuse problems.

As well as the ‘step down’ safety net service, when a service user has completed their programme of intervention from our service we also spend time with them thinking about their next step. We have supported people to access employment support services, our Trust’s Recovery College, social services support and psychological therapy services.

We also encourage service users to sign up for other social events and opportunities. To provide them with opportunities to consolidate and grow the connections made between group members, we run regular social evenings which staff attend.

Our impact

Since we opened in June 2014, the team has received nearly 600 referrals. From the outset we have nurtured effective partnership working with our service users and their networks of support, such as our regular attendance at carers meetings and by encouraging our service users to be involved in recruitment and service-related decisions. We feel that this has enabled us all to develop a shared understanding around the limits of what the service could realistically achieve.

Going forward, our challenge is to find innovative ways to meet the unmet needs we are uncovering. These include:

  • difficulties accessing autism specific social care assessment and provision
  • support with arranging/accessing physical and mental healthcare appointments
  • social isolation and family breakdown
  • negotiating the benefits system.

To do this we need to demonstrate our value to commissioners and to lobby for further resources, as well as establishing collaborative partnerships with third sector providers.

We are especially indebted to the Northampton ADHD and Asperger’s team for their advice and guidance around our ‘step down’ service exit model.

References

Barnard, J., Harvey, V., Potter, D. and Prior, A. (2001) Ignored or ineligible?: The reality for adults with autism spectrum disorders. The National Autistic Society

Department of Health (2009). The Autism Act

Department of Health (2010). THINK AUTISM: Fulfilling and Rewarding Lives, the strategy for adults with autism in England.

Date added: 18 January 2017