Autism Provision in Northamptonshire

Introduction.

This paper outlines developments in provision for people with autism spectrum disorders that have occurred within Northamptonshire and further a field over the past 10 years. `These developments have been achieved as a result of collaboration between the local authority and a voluntary organisation in order to introduce a specific model of service delivery – the TEACCH approach. Significant improvements, both in levels of diagnosis and of service provision, have been achieved over this time. The paper goes on to discuss the challenges, which have been faced, as well as outlining areas of need, which remain. In conclusion, the significant features of the ‘Northamptonshire model’ are outlined. Within this paper the term ‘mental retardation’ may sometimes be used to describe what would be defined as ‘severe learning disabilities’ within some parts of the United Kingdom.

Acknowledgement of need for development of services.

Autism Independent UK ( formerly The Society for the Autistically Handicapped (SFTAH)) was formed in 1987 by parents of children with autism, to address their concern that there was little provision appropriate to the needs of their children, either within Education or Social Services, and even less likelihood of the situation improving unless action was taken. Professionals within the county too were aware that existing services failed to meet the needs of the autistic population, resulting in some students being placed in costly (and often distant) residential schools and homes. In 1989 the three statutory agencies – Education, Social Services and Health – and Autism Independent UK (sftah) came together to discuss the need for appropriate provision for this client group. A working group was established, with the purpose of reviewing the county’s policies and procedures for children and adults with autism spectrum disorders.

The working group’s final report, produced in 1990, made a number of significant points. Four main areas were identified as requiring development. The following recommendations were made:

There should be inter-agency, multi-professional training, aimed at all those working with this client group, to raise the general level of expertise and service quality.

A specific approach should be adopted, countywide, in order to facilitate the development of consistency and continuity for the autistic population. The selected approach was that developed by Division TEACCH, at the University of North Carolina (UNC) Chapel Hill (Schopler, Mesibov, Shigley and Bashford, 1984). This approach had gained a reputation both for the quality of its research and validation (Mesibov, 1997; Trevarthen, Aitken, Papoudi and Robarts, 1996) and for the comprehensiveness of its services for people with autism.

There should be improvements in assessment and diagnosis.

There should be increased specialisation amongst professionals serving this population, to ensure that skilled and informed support was available.

Initial developments.

As a result of this process, joint funding was made available to work to meet the above goals. This funding secured the following appointments:

A senior educational psychologist, whose remit was to develop specialised, coordinated educational provision supported by an appropriate training programme.

A speech and language therapist to develop an integrated approach to individual communication-needs with parents, carers and schools.

Four family support workers, to work directly with parents, enabling them to develop management strategies, and helping the transfer of skills from school to home.

Diagnosis and assessment.

Increased awareness and expertise within Northamptonshire has brought about improvements in the diagnosis and assessment of autism. Almost all diagnoses are now made within the county’s own diagnostic and assessment services, by way of the local Health Trusts and or Child Development Centre or the statutory assessment procedures for the provision of education to children with special educational needs (1996 Education Act).

The number of costly external specialist diagnostic assessments has significantly reduced.

In 1989, there were 76 children in the county with a diagnosis of autism. By 1993, this figure had risen to 119. In 1999, over 200 children, from a school age population of approximately 103,000, have a diagnosis within the autistic continuum. The prevalence of autism spectrum disorders in Northamptonshire, within the 2 – 19 age ranges, is approximately 20 cases per 10,000 of the total population, closely reflecting the levels of incidence suggested by Wing and Gould (1979). The major increase in identification has been in children with mild or moderate autism, who may in the past have been misdiagnosed: this also corresponds with findings reported elsewhere (Howlin, 1998).

Development of provision.

Education.

Northamptonshire has moved rapidly to develop appropriate services for people with autism spectrum disorders. The decision was made to start within the classroom, as this is an environment, which provides structure to all children, be they ‘autistic’ or ‘neuro-typical’. Furthermore, the decision was made to first develop provision for younger children – aged 3-11 – so that continuity of programming could be provided to these children throughout their school life. Services initially concentrated on the primary age range. TEACCH classrooms were developed within both mainstream and special schools across the county. The discrete classes have a basic child: staff ratio of 5:2. There are now over 120 places in specialised TEACCH classrooms across the county, providing an appropriate educational environment to children aged between 3 and 19. Over 50 further children, mostly with milder autism spectrum disorders are supported within mainstream settings. The LEA has also concentrated on providing specialised training for learning support assistants, also possible for other staff working within the school.

Social Services.

After initial developments were made in the classroom, and the efficacy of the TEACCH approach proven, specialist development in social care settings followed. 1993 saw the establishment of a 6-place group home for children with autism spectrum disorders. This enabled some children who had previously been placed out of the county to return, and to live in a structured environment closer to their families. The development of specialised respite care services soon followed. This was in recognition of the specific needs of this client group, and the inappropriateness of attempting to place them within other services designed for children with mental retardation (Mesibov, 1990; Van Bourgondien and Elgar, 1990).

The TEACCH approach has been fully adopted within these units, ensuring consistency and continuity between home, school and respite care. Child: staff ratios are set at 2:1, to provide effective treatment. As with colleagues in Education services, substitute staff receive training and instruction: these staff also help in undertaking a number of short-term interventions, such as supporting children who do not have a school placement.

Specialist play and activity schemes are also provided during school vacations, as well as at weekends, across the county. These schemes are often sited on school premises, these provide an environment to minimise disruption for the children. A voluntary organisation funded, a team drawn from Education, Social Services and voluntary staff provides staffing.

As the years have passed, and children have matured into adults, so it has been necessary to develop a range of services for young adults within the county. Social Services have established dedicated respite care and vocational placements within its services for adults with mental retardation.

Challenges in developing the use of TEACCH within Northamptonshire.

It would be nice to suggest that service development over the past decade has been a seamless, effortless process, this has sadly not been the case. A number of significant challenges have faced both service providers and people with autism and their families, and a number remain. It may be helpful to outline some of these issues.

Fragmentation of provision.

Despite initial agreement that a multi-agency approach was essential to effectively address the needs of people with autism, the partners in this approach – Education, Social Services, voluntary agencies and Health – all have differing agendas and priorities. All are working under different legislation. All have different duties and expectations. All are constrained both by their budgets and by competing demands from other service users.

The agencies do not even agree when childhood ends. Medical legislation deems childhood to cease at 16. According to the laws governing education, one can continue to be a child at 19. Meanwhile the Children’s Act 1989, which governs social care provision states that childhood ends at 19 (though, in some cases, it can continue until 21). The situation, clearly, is somewhat confused.

Fragmentation also exists between services internally. In part this results from central government action over the years to limit the power of local authorities. Developments in education appear to have created a gap between the local authority and schools, with increased autonomy of individual schools and their boards of governors. Health services have been split up into Health Trusts/Authorities, who commission and purchase services, and the Healthcare Trusts, who provide them. Within Social Services, services for children, services for adults, and the training and regulatory inspection departments are all very separate entities.

The impact of this fragmentation has been frustrating delays in service planning and development especially within adolescent adult sectors.

Bias against the adoption of external approaches.

It is imperative to keep this in proportion, but some people have a clear antipathy to ideas from ‘outside’ the UK. Though only a minority, some of these people hold considerable influence, and altering their perceptions can be difficult. Also there are some policymakers, who have little or no understanding of the unique needs of people with Autism. Nationally, there seems to be a rather entrenched and limited perception of the TEACCH model. It is considered primarily in terms of its classroom aspects of workstations and ‘jigs’ (Jordan and Powell, 1995), and has been criticised as providing experience-limiting training rather than life-enhancing education (Powell and Jordan, 1997).Acknowledging the lack of specialist provision in the UK has led to criticisms that the approach is unworkable without North Carolina’s life-long framework. However, the absence of the necessary inter-disciplinary linkages in much of Britain does not invalidate the approach. It is vital to remember that,

“the TEACCH approach is most effective when it is applied across age groups and agencies. Division TEACCH believes that the interests of people with autism are best served with coordinated and co-operative programming based on consistent principles over a lifetime. Our ¼principles have stood the test of time; adults brought up using those practices are now the most productive and successful in the world, with lives that are full, rich and meaningful”. (Mesibov, 1998).

Services within Northamptonshire are attempting to provide such a service to people with autism. The county’s multi-agency approach reflects its belief that the use of a consistent common methodology – inside and outside the classroom – is essential.

The current cultural imperatives towards normalisation and inclusion, which inform education and social care legislation, seem to make the prosthetic aspects of the approach unpalatable. Howlin (1998), acknowledges the usefulness of the approach in improving work skills, but stresses the need to plan to reduce cueing and structure. It is essential that policy and service provision acknowledges the ‘culture of autism’ (Mesibov and Shea, 1998), and respects the differentness that autism creates. The goal of services, both in education and beyond, must be to endow the child with autism with skills and strategies for adult life within society. Obsessing about compliance with the National Curriculum or about the ‘normality’ or acceptability of visual structure should be secondary matters. Effectiveness should be the prime consideration.

Current situation.

Although there has been great development within Northamptonshire over the past 10 years, a number of challenges remain. A recent survey by SFTAH at el of service provision within the county has highlighted a number of areas of service shortfall that require improvement, such as:

a) the understanding of, and the needs of clients with autism by senior management within education and care divisions.

As of late, service development and commitment in some areas has slowed-down. Failure to recognise the need for continued quality training within all departments is clearly reflected in the reduced numbers is an issue of grave concern and cannot be emphasised enough. The slow-down of the autism provision within the county of Northamptonshire squarely rests with senior management of the various services.

b) in the area of immediate post-diagnostic work.

As key personnel anywhere move on, commitments sometimes waver. Development has sometimes been reactive, and even where appropriate provision exists, the quality of implementation can be variable. Moreover, working together in effective partnership with parents and carers can be challenging for professionals, and difficulties continue to arise within Northamptonshire as elsewhere (Beresford, 1994;Brady, 1998).

Significant development still needs to be carried out in the area of adult provision. Difficulties in achieving this can be attributed to three main causes:

1 Lack of adult diagnoses.

Very few adults in county have a diagnosis. It has therefore difficult to convince policymakers of the need to develop services for a client group currently seen as largely non-existent. Only by systematic aggregation of all information on children with diagnoses, indicating clearly when these children would become adults, and their likely level of need, has any forward movement been achieved.

2 Normalisation.

From the mid-1980s, there has been radical change in the provision of services to people with mental retardation. People have moved out of institutions and into the community. Industrial-model day centres have been transformed into social centres, offering a range of creative and expressive activities (Gilbert and Scragg, 1992). Thus when suggestions were made that these services were not the most effective for people with autism, this is sometimes viewed as anathema and a return to the ‘bad old days’. This is dealt with by pointing to the unique needs of people with autism (Mesibov, 1990), and by showing the effectiveness of existing structured services within children’s services.3 Shrinking resources.

Throughout the decade the local authority has faced challenges due to an increase in statutory duties, as a result of changes in legislation, which have had to be met at a time of budgetary constraint.

Significant features of the Northamptonshire model.

Despite the challenges, which have been outlined above, Northamptonshire has been uniquely successful within the UK in providing a countywide model of service provision to children with autism spectrum disorders. Whereas the national norm is for only 1 child in 14 to be in specialist provision (Jordan, Jones and Murray, 1998), within Northamptonshire over 60% of children are in TEACCH classrooms, with other pupils receiving support in mainstream schools. The quality of Northamptonshire’s services is nationally recognised, and a recent external audit of the authority described them as one of its main strengths (Audit Commission, 1999).

A number of significant features need to be in place and maintained to ensure the success of this approach:

the commitment to inter-agency collaboration, with the clear long-term aim of developing an integrated system for both children and adults and their families.

the progressive development of a unified approach, built both upon increasing knowledge and awareness of autism, and from an acknowledgement of the need for consistency and continuity in service provision.

the provision of high quality training for all professionals working in the field of autism, both in specialist and in mainstream settings.

the development of services, which enjoy the support and confidence of parents, together with a network of informed professionals who are accessible to them.

Other Aspects:
the interest in the Northamptonshire’s work from people outside the county. Many local authorities in the UK are looking to use Northamptonshire’s model as a blueprint in developing their services for this client group.

the international dimension of the approach has been vital. Throughout the development of TEACCH in Northamptonshire, the close links with North Carolina have been crucial. This linkage has been important in maintaining the quality of practice, and preventing ‘therapist drift’ (Jordan and Powell, 1996). Importantly also, the regular presence of staff from Division TEACCH has ensured high attendance at the county’s training courses, which has in part financed ongoing development.

 

The achievement of an effective model of service delivery with relatively modest financial outlay. The services that have been developed have largely been financed from within existing budgets, or by redirecting money, which would have been spent elsewhere (for example, on out-of-county residential school placements). The TEACCH seminars and workshops have provided regular, accessible training to local staff at an affordable cost. Moreover, these seminars and workshops have generated significant income for service industries within the county – estimated at over £1.5m. All of this helps to create a positive attitude towards autism.

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