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A Scottish Executive Review of Speech and Language Therapy, Physiotherapy and Occupational Therapy for Children and Speech and Language Therapy for Adults with Learning Disabilities and Autistic Spectrum Disorder

Part 2 Introduction

BACKGROUND TO THE REVIEW

1. In early 2002, the Scottish Executive embarked on a national review of Speech and Language Therapy, Physiotherapy and Occupational Therapy for children and Speech and Language Therapy for adults with learning disabilities.

2. The review was called in response to a number of concerns:

• There has been a significant increase in funding for Speech and Language Therapy for children with records of needs in recent years yet children still find it difficult to access services.

• The Riddell Advisory Committee Report ¹ into the Education of Children with Severe and Low Incidence Disabilities (SLID) highlighted the problem of shortages of therapists leading to unacceptable waiting times for children with SLID. It raised questions about the current management and organisation of therapists and reported some dissatisfaction with funding mechanisms.

• The report of the Learning Disabilities Review, The same as you?² stated that adults with learning disabilities found it difficult to access Speech and Language Therapy. It recommended that the review of children's therapy recommended by the Riddell Committee ¹ should be extended to cover Speech and Language Therapy for adults with learning difficulties.

3. The review, therefore, intended to address issues such as continued shortages of therapists, the management of therapy provision and current funding mechanisms particularly for children's therapy.

4. The review was guided by a steering group made up of representatives from the Scottish Executive Education Department and the Scottish Executive Health Department as well as advisors from a number of stakeholder groups (see Appendix A for membership).

5. Queen Margaret University College provided consultancy to the review team. The University College undertook an investigation of Speech and Language Therapy, Physiotherapy and Occupational Therapy for children and Speech and Language Therapy for adults with learning disabilities as part of the review. The investigation is described in Chapter 4. In addition, a focus group was organised by the Scottish Consortium of Learning Disability to seek the views of adults with learning disabilities who use Speech and Language Therapy. The views of parents were fed into the review by the parent representative on the steering group.

TERMS OF REFERENCE

6. The terms of reference of the review were:

• An examination of the supply of Speech and Language Therapists, Physiotherapists and Occupational Therapists to meet the needs of children requiring these therapies

• An examination of the management and organisation of Speech and Language Therapists, Physiotherapists and Occupational Therapists for children with special educational needs

• An examination of how the current funding mechanisms for Speech and Language Therapy for children operate and how these might be improved

• Consideration of whether the funding mechanisms for Speech and Language Therapy, Physiotherapy and Occupational Therapy for children should be aligned

• An examination of the supply, management and organisation of Speech and Language Therapy for adults with learning disabilities.

7. The Group interpreted the terms of the review to include the supply, management and organisation of Speech and Language Therapy for adults with autistic spectrum disorder (ASD) as this group of service users fall within the scope of the The same as you?²

The review did not aim to evaluate current models of service provision or define 'effective practice'. It also did not seek to ascertain the therapy needs of the children and adults with learning disabilities and/or ASD. While these are important aspects of service delivery, they fell outside the remit of this review. Instead the focus was on organisational and management issues and possible improvements in these within existing service models.

8. In the report we use the terms Occupational Therapist, Physiotherapist and Speech and Language Therapist (OT, PT and SLT) to refer to therapists from these professions who have undertaken a programme of study leading to state registration. We use the term clinical support worker to refer to NHS employees who work under the supervision of state registered therapists including therapy assistants and technical instructors. We use the term OT assistant when referring to Local Authority support staff. The role of each profession when working with children and adults with learning disabilities is described in Appendix B. An examination of the role of therapists was also outside the remit of this review.

DEFINING THE POPULATION IN NEED

Children requiring therapy

9. It has been estimated that there are just under one million children (972,000) under the age of 16 living in Scotland and a further 389,000 16 to 21 year olds. ³ For the purposes of the review the term children includes any person aged 18 or under.

10. A number of Scotland's children will be given a diagnosis, label or administrative category which gives some indication of their need for specialist health, education and/or social work services. These categories include 'disabled children', 'children in need' and 'children with special educational needs'. The review recognises the importance of avoiding unnecessary stigmatisation of children through labelling. However, these categories can provide important information to assist in the appropriate targeting of resources when applied consistently.

11. Children experiencing difficulty accessing the school curriculum are identified as having Special Educational Needs. Many of these pupils are assessed by Educational Psychologists and where appropriate other professionals. Local Authorities are obliged to open a 'Record of Needs' where children have pronounced specific or complex special educational needs requiring ongoing review. The Scottish Executive's education statistics reported that there were a total of 45,701 pupils with Special Educational Needs in Scotland in 2001 and 16,137 pupils with a Record of Needs. ⁴

12. A report for Joseph Rowntree Foundation ⁵ indicated that there were approximately 33,000 disabled children in Scotland. Earlier research by Joseph Rowntree Foundation ⁶ reported that numbers of children with high levels of support needs, including those with nursing care needs, are increasing. The Riddell Committee estimated that 1.1% of the school population or 8,745 children in Scotland have Severe Low Incidence Disability. ¹

13. It is difficult to predict or estimate how many of the children within each category described above are likely to need therapy. There is evidence that these categories are applied inconsistently. ^1,7 Also the nature and extent of therapy needed is difficult to predict from such categorisations. However, it is likely that children with more severe impairments will have a greater need for input from a therapist.

Adults with learning disabilities

14. The review adopted the definition of a learning disability used in the report of the review of services for people with learning disabilities The same as you?. ² It stated:

15. "People with learning disabilities have a significant, lifelong condition that started before adulthood, that affected their development and which means they need help to:

• Understand information

• Learn skills; and

• Cope independently."

16. The review also stated that people with learning disabilities should have a range of support and services to meet their needs, which may include complexities arising from both learning disability and from other difficulties such as physical and sensory impairment.

17. The report went on to estimate that there were around 100,000 people with mild or moderate learning disabilities and 20,000 people with profound learning disabilities or multiple disabilities in Scotland. Research has indicated that numbers will increase by 1% per year over the next 10 years. ⁸

18. Assuming that the same prevalence rates apply to the child population as the adult population, there were approximately 24,000 children and approximately 96,000 adults with learning disabilities in Scotland in 2000.

19. It has been estimated that at least 50% of people with learning disabilities have communication difficulties. ^9,10 This suggests that approximately 48,000 adults with learning disabilities experience communication difficulties. It does not indicate how many of these adults require input from a Speech and Language Therapist or the level of input required. However, the Public Health Institute of Scotland is undertaking a health needs assessment for people with learning difficulties which is likely to report in June 2003.

Adults with autistic spectrum disorder

20. A recent publication by the Public Health Institute of Scotland ¹¹ reported that there has been no formal work to identify the prevalence of autistic spectrum disorder amongst adults. However, the report estimates the prevalence rate among children to be 60 per 10,000. It also highlights the trend towards increasing numbers of children and adults being identified as having disorders on the autistic spectrum than in the past.

LEGAL DUTIES OF AUTHORITIES TOWARDS DISABLED ADULTS AND CHILDREN

21. Disabled adults and children requiring therapy are often reliant on a number of agencies and services. Each has different areas of statutory responsibility.

Legislation impacting on community care services

22. Disabled adults are entitled to a community care assessment under the NHS and Community Care Act (1990). Children under 16 do not have the same entitlement. However, if the child is 'chronically sick or disabled' under the Chronically Sick and Disabled Person's Act 1970 and the Disabled Persons (Services, Consultation and Representation) Act 1986, they have the same entitlement as adults to a disabled person's assessment from the Local Authority. The term 'chronically sick or disabled' includes people with mental health problems or learning disabilities. Local Authorities also have a statutory duty to ensure that disabled people receive any necessary household equipment and adaptations to their home. If a child has Record of Needs they are entitled to a Future Needs Assessment before they reach 16 to consider what provision they will require post 16.

Legislation impacting on children's services

23. Local Authorities have a statutory responsibility in relation to 'Children in Need'. They must assess the needs of disabled children and provide day care, after-school care and holiday care if needed. Under Section 19 of the Children (Scotland) Act 1995 they are required to prepare and publish plans for children's services.

Legislation impacting on education services

24. Under the Education (Scotland) Act 1980, Local Authorities have a duty to secure adequate and efficient provision of school education for their area including special education. They must establish which children in their area, who are aged 2 or over but under school leaving age (16) have pronounced, specific or complex education needs which require ongoing review. They must assess the needs of these children and open a Record of Needs. Education authorities are also able, but not obliged, to open records for children under 2. Parents have the right to make representations and submit evidence during the assessment and recording process and can appeal against a decision not to record. They also have the right to request a certain placement. Under Section 2 of the more updated Act, ¹² legislation requires that education authorities ensure that education is directed to the development of the personality, talents and mental and physical abilities of the child or young person to their fullest potential. (See also Section 3.2 for description of the DDA (1995) and Education (Disabilities, Strategies and Pupils' Educational Records (Scotland) Act 2002).)

FUNDING OF SPEECH AND LANGUAGE THERAPY PROVISION IN SCOTLAND FOR CHILDREN WITH RECORDS OF NEEDS

25. Significant changes to the funding of Speech and Language Therapy for children were made in the 1990s. These are described below.

26. In mid 1991, it was identified that the demand for Speech and Language Therapy provision for children with a Record of Needs was rapidly outstripping supply. Many children were not receiving the Speech and Language Therapy specified in their Record. In 1992, following a well-publicised campaign by parents, Ministers announced an additional 2 million per year for speech therapy for recorded pupils. This was additional funding, not a transfer from the health programme, and was included in the local government finance settlement for 1992-93 to allow Local Authorities to contract with Health Boards for the provision of speech and language therapy for recorded pupils.

27. It was further agreed that Local Authorities, jointly with Health Boards and in consultation with The Scottish Office, would carry out an assessment of the needs for Speech and Language Therapy provision in Scotland for both recorded and non-recorded pupils. After research it was estimated by the working group set up to undertake this assessment that there were 5,642 recorded children in Scotland in 1993 requiring Speech and Language Therapy. Taking account of the needs of children for initial assessment, follow-up action and in some cases extended therapy, the group estimated that this would require an establishment of 126 therapists. On the basis of that assessment it was calculated that to provide fully for the Speech and Language Therapy needs of all recorded children in Scotland, including salaries, travel and other costs, would cost 3m in 1993-94.

28. As regards non-recorded children, the group estimated that around 8% of children in Scottish schools would, at one time or another, require some Speech and Language Therapy provision. They estimated the needs of children without records could be adequately provided for through the employment of 304 speech therapists at a cost of 7.5m.

29. In the light of the working group's findings on recorded pupils, Ministers agreed that a further 1m be included within the local government finance settlement to support contracts made between education authorities and Health Boards for children with a Record of Needs. Unlike the original announcement, this additional 1m was funded by a transfer from the health programme. Responsibility for funding provision of Speech and Language Therapy for non-recorded pupils remained with Health Boards.

30. There has been no systematic attempt to assess the precise impact that these new funding arrangements have had. There was a steady rise in the numbers of Speech and Language Therapists in the NHS in Scotland from 1994 to 1997, equivalent to 118.5 whole-time equivalents or 22%. It had been hoped that supply and demand would be broadly in balance by 1998. However, the Department received representations, following its discussion paper on special educational needs in 1998, that there remained localised shortages for specialist skills and in certain geographical areas. In view of this, funding for speech and language therapy provision for recorded pupils was increased from April 1999 to 6.5m per year. This funding is included as part of the Local Authorities grant-aided expenditure settlement from the Scottish Executive.

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