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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 6 Speech and Language Therapy for Adults with Learning Disabilities and/or Autistic Spectrum Disorder

1. In this section we report the information gathered about the organisation, supply and demand of Speech and Language Therapy for adults with learning disabilities and/or autistic spectrum disorder (ASD). Questionnaires were returned by 13 of the 15 NHS Board areas (87%).

Introduction

2. As stated earlier, the Scottish Executive extended the terms of the review to include the supply, management and organisation of Speech and Language Therapy (SLT) for adults with autistic spectrum disorder (ASD) as well as adults with learning disabilities. This was because this group of service users fall within the scope of the The same as you? ². In this section of the report, therefore, we refer to three distinct client groups, namely:

adults with learning disabilities but no ASD

adults with learning disabilities and ASD

adults with ASD but no learning disability.

3. Speech and Language Therapy for adults with learning disabilities and/or ASD are either delivered by therapists who work solely with this client group or therapists who work with multiple client groups. In the report we refer to these as specialist and generic therapists respectively.

4. The majority of services are provided by Speech and Language Therapists employed by the NHS. A small number of therapists are employed in the voluntary sector.

SUPPLY OF SPEECH AND LANGUAGE THERAPY TO PEOPLE WITH LEARNING DISABILITIES AND/OR ASD

Numbers of NHS SLT posts established to provide services to people with learning disabilities and/or ASD

5. There are a total of 53.55 posts for state registered SLTs and four posts for clinical support workers established in Scotland to provide a service to adults with learning disabilities. Some of these adults with learning disabilities will have ASD. A small number of these posts also provide a service to adults with ASD but no learning disability. It was not possible to determine the proportion of services provided to adults with ASD, however, the extremely low referrals for adults with ASD in 2001-02 is an indication that the proportion is small.

Skill mix in NHS SLT therapy

6. The majority of SLT posts for state registered therapists are graded at band 2 (56%) and a substantial number are graded at band 3 (25%) (see appendix M). There are the equivalent of only 2.7 WTE posts for band 1 SLTs, all situated in NHS Lothian.

7. Clinical support workers are employed in only five NHS Board areas. Only 7% of the total posts are support posts. This gives a qualified to unqualified staff ratio of just over 13 state registered therapists to every one clinical support worker. This is marginally higher than the Scottish average for SLT across all clinical areas of 12:1. ²³

8. The numbers of state registered Speech and Language Therapists per 100,000 population were calculated (see Appendix N). In the 12 areas for which we have complete data, these range from 0.22 in Shetland to 1.71 in Lanarkshire.

Recruitment and Retention Issues

Vacancy rates

9. Overall, vacancy rates reported for posts delivering a service solely to adults with learning disabilities and/or ASD across Scotland were low (see Appendix O). Several areas had no vacancies for posts working solely with adults with learning disabilities and/or ASD. However, three services had significantly higher rates than others, namely Renfrewshire and Inverclyde Primary Care Trust at 41%, Ayrshire and Arran at 38% and Tayside at 37%. An additional four areas reported experiencing difficulties recruiting qualified SLTs to work with adults with learning disabilities and/or ASD despite having very low vacancy rates at the time of the survey. In areas with high vacancy rates it should be noted that the actual number of posts vacant is relatively low, ranging from 1.2 to 2 WTE posts.

10. 3.8 of the 5.8 WTE vacant posts across Scotland had been unfilled for three months or more. There were 0.7 vacancies for clinical support workers. These included a newly created 0.5 WTE post funded by a Local Authority. Rates of maternity leave among SLTs working solely with adults with learning disabilities and/or ASD and instances of sick leave were also low.

Factors influencing vacancies

11. Managers were asked to comment on any factors that contribute to recruitment difficulties and any strategies they have tried to recruit or retain staff. The factors reported were diverse. Three areas stated that this clinical area is highly specialised and recruitment of appropriately experienced therapists is difficult. Three areas reported that it is difficult to attract therapists, particularly new graduates, to work in this specialism as it is perceived as a less attractive option. Some reported that generic posts which cover both children and adults can change this perception. Four areas in total stated that mixed posts ease recruitment difficulties. However, the manager of an island-based service also expressed the view that recruitment difficulties can result from therapists having to manage complex caseloads.

12. NHS Lothian, the only area with band 1 posts, reported that it is easier to attract new graduates than more experienced staff. Along with a second area, they stressed the importance of student placements to develop the next generation of therapists.

13. The most frequently reported factor leading to the successful recruitment and retention of staff was the implementation of family-friendly policies and flexible working. Support and professional development opportunities were also perceived as highly important factors influencing staff retention. Managers referred to induction programmes, shadowing, in-house training, mentoring, secondment opportunities, peer review, project work and opportunities to work outwith the clinical area from time to time to maintain generic skills.

14. Finally, the structure of services was seen as influential. Two managers expressed concerns about SLTs being spread thinly over several community learning disability teams or LHCCs. Another manager had reviewed the service's skill mix as a way of tackling staffing issues. One manager was concerned that a lack of career structure means that therapists are trained in this specialist area and then move to a new area to take up a higher-grade post. One manager expressed the view that recruitment had become easier since the recent realignment exercise as this had led to improved salaries.

DEMAND FOR SPEECH AND LANGUAGE THERAPY FOR PEOPLE WITH LEARNING DISABILITIES AND/OR ASD

A summary of demand for NHS SLT for adults with learning disabilities and/or ASD across Scotland

15. The table below summarises the numbers of adults with learning disabilities and/or ASD referred to SLT in 2001/2, discharged from these services in the same year, on the caseload of Speech and Language Therapists in Scotland in April 2002 and on a waiting list to see a SLT in April 2002. Only partial data were available for several areas and so these figures are likely to be underestimated.

Referral information

Table 6:1 - SLT referrals, discharges, caseloads and waiting lists

Notes
All figures
Figures for Grampian and Highland were unavailable
Argyll and Clyde - Lomond & Argyll PCT do not operate a referral-based system for these groups, so no figures provided
Referrals
Argyll and Clyde - no figures for Renfrewshire and Inverclyde PCT as well as Lomond & Argyll PCT
Current cases
Argyll and Clyde - current cases are for Renfrewshire and Inverclyde PCT only and these are estimated
Discharges
No figures available for Renfrewshire and Inverclyde PCT, Borders, Dumfries and Galloway, Fife, Lanarkshire, Lothian, or Tayside.

16. Referral rates per WTE qualified post ranged from 10 referrals in Ayrshire and Arran, Lanarkshire and Orkney, to 100 referrals in Shetland (see appendix P). These rates give some indication of differences between NHS Board areas in terms of demands placed on services. However, further research is needed to explain the differences between some areas.

17. The referral rate per 1000 population varied considerably from area to area (see
Appendix Q). The mean rate was 0.2 referrals per 1000 population. The range was from
0.06 referrals per 1000 population in Dumfries and Galloway to 0.5 in Borders. Again, further investigation is needed to understand these differences.

18. Managers from nine of the 13 areas stated that they have a procedure in place to prioritise referrals. Two of the services with no procedure also had the highest numbers of people referred per WTE, although the actual numbers of referrals in one of these areas were relatively small. One area did not respond to this question. Of the nine areas with a procedure, three said that the procedure was devised locally. The remaining six stated that the procedure was locally devised and follows guidance from professional bodies or special interest groups.

Numbers of adults with learning disabilities and/or ASD who are current cases of qualified NHS SLTs

19. As stated earlier, a total of 2126 adults with learning disabilities/ASD were on the caseload of a SLT in April 2002. These cases are presented per WTE SLT in Appendix R. The figures do not represent an average caseload per therapist as caseload may vary between grades of staff. Caseload size might depend on level of management responsibility, level of experience or nature of work undertaken. Some therapists, therefore, will have higher numbers on their caseload than the figures reported below. Others will have lower numbers. The figures are intended to allow comparison of the relative demands placed on services in each area.

20. The mean number of cases per WTE qualified SLT was 66. The rates ranged from 29 cases per WTE SLT in Lothian to 180 in Shetland. The areas with higher numbers of cases per WTE SLT were all largely rural areas or island authorities.

Waiting list information

21. Waiting list information is presented in Appendix S. There was a total of 284 'adults with learning disabilities but no ASD' and 'adults with learning disabilities and ASD' waiting to see a SLT in Scotland in April 2002. There were no 'adults with ASD but no learning disability' waiting for a service.

22. The mean number of people with learning disabilities and/or ASD waiting per WTE was 6.2. Five areas had no adults with learning disabilities/ASD waiting to be seen. Many others had relatively low numbers waiting per WTE therapist, ranging from 1.6 to 7.8. Borders, however, had a very much higher number waiting per WTE therapist than other areas at 42.3.

23. Managers were asked to give the longest time that an adult with learning disabilities and/or ASD currently on the waiting list had waited for a service. The longest wait was reported by Renfrewshire and Inverclyde PCT at more than one year. In another four areas the longest wait was between eight and nine months.

MEETING THE NEEDS OF ADULTS WITH ASD BUT NO LEARNING DISABILITY

24. All of the services indicated that they work with 'adults with learning disabilities but no ASD' and 'adults with learning disabilities and ASD'. In addition, six services stated that they also provide a service to 'adults with ASD but no learning disability'. However, there are indications that services for the last client group are poorly defined and there are gaps in service provision.

25. For example, managers were asked to estimate the proportion of posts providing a service to the three categories of client. Two services that stated that they provide a service to 'adults with ASD but no learning disability' reported that no posts were allocated to provide this service. The remaining four services were unable to allocate proportions.

26. In addition, four of the services that stated that they provide a service to 'adults with ASD but no learning disability' had not had any referrals for adults with ASD in 2001-02 and the other two were unable to give this information. From the figures provided, it appears that only one service, namely Greater Glasgow, received referrals for adults with ASD but no learning disability in 2001-02 even though they stated that they do not provide a service to this group. A second area appeared to group together adults with learning disabilities and adults with ASD and it was not possible to differentiate numbers within these client groups.

27. Nine services indicated that they do not work with 'adults with ASD but no learning disability'. In two areas the managers stated that clients with Asperger's Syndrome were occasionally referred to 'adult acquired' or 'adult mental health' services. However, in five areas where a service is not provided to adults with ASD by a learning disability service or generic service, managers were not able to identify who does provide this service.

MODELS OF SERVICE DELIVERY

28. As part of the investigation, managers of SLT in two areas were interviewed. In one of these areas, the service had adopted a particular service delivery model called Total Communication ^v (TC). The model used is described below.

29. TC differs from traditional therapy. It is not based on a medical model which aims to 'fix' individual impairment but instead adopts a social model approach and recognises the need for society to adapt to accommodate individuals' different communicate styles and needs. Instead of individuals being referred for therapy by an SLT, training is delivered to the people with whom the person spends most time, that is, parents, carers and support staff, to enable them to create supportive communication environments for people.

30. A number of training modules are provided as part of the model. These are attended by mixed groups of stakeholders such as parents and staff from health, social care and voluntary agencies. Integral to the TC approach is the use of Communication Link Workers (CLW). The role of the CLW is to promote the creation of a TC environment by liaising with service managers, colleagues and the SLT.

31. The manager of the service gave the example of one man who had received individual therapy for 25 years. Through TC training it was identified that the man had developed a repertoire of signs at school that he was not using as no-one in his current service knew about them. These signs were reintroduced, along with new communication methods which were less confrontational, for example, using fewer questions. His parent noticed such a difference in the man's communication following the training that she now champions this as a more effective approach than individual therapy.

32. The Total Communication model is noteworthy in that one WTE SLT has provided a TC service to a large number of people over a very large rural geographical area. In the two-and-a-half years since introducing TC, the service has provided 379 training courses. There are a further 238 people waiting for training.

Case studies

33. The working group commissioned the Scottish Consortium for Learning Disability to discuss with adults with learning difficulties their experiences of speech and language therapy. Two case studies illustrating some of the difficulties of securing therapy, and the benefits to adults with learning difficulties, are provided at Appendix T.

CONCLUSIONS

Supply and demand

34. There are few opportunities for new graduates to gain experience of working with people with learning disabilities early in their career. This has traditionally been seen as one of the 'Cinderella services' and it has been difficult to recruit to this field. There are likely to be some interesting developments in services as a result of the implementation of The same as you?². This should make the specialism a more attractive and challenging career option for SLTs.

35. There was some variation in the numbers of state registered Speech and Language Therapists per 100,000 population in the 12 areas for which we have complete data. This suggests some inequities in the level of service available in NHS Board areas when judged on population alone.

36. Vacancy rates overall are low although there are higher rates in a small number of areas. Rates of maternity and sick leave are also low.

37. There does not appear to be excessive demands being placed on SLT adult learning disability services. Several areas had no people waiting for a service and many others had relatively low numbers of people waiting. However, these findings contradict the findings of the report The same as you?² which suggested that adults with learning disabilities found it difficult to access Speech and Language Therapy. There are several possible explanations for this. These include:

• people are not being referred because they, their carers or professionals mistakenly think that they would not benefit from an SLT service

• people who perceive themselves as having a need are not referring themselves or being referred because they don't expect to get a service

• people are unsure about what an SLT service can offer

• people do not know how to access the service

• people do not find the service acceptable or suitable for them.

Organisation and management

38. The service for adults with ASD but no learning disability is not well defined or identifiable. This may be one reason why so few of this client group are referred to SLT. It may also be the case that adults with ASD but no learning disability do not view themselves as having a 'need' or as having a need that requires health input.

39. If this client group does have a need that can be met by SLT then the challenge for these services is to be more creative in finding ways to make themselves visible, accessible and acceptable to adults with ASD but no learning disability. People's needs may be identified through their contact with education, employment and other mainstream services, rather than through health and social care services.

40. Finally, the model of service delivery adopted can have a significant impact on the service's ability to meet the needs of people with learning disabilities and/or ASD. New models, such as Total Communication, require closer investigation.

RECOMMENDATIONS

SPEECH AND LANGUAGE THERAPY FOR ADULTS WITH LEARNING DISABILITIES AND/OR AUTISTIC SPECTRUM DISORDERS

Strategic Planning

a) NHS Boards should review access to therapy for adults with learning disabilities and/or ASD, their families and professionals so that their needs can be better met and unmet needs identified. In doing so they should explore why people with learning disabilities and/or ASD experience difficulty in getting a service, when the level of demand on services does not appear to correspond to anticipated levels of need. [Part 6, paras 21; 35]

b) NHS Boards should ensure that services in which SLT is provided encourage and accept appropriate referrals from adults with ASD but without a learning disability. [Part 6, paras 24-27; 37]

c) NHS Boards and Local Authorities should involve adults with learning disabilities and/or ASD and their families in the planning, delivery and evaluation of services. They should also make sure that the communication needs of adults with learning disabilities and/or ASD are taken account of in Partnership in Practice agreements. Local databases of people with learning disabilities should include information about the communication needs of adults with learning disabilities and/or ASD. [Part 6, para 37]

Supply and Demand

d) NHS Boards should develop and implement flexible employment policies to support the recruitment and retention of relevant staff. [Part 6, paras 11-14]

Service Provision

e) SLT services should review and disseminate information about new developments and innovative practice in therapy for adults with learning disabilities and/or ASD. Particular efforts should be made to provide accessible information to adults with learning disabilities and/or ASD and their families. [Part 6, paras 28-32]

Workforce

f) NHS Boards and other employers in conjunction with HEIs should create opportunities for SLT students and new graduates to gain experience of working with adults with learning disabilities and/or ASD in community settings and in remote and rural areas. [Part 6, para 34]

Research

g) The Scottish Executive should fund comparative research on what models of practice produce good outcomes for adults with learning disabilities and/or ASD. [Part 6, para 40]

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