A Positive Proposal

www.nationalautistictaskforce.org.uk  October 8th 2018

contact us  on positiveproposal@nationalautistictaskforce.org.uk

(No, It’s Not Just About Autism…)

This is the missive sent to the Task and Finish Groups advising the government about autism.  It’s important to note that it’s not just about autism

I am writing as lead for the Communication, Advocacy and Family Involvement Group (GNAT) of the National Autistic Taskforce, (NAT) and also strategic advisor to the NAT, which was launched at the beginning of this year with a generous, unsolicited, one-off donation from Dame Steve Shirley.

We are particularly focussed on people with the highest support needs.  We think a new support role is needed to address the central place of communication in realising the aims of the Mental Capacity Act and of putting people at the centre of their own care.   Without such support, ‘living up to’ those aims is likely to be purely gestural.

Our thoughts about this have been developing over the last two or three months and we are ready to see if SLTs’ Workforce development remit would support the development of this new role.  Something close to our ideal of a Communication Support Worker (CSW) is in operation within the Health Service in the context of mainly autistic learning disabled people, who are still in dedicated small-scale residential settings run by the NHS, please see attachment below (see also, Using technology – Ann Harber and Katie Nurse – Network Autism).

It’s very clear, as our GNAT slogan says, that this is Not Just About Autism: we need to think in terms of every care home setting having a certificated support worker whose job would be helping initiate and maintain contacts with family and friends, and also people in positions of authority in people’s lives.  An equally important part of the job would be as much about finding fun things to enjoy and share and would involve sharing knowhow that is not specific to Speech and Language as such.  We propose that developing the training should be led by SaLTs in partnership with autistic, learning disabled and dementia insiders – as a co-production with genuine input from those stakeholders.   We also note that this would fundamentally improve the career structure of support workers by giving them a promotion (but not into an office), a certification, somewhat better pay and a job that is more rather than less enjoyable than more basic support work [could it also be a step towards a higher qualification??].

We suggest that training should include learning how to do a gentle introduction to the Internet via tablets and spontaneous sharing – including exploring family connections –  while being able and willing to find out what alternative ways of communicating may be preferred .  We suggest that a shared supervision structure be developed with clear definition of scope so that a Speech and Language Therapist would be available to advise, support, and monitor every Communication Support Worker (along with someone from their management).

We suggest that in, say 7 years, the CQC and its devolved equivalents will expect to fail any establishment that does not have a CSW in place truly doing the job of ensuring everyone can communicate with the outside world as much as possible.

Would it be possible to meet and talk – in person, by phone or by skype? –  about this in the next week or two?  I apologise for the timeline, but we only recently learnt that the final meetings are in October of the DH autism related task and finish group devoted to workforce development (8th) and also that devoted to participation (12th). 

_________________________________________________________________________

Appendix A

Varied support for the argument: from I, a patient centred legal rights perspective; from II, a pragmatic workforce oriented novel career perspective

I.

  1. Principle 2 of the Mental Capacity Act 2005 s.1(3) “a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success”.

Whenever reasonably practicable steps must be taken to improve the person’s ability to take a decision and, even where an adult does lack capacity to make a decision, they must be permitted and encouraged to participate as fully as possible in any ‘best interests’ decision-making process. s.4(4) MCA 2005

  1. “People’s right to being involved in their own care is enshrined in law in the fundamental standards of care. It is an essential part of person-centred care” CQC https://www.cqc.org.uk/news/stories/care-quality-commission-publishes-report-people%E2%80%99s-involvement-their-care

It is also a fundamental principle that runs throughout the Care Act (which governs social care). Local Authorities must involve all adults (whatever their disabilities) in processes of assessment, care planning and in safeguarding enquiries (s. 9(5), 25(3), 67 & 68 Care Act)

  1. “The UN Convention on the Rights of Persons with Disabilities (UNCRPD), …has illuminated the role technology can play as a tool to promote the human rights of people with disabilities, and their participation and inclusion in society.” (Ferri and Favalli 2018[1])

 [NB much but not all assistive technology is electronic].

Article 21 UNCRPD requires states to “take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice”.

  1. Andrea Sutcliffe, CQC’s Chief Inspector of Adult Social Care says on what gets an Outstanding award: “I see so much creativity and innovation in Outstanding services – using art, drama, music and poetry to bring fun and enjoyment into people’s lives, in even the most difficult of circumstances.  …Technology often plays an important part – [e.g.] using iPads so residents can keep in contact with distant relatives [our emphasis]
EXCLUSIVE: Andrea Sutcliffe shares view on what makes services Outstanding
  1. “…evidence for the use of voice-output communication aids, most commonly now delivered via an augmented and alternative communication app on a touchscreen tablet or smartphone, is promising. …  the evidence does clearly mandate both more research and continued practice in this area which may permit non-speaking individuals to gain greater autonomy, with consequent improvements in quality of life and participation.” Fletcher-Watson, S. (2016). Supporting communication in non-speaking autistic adults. Chapter 9, in D. Milton & N. Martin (Eds),Autism and Intellectual Disability in Adults, Volume 1. Pavilion Publishing, Hove, UK.  

__________________________________________________________________________

II.

  1. Speech and Language Therapists’ Clinical Responsibility around Delegation and the provision of training to the Wider Workforce (2010): Our idea addresses exactly this responsibility; its number 1 objective is “Keep the requirements of services users, their carers and families at the forefront of the service that the speech and language therapy workforce delivers.” https://www.rcslt.org/members/docs/training_wider_workforce

Note also that a somewhat similar role – that of registered intermediary – within the Criminal Justice System  with SaLT involvement, is discussed here https://www.communitycare.co.uk/2017/03/27/guide-social-workers-profession-enables-vulnerable-witnesses-access-justice/ 

The Ministry of Justice has established a national database of Registered Intermediaries, currently held on behalf of the Ministry of Justice by the National Crime Agency (NCA). 

  1. Skills for Care estimates that the staff turnover rate of directly employed staff working in the adult social care sector was 27.8%. … Turnover rates have increased steadily, by a total of 4.7 percentage points, between 2012/13 and 2016/17.
https://www.skillsforcare.org.uk/Documents/NMDS-SC-and-intelligence/NMDS-SC/Analysis-pages/State-of-17/State-of-the-adult-social-care-sector-and-workforce-2017.pdf
  1. The National Audit Office concluded that the Department of Health and Social Care is not doing enough to support a sustainable social care workforce. The number of people working in care is not meeting the country’s growing care demands and unmet care needs are increasing. While many people working in care find it rewarding, there is widespread agreement that workers feel undervalued and there are limited opportunities for career progression.
The adult social care workforce in England

Appendix B

Job description for a role in an NHS setting with a full team of specialists available, thus this actual job is sui generis. When the idea is further developed, explicit mention of SaLT supervision would be included, and alsothe role of liaison with specialist AAC provision in the area e.g. https://www.communicationmatters.org.uk/page/contacts-assessment-services-hubs and the facilitation of referrals to those where needed.

 NB the applicant who got the job has an MA in Autism from Birmingham University

Job Description

Post Title: Augmentative and Assistive Communication Project Lead-

Pay Scale– Band 4

Location:  Epsom area.

Responsible To: Home Managers and Service Manager

Job Purpose

The AAC Project Lead’s role is to develop and implement new communicative approaches and strategies, specifically to empower those who have a learning disability and communication difficulties. A large proportion of these people have an Autistic Spectrum Disorder diagnosis which means that they struggle to comprehend some elements of social interactions. As part of this role you will play a part in breaking down these barriers to help with the people’s inclusion and involvement in the home and in the community.

In order to do this the project lead will tailor make individualised communication packages specific to each person at …… Low and high tech solutions will be used, such as, pictures, objects, iPads, interactive whiteboards, and touch screen PC’s, switches/buttons and sensory items such as olfactory or tactile. An extensive understanding of how to test and implement a wide range of aids is an essential part of the role. Communication aids are not one size fits all and so the AAC Project Lead needs to be able to think outside of the box and on their feet.

To use these exploration findings to tailor accessible formats for communicating Person Centred Plans, Health Action Plans and Communication Passports.

The lead will need to be able to tailor existing software to suit the person and build bespoke systems.

The lead will champion inclusivity, autonomy and self-expression through the use of assistive technology and holding the ethics of Intensive Interaction as a guide. The aim is to hear people’s voice – however that is expressed (verbally or non-verbally, with assistive tech or body language).

The post holder will promote and develop strong leadership and enthusiasm by acting as a positive role model, and supporting colleagues to undertake AAC underpinned activities with people.  The post holder’s own practice will be evidence-based, having up-to-date knowledge of best practice and ranges of approaches within learning disability services and CQC requirements.

The person will work as part of a holistic team and be able to build strong relationships with key professionals with the Trust and with external agencies to develop and promote communication aids. Drawing on others expertise and experience to aid their own performance is an essential attribute.

Although this role is primarily based within the People with Learning Disabilities division, the post holder maybe required to help and support other divisions within the Trust as directed.

Principal Duties

  1. Work to build rapport and trust with people living at …… Exploration based on observations and trials to find the most appropriate communication systems for individuals.
  2. Able to lead on the development of initiatives to provide services and resources for individuals who have communication support needs and who may require AAC.
  3. Able to independently set personalized goals and monitor change against these goals. Able to develop new ways of working.
  4. Work with a commitment towards making information accessible.
  5. Able to independently contribute as part of the multidisciplinary team. Able to provide a second opinion at a local, regional or national level, where there are differences of opinion in relation to AAC implementation.
  6. Able to support individuals using technology during Annual Review meetings, creating visual diaries for reflection and interest.
  7. Able to develop new and innovative resources (equipment, software, vocabulary packages).
  8. Able to negotiate local funding and procurement arrangements with AAC suppliers and appropriate purchasing bodies.
  9. Able to raise awareness at a local level about AAC, organising awareness-raising events, as appropriate.
  • Develop and deliver AAC specific training on vocational courses, professional undergraduate and postgraduate courses.
  • Share knowledge and skills with staff teams and management. Supervise staff and evaluate their learning.
  • Promote inclusion and autonomy for individuals with communication differences.
  • Liaise with Home Managers on a monthly basis, discussing progress and direction.
  • Prepare and deliver training to staff teams.
  • Provide ongoing back up support to individuals and the houses.
  • Keep equipment up to date, well maintained and in working order.
  • Keep accurate, detailed, person centred notes. Provide update reports for Line Manager and Home Managers monthly. Attend regular supervision.
  • To promote self-advocacy or act as an advocate for users of the service ensuring that there is proper regard for their dignity, choice, self-esteem, racial, cultural, sexual and religious needs and preferences.
  • Research current forms of AAC. Undertake up to date training.
  • Ensure all aspects of health and safety are adhered to and to liaise with the Team to gain feedback; identify/monitor risk and report to manager.
  • Understand the performance of statutory requirements and good practice guidelines affecting work, including Health and Safety at Work Act 1984, Mental Health Act 1983, Data Protection Act 1999, COSHH and Food Handling and Food Hygiene regulations.
  • To assist in the orientation and induction of all new staff in accordance to Trust Policies.
  • Carry out other duties that are required which are consistent to the job and personal development.
  • To maintain a sound knowledge and in-depth knowledge of the CQC requirements and a good understanding of the standards and support the team in meeting these standards.

[1] Societies 20188(2), 40; https://doi.org/10.3390/soc8020040 Web Accessibility for People with Disabilities in the European Union: Paving the Road to Social Inclusion

Delia Ferri 1,*  and Silvia Favalli

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