Scotland's Ten Year Strategy for the Learning Provision for Children and Young People with Complex Additional Support Needs 2017-2026

The Scottish Commission for Learning Disability (SCLD) welcomes the opportunity to respond to this important consultation. SCLD is an independent charitable organisation and strategic partner to the Scottish Government in the delivery of Scotland’s learning disability strategy, The keys to life (2013) (1) . The strategy defines learning disability as a significant, lifelong, condition that started before adulthood, which affects development and means individuals need help to understand information, learn skills, and cope independently. SCLD is committed to finding new and better ways to improve the lives of people with learning disabilities and is focused on sharing innovation and good practice so that those providing services and interventions can learn from each other. SCLD also aims to be a knowledge hub and to build an evidence base, sharing how policy is being implemented and building on an understanding of what really works. With regard to this consultation, SCLD will make key suggestions around how ‘Scotland’s Ten Year Strategy for the Learning Provision for Children and Young People with Complex Additional Support Needs 2017-2016’ can best include and meet the needs children and young people with learning disabilities. Throughout this document SCLD will refer to the aforementioned as the Ten Year Strategy.

With regard to the structure of the strategy SCLD agrees that the structure is correct and that the document flows in a logical order. Please see response to Question 2.

(1) https://keystolife.info/wp-content/2014/05/the-keys-to-life-full-version.pdf

SCLD agrees that the structure of the Ten Year Strategy is correct. However, SCLD believes that this document should be accessible to the children, young people and families it impacts. Therefore, SCLD suggests that an Easy Read version of this strategy is produced alongside other accessible formats.

SCLD supports the aim of the Ten Year Strategy. This aim is in line with Scottish Learning Disability Strategy, The keys to life (2013) (2) and The Christie Commission (2011) (3) which highlight the need for strategic commissioning based on quality of life and outcomes for individuals living in Scotland. SCLD also supports the objectives and views them as fitting well within the recommendations of The Doran Review (2012) (4).

With regard to the aim, SCLD sees a need for a strengthening of Recommendation 1 of The Doran Review (2012) (5) in the Ten Year Strategy. Recommendation 1 stated, “Scottish Government should require all organisations working with children and young people who have complex additional support needs to make public the values which underpin their policies and plans so as to ensure these are reflected in the way in which their staff go about assessing and meeting needs of children and young people with complex additional support needs and their families“(2012, p.21).

This can be strengthened through a concise and considered value statement within the Ten Year Strategy. Such a statement should reflect the value of each and every child, the support of their parents as well as the unique knowledge and experience they both bring to any partnership. This value statement should also consider the ten strategic outcomes relating to statutory bodies’ legal obligation and national priorities which are outlined in The keys to life (pp.15-16) (6) . Central to this is that individuals are able to achieve their full potential and that they are included in the planning, development and design of services which support them to achieve their outcomes.

(2) https://keystolife.info/wp-content/2014/05/the-keys-to-life-full-version.pdf
(3) https://www.gov.scot/Publications/2011/06/27154527/0
(4) & (5) http://www.gov.scot/Resource/0040/00408307.pdf
(6) https://keystolife.info/wp-content/2014/05/the-keys-to-life-full-version.pdf

SCLD agrees that due to the high level of resourcing and specialist input required, a strategy is needed to ensure that children and young peoples’ desired outcomes are met. Additionally, SCLD would support the Ten Year Strategy making reference to the need for strategic commissioning based on ensuring that these children are able to participate as full and active citizens. This includes participation in education which can allow individuals to progress into employment. This is in line with Marshall’s (1950) (7) definition of Civil Citizenship.

(7) http://www.jura.uni-bielefeld/lehrstuchle/davy.wustldata/1950_Marshall_Citzenship_and

SCLD welcomes a holistic and inclusive approach to the education of children and young people with Complex Additional Support Needs. With regard to education of children and young people in mainstream education settings, SCLD would welcome promoting and structuring a whole school culture where children and young people with Complex Additional Support Needs are not seen as add on, or stigmatised. Instead, these children and young people should be valued as individuals, fellow pupils and friends.

With regard to children and young people with learning disabilities, SCLD acknowledges that ensuring full inclusion in mainstream education settings is challenging. Despite the presumption to mainstream, outlined in The Standard in Scotland's Schools Act (2000) (8) inclusion in mainstream schools for many children and young people with learning disabilities is not a reality. As the ENABLE Report ‘Included in the Main?!’ (2017) (9) stated, “Only one-third (33%) of young people in mainstream school felt that they were getting the right support in school” (p.11) and that “…fewer than 12% of parents and carers, whose children attend solely mainstream provision, felt the support their child received was enough to support their participation in all parts of school life” (p.11).

SCLD would also welcome the commissioning of services which look toward positive employment outcomes for children and young people with Complex Additional Support Needs. With regards to children and young people with learning disabilities, research commissioned by SCLD by McTeir, Macdougall and McGregor (2016) (10) highlighted that the employment rate in Scotland for adults with learning disabilities was estimated to be in the range of 7% to 25%. This is below the overall employment rate of 73%. Therefore, SCLD would welcome education for children and young people with Complex Additional Support Needs which was forward looking and challenges some of the weaknesses in the existing school systems.

These weaknesses were highlighted by McTeir, Macdougall and McGregor (2016) (11) as,
• Poor academic expectations of children and young people with learning disabilities,
• Poor quality teaching
• Bullying
• Social isolation.

McTeir, MacDougall and McGregor (2016) (12) also discussed institutional weaknesses including issues around physical access in schools. Due to this SCLD would welcome consideration of barriers to physical access in the Ten Year Strategy. This will help to ensure that the physical barriers to education, which some children and young people with Complex Additional Support Needs face, are minimised and removed.

(8) http://www.legislation.gov.uk/asp/2000/6/pdfs/asp_20000006_en.pdf
(9) http://www.enable.org.uk/includedinthemain/Documents/IncludED%20in%20the%20Main
(10) (11) and (12) http://www.scld.org.uk/wp-content/uploads/2016/08/SCLD-Report-Web.pdf

SCLD would welcome commissioned services which considered and addressed the mental health needs of children and young people with Complex Additional Support Needs, including learning disabilities. A report from BOND (2015) (13) stated that children and young people with learning disabilities are over six times more likely to have a diagnosable psychiatric disorder than their peers. The report also draws on evidence from the Public Health Observatory for Learning Disabilities which stated that the prevalence of schizophrenia amongst people with learning disabilities is three times higher than the general population. The same report highlighted a prevalence of 36% of diagnosable psychiatric disorder in children and young people with learning disabilities compared to 8% who do not have a learning disability. Levels of anxiety and depression were in line with the general population, although higher in people with Down’s Syndrome.

Additionally, research from Emmerson and Hatton (2007) (14) stated that, “Children with learning disabilities are at much greater risk of having mental health problems than children who do not have learning disabilities” (p.21). However, it was noted that societal factors relating to income and isolation also impacts the mental health of children and young people with learning disabilities.

Based on this, SCLD thinks that commissioned education services should provide mental health support to children and young people with Complex Additional Support Needs. This could take a range of forms and include;

• In school talking therapies,
• Signposting to external mental health support,
• Flexible approaches to learning
• Support to build self-esteem and confidence.

(13) BOND link not working
(14) http://www/lancaster.ac.uk/staff/emersone/FASSWeb/Emerson_07_FPLD_MentalHealth.pdf

SCLD sees a need for services which provide clear and accessible Relationship, Sexual Health and Parenting Education to children and young people with Complex Additional Support Needs. The WISH (2007) (15) briefing report on the sexual health needs of young people with learning disabilities cited evidence from Morrison (2006) (16) which highlighted there are some young people in Scotland, with learning disabilities, who have never received Sex and Relationships Education. It also cited Watt (et al), 1997 (17) and Paul (et al), 2004 (18) , which stated that there is a lack of consistency in the provision of Sex and Relationships Education to individuals with learning disabilities. The document also highlighted that where Sex and Relationships Education did take place it was focused on, “…redirecting or containing young people’s ‘inappropriate’ behavior, with little consideration for long term education” (Paul Et al, 2004) (19) . Moreover, ENABLE (2009) (20) stated that individuals with a learning disability vulnerability to abuse may be increased by a range of factors. This included a lack of good education about sex, relationships and sexual boundaries.

SCLD sees a role for commissioned services in the provision of accessible and consistent Relationship, Sexual Health and Parenting Education for children and young people with Complex Additional Support Needs. This should be in line with the Curriculum for Excellence benchmarks for Health and Wellbeing. SCLD believes this will help to support the inclusion of people with learning disabilities as full and active citizens.

(15) http://www.healthscotland.com/uploads/documents/6140-RegainingTheFocusLD.pdf
(16) http://www.healthscotland.com/uploads/documents/3291-Final%20DRAFT%20Full%20Rep
(17) Link not working
(18) & (19) http://www.scie-socialcareonline.org.uk/safeguarding-disabled-children-in-residential-special-schools/r/a11G0000007Ul2IAA
(20) http://www.bava.org.uk/wp-content/uploads/enable_abusebooklet_handbook.pdf

SCLD believes the commissioning of independent research will be important in monitoring and assessing the impact of existing educational provision on achieving outcomes for children and young people with Complex Additional Support Needs. This evidence should inform the transition from the present model and help shape planning and delivery of the new commissioning cycles over the 10 year period. SCLD agrees with the necessity of research which identifies factors that empowers inter-agency collaboration and supports positive outcomes for children and young people with Complex Additional Support needs

SCLD would welcome an increased availability of specialist Complex Additional Support Needs knowledge and Additional Support for Learning Staff. This, in line with findings from the ENABLE (2017) (21) report which found, “Most education staff (78%), in particular class/ subject teachers 86%, said: there are not enough additional support for learning staff in my school to support children and young people who have learning disabilities”(p.32). This could in turn improve access to increased specialist knowledge on accessible curriculums and task based learning. In addition, SCLD would promote training of specialist Additional Support Needs teachers which considers both the needs and strengths of children and young people with Complex Additional Support Needs.

(21) http://www.bava.org.uk/wp-content/uploads/enable_abusebooklet_handbook.pdf

SCLD agrees that the first phase should focus on pathfinder (testing) activity around training, development and research. SCLD views training with a wide range of practitioners a priority, in line with, ‘Strategic Commissioning for Services for Children with Complex Additional Support Needs: Qualitative Research’ (2015) (22)
.

SCLD sees value in teacher training on Complex Additional Support Needs. This could include information on the following areas;

• Accessible Communication and Information
• Relationship, Sexual Health
• Parenting Education
• Mental Health
• The needs and strengths of children and young people with Complex Additional Support Needs.

Accessible Communication and Information

This is in line with participants response in the Qualitative Research on Strategic Commissioning for Children with Complex Additional Support Needs (Scottish Government; 2015) (23) . Participants stated there was a national role on building skills relating to technology and communication techniques with children and young people with Complex Additional Support Needs (Scottish Government; 2015, p.77) (24) .

Relationship, Sexual Health and Parenting Education

SCLD would support training of teachers working with children and young people with Complex Additional Support Needs which focused on building a classes on Relationships, Sexual Health and Parenting Education. Please refer to Question 5: Health.

Mental Health Needs of Children and Young People

SCLD would support training of teachers working with children and young people with Complex Additional Support Needs, on mental health and specifically the mental health needs of children and young people with additional support needs. Please refer to Question 5: Care.

Needs and Strengths of Children and Young People with additional support needs

SCLD would welcome training for teaching staff and wider professionals around academic ability and progress assessments of children and young people with Complex Additional Support Needs and the complexities surrounding these assessments This should include, challenges faced by those children and young people who can be defined as having a learning disability and who are academically gifted. Please refer to Question 7: Assessments of children’s progress.

(22) (23) & (24) http://www.gov.scot/Resource/0047/00477042.pdf

SCLD sees an important role for education providers in developing better partnerships with parents who have learning disabilities. One key way of developing this partnership is through the provision of accessible information regarding a child’s education to parents. The importance of this was highlighted by Tarleton and Marriott in ‘Finding the Right Help’ (2008) (25) . In this the authors presented the views of the Parents2Parents Group and the Parent Information Expert Group who stated that letters from schools should be in accessible formats which helps parents with learning disabilities understand school processes and systems and how to monitor and support their child’s progress at school.

The importance of providing accessible information to parents with learning disabilities is highlighted in the SCLD commissioned report by Stewart, McIntyre and McGregor (2011) (26) . This stated, “The lack of accessible resources means that parents with learning disabilities may be missing crucial advice and guidance and may therefore not be as informed and forewarned as other parents regarding issues surrounding pregnancy, parenting and young children” (p32).

Therefore, SCLD would support improving parental engagement through the provision of accessible information to parents and carers who may have learning disabilities.

(25) http://www.bristol.ac.uk/sps/media/WTWPN-documents/finding-the-right-help-report.pdf
(26) http://www.scld.org.uk/wp-content/uploads/2016/11/Parenting-Report-FINAL-14.11.16.pdf

SCLD fully support the personalised individual level progress monitoring of learning for children with significant Complex Additional Support Needs outlined in the National Improvement Framework and quoted on page 14 of the Ten Year Strategy.

The strategy proposes to achieve the above there should be a “…trialing of a range of assessment models developed specifically to provide frameworks for schools and services to support assessment process for children and young people with complex additional support needs” (Scottish Government; 2017, p.14) (27) . SCLD would encourage schools and individuals carrying out assessments to consider some of the complexities regarding assessments of academic ability and progress of children and young people with Complex Additional Support Needs. This includes, critiques of IQ based assessments in diagnosing learning disability, as well as challenges around the identification and assessment of gifted students with learning disabilities.

Critiques of IQ based assessments in diagnosing learning disability

O’Brien (2001) (28) stated that IQ testing used solely to identify learning disability had been widely criticised. O’Brien stated that, “Test results in one child can vary according to mood, motivation, and fatigue, while the tests themselves show prominent rehearsal/learning effects, generally assume a degree of literacy, and are largely framed to suit Western cultural requirements, with consequent immense implications for interpretation.” (2001, p.570).

Identification and Assessment of Gifted Students with Learning Disabilities

A report from Ruban and Reis (2005) (29) highlighted that students who are academically talented and gifted who also have learning disabilities are at risk of under identification and exclusion from programmes for either students. The report stated, “The situation is complicated, as the abilities of gifted students often mask their disabilities, and in turn, their disabilities can disguise their giftedness. Due to this contradiction between high levels of ability and critical problems with learning, students who are academically talented but also have learning disabilities are at risk of under identification…More flexible identification and assessments will enable more twice-exceptional children to be both appropriately identified and served” (2005, p112).

Taking the above into consideration, SCLD would look for the Ten Year Strategy to ensure that assessment methods and tools take into consideration not only what children and young people with Complex Additional Support Needs, cannot do, but also what they can do and what they have the opportunity to do. This relates to Amartya Sens Capabilities Approach which discusses individuals functioning and capabilities (Mitra; 2006) (30) .

(27) http://consult.scotland.gov.uk/support-and-wellbeing/complex-additional-support-needs-2017-2026/user_uploads/00518630-1.pdf
(28) http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2001.tb00763.x/pdf
(29) http://www.itma.vt,edu?courses/humgro/lesson12/RubanReis2005AccessGiftedDisabled.pdf
(30) http://www.uio.no/studier/emner/uv/isp/SPED4610/h07/undervisningsmateriale/capability%20Approach%20%26%20Disability.pdf

SCLD supports the governance arrangement set out on page 14 of the Ten year Strategy. In addition SCLD would support the inclusion of the views of children and young people with Complex Additional Support Needs and their parents on the implementation of the Ten Year Strategy on an ongoing basis.

Regarding the transition period outlined on page 15, SCLD would support a period of transition funding which would strengthen the managed transition from the present model without prejudice to existing services. Such a fund would allow existing services to continue while new services were put in place. It would also facilitate a more coherent commissioning plan rather than the risk of piecemeal provision across the country.

This period of transition funding could also prevent the unintended lack of sustainability of existing services or service gaps. At the same time the effectiveness of new service arrangements can be demonstrated. This could achieve a more seamless, planned and phased transition from present to future service provision, while building greater confidence amongst children, their parents and service providers.

With regard to The Commissioning Process outlined of page 9 of the strategy, SCLD agrees that the process should be inclusive, transparent, and innovative and focused on excellence. This is in line with the SCLD commissioned report by Gilling and Phipps (2017) (31) . This highlighted the need to invest in ways to capture the voices of those who access services and the role this can play in overcoming barriers.

SCLD sees an important role in scrutiny to ensure transparency of commissioning. The recommendations highlighted in the Gilling and Phipps (2017) (32) report can help to support transparency, through developing a consistent approach to scrutiny and by developing a programme of practical guidance to support the impact of scrutiny, which involves key stakeholders including individuals with learning disabilities.

Thank you for the opportunity to respond to this important consultation.

(31) and (32) http://hub.careinspectorate.com/media/481540/using-scrutiny-to-drive-outcomes.pdf