Practice placement OCT 312 Learning Disabilities LD Specialist

Practice placement – OCT 312 Learning Disabilities (LD) Specialist Health Team Case study presentation on a service user who has a mild LD and how this impacts on her role of parent Student number 10529913

Placement setting/Role of occupational therapist Learning Disability Specialist Team red te cen e, t n e Cli ractic nal p io pat look at u c Oc ist’s l ua rap The individ ges llen. cha tically s holi ][3]. [2 Occupational Therapy Use nation a guida l nce to info rm practi ce. Daily Living Skills (ADLs) Assessment • Concern regarding skill loss • Specific assessment and advice regarding individuals who may be on the dementia care pathway • Skills training/recommendations • Daily living skills assessment when an individuals placement is breaking down and little is understood about their support needs • Placement suitability • Supporting the role of parents who have a learning disability. Dementia · baseline assessment and follow up. · Changing needs assessment, e. g. Assessment of changing functional, social, environmental needs as dementia progresses, staff support/training. - Identify changes to equipment needs, refer on to social care Occupational Therapist’s. the Use of io at Occup py ra nal the [1]. s proces Behaviour That Challenges · Environmental evidence based assessment · Sensory profile. · Understanding occupational needs, routine, consistency and structure. · Staff support/training encouraging a MDT approach, systemic, family/carer relationship work · Physical screening is part of initial LD OT assessment, where onward referral is identified where indicated. Uniq ue pers role and pec focu tive; mea s on n occu ingful patio activ n ity a , n d en inde abling pend ence. Work w multid ith the iscipli n team to it e ary nsure the m os favora t ble outco me fo r the servic e use [1][4]. r Sensory Processing. offer assessment and therapy to gain greater understanding of how an individual processes sensory information; Ayres SI therapy, when sensory integration is identified as a occupational participation barrier - proactive approach with carers to take forward a ‘sensory diet’; enabling the individual to engage in meaningful activities and reduce fluctuating arousal levels. [1] (Creek, 2003), [2] (Parker, 2011), [3] (Lillywhite & Haines, 2010), [4] (NLDPS, 2015).

Kelly The service user 27 y ea wom r old an. Mild learning Disability, Noonan Syndrome, dual sensory impairment. Assessed to have capacity and to consent to treatment. [1] (Clipartbarn, 2017).

Governing body/Policies, guidelines and legislations Relevance to case study/impact on practice Royal College of Occupational Therapists (RCOT) Professional Standards [14]. Royal College of Occupational Therapists (RCOT) Code of ethics and professional conduct [1]. Service provision, patient welfare, professionalism and ethical frameworks within which registrants must work. National Policy Drivers Local Policy Drivers Policies and Legislations Healthcare Professional's Council (HCPC) Standards of conduct, performance and ethics [2]. Management of Noonan Syndrome – A Clinical Guidance [3]. Guidelines recommend people with diagnosis of Noonan’s Syndrome are helped to access support for employment, independent living and social skill interventions as needed [3]. Equality Act - Reasonable adjustments [4]. The act ensures, as far as possible, by reasonable means that a person with a disability experiences the least disadvantage. Must ensure reasonable adjustments are made to service users to ensure practice is person- centred and each person is given sufficient opportunity to understand engage. ; ensures all correspondence Kelly receives is an accessible format [13]. Mental Capacity Act [5]. Complying with act is important as it enables people with a LD to make choices, empowering them to make informed decisions and to set their own goals to improve their quality of life. SCIE – helping people with LD in their parenting role [6. ] This resource has not been updated since February 2005. It may not reflect current policy but still provides valuable practice guidance; summary of potential support parents with a LD may need. Care Act – Safeguarding [7]. People with a LD can be vulnerable and so it is essential, in practice to be able to identify abuse, develop safety plans and make alerts , to promote the wellbeing and safety of the service user [13]. National Institution of Care Excellence (NICE) - Multimorbidity: clinical assessment and management [8]. Encourage people with multimorbidity to clarify what is important to them, including their personal goals, values and priorities. These may include taking part in social activities and playing an active part in family life, maintaining their independence; further supports the need to work with Kelly to gain increased independence and be able to actively engage in her parenting role. Consent and Capacity to consent policy[9]. Confidentiality, sharing of information, gaining consent. Food hygiene policy [10]. Guidance for safe practice in the correct handling of food; impacting on my own ability to be able safely and correctly handle food when working with Kelly. Lone working [11]. Within community working have to ensure personal safety when working alone All t he the se help wor service k to w clin ards gov ical erna [12] nce . All poli these ces guid have ed ass trea essme nt tm cas ent w / i e st udy th . [1] (RCOT, 2017 a), [2] (HCPC, 2016), [3] (NSGDG, 2010). [4] (Equality Act, 2010), [5] (Mental Capacity Act, 2005), [6] )SCIE, 2005), [7] (Care Act, 2014), [8] (NICE, 2016), [9] (XXXX, 2015 a), [10] (XXXX, 2015 b), [11] (XXXX, 2016), [12] Mc. Sherry & Pearce, 2011), [13] (Lillywhite & Haines, 2010), [14] (RCOT, 2017 b).

Learning disability [1] [2] A LD is defined as inclusion of the following criteria: initiated before adulthood, a significantly reduced ability to understand new or complex information to learn new skills; a reduced ability to cope independently having a lasting effect on development; with intellectual impairment being classified as an Intelligence Quotient (IQ) of 70 and below. Epidemiology [7] Prevalence [8] End of March 2015 there were 252, 446 people of all ages on LD registers. [3] Noonan Syndrome [3] Varying greatly in breadth and severity. It is common for those affected by Noonan Syndrome to have an array of physical and health problems, often causing an under development of hearing and speech. Impact of condition on occupational performance ability and participation Learning Disability [6]. • Struggle to break down and process complexed information which could contribute to poor planning and sequencing which will ultimately affect engagement and participation in occupation Dual sensory loss (Possibly secondary to Noonan Syndrome) [4][5] • diminishes communication and well-being and can cause social isolation, reduced independence, and cognitive impairment, impacting on an Kelly’s ability to access information and advice around health and wellbeing; resulting in difficulties with, maintaining social relationships and having a healthy lifestyle. Collectively, both can affect Kelly’s ability to communicate effectively and engage in her environment; limiting participation in occupations and so the demands of the activity will need to change in order to reduce the risk of occupational deprivation occurring, giving reason for referral to occupational therapy [6][9]. [1] (DOH, 2001), [2] (Holland, 2011), [3] ] (NSGDG, 2010), [4] (Sense, 2017), [5] (Schneider et al. , 2011), [6] (Lillywhite & Haines, 2010), [7] (Political Correctness and People with Disabilities, 2017), [8] (PHE, 2016), [9]

Kelly’s occupation organisation - Habituation Roles • Parent, partner, friend, daughter. Routines • Caring for her son, parent and toddler group every Thursday afternoon – no formal structure. Environment (facilitators and barriers to engagement in occupation) Physical environment – • struggles to operate physical resources in home environment due to visual impairment. • Moved house – all level, accessible flat. Social environment – • Partners mum very supportive of Kelly. • Struggles in new social situations. • Relationship with partner. • Receives support from sensory loss worker once a week – no evidence of care planning. Kelly’s occupation performance - Performance capacity • Struggling with some ADLs - mainly meal preparation and cooking. Reported to be independent in self care for both herself and her son. • Mild LD. • Noonan’s Syndrome; visual impairment, mixed conductive and sensorineural deafness secondary to Noonan’s syndrome. Volition Environmen t Habituatio n Performance skills People with learning disabilities may be predisposed to occupational alienation as a result of an inherent need for ongoing support in at least one major life activity across multiple environments [5][6]; at risk if they are not afforded meaningful choices and opportunities for enriching occupational experiences by being supported to participate in occupations [3][4]. Therefore, important to use MOHO as a framework to guide practice as it will be able to look at a persons facilitators and inhibitors to occupational performance and participation [2]. The model allowed me to keep this focus in my assessment and treatment and to give a client centered approach [1][2]. Occupational therapy process MOHO [1][2] – Information gathering Kelly’s motivation for occupation - Volition • Does not work currently but has previously attended college and completed a cookery class. • Recently, has not been able to engage in many meaningful occupations; • Reported to have an active interest in swimming. [1](Kielhofner, 2008), [2] (Lillywhite & Haines, 2010), [3] (Townsend & Wilcock, 2004), [4] (Mahoney et al. , 2016), [5](American Psychiatric Association, 2013), [6] (Wilcock & Hocking, 2015).

Model of Human Occupation Screening Tool (MOHOST)[2] • • • Outcome and outcome measures • • Enables observations in natural environments, increases validity as it adds important objectivity to assessment that might otherwise be based on speaking to family and support workers [1]. Straight forward to use for service users with mild- moderate LD [6]. Within LD service, introduces an evidence base to assessment process without compromising clinical flexibility [6]. Can be used to assess Kelly in different environments; identifies a person's key strengths and limitations in terms of MOHO subsystems. Supporting the use of MOHO as theoretical framework in practice [1][12]. Can be used as an outcome measure. – measure of change in how volition, habituation, skill and environment support participation [12]. Several studies have shown that therapists find it useful for decision-making, supportive of occupation-focused thinking and useful as a structure to client-centred practice [1][15]. Therapist-rated tool; limits clients ability to reflect on their own occupational participation [14]. [16] Assessment of Motor and Process Skills (AMPS) [8] • • • Gain insight into a Kelly’s pervious engagement, commonly used in the assessment of people with learning disabilities [1][19]. Can assess an individuals ability to perform a functional daily task – self selected activity. Therefore, making the assessment occupational and client-centred [3][4]; a top-down approach [13]. Generating objective measures that can be used to implement evidenced based practice [3][4][9]. Indicates the degree of efficiency and is more accurate in predicting the need for assistance in order to live in the community [7][14]. Free of cultural bias - important as should always be vigilant to whether an assessment is valid for client group based on cultural background, MOHO’s theory incorporates culture into concepts [10][11][12]. [8] occu All p ther ational a sho pists mea uld be sur reco ing and outc rding ome s [5 ]. Road safety assessment • Assesses how safely a person can asses the community; community participation is an important aspect to enhancing life and occupational functioning [17]. • Short, easy to administer. The results highlight the importance of using a combination of functional assessment and observations in order to address complexity, acquiring a more complete picture of the service users strengths and limitations to be able to support independent living in the community [2]. [18] [1] (Lillywhite & Haines, 2010), [2] (Parkinson, Forsyth & Keilhofner, 2006), [3] (Mesa et al. , 2014), [4] (Knecht-Sabres, 2014), [5] (RCOT, 2010), [6] (Hawes & Houlder, 2010), [7] (Merritt 2010), [8] (Fisher, 2005), [9] (Fawcett, 2013), [10] (Gantschnig et al. , 2015), [11] (James et al. , 2015), [12] (Forsyth, 2017), [13] (Fisher, 2009), [14] (Hitch, 2007), [15] (Forsyth et al. , 2011), [16] (All Occupational Therapy, 2017, [17] Loukas & Mc. Neil, 2014), [18] (blog, 2017), [19] (Dwyer & Reep, 2008).

Pattern of Occupation Adaptability Roles Responsibility Motivation for Occupational Areas Appraisal of Abilities Interest Choices R I A F Communication and Interaction Skills Non-verbal Skills Conversation Vocal Expression Relationships R I A F Occupational Areas Expectation of Success Process Skills Knowledge R I A F Motor Skills Occupational Areas Motivation for Occupation – difficulty identifying interests, ineffective at praising own ability. Process skills – requires encouragement, difficulty initiating, sequencing and completing; delays decisions. Motor skills – difficultly coordinating and manipulating objects; difficulty maintaining energy levels. Environment – space is mostly adequate; resources impede ability to achieve occupational goals safely; cultural responsibilities source of stress. Pattern of Occupation – time is filled but balance of activities my not always meet responsibilities; wants to take responsibility but does not show awareness of full occupational implications. Communication and Interaction skills – generally allows occupational participation but copes better 1: 1. AMPS [2] Timing Organisation Problem-solving Occupational Areas Findings/interpretation of results: MOHOST [1] Routine R I A F Assessment and frames of reference AMPS Posture and Mobility Co-ordination Strength and Effort Energy R I A F Environment Physical Space Physical Resources Kelly experienced significant challenges in the following areas: • Temporal Organisation • Adapting Performance Fatigue was noted at the end of both tasks, which could give explanation to poor results in task analysis (sequencing and planning); significantly limiting activity participation, potentially compromising safety, health and wellbeing [3]. nt. Clie d re cent of e Fram nce e r refe ] [4 con Verba s pat ent f l ien ro thro t gain m ass ugho ed u ess me t n t inte and rve ntio n. Occupational therapy process Occupational Areas MOHOST Social Groups Road safety - no presenting problems. Occupational Demands R I A F [1](Parkinson, Forsyth & Keilhofner, 2006), [2] (Fisher, 2005), [3] (Toglia, Golisz & Gover, 2014), [4] (Parker, 2011).

SMART [4] Aims and objectives Long term objective To develop activities of daily living skills (cooking) in the next 12 months. Short term aim To be able to make one healthy fresh meal for herself and her son. Short Term Objectives (> 2 months) To be able to understand To be able to and follow instructions independently and safely for making pizzas (2 – 6 use the cooker and weeks). microwave in relation to task (1 -2 weeks). To maintain and develop performance skills for making pizzas (4 -8 weeks). OT process influenced by patient aim Aims and objectives were not set until the 3 rd visit as Kelly finds new social situations difficult and so was important for me to work towards and building a therapeutic relationship first with Kelly in order to ensure I was being person centred; person centred practice is key to learning disability policy across the UK and can encourage positive change for people with a LD [1][2][3]. Per s cen onapp tred r [1][2 oach ][3][ 5]. Occupational therapy process Long term aim To be able to independently make a range of healthy meals for herself and her son. [1] (Lillywhite & Haines, 2010), [2] Sanderson, Thompson & Kilbane, 2006), [3] (DOH, 2010), [4] (Park, 2009), [5] (Wigham et al. , 2008).

ory nsat ]; e p Com oach[4 appr ilitative ab Reh ach [4]; o r p e ap nitiv Cog ioural v beha ch [4]. a o r app Accessible recipes Raised stickers for cooker al tion a c h Edu proac p a 5]. [ Health promotion Implementation/Clinical Reasoning; linking into what aim Linking to both short and long term aim; • recognised challenge with temporal organisation. • Used reasonable adjustments to remove barriers to successful skill development through using accessible recipes and information to facilitate and work towards cooking independently [1]. • Using task analysis - breaking down recipes into small easy to follow steps helping with planning, timing and sequencing; setting them at the just right level [2][3]. Linking to short term aims; • Due to dual sensory loss important for Kelly to be able to use physical resources in her environment safely. Linking to long and short term aims: • Discussions with Kelly what food is healthy for both her and her son; important for physical development [7]. • Support carers/family to implement recommendations. Com y ap pensat o proa ch [ r 4]. Occupational therapy process Intervention, approaches and implementation Interventions Through the assessments, it was clear that Kelly struggled with planning and sequencing in tasks and so it was important to focus how best to support Kelly to be able to reengage with function and occupation. Each intervention used addresses the performance capacity, volition, motivation and environment aspects of the Model of Human Occupation that has been used to guide the OT process as the interventions are linked to occupation and engagement with function, enhancing mood; so important to give her right amount and type of support to achieve maximal level of independence to achieve best outcome as detailed in the Royal College of Occupational Therapy research study for LD [6][7][8]. [1] (Equality Act, 2010), [2] (Thomas, 2015), [3] (Townsend et al. , 2007) [4] (Polglase & Treseder, 2012), [5] (James, 2014), [6] (Lillywhite & Haines, 2010), [7] (Locke, 2009), [8] (RCOT, 2013).

Blended approaches encourages focus on participation [5]. Intervention: Accessible recipes Top-down as Kelly is performing ADL skills that incorporates remediation for functional activity deficits [4]. Structured, adapted and graded, set at the ‘just right level’; helping to maintain and enhance Kelly’s level of functioning [2][13]. Using each session to build her confidence; Promoting independence through building confidence and improving self-esteem [7] Contributes to meeting the wider social policy priorities of promoting rights and supporting independence, control and inclusion [7]; considering the holistic needs and desires of the individual as influenced by society, supporting societal opportunities by creating an enabling environment [8]. Opportunity to practise and develop domestic role skills important for parenting role – occupation focused. Intervention links to all aspects of model – helping to reach own optimum level of independence, specific to Kelly's environment. Takes in account dual sensory loss, using reasonable adjustments [3]. Going forward this format can be used to build a recipe file; helping to work towards Kelly’s long term aim, facilitating her role of parent. A Cochrane systematic review indicated that interventions that are implemented to support parenting, are more successful if broken down into smaller steps, using verbal instructions, specially designed picture books and feedback to mother after the session [6]. Intervention helped to meet Kelly’s occupational needs; Enhancing occupational experiences; limiting occupational deprivation [9][10][11][12]. ‘Occupational therapist’s should offer interventions to people with LD that focus on engagement in occupation and enabling independence – should be of an appropriate length of time to enable engagement with the service user and development of their independent living skills’ [14]. Occupational therapy process Able to work with client to choose recipes – client -centred approach [1] (Parker, 2011), [2] (Toglia, Golisz & Gover, 2014), [3] (Equality Act, 2010), [4] (Meriano & Latella, 2008), [5] (Boyt Schell & Gillen, 2014), [6] Coren, Thomae & Hutchfield, 2011), [7] (Lillywhite & Haines, 2010), [8] Hammel et al. , 2014), [9] (Townsend & Wilcock, 2004), [10] (Mahoney et al. , 2016), [11] (American Psychiatric Association, 2013), [12] (Wilcock & Hocking, 2015), [13] (Townsend et al. , 2007), [14] (RCOT, 2013).

Allows 42% Inhibits 58% Post intervention As result of intervention, using MOHOST as an outcome measure, it shows Kelly has increased ability to engage and participate in her occupation; increasing motivation, supporting her role of parenting. Occupational therapy process Outcomes of interventions Pre-intervention

• • • Occupational therapy concludes that Kelly has demonstrated good potential in developing the practical activities of daily skills required to parent a child, but to also to be able to improve her own quality of life. Kelly has been referred to health facilitator but not discharged as will be supervised by a therapist to still manage on going needs – helping to work towards long term aim, increasing confidence in parenting role and her overall independence; Contributes to working towards NICE guidance [1]. Discussion with support worker to formulate a care plan to further support Kelly. Recommendation report completed and shared with relevant professionals to ensure further input with Kelly. Important to encourage collaborative working [2]; works to one of the 8 principles that need to be considered when working with people with a LD, improving quality of life and reducing occupation alienation [5][6]. Towards end of input – identified possible safeguarding issue regarding relationship with partner. Documented all that has been noticed, informal discussions with educator and relevant professional Contacted safeguarding to gain advice around next steps to take – important as working with vulnerable client group [3][4]. Occupational therapy process End of intervention Risk factors End of intervention, discharge • [1] (NICE, 2016), [2] (Lillywhite & Haines, 2010), [3] (Care Act, 2014), [4] (Mental Capacity Act, 2005), [5] (RCOT, 2013), [6] (Wilcock & Hocking, 2015).

Case study review Why did I pick the case study? The service frequently receives referrals around Learning disability and parenting. Felt it would give me opportunity to experience working with a service user through the majority of the Occupational Therapy Process. • • Was I client centred? Led by service user. Took into consideration Kelly’s wants and needs when considering intervention and desired outcomes. If there anything you would have done or could have done differently to improve patient outcomes? • Use of Goal Attainment Scale (GAS) goals to produce a further outcome measure not only to measure performance but also enable service user feedback [1][2][3]. [1] (RCOT, 2010), [2] (Turner-Stokes, 2009), [3] (Turner-Stokes & Williams, 2010).

Volition Habituation vs. Why MOHO? ? Environm ent Performanc e skills Why MOHO? [1][2][3][4][5][7][8][9] • • This model is used as a framework, by the occupational therapists within the service. It works well, as within LD it is important to consider volition and the conceptualization of the environment. Ensures people with learning difficulties' values and interests are not only identified and respected but used as the focus for service provision to enable client centered practice. Recognising the importance of the environment, both physical and social, allows identification of environments that support clients and allow meaningful participation; limiting occupational deprivation. Consideration could be given to use the Canadian Model of Performance and Engagement (CMOP-E) [6] in practice as an alternative framework to guide practice, although it focuses on occupational performance, need and engagement. However, on occasions MOHO is a more preferable choice of model, being more suited to understanding and developing a person's motivation for occupation; helping to build on occupational identity, enhancing health and wellbeing. [1] ](Kielhofner, 2008), [2] (Lillywhite & Haines, 2010), [3](Clarke, 2003) , [4] (Fawcett, 2007), [5] (Taylor & Kielhofner, 2017), [6] (Polatajiko, Townsend & Craik, 2007), [7] (Melton, Forsyth & Freeth, 2010), [8] (Wilcock & Hocking, 2015), [9] (Wong & Fisher, 2015).

Weaknesses Strengths Service evaluation - SWOT analysis [9][13] • • Collaborative occupational therapy team, supportive. Effective MDT working - key to standard of quality care. Underpinned by delivery of effective communication; However, this is integral to efficient, sustainable and safe staffing in learning disability services [1][3][4][5][6]. Positive culture enabling strong use of theoretical framework to help guide practice. Occupation focused - Able to meet occupational needs of the services users through, occupation based assessments and interventions [2]. Opportunities • • Recently recruited occupational therapists. Scope for professional development, building on teams existing skills and knowledge, the service is recognising and working towards contemporary reports, guidelines and recommendations [8]; facilitating increased performance of service delivery. • • • Work under pressure- efficient use of time – service heavy in meetings and travel. Intervention delivery – no time to work with service users; supporting carers to deliver interventions, hard to manage. No formal way of gaining service user feedback – using informal methods peer reviewed journal discusses how this can also introduce bias [7]; need to establish methods that have a more robust evidence based. Need to change culture within service at present as newly appointed OTs are having to take on complexed referrals; need to re educate and raising profile of what the OT service within LD can offer in terms of assessment and intervention for the service users. need to be able to manage and prioritise case load effectively Implementing a RAG (red, amber, green) strategy to plan how to work through weaknesses, reflecting on service development. Threats • Challenges with cuts to social care – health and social care now split, LD social workers roles are now generic, creates challenges for when making referrals. LD services are now part of the wider social care crisis, with limited funding available; Department of Health are hoping to change this by 2020 [14]. [1] (Ndoro, 2014), [2] (NLDPS, 2015), [3] (Tuffrey-Wijne et al. , 2013), [4] (Hutchison & Kroese, 2015), [5] (Friese & Ailey, 2015), [6] (Young & Chesson, 2006), [7] (Ball & Shanks, 2012), [8] (DOH, 2013), [9] (Roorda, 2012), [10] (RCOT, 2017 a), [11] (HCPC, 2016), [12] (Lillywhite & Haines, 2010), [13] (Chilingerian, 2006), [14] (DOH,

Strengths Evaluation of placement – SWOT analysis [1][2] • • • Develop my communication/ interpersonal skills with professionals and patients. Develop understanding of OT/ MDT role, utilise experience in LD specialist setting. Thoroughly enjoyed every aspect of placement, inspired by the professionals have been working alongside – considering a career in LD. Completed training contributing to CPD. Able to develop my clinical reasoning skills. Weaknesses • • Opportunities • • Opportunity to develop focused learning in a specialised • area of occupational therapy. Experience new assessments/ interventions. (MOHOST, PAL, AMPS, interest checklist). Exposure to sensory integration therapy and gained some understanding within theoretical framework – an extended scope of practice I am keen to explore upon qualifying, Opportunity to complete a research audit for the measure of fidelity for use of Ayres Sensory Integration therapy with adults with a LD. Finding sufficient opportunity, due to service restraints, to complete clinical assessment and intervention planning. Split between two educators – managing time; challenging to manage different case loads and gain the most from my placement. Sometimes hard what to prioritise. Wanting to manage own case load but also experience ‘real life’ professional working and the challenges that poses. Threats Not enough time to do everything I wanted to be able to do in my final year placement, feel I could have got more out of the experience if I had another couple of weeks. [1] (Roorda, 2012), [2] (Chilingerian, 2006).

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