Valuing and supporting disabled people and their · NZQA unit standards that form part of the National Certificate in Health, Disability and Aged Support Level 2 Foundation Skills

TE POU LIMITED TRADING AS TE POU

Valuing and supporting disabled people and their family/whānau A literature review and gap analysis of the ‘high and complex needs’ workforce training needs

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Published in June 2013 by Te Pou o Te Whakaaro Nui The National Centre of Mental Health Research, Information and Workforce Development. PO Box 108-244, Symonds Street, Auckland, New Zealand. ISBN 978-1-977537-96-7 Web www.tepou.co.nz Email [email protected]

http://www.tepou.co.nz/

mailto:[email protected]

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Acknowledgements This report has been funded by Health Workforce New Zealand and the Ministry of Health’s Disability Support Services Group to progress the Disability Support Services Workforce Action Plan. Disability Workforce Development within Te Pou acknowledges and thanks the input and contribution of Jo Titchener as an educator to this project in reviewing relevant NZQA training. Also, Gill Genet from Careerforce and Sue Gates, chair of the Complex Carers Group Trust, for their review and feedback.

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Contents

Acknowledgements ................................................................................................................................................ 3 Contents ................................................................................................................................................................. 4 List of tables ........................................................................................................................................................... 5 Executive summary ................................................................................................................................................ 7

Background ........................................................................................................................................................................ 7 Research aims .................................................................................................................................................................... 7 Key findings ....................................................................................................................................................................... 7 Recommendations ............................................................................................................................................................ 8

Background .......................................................................................................................................................... 10 Disability support services workforce action plan ...................................................................................................... 10 Disabled people with “high and complex needs” ........................................................................................................ 10 Population size ................................................................................................................................................................. 11 Workforce development issues ..................................................................................................................................... 13 Project aims ...................................................................................................................................................................... 13

Method ................................................................................................................................................................. 14 Literature search .............................................................................................................................................................. 14 Workforce development needs ...................................................................................................................................... 14 Training analysis ............................................................................................................................................................. 14

Workforce development needs ............................................................................................................................ 16 Generic skills .................................................................................................................................................................... 16 Specialist skills ................................................................................................................................................................. 17 Summary .......................................................................................................................................................................... 22

Workforce training and gaps .............................................................................................................................. 23 NZQA training ................................................................................................................................................................ 24 Non-NZQA training ....................................................................................................................................................... 26 Workforce training available and gaps ......................................................................................................................... 26

Conclusion ........................................................................................................................................................... 36 Key findings ..................................................................................................................................................................... 36 Limitations ....................................................................................................................................................................... 38 Recommendations .......................................................................................................................................................... 39

Appendix A: Support needs of disabled persons with “high and complex needs” ........................................... 40 Developmental needs ...................................................................................................................................................... 40 Health and health care needs ......................................................................................................................................... 41 Person centred planning, community inclusion and advocacy ................................................................................ 44 Assessment ....................................................................................................................................................................... 45 Summary .......................................................................................................................................................................... 45

Appendix B: Support needs of family/whānau ................................................................................................... 46 Rewards and challenges for family/whānau ................................................................................................................ 46 Support required by family/whānau ............................................................................................................................. 47

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Summary .......................................................................................................................................................................... 49 Appendix C: Detailed analysis of NZQA and non-NZQA training available and gaps ................................... 50

Generic skills .................................................................................................................................................................... 51 Specialist skills ................................................................................................................................................................. 60

Appendix D: International resources ................................................................................................................. 70 Best practice resources .................................................................................................................................................... 70 International training evaluation and case studies ..................................................................................................... 70

References............................................................................................................................................................. 72

List of tables

Table 1. Definitions of Disabled People Requiring a High Level of Support .................................................................. 10 Table 2. Significant Intellectual Disability Population Estimates ................................................................................... 12 Table 3. Generic Workforce Skills* Required to Support Disabled People including those with “High and Complex Needs” .................................................................................................................................................................................... 16 Table 4. Specialist Workforce Skills Required to Support Disabled People with “High and Complex Needs” ........... 18 Table 5. Key Findings from Bray and Colleagues’ (2005) Caregivers Survey ................................................................ 23 Table 6. Characteristics of Home and Community Support Workers (HCSWs)* ......................................................... 23 Table 7. Relevant Level 2, 3 and 4 NZQA Careerforce Qualifications ........................................................................... 24 Table 8. Summary of New Zealand Training Addressing Priority Generic Skills Required by Workers Supporting Disabled People with “High and Complex Needs” and Gaps .......................................................................................... 27 Table 9. Summary of New Zealand Training Addressing Specialist Skills Required by Workers Supporting Disabled People with “High and Complex Needs” and Gaps........................................................................................................... 31 Table 10. Key Qualifications Addressing Generic and Specialist Skills Required by Workers Supporting Disabled People with “High and Complex Needs” ............................................................................................................................ 37 Table 11. Support Needs of Family/Whānau for Disabled People with “High and Complex Needs” ......................... 47 Table 12. New Zealand Training Addressing Priority Generic Skills Required by Workers and Gaps ....................... 51 Table 13. New Zealand Training Addressing Specialist Skills Required by Workers and Gaps .................................. 60

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Executive summary

Background People with “high and complex needs” are a small and unique group of people with disabilities at the high end of the support needs spectrum. This group of disabled people includes those with multiple disabilities such as sensory disabilities, physical disabilities, severe intellectual disability, and serious and ongoing medical conditions. These individuals require support with self-care and basic activities of daily living. They tend to also have behaviours that require a very high level of support. Family and whānau play a key role in supporting and enabling disabled people with “high and complex needs” to live in their own home. Ministry of Health funded disability support services are available for disabled people living in the community with “high and complex needs”. One of the key objectives of the Disability Support Services Workforce Action Plan (Ministry of Health., 2009), is building a competent workforce that highly values and actively supports disabled people and their families and whānau. To effectively support disabled people with “high and complex needs” workers need to develop and retain appropriate knowledge and skills. New Zealand research with family/whānau caregivers (Bray, Moss, & Forrester, 2005) indicates there may be a number of gaps in the knowledge and skills of the workforce supporting this group of disabled people. These gaps may result from a lack of appropriate training being available in New Zealand.

Research aims The main project aim was to determine whether sufficient training is currently available in New Zealand to help build a competent workforce that is capable of supporting disabled people with “high and complex needs” in the community. To better understand this, the project:

1. identifies the key support needs of disabled people with “high and complex needs” 2. identifies the key support needs of family/whānau supporting disabled people with “high and complex

needs” 3. identifies the key skills and competencies required by the workforce supporting disabled people with

“high and complex needs” 4. assesses whether NZQA and non-NZQA training is available for developing key workforce skills and

competencies to meet the needs of disabled people with “high and complex needs” and their family/whānau, and any training gaps.

Key findings Workforce development needs The needs of disabled people, their family/whānau, and the workforce were reviewed to identify key knowledge and skills required by workers supporting disabled people with “high and complex needs” living in the community. A number of generic skills required by all workers supporting disabled people were identified, along with specialist skills required by workers supporting disabled people with “high and complex needs” specifically.

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While not all disabled people will require support from workers who have all of these knowledge and skills, ideally the workforce should be aware of the potential range of needs and be equipped to respond appropriately. Generic skills required by any worker supporting a disabled person include good communication, relationship and listening skills; positive values and attitudes towards disabled people and their family/whānau; an ability to provide all aspects of personal care; to provide families with information about services and supports available; to support and advocate for disabled peoples’ community inclusion; to collaborate with a range of professionals and organisations; and to support behaviour management and mobility. Specialist skills required by workers supporting disabled people with “high and complex needs” specifically include those focused on developmental needs (for example, quality of life and communication), health and health care needs (such as vision and eye health; hearing and aural health; dysphagia; medication management; and nutrition, hydration and weight), and assessment.

Workforce training and gaps An analysis was undertaken to determine whether NZQA and non-NZQA training was available to address identified workforce training needs. Findings show that a number of the generic skills required by workers supporting disabled people with “high and complex needs” in the community are largely covered through the NZQA unit standards that form part of the National Certificate in Health, Disability and Aged Support Level 2 Foundation Skills and Level 3 Core Competencies qualifications. The National Certificate in Health, Disability and Aged Support Level 4 Senior Support qualification covers the most training areas not already covered by these Level 2 and 3 qualifications. Many specialist skills are addressed through additional unit standards available in other qualifications. However, these unit standards are not necessarily clustered together in an easily accessible way. Furthermore, gaps remain in the knowledge and skills required by workers which are available through NZQA unit standards. In some cases, non-NZQA training provides more in-depth or specialist coverage of skill areas.

Recommendations A number of recommendations are made to support building the competency and capability of the workforce supporting disabled people with “high and complex needs” in the community. Options to ensure appropriate training is available for the “high and complex needs” workforce might include:

• Careerforce as part of the mandatory review of qualifications process o making information available that assists workers supporting disabled people with “high and

complex needs” to select appropriate NZQA electives as part of Level 2 Foundation Skills, Level 3 Core Competencies, and Level 4 Senior Support Careerforce qualifications

o identifying the most practical ways of building a “high and complex needs” relevant qualification (or specialist strand of an existing qualification)

o considering the specific needs of family/whānau and those supporting disabled people with “high and complex support needs”

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o considering how trainers in workplace based settings receive appropriate training and development to enable them to tailor the content of training to the workforce supporting disabled people with “high and complex needs”

• the New Zealand Home Health Association o reviewing career pathways for home and community support workers supporting disabled

people with “high and complex needs” as part of the development of career pathways for the sector

• the Ministry of Health o continuing to fund the priority specialist skills reflected in the Effective Practice Grant and

formal qualifications through the Training Grant to help the workforce build the right knowledge and skills to effectively support disabled people with “high and complex needs”1

o ensuring access to training and development opportunities for the “high and complex needs” workforce is maintained in the revised Disability Workforce Action Plan 2013-1016

• the “high and complex needs” needs workforce o attaining at a minimum a Level 3 core competencies qualification to ensure they are equipped

with key generic skills o ideally attaining a Level 4 qualification and that strategies required to support this are

investigated • Te Pou

o consulting with key stakeholders to prioritise the skills and knowledge required by the workforce supporting disabled people with “high and complex needs” and the most practical solutions.

1 See http://www.tepou.co.nz/training/disability-sector-grant-funding for further details of grants administered by Disability Workforce Development within Te Pou on behalf of the Ministry of Health.

http://www.tepou.co.nz/training/disability-sector-grant-funding

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Background

Disability support services workforce action plan A key objective in the Disability Support Services Workforce Action Plan (Ministry of Health, 2009) is building a competent workforce that highly values and actively supports disabled people, and their family/whānau. At the high end of the support spectrum there is a small and unique group of disabled people with “high and complex needs”. These people are often cared for in home and community settings by their family and whānau. Given their small population size, complex needs, and frequent physical isolation, the needs of these disabled people and their family/whānau are often overlooked in workforce development and planning. To help build a competent workforce capable of supporting disabled people with “high and complex needs” in the community and their family/whānau, Health Workforce New Zealand and the Ministry of Health have commissioned this report.2

Disabled people with “high and complex needs” Definitions A range of terms have been used to describe and categorise disabled people on the high end of the support needs spectrum. This group includes disabled people with multiple disabilities such as sensory disabilities, physical disabilities, severe intellectual disability, and serious and ongoing medical conditions. These individuals require support with self-care and basic activities of daily living. They may also have behaviours that require a very high level of support. The most common term used in the international literature to describe this group of disabled people is “profound intellectual and multiple disabilities” (PIMD). Other terms used include “complex needs”, “complex care”, “profound mental retardation”, “profound intellectual disability” (PID), “severe and profound intellectual disability” (SPID), and “profound and multiple learning disability” (PMLD). Key terms are summarised in Table 1. Table 1. Definitions of Disabled People Requiring a High Level of Support

Definition Details

Profound intellectual and multiple disabilities (PIMD)

• Profound intellectual disability (for example, IQ <30), and • A range of other multiple disabilities (such as visual impairment, hearing loss,

other sensory impairments, and seizure disorders)

Severe and profound mental retardation (SPID)

• Profound intellectual disability (for example, IQ <35) • Associated impairments such as speech defects, epilepsy and motor handicaps

Profound and multiple learning disability (PMLD)

• Severe learning disability requiring a high level of support • Communication difficulties • May have other disabilities such as physical, sensory, health , mental health, and

autism

2 The Ministry of Health fund disability support services for people aged under 65.

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High and complex needs± • A severe level of disability in at least one area of functioning and effects on at least three areas of functioning, or

• A moderate level of disability in at least one area of functioning and effects on at least four areas of functioning

• The areas of function include physical, intellectual, visual, hearing, communication, continence, behaviour, neurological (including epilepsy), and ongoing health needs

Note. ± Definition developed by Bray and colleagues (2005) based on a New Zealand survey of carers. Source: (Arvio & Sillanpaa, 2003; Bellamy, Croot, Bush, Berry, & Smith, 2010; Bray et al., 2005; Pawlyn & Carnaby, 2009)

A common term used to describe disabled people on the high end of the support needs spectrum in New Zealand is “high and complex needs”.3 The functional definition of “high and complex needs” in Table 1 was developed by Bray and colleagues (2005) and is based on information provided by carers of disabled children and young people in New Zealand.4 The primary difference between the definition of “high and complex needs” and those such as PIMD, PIM, SPID and PMLD, is that people with “high and complex needs” do not always have an intellectual disability. In other words, the term “high and complex needs” includes, but is not limited to, people with PIMD, PIM, SPID or PMLD. The term “high and complex needs” is therefore preferred and used throughout this report as it encompasses other similar definitions.

Population size Disabled people with “high and complex needs” reflect a small and growing group of disabled people. With advances in medical care there has been a marked increase in the number of children surviving prematurity, low birth weight and birth trauma. Many of these children have severe long-term health conditions and developmental delay (Olsen & Maslin-Prothero, 2001). Medical advances and treatment options also mean an increasing number of children with “high and complex needs” are surviving into adulthood (Bellamy et al., 2010). More developmentally delayed children are therefore now reaching adulthood with complex illnesses and disabilities than in the past. There has also been an increase in the number of people diagnosed with autism spectrum disorder (Blumberg, Bramlett, Kogan, Schieve, Jones & Lu, 2013). These groups of disabled people are often totally dependent on others for support to meet their high and demanding care needs (Maes, Lambrechts, Hostyn, & Petry, 2007). No population estimates have been published on the “high and complex needs” disabled group in New Zealand. Estimates of the population with profound intellectual and multiple disabilities (PIMD) are also difficult to locate in the national and international literatures. The data available relates to people with a significant intellectual disability and provides some broad population estimates as summarised in Table 2.

3 However, the term is used and defined in different ways within and among different government agencies. 4 By way of illustration, the sample of children and young people (aged 0 to 25) in Bray and colleague’s (2005) survey typically had a severe level of disability (87 per cent), multiple disabilities (communication 83 per cent; intellectual 74 per cent; physical 64 per cent) and recognition of High and Very High Needs, under the ORS Scheme for educational resources (83 per cent).

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Table 2. Significant Intellectual Disability Population Estimates

Source Definition Study findings

DSM-IV (2000; cited in Pawlyn & Carnaby, 2009) Country: US

Profound mental retardation (IQ <20-25)

Approximately 1-2 per cent of people with mental retardation had a profound mental retardation

Cooper et al. (2007; cited in Pawlyn & Carnaby, 2009) Country: Not stated

PID (ICD-10 criterion of functioning ≤ three years).

18 per cent of adults with an intellectual disability had a PID

Intellectual Disability (2012) Country: England

Severe and profound learning disabilities (not defined)

18 per cent of people with a learning disability had a severe and profound learning disability5

Arvio & Sillanpaa (2003) Country: Finland

SPID (IQ <35) Less than one per cent (0.13) in the total population had a SPID, in line with previous research in Finland (0.09-0.2 per cent)

Note. SPID = Severe and profound intellectual disability. PID = Profound intellectual disability. PMLD = Profound multiple learning disabilities.

Results in Table 2 indicate people with a significant intellectual disability represent a relatively small percentage of the total population of people with mental retardation, intellectual disability or learning disability (1-31 per cent depending on the definition used). In New Zealand, the 2006 Disability Survey (Statistics New Zealand., 2006) found eight per cent of the population (33,700 people) had an intellectual disability. Broad estimates of the number of people in New Zealand with a significant intellectual disability range from between 340 and 10,500. People with “high and complex needs” are therefore expected to represent a small proportion of the disabled population in New Zealand. The number of people with “high and complex needs” is expected to slowly increase over time. For example, UK research suggests the number of people with PMLD and severe or complex needs has increased by about 1.7-1.8 per cent each year (Emerson, 2009; Parrot, Tilley, & Wolstenholme, 2008).6 However, the number of younger adults with severe or complex needs has been increasing at a much higher rate, at about seven per cent each year. Therefore, while the group of disabled people in the general population with “high and complex needs” may be small, it is expected to increase over time.

5 They found there were about 210,000 people with a severe and profound learning disability. The total population with a learning disability was estimated to be 1.2 million. 6 Emerson (2009) estimated an average annual increase of 1.8 per cent for PMLD between 2009 and 2026. Parrot and colleagues (2008) found the overall number of people with severe or complex needs rose by 17 per cent between 1998 and 2008, from 682 to 786.

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Home and community support At the same time as this small population grows, there is a trend in New Zealand and other countries towards supporting disabled people with complex health care needs to live in their own homes (Bray et al., 2005; Olsen & Maslin-Prothero, 2001). In New Zealand the strategic direction for disability support services is “supporting disabled people and their families, whānau and aiga to live in their own homes and take part in their communities…” (Ministry of Health., 2012, p. 7). Consequently, there are an increasing number of people with “high and complex needs” living in the community. The shift towards home and community support reflects its greater cost effectiveness compared with hospital care, and the positive impact of the home environment on treatment outcomes and well-being (Olsen & Maslin-Prothero, 2001).

Workforce development issues Disabled people with “high and complex needs” require access to safe and quality support. Some disabled people with “high and complex needs” require 24 hour care and specialist medical and behavioural support. Ministry of Health funded disability support services are available for disabled people with “high and complex needs” living in the community.7 To effectively support disabled people with “high and complex needs” and their family/whānau, the workforce providing these services needs to develop appropriate knowledge and skills. These workers primarily include support workers in home and community settings who generally work on their own.8 The specific skills and competencies required by these workers needs further investigation.9 An improved understanding of disabled people requiring high and complex support and their needs would help identify key workforce training needs and inform future planning and development. The identification of family/whānau needs could also contribute to an improved understanding of workforce training needs.

Project aims The main project aim was to determine whether sufficient training is currently available in New Zealand to help build a competent workforce capable of supporting disabled people with “high and complex needs” in the community. To better understand this, the project:

1. identifies the key support needs of disabled people with “high and complex needs” 2. identifies the key support needs of family/whānau supporting disabled people with “high and complex

needs” 3. identifies the key skills and competencies required by the workforce supporting disabled people with

“high and complex needs” 4. assesses whether NZQA and non-NZQA training is available for developing key workforce skills and

competencies to meet the needs of disabled people with “high and complex needs” and their family/whānau, and any training gaps.

7 Who meet eligibility criteria. 8 As opposed to workers in residential community settings who often work within or across teams. 9 Currently, there is no defined scope of practice for home and community support workers.

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Method

Literature search Search Strategy A literature search was carried of grey literature, published journal articles, and books using Google, Google scholar, Medline and PsycINFO databases. Search terms used included various combinations of the following: complex needs; complex care; profound intellectual disabilities; profound multiple and intellectual disabilities; care needs; support needs; worker/support workers; and disabilities.

Key Documents The search revealed several key documents. The first was a New Zealand report by Bray and colleagues (2005) based on a survey of carers in Waitakere City, Auckland. This was the only relevant New Zealand study identified and describes both the needs of disabled people with “high and complex needs” and carers (including their concerns about the quality and availability of home and community support). The second key source was an edited book (Pawlyn & Carnaby, 2009) consisting of 18 chapters by various authors describing how to assess and meet the needs of the “high and complex needs” population.10 Many of the chapters are cited throughout this report.

Other Documents In addition to the key documents mentioned above, six grey literature reports, five review articles (including one self-published paper) and around 65 research articles were identified.11 Research articles were only cited if they added new information that was not already summarised in the five review articles or 18 book chapters.

Workforce development needs To identify workforce development needs for workers supporting disabled people with “high and complex needs” in home and community support settings the literature was reviewed to identify:

1. the key support needs of disabled people with “high and complex needs” 2. the key support needs of family/whānau supporting disabled people with “high and complex needs” 3. the key skills and competencies required of the workforce supporting disabled people with “high and

complex needs”.

Training analysis To determine whether NZQA training was available in New Zealand to address workforce development needs identified through the literature review, relevant unit standards available through Careerforce qualifications

10 Contributors cite a wide range of literature and are well published in their area of expertise. 11 Given the background of authors and the referencing used, the majority of documents were determined to be credible sources. As this review focused specifically on home and community support, articles and chapters were excluded if they pertained specifically to the general and education needs of children with “high and complex needs” within the school environment.

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were reviewed. A unit standard was listed as addressing workforce development needs based on the broad information provided (purpose, outcomes and evidence requirements) in the relevant Assessment Standards document (NZQA, 2012). To identify whether non-NZQA training was available to address training needs, the Disability Training Directory (Disability Workforce Development within Te Pou., 2012) was also reviewed.12

12 Along with some specialist organisations.

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Workforce development needs To help identify workforce training needs, the key support needs of disabled people with “high and complex needs” and their family/whānau were reviewed (see Appendices A and B). This section summarises the skills and knowledge required by the paid workforce supporting disabled people with “high and complex needs”.13 These include generic skills required by all workers who support disabled people, and specialist skills, required by workers who specifically support disabled people with “high and complex needs”. While not all disabled people will require support from workers who have all of these knowledge and skills, ideally the workforce should be aware of the potential range of needs and be equipped to respond appropriately.

Generic skills A recent review (Petry, Maes, & Vlaskamp, 2007a) identified necessary characteristics among workers supporting people with profound intellectual and multiple disabilities (PIMD). Most characteristics identified were generic skills and included the need to believe in the developmental capabilities of the disabled person; be attentive, receptive, motivated, responsible and competent; and be able to determine if the disabled person perceives support in the way it was intended. The support environment also requires cooperation among all of those providing support; needs to consider families as experts on their family members; and ensure good communication between family/whānau and support staff; continuity of support; and that all support is integrated and geared towards the disabled persons’ needs (Petry et al., 2007a). Table 3 summarises the generic skills identified as being required by workers supporting disabled people with “high and complex needs”. This is informed by the PIMD review and the support needs of disabled people and their family/whānau identified through the wider literature review (see Appendices A and B).14 Table 3. Generic Workforce Skills* Required to Support Disabled People including those with “High and Complex Needs”

Area of need Skill/s required to meet need

Good communication, relationship and listening skills

• Ability to develop and demonstrate effective communication and active listening skills and techniques

• Ability to build good relationships with family members • Demonstrate respect, concern and understanding for the family and the disabled person

Information needs of individuals and family/whānau

• Provide information to families on services and supports available15

Positive attitudes and values (including person centred planning)16

• Demonstrate respect, concern and understanding for the family and the disabled person • Understanding the principles of person centred planning and an ability to embrace the

underpinning values and attitudes

13 Although they may also apply to workers in other settings. 14 Based on external feedback, skills in challenging behaviour and mobility have been added as generic workforce skills rather than specialist skills. 15 Including extended family members such as siblings and grand parents. 16 The literature makes it clear that positive values and attitudes toward the disabled person and their family/whānau (including person centred planning) are crucial and should be held by support workers, agency workers, specialist professionals, and medical professionals including doctors, dentists etc.

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Area of need Skill/s required to meet need

• Ability to provide support based on the needs and priorities of disabled individuals and their family

• Ability to view the disabled person and their family as experts on their own lives • Ability to engage with and support the quality of life of each unique individual

Community inclusion and advocacy

• Ability to research and confidently include the disabled person in community activities • Ability to understand the disabled person’s right to community inclusion • Ability to advocate for the disabled person and identify when their right to community

inclusion is not recognised or compromised

Key professional skills • Need to be attentive, motivated, responsible, reliable and committed • Confident in working autonomously, in isolation from colleagues • Ability to learn on the job • Skills in time management, working within a team, report writing, professional

boundaries and cultural awareness17

Collaboration and interagency working

• Ability to collaborate with a range of professionals and other agencies when required

Personal care • Ability to provide support with all aspects of self-care including toileting, dressing and showering

Behaviour

• Understanding challenging behaviours • Understanding the variety of causes of challenging and self-injurious behaviour • Understanding the range of best practice interventions • Ability to learn from the individual (and those who know the individual) positive

strategies and interventions that enhance quality of life, physical, emotional and mental wellbeing

Mobility, posture and comfort

• Awareness of the potential mobility, posture and comfort needs of disabled people, including the need to protect body shape

• Ability to utilise specialist equipment when necessary • Willingness and capacity to work with postural care professionals to develop and follow

a good postural care plan

Note. *Stated or inferred skills. (Source: Hill, 2011; Hill & Goldsmith, 2009; Hogg, 1999; Lancioni, Singh, O'Reilly, & Sigafoos, 2009; Petry et al., 2007a) Source: Hill, 2011; Hill & Goldsmith, 2009; Hogg, 1999; Lancioni, Sing, O’Reilly & Sigafoos, 2009; Petry et al., 2007a.

Specialist skills In addition to the generic skills above, the workforce that supports people with “high and complex needs” specifically requires specialist knowledge and skills and access to targeted training (Bray et al., 2005; Petry et al., 2007a). The specialist skills required by this workforce have been investigated by several authors (see for example, Bloomber, West, & Iacono, 2003; Caudrey & Dissinger, 2007; Dobson, Upadhyaya, & Stanley, 2002; Hewitt-Taylor, 2012; Hill, 2011; Jones et al., 2001; Realon, Bligen, La Force, Helsel, & Goldman, 2002; Salmento & Bambara, 2000; Singh et al., 2003). Table 4 summarises the key specialist skills identified in the literature as

17 Included based on external feedback.

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being required by the workforce supporting disabled people with “high and complex needs” and their family/whānau (see also Appendices A and B). These generic skills are listed in column three of Table 4 and have been stated or inferred from interventions and strategies suggested in the literature. Table 4. Specialist Workforce Skills Required to Support Disabled People with “High and Complex Needs”

Area of need and description±

Some interventions/strategies to meet need suggested in literature

Skills required to meet need

Assessment Highly individualised assessment

• Requires collaboration and cooperation between teams including the individual, family and as many medical specialists that are required (Carnaby, 2009a)

• Taking a trans-disciplinary approach to meet the complexity of needs in a holistic and person led (rather than discipline led) way (Carnaby, 2009a)

• Understanding the importance of assessment and the need to work within a team based approach that includes family, friends and a range of health and other professionals

Quality of life18 Positive quality of life

• A focus on support that leads to self-determination (Petry & Maes, 2009)

• Stimulation sessions, micro switch-based stimulation sessions, leisure activities and favourite work tasks or conditions, positive environment or behaviour support programmes, active support programmes and mindful caregiving, favourite stimulation automatically delivered on exercise engagement and snoezelen (Jones et al., 2001; Lancioni, Singh, O'Reilly, Oliva, & Basili, 2005; Realon et al., 2002)

• Positive physical and social support environment (Petry, Maes, & Vlaskamp, 2007b; Petry, Meas, & Vlaskamp, 2005)

• Mindfulness training by workers (Singh et al., 2003)

• Ability to support a person with “high and complex needs” to engage in activities of daily living, for example shopping, leisure and social activities

• Being able to identify and understand the concept of quality of life

• Understanding person centred planning and holistic care approaches

• Ability to engage with and support the quality of life of each unique individual in their care using appropriate techniques

Specialist communication Need to have indicators of communication understood Right to choice, communication and sensory experience

• Interventions providing sensory experiences and social interaction include multi-sensory storytelling (Penne et al., 2012) and paying attention to the type of stimuli a person responds to (Vos, De Cock, Petry, Van Den Noorgate, & Maes, 2010)

• Integrating single stimulus choice opportunities into daily routines (Salmento & Bambara, 2000)

• Awareness of the specific communication characteristics of each disabled person they work with

• Awareness of the right to choice (expressed through communication) for people with “high and complex needs”

• Awareness of what communication aids/strategies are available to someone with a communication impairment

• Ability to engage in some key activities to

18 Some studies have found individual quality of life is largely dependent on those providing care and the structural and operating features of support. These include the physical environment, staff skills, staff turnover, partnership, teamwork and interdisciplinary and support settings (Petry et al., 2005; 2007b). For example, Bray and colleagues (2005) found that disabled people can become unhappy and stressed as a result of lack of continuity of support workers.

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Need to develop non-verbal communication

• Microswitches and assistive technology can be useful (Lancioni, O'Reilly, & Basili, 2001; Lancioni, O'Reilly, Oliva, & Coppa, 2001; Lancioni et al., 2002; Lancioni, O'Reilly et al., 2005; Mansell, 2010)

• Other approaches include games with staff and carers, snoezelen, active therapy and aromatherapy/massage (Bloomber et al., 2003; Dobson et al., 2002; Grove, Bunning, Porter, & Olsson, 1999)

improve the communication and the sensory experience of individuals

Emotional well-being Need for bonding and positive relationships

• Enhancing emotional well-being involves working proactively with the whole person, as well as their environment, for example ‘intensive interaction’ (Nind, 2009)

• Understanding holistic care approaches

Mental health Good mental health assessment and intervention for mental illness

• A good assessment takes biological, psychological, social, cultural and environmental factors, developmental function and emotional development into account

• Possible interventions include biological interventions (medications) and psychological interventions (direct such as cognitive behaviour therapy [CBT] or indirect, such as working to promote social inclusion and reduce vulnerability and stress) (Carnaby, 2009b)

• Awareness of the role of mental health has in overall health

• An understanding of specific disorders such as psychosis, depression and anxiety

• An understanding of dual diagnosis and its implications

• Helping people with ‘high and complex needs’ and mental health issues better cope with daily life

Epilepsy Good epilepsy care is vital to ensure a person’s safety and can reduce anxiety for them and their carer

• Epilepsy care should be well-integrated and coordinated with other forms of care (Codling & MacDonald, 2009)

• An understanding of what epilepsy and seizure are, recognizing seizure,19 different seizure types, cause and triggers, investigations and treatment20

• Knowledge of what to do in the event of a seizure, the recovery position, administration of medication, rectal diazepam, and buccal or nasal midazolam

• Ability to monitor seizure occurrences • Knowledge of epilepsy services available

and how to access them

Vision and eye health

• Guidance to prepare for optometrist appointments and support with

• Awareness of the range of vision and eye health issues and supports that may be

19 Including an ability to recognise subtle seizures (for example, a stare or blink). 20 As seizure activity is unique to each individual, individual plans for each person are necessary.

20




Proper assessment of vision and eye health and subsequent treatment, surgery, glasses etc. Good eye care Support to live with a vision impairment

subsequent interventions (such as glasses, eye drops and eye surgery)

• Functional interventions such as providing big bold signs and objects (Levy, 2009)

required, including the need for a vision assessment

Hearing and aural health Proper hearing assessment and subsequent treatment or aids

• Work to overcome barriers to getting hearing tested including physical barriers (accessibility issues), administrative barriers (for example, appointments not long enough), communication barriers, attitudinal barriers and knowledge barriers (of hospital staff) (Waite, 2009)

• Awareness of potential hearing impairments and their impact on communication and learning

• Confidence to organise a hearing test and support for person should interventions be recommended

Respiratory health Short (acute) or long term (oxygen dependence) respiratory treatment and support

• Interventions range from anti-acid therapy (for the treatment of reflux) to more invasive management techniques such as ventilation, surgery to straighten spine or rib cage and invasive tracheostomy ventilation (Wallis, 2009)

• Awareness of possible respiratory conditions and the complexities of detection and treatment

• Skills and training in home based administration of medication and specific respiratory care (for example, oxygen dependence)

Dental care and oral health Care needs include good tooth brushing and oral hygiene

• Interventions include proper brushing and oral care, proper diet, dental assessment and treatment (Watt-Smith, 2009)

• Knowledge of (and training in) the best ways to brush teeth and tooth brushing aids available

• Knowledge of what constitutes a healthy diet (such as five pieces of fruit and vegetables per day, limiting foods known to cause decay), and use of sugar-free medications

Dysphagia May need support with dysphagia including techniques to support eating and drinking or in some cases alternative feeding methods

• Dysphasia assessment (generally carried out by a speech and language therapist)

• Possible techniques to support eating and drinking include changes in position to facilitate a safe swallow; physical support methods at mealtimes; changes in food textures; thickening fluids; changes in feeding regime (such as small meals at regular intervals); adapting the environment and utensils

• In some cases alternative feeding

• Understand the process of normal swallowing and being able to identify signs and symptoms of concern

• Awareness of the range of ways nutrition can be delivered including eternal feeding (feeding tubes) or parenteral (intravenous)

• Ability to deliver nutrition through alternative means including tube feeding (possibly with a tracheotomy)

21




methods will be required including eternal feeding (feeding tubes) or parenteral (intravenous); sometimes with the use of tracheotomy (Crawford, 2009)

Nutrition, hydration and weight Regular assessment to reduce the occurrence of malnutrition and other nutrition related health problems

• Full nutrition assessment by dietician who is able to use equipment to measure height and weight if necessary such as ramps or hoist scales or taking supine lengths rather than height (Burton, Cox, & Sandham, 2009)

• Awareness of the importance of and assessment of nutritional intake

• Knowledge of medication and menu planning

• Awareness of signs of dehydration and constipation

Continence Support with toileting and continence

• Some people may benefit from habits and prompts to use the toilet and strategies to develop continence skills (Pawlyn & Budd, 2009)

• Ability to complete a continence assessment • Understand particular issues for individuals • Provide and/or follow a care plan that will

promote continence • Manage incontinence appropriately • Promote the health and well-being of the

person being cared for

Equipment, communication aids, assistive technology Mobility, medical and communication aids

Potential aids are outlined below. • Mobility (wheelchairs) (Mansell, 2010) • Nutrition, hydration and weight

(feeding technology) (Mansell, 2010) • Microswitches (can assist people with

“high and complex needs” to communicate and obtain desired environmental stimulation, for example, activating toys, sound and light displays) (Lancioni, O'Reilly, & Basili, 2001; Lancioni, O'Reilly, Oliva et al., 2001; Mansell, 2010)

• Hoists, bathing equipment, standing and walking frames

• Awareness of the range of technology and aids available

• Ability to correctly operate equipment and develop and/or follow a care plan using technology and aids

Medication management≠

• Knowledge of medication names and what they are taken for

• Awareness of the adverse effects of particular medications and processes to follow when there is an adverse effect

• Knowledge of PRN medication and procedures

Note. ±Based on a review of support needs of disabled people and their family/whānau (see Appendices A and B). ≠ Medication management included based on external peer review.

22

Families have diverse experiences and differ in how resilient they are to the stresses associated with supporting disabled family members with “high and complex needs”. They may be required to advocate for their family member, experience financial pressures, and have difficulties managing family relationships and challenging behaviours exhibited by the disabled person. Families require accurate information; skilled, reliable and consistent staffing; and need to be respected and listened to (Bernie, Cummings, & Cooper, 2007; Bray et al., 2005; Bunning, 2009; Diehl, Moffitt, & Wade, 2010; Mansell, 2010; Teare, 2008). Family/whānau may also have other support needs depending on their unique individual circumstances (see Appendix B for further details).

Summary In summary, generic and specialist skills required by the workforce supporting disabled people with “high and complex needs” were identified based on the support needs of disabled people, their family/whānau, and key workforce knowledge and skills required. Generic skills identified as being required by any worker supporting a disabled person include good communication, relationship and listening skills; positive values and attitudes towards disabled people and their family/whānau; an ability to provide all aspects of personal care; to provide families information about services and supports available; to support and advocate for disabled peoples’ community inclusion; to collaborate with a range of professionals and organisations; and to support behaviour management and mobility. Specialist skills required by workers supporting disabled people with “high and complex needs” specifically include those focused on developmental needs (for example, quality of life and communication), health and health care needs (such as vision and eye health; hearing and aural health; dysphagia; medication management; and nutrition, hydration and weight), and assessment.

23

Workforce training and gaps This section examines whether adequate training is available in New Zealand to support the development of a competent workforce capable of supporting disabled people with “high and complex needs”. Previous research (Bray et al., 2005) indicates there are training gaps for the “high and complex needs” workforce in New Zealand. Many carers in that study expressed concerns about the lack of training, continuity and expertise of support workers. This was attributed in part to the typically low pay conditions of support workers. Key results are summarised in Table 5. The skill and training gaps identified by caregivers in 2005 may imply a lack of appropriate training being available at that time. To address existing training gaps and remove duplication from qualifications, Careerforce is currently undertaking a review of health and disability qualifications. As a result, it is expected qualifications will be more relevant, fit for purpose, future proofed and will better support the workforce to deliver safe and quality services in the future.21 Table 5. Key Findings from Bray and Colleagues’ (2005) Caregivers Survey

Areas examined Key findings

Workforce training • 39 per cent felt those providing home and community support were inadequately trained

Workforce turnover • 42 per cent believed there were too many support worker changes22

Reliability of support • 42 per cent felt support was variable or unreliable

Quality of support • 26 per cent believed the disabled person received poor quality support

Relationship with family members

• 8 per cent believed workers had poor relationships with family members

While there has been a lot of improvement to health and disability qualifications since 2005, a more recent survey of New Zealand Home Health Association members (NZHHA, 2011) indicates there is still large scope to improve the knowledge and skills of support workers (see Table 6), who represent over 85 per cent of workers in home and community support services. Table 6. Characteristics of Home and Community Support Workers (HCSWs)*

Characteristic Details

Age

25 and under 36-50 years 51 and over

25% 35% 40%

Gender Female Male

95% 5%

Hours worked

Average per week 21 hours

21 See http://www.careerforce.org.nz/Workplace-Health-and-Disability-Training-troq.html 22 Some caregivers identified the lack of a career-pathway for these workers as an impediment to retention.

http://www.careerforce.org.nz/Workplace-Health-and-Disability-Training-troq.html

24

Ethnicity Māori Pacific Asian Pakeha Other

12% 18% 8% 48% 14%

Education No formal qualifications Level 2 Level 3 Level 4 and above

61% 31% 9% 5%

Currently studying Towards Level 2 Towards Level 3

12% 6%

Completed qualification within last 5 years±

Level 2 Level 3

62% 56%

Note. *Based on the New Zealand Home Health Association (NZHHA, 2011) survey of association members. ± The number of people who had completed a qualification in the last five years divided by the number who had started.

NZQA training Relevant formal qualifications available through Careerforce for the health and disability sector are summarised in Table 7. Whether the qualification contains elective unit standards along with compulsory unit standards is indicated. The National Certificate in Health, Disability and Aged Support Level 2 Foundation Skills and Level 3 Core Competencies qualifications are often recommended or are prerequisites for other NZQA health and disability qualifications. Table 7. Relevant Level 2, 3 and 4 NZQA Careerforce Qualifications Qualification Electives Description Prerequisites National Certificate in Health, Disability and Aged Support (Foundation Skills) (Level 2)

Yes Designed to recognise the knowledge and skills required of support workers during their induction into work in a health or disability setting. Holders of this qualification are able to provide support for consumers in a health, disability or aged support setting.

National Certificate in Health, Disability and Aged Support (Core Competencies) (Level 3)

Yes Designed to build on the existing knowledge and skills required of support workers in a variety of health, disability and aged support contexts within home-based, community, and residential settings. Note. This is a prerequisite qualification for some of the qualifications listed below.

It is recommended that candidates hold the National Certificate in Health, Disability, and Aged Support (Foundation Skills) (Level 2) or demonstrate equivalent knowledge and skills.

National Certificate Yes Strands in Dietician Assistance, Dental This qualification builds on the

25

Qualification Electives Description Prerequisites in Health, Disability, and Aged Support (Health Assistants) (Level 3)

Assistance, Healthcare Assistance and Rehabilitation Assistance. Designed to recognise the knowledge and skills required of health assistants working under the delegated authority of a supervising health professional.

skills and knowledge recognised in the National Certificate in Health, Disability, and Aged Support (Foundation Skills) (Level 2).

National Certificate in Community Support Services (Human Services) (Level 3)

Yes Designed to recognise the skills and knowledge required of support workers in the delivery of human services in a health or disability setting.

National Certificate in Community Support Services (Core Competencies) (Level 3) or National Certificate in Health, Disability and Aged Support (Core Competencies) (Level 3).

National Certificate in Community Support Services (Intellectual Disability) (Level 3)

Yes Designed to recognise the skills and knowledge required of support workers in the delivery of intellectual disability services.


National Certificate in Community Support Services (Vision and Hearing Screening) (Level 3)

Yes Designed for employees who conduct vision and hearing screening tests with children as specified by the Ministry of Health through the National Vision Hearing Screening programme and the Well Child/Tamariki Ora National schedule.

National Certificate in Community Support Services (Disability Information Provision) (Level 4)

No Designed for people who are working as disability information consultants or similar in the health and disability sector, and for other people wishing to pursue a career within the sector.

National Certificate in Diversional Therapy (Level 4)

No Designed for people working as diversional therapists (also known as activities officers) in a community, residential home or hospital setting.


National Certificate in Mental Health and Addiction Support (Level 4)

Yes Designed for learners who wish to enter mental health and addiction support work, or who already work as paid or unpaid mental health and addiction support workers under supervision.

This qualification is aligned with a pathway commencing with the National Certificate in Health, Disability, and Aged Support (Foundation Skills) (Level 2).

National Certificate Yes Designed to recognise the knowledge and It is recommended that

26

Qualification Electives Description Prerequisites in Health, Disability and Aged Support (Senior Support) (Level 4)

skills required of senior support workers in a health, disability or aged care setting.

candidates hold the National Certificate in Health, Disability, and Aged Support (Core Competencies) (Level 3) or have equivalent knowledge and skills before enrolling in this qualification.

Source: http://www.careerforce.org.nz/Workplace-Health-and-Disability-Training-qualifications.html

Careerforce qualifications were reviewed to identify whether NZQA unit standards were available to address generic skills and specialist skills required by the workforce supporting people with “high and complex needs” based on the literature review. Generic skills are those required by any worker supporting a disabled person;23 specialist skills are required by workers supporting disabled people with “high and complex needs” specifically. In line with learning pathways for the health and disability sector, unit standards available in the Level 2 Foundation Skills qualification were examined first, followed by the Level 3 Core Competencies and Level 4 Senior Support qualifications. The Senior Support qualification was also specifically listed as it was found to cover the most training gaps not already included in the Foundation Skills or Core Competencies qualifications.24

Non-NZQA training The Disability Training Directory (Disability Workforce Development within Te Pou., 2012) was reviewed to identify non-NZQA training available in New Zealand that addresses workforce development needs identified.25

Workforce training available and gaps A detailed analysis was undertaken to identify NZQA unit standards available in national qualifications that may support the development of generic and specialist skills required by the workforce as listed in Tables 3 and 4, along with any training gaps.26 Non-NZQA training that may address training gaps was also examined. A summary of the more detailed analysis (attached in Appendix C) is included in Tables 8 and 9 below. Summarised in the first column of Tables 8 and 9 are the knowledge and skills required by workers based on the review of disabled persons, their family whānau (see Appendices A and B), and workforce training needs. The following columns indicate whether a unit standard(s) is available under the Level 2 Foundation Skills, Level 3

23 Note, Table 8 does not include all the generic skills required by support workers working with a disabled person. There are a range of generic skills required by all support workers working with people with disabilities in New Zealand. Training in these skills is incorporated into Level 2, 3 and 4 Careerforce qualifications for the health, disability, aged support and social services sectors. For example, training in safe work practices (Unit 17593, Level 2), supporting a consumer to use prescribed medication (Unit 20827 – Level 3) and demonstrating knowledge of infection control requirements (Unit 20826, Level 2). 24 While a National Certificate in Brain Injury Support (Level 4) is currently being piloted it did not appear to have broader applicability in developing the generic and specialist skills required by the workforce supporting disabled people with “high and complex needs”. The brain injury qualification was therefore not included in the analysis. 25 See http://www.tepou.co.nz/training/directory. Other training available through specialist groups and organisations such as Epilepsy New Zealand were also considered. 26 This includes an analysis of elective and compulsory unit standards within qualifications. However, no attempt was made to isolate overlapping unit standards or those which contain similar content.

http://www.careerforce.org.nz/Workplace-Health-and-Disability-Training-qualifications.html

http://www.tepou.co.nz/training/directory

27

Core Competencies, or Level 4 Senior Support qualifications (the specific unit standard number is listed in the final column). Where additional unit standards are available through other qualifications this has also been indicated.27 The final column of each table summarises how well current training addresses workforce training needs listed and any training gaps. Where no unit standards are available or the depth and coverage of available unit standards is not sufficient to address identified workforce training needs this has been highlighted in red. Table 8. Summary of New Zealand Training Addressing Priority Generic Skills Required by Workers Supporting Disabled People with “High and Complex Needs” and Gaps

Generic skill Le

vel 2

Fo

unda

tion

Ski

lls

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4

Seni

or S

uppo

rt

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A t

rain

ing

Training gaps

Good communication, relationship and listening skills Develop and demonstrate effective communication and active listening skills and techniques Able to build good relationships with other family members Demonstrate respect, concern and understanding for the family and the disabled person

Yes Yes Yes Yes Yes • General coverage good at NZQA Level 2 and 3 (26982, 23392, 1810, 11097, 26975).28

• A useful additional unit standard would be one that includes any unique communication skills required to provide quality home and community support, or a generic communications skills unit from another domain.

• Improved cultural knowledge around cultural practices, protocols and customs would aid communication amongst staff working across cultures.

Information needs of individuals and family/whānau Provide information to families on services and supports available

Yes Yes • Some coverage at NZQA Level 3 (for example, 1810, 1828).

• Level 4 and 5 unit standards (24655, 24659) from the Senior Support qualification may be particularly relevant.

• Gaps include skills needed to advocate and support family/whānau to access information and support services.

27 Level 2, 3 and 4 qualifications are the central qualifications for the health, disability, aged support and social services sectors. Level 2, 3 and 4 qualifications not listed in the tables include Newborn Hearing Screening (Residential) (Level 3), Youth Work (Youth Leadership) (Level 3), Brain Injury Support (Level 4), Employment Support (Level 4), Iwi/Maori Social Services (Level 4), Social Services Work with Abuse, Neglect and Violence – not currently available (Level 4) , Social Services – not currently available (Level 4), Tamariki Ora – not currently available (Level 4), Whānau/Family Foster Care (Level 4), Youth Work (Level 4). 28 Note. ± Level 2 refers to the Foundation Skills and Level 3 refers to the Core Competencies qualifications unless otherwise specified.

28

Generic skill

Leve

l 2

Foun

dati

on S

kills

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4

Seni

or S

uppo

rt

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A t

rain

ing

Training gaps

Positive values and attitudes (including person centred planning)

Values and ethics Demonstrate respect, concern and understanding for the family and the disabled person Understand disability issues, analyse and reflect on own and community values and attitudes that impact on disabled people

Yes Yes Yes Yes • Positive values and attitudes are covered to some extent across a range of Level 2-4 unit standards (for example, 23686, 20829, 27104, 23380, 26970, 23392)

• Gaps include a unit standard that addresses ‘valuing people’ which would encompass objectives around the NZ Disability Strategy, social model, empowerment, language and independence.

Person centred planning Understanding person centred planning approaches and an ability to embrace the underpinning values and attitudes Provide support based on the needs and priorities of disabled people and their families Ability to view the disabled person and their family as experts on their own lives Ability to engage with and support the quality of life of each unique individual

Yes Yes Yes Yes Yes • There are a range of unit standards across Levels 3-5 to develop skills in person centred planning (for example, 20829, 23925, 1828, 23383, 24657)

• Being able to identify with the culture of the individual is imperative to all forms of planning as well as having an understanding of human development in terms of needs and a holistic approach, based on theories and models – in particular Te Whare Tapa Wha.

Community inclusion and advocacy Able to research and confidently include the disabled person in community activities Able to understand the disabled person’s right to community inclusion

Yes Yes • Generally good coverage at NZQA Level 3 (23385, 23382, 1828).

• There are gaps in developing skills in becoming an effective advocate in the broadest sense (including self-advocacy).

29

Generic skill

Leve

l 2

Foun

dati

on S

kills

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4

Seni

or S

uppo

rt

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A t

rain

ing

Training gaps

Able to advocate for the disabled person and identify when their right to community inclusion is not recognised or compromised

Key professional skills Need to be attentive, motivated, responsible, reliable and committed

Confident in working autonomously, in isolation from colleagues Ability to learn on the job Requires skills in time management, working within a team, report writing, professional boundaries and cultural awareness

Yes Yes • Testing of work ready skills required for support work can generally be covered during an employment interview.

• However, induction training and/or additional training may be useful to support individuals to work in home and community settings (for example, 23451, 23926, 23453, 23390, 26970, 23380, 20964, 11097, 3491).

• Those working with people with “high and complex needs” may need training in specialist skills prior to starting work.

Collaboration and interagency working Ability to collaborate with a range of professionals and other agencies when required

Yes Yes • Level 2 and 3 unit standards identified as appropriate for other generic skills should equip a support worker with some of the communication and advocacy skills required to collaborate effectively with other professionals and agencies.

Personal care Ability to provide support with all aspects of self-care including toileting, dressing and showering

Yes • Level 3 unit standard (23386) should provide a good basic foundation for providing personal care.

• Specialist personal care skills are also required including eye health, aural health, respiratory care, dental care, dysphagia care, continence and mobility and posture (see Table 9 - Specialist Skills).

30

Generic skill

Leve

l 2

Foun

dati

on S

kills

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4

Seni

or S

uppo

rt

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A t

rain

ing

Training gaps

Behaviour Understanding of the variety of types and causes of challenging behaviour (including self-injurious behaviour) Understanding of the range of best practice interventions Ability to learn from the individual (and those who know the individual) positive strategies based on intervention models that enhance quality of life, physical, emotional and mental wellbeing

Yes Yes Yes Yes • Level 2 and 3 unit standards (26976, 23388) provide a basic grounding.

• However, these units are not currently providing the scope of skills required at this level in the area of challenging behaviour. There is a significant gap in a theory based unit that identifies challenging behaviours, causes/triggers and specific strategies that workers need to be aware of that could be used to reduce challenging behaviours (particularly in the area of responding to aggressive behaviour using a non-harmful management system).

• Level 4 and 5 unit standards (23374, 27315, 18684) from the Senior Support qualification will better equip workers to support a person with “high and complex needs” with challenging behaviour.

Mobility, posture and comfort Awareness of the potential mobility, posture and comfort needs of people with “high and complex needs”, including the need to protect body shape Ability to utilise specialist equipment when necessary Willingness and capacity to work with postural care professionals to develop and follow a good postural care plan

Yes Yes Yes • General coverage good at NZQA Level 3 (23453, 26981, 5012, 26977).

31

Table 9. Summary of New Zealand Training Addressing Specialist Skills Required by Workers Supporting Disabled People with “High and Complex Needs” and Gaps

Specialist skill

Leve

l 2

Foun

dati

on S

kills

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4 S

enio

r Su

ppor

t

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A

trai

ning

Training gaps

Assessment29 Understanding the importance of assessment and the need to work within a team based approach that includes family, friends and a range of health and other professionals

Yes • Level 5 unit standard (24656) from the Senior Support qualification raises workers’ awareness of the assessment process and the need for good assessment. However, this is a practically based unit standard and requires a high level of awareness and knowledge.

• Gaps include unit standards at an appropriate level for carers that include theory based on knowledge about assessment processes and the importance of team work and liaison.

Quality of life Ability to support a person with “high and complex needs” to engage in all activities of daily living, for example shopping, leisure and social activities Being able to identify and understand the concept of quality of life Understanding of person centred and holistic approaches to care (including a Māori perspective)

Ability to engage with and support the quality of life of each unique individual in their care using appropriate techniques

Yes Yes Yes Yes • Level 2 and 3 unit standards (20829, 23380, 26970) only provide a basic grounding in quality of life issues.30

• These unit standards do not provide sufficient understanding of the quality of life concept and its importance. This would enable trainees to value the uniqueness of quality of life to each individual they work with.

Specialist communication skills Awareness of the specific

Yes Yes Yes • Level 2 unit standard (26982) provides a basic grounding.

• Level 4 unit standards (16874,

29A high level assessment of support needs would generally be conducted by an agency with skilled staff in this field. However support workers would benefit from having an understanding of individual needs at the level of determining a personal plan. 30 Note. Level 2 refers to the Foundation Skills and Level 3 refers to the Core Competencies qualifications unless otherwise specified.

32

Specialist skill

Leve

l 2

Foun

dati

on S

kills

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4 S

enio

r Su

ppor

t

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A

trai

ning

Training gaps

communication characteristics of each disabled person they work with Awareness of the right to choice (expressed through communication) for people with “high and complex needs” Awareness of what communication aids/strategies are available for someone with a communication impairment

Ability to engage in some key activities to improve the communication and the sensory experience of a disabled person

27467) from various other qualifications31 will further equip workers to communicate with disabled people with a communication impairment.

• Training gaps include an awareness and understanding of how to promote communication for a person with a communication impairment through the use of specific communication aids, strategies or technologies. For example, augmentative communication, communication boards and computer programmes (see also Assistive Technology below).

Emotional Wellbeing32 Understanding of holistic approaches to care, such as ‘intensive interaction’

Yes Yes Yes Yes • Level 5 unit standard (26851) from the Senior Support qualification will be useful to workers in promoting an understanding of general wellbeing principles and practices.

• Unit standards on cultural responsiveness and non-NZQA training have relevance to this skill and its focus on holistic approaches to care that would include the personal, social, spiritual, cultural, physical components of self.

Mental health Awareness of the role of mental health in overall health An understanding of specific conditions such as psychosis,

Yes • There is good general coverage at NZQA Level 3 (26971, 26972, 23373).

• However, these unit standards do not appear to sufficiently address dual diagnosis.33

31 16874 from the Human Services, Intellectual Disability and Disability Information Provision qualifications. 27467 from the Health Assistants qualification. 32 Emotional wellbeing also needs to be addressed when analysing, assessing or gaining an understanding of quality of life and person centred planning. 33 External feedback indicates this is even a gap in clinical workforce training curricula.

33

Specialist skill

Leve

l 2

Foun

dati

on S

kills

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4 S

enio

r Su

ppor

t

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A

trai

ning

Training gaps

depression and anxiety Understanding of dual diagnosis and the implications Helping people with ‘high and complex needs’ and mental health issues better cope with daily life Epilepsy An understanding of what epilepsy and seizures are, recognizing seizures, different seizure types, causes and triggers, investigations and treatment Knowledge of what to do in the event of a seizure, the recovery position, administration of medication and rectal diazepam, buccal or nasal administration of midazolam Ability to monitor seizure occurrences Knowledge of epilepsy services available and how to access them

Yes Yes • Level 3 unit standard (20965) appears to cover all necessary components of epilepsy training except for ‘recording and monitoring’, ‘observing subtle seizures’, ‘what to do in the event of a seizure’, and ‘PRN medication’.

• Epilepsy NZ offers training which addresses gaps identified above.

Vision and eye health Awareness of the range of vision and eye health issues and supports that may be required, including the need for a vision assessment

Yes • Level 3 unit standard (24895) from the Vision and Hearing Screening qualification would allow workers to develop an awareness of visual impairment and referral pathways.

Hearing and aural health Awareness of a possible hearing impairment and its potential impact on communication and learning Confidence to organise a hearing test and support for person should interventions be recommended

Yes Yes • Level 3 unit standards (23377, 23375) from various other qualifications34 would allow workers to develop an awareness of hearing impairment and referral pathways.

34 23377 from the Health Services qualification and 23375 from the Vision and Hearing Screening, and Diversional Therapy qualifications.

34

Specialist skill

Leve

l 2

Foun

dati

on S

kills

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4 S

enio

r Su

ppor

t

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A

trai

ning

Training gaps

Respiratory health Awareness of possible respiratory conditions and the complexities of detection and treatment May require skills and training in home based administration of medication and general respiratory care (for example, oxygen dependence)

Yes • Level 4 unit standard (27468) from the Health Assistants qualification provides a basic grounding.

• However, it does not cover the whole range of respiratory conditions that people with “high and complex needs” may experience, such as training to support an oxygen dependent person.

Dental care and oral health Knowledge of (and training in) the best ways to brush teeth and tooth brushing aids available Knowledge of a what constitutes a healthy diet (such as five pieces of fruits and vegetables daily, limiting foods known to cause decay) and the use of sugar-free medications

Yes Yes • In many cases Level 3 unit standard (23386) will cover the skill required for supporting an individual to brush their teeth.

Nutrition, hydration and weight (including dysphagia) Awareness of the importance of and assessment of nutritional intake Knowledge of medication and menu planning Awareness of signs of dehydration and constipation Understand the process of normal swallowing and be able to identify signs and symptoms of concern Awareness of the range of alternative methods nutrition can be delivered including eternal feeding (feeding tubes) or parenteral (intravenous)

Yes Yes Yes • Level 2 and 3 unit standards (26978, 27460) from the Foundation Skills and Senior Support qualifications cover general (rather than specialist) feeding and nutrition needs of disabled people.

• Level 4 unit standard (27468) from the Health Assistants qualification covers safe swallowing.

• However, these unit standards do not appear to cover the practical aspects of delivering nutrition through alternative means, such as feeding tubes/tracheotomy.

35

Specialist skill

Leve

l 2

Foun

dati

on S

kills

Leve

l 3 C

ore

Com

pete

ncie

s

Leve

l 4 S

enio

r Su

ppor

t

Oth

er N

ZQA

uni

t st

anda

rds

Non

-NZQ

A

trai

ning

Training gaps

Ability to deliver nutrition through alternative means if required Continence Able to complete a continence assessment Understand the particular issues for that individual Provide and/or follow a care plan that will promote continence Manage incontinence appropriately Promote the health and well-being of the person being cared for

Yes • Level 2 unit standard (27140) provides good coverage of this skill.

Equipment, communication aids, assistive technology Awareness of the range of technology and aids available Ability to correctly operate equipment and develop and/or follow a care plan using technology and aids

Yes • Level 3 unit standard (27469) from the Health Assistants qualification provides good coverage.

• However, it does not appear to include feeding aids (discussed under Nutrition above).

Medication management Knowledge of medication names and what they are taken for Awareness of the adverse effects of particular medications and processes to follow when there is an adverse effect Knowledge of PRN medication and procedures

Yes Yes Yes Yes • Level 2 unit standard (23685) covers describing pre-packaged medications.

• Level 3 unit stand (20827) covers support to use prescribed medications.

• Gaps appear to include information on the adverse effects of medications and PRN medications.

36

Conclusion The main aim of this project was to determine whether sufficient training is currently available in New Zealand to develop a competent workforce capable of supporting disabled people with “high and complex needs”. To better understand this, the project undertook a literature review to identify workforce development needs based on the key support needs of disabled people with “high and complex needs”; their family/whānau; and key skills and competencies required by support workers. An analysis was completed to determine whether NZQA and non-NZQA training is currently available and current gaps for developing key workforce skills and competencies to meet the needs of disabled people with “high and complex needs” and their family/whānau.

Key findings Generic skills identified as being required by all workers supporting disabled people include good communication, relationship and listening skills; positive values and attitudes towards disabled people and their family/whānau; an ability to provide all aspects of personal care; to provide families with information about services and supports available; to support and advocate for disabled peoples’ community inclusion; to collaborate with a range of professionals and organisations; and to support behaviour management and mobility, posture and comfort. Specialist skills required by workers supporting disabled people with “high and complex needs” specifically include those focused on developmental needs (for example, quality of life; communication; emotional wellbeing and mental health), health and health care needs (such as personal care; epilepsy; vision and eye health; hearing and aural health; respiratory health; dental care and oral health; dysphagia; medication management; nutrition, hydration and weight; continence; and support with equipment, communication aids and assistive technology), and assessment. The analysis of NZQA and non-NZQA training indicates that a number of the skills required for working with disabled people with “high and complex needs” are covered through NZQA unit standards as part of Careerforce qualifications. The qualifications that included the most relevant unit standards that addressed generic skills included the National Certificate in Health, Disability and Aged Support Level 2 Foundation Skills and Level 3 Core Competencies qualifications (see Table 10). A large number of relevant unit standards were elective units within these qualifications.35 The National Certificate in Health, Disability and Aged Support Level 4 Senior Support qualification was most likely to address training gaps not already addressed by Level 2 and 3 qualifications. NZQA unit standards that addressed specialist skills (for example, those focusing on vision and eye health; hearing and aural health; respiratory health; nutrition, hydration and weight; equipment, communication aids and assistive technology) were most likely to be spread across several other qualifications (such as Health Services, Intellectual Disability, Disability Information Provision and Health Assistant qualifications). They are therefore not clustered together

35 To attain qualifications, a specific number of credits need to be completed. Trainees would therefore need to complete other unit standards as part of undertaking Level 2 Foundation Skills and Level 3 Core Competencies qualifications.

37

in an easily accessible way. As a result, it is recommended that the workforce supporting disabled people with “high and complex needs” attains a Level 3 core competencies qualification as a minimum, and ideally attains a Level 4 qualification. Although some specialist skills can be addressed through non-NZQA training and specialist organisations, this training is not consistently available across New Zealand. Therefore, it is likely to be most practical for the workforce to build the knowledge and skills required through national qualifications. Moreover, formal qualifications are possibly more acceptable to employers (family or agency) in that they will know the skill level and competency they can expect to see from carers/support workers based on the qualification level. It can also be seen as a learning pathway for support workers which may enable additional career opportunities. Careerforce is currently undertaking a review of health, disability and social service qualifications as part of the NZQA Targeted Review of Qualifications. The review aims to address existing gaps and remove duplicated qualifications from the New Zealand Qualifications Framework. The review is expected to result in qualifications for the health and disability sector which are more relevant, fit for purpose, future proofed, and that will better support the workforce to deliver safe and quality services to clients in the future.36 Careerforce has confirmed that it will be reviewing the “high and complex needs” workforce as part of this review (G. Genet, personal communication, May 6, 2013).

Table 10. Key Qualifications Addressing Generic and Specialist Skills Required by Workers Supporting Disabled People with “High and Complex Needs” Training areas addressed Qualification Generic Specialist Total National Certificate in Health, Disability and Aged Support (Foundation Skills) (Level 2)

6 5 11

National Certificate in Health, Disability and Aged Support (Core Competencies) (Level 3)

9 6 15

National Certificate in Health, Disability and Aged Support (Senior Support) (Level 4)

5 5 10

Other NZQA unit standards

5 9 14

Non-NZQA training 5 4 9 There were gaps in training available through NZQA qualifications to address the workforce development needs of those supporting disabled people with “high and complex needs”. Of the priority generic skills required by the workforce, the main gaps included the development of effective advocacy skills to address ‘information needs’ and ‘community inclusion and advocacy’; a unit standard focused on valuing people that encompasses objectives around the New Zealand Disability Strategy, social model, empowerment, language and independence to support the development of ‘positive values and attitudes’; and a unit standard in ‘challenging behaviour’ that provides the scope of skills required to work in this area. Of the specialist skills required, the main gaps included 36 See http://www.careerforce.org.nz/Workplace-Health-and-Disability-Training-troq.html. The mandatory review of health and disability qualifications by Careerforce may impact on the key qualifications identified in Table 10 and units listed as available to address workforce training needs in this report.

http://www.careerforce.org.nz/Workplace-Health-and-Disability-Training-troq.html

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a unit standard at an appropriate level for support workers to support the development of ‘assessment’ skills; greater understanding of the ‘quality of life’ concept and its importance within current unit standards; ‘specialist communication’ skills to support those with communication impairments through the use of specific aids, strategies or technologies. The depth of the current unit standard on ‘epilepsy’ could also be improved to include recording and monitoring, observing subtle seizures, what to do in the event of a seizure, and PRN medication.

Limitations While this project has undertaken a comprehensive literature review and analysis of training and gaps to aid the workforce supporting disabled people with “high and complex needs” developing the right knowledge and skills, a number of limitations need to be taken into account. The workforce development needs identified in this report were based on a national and international literature review. There was a paucity of New Zealand evidence available to inform this review. The development of this report did not involve consultation with disabled people, families/whānau, or the workforce supporting disabled people with “high and complex needs”, which may have allowed for a more refined prioritisation of identified needs. Consultation with key stakeholders as part of the response to this review, could provide direction for the most practical responses in addressing workforce development and training needs. While key qualifications for the sector were reviewed, not all NZQA qualifications available through Careerforce were reviewed in detail (for example, Level 4 Brain Injury and Level 5 qualifications). It is possible other unit standards exist in New Zealand that address workforce training gaps. It is also possible that other relevant non-NZQA training exists in New Zealand that is not included in the Disability Training Directory. In addition, organisations with a focus on specific disabilities (for example, Epilepsy NZ) may offer seminars and workshops that address training gaps and may not have necessarily been considered in this review. Effective workforce training depends not only upon the training content, but also its delivery, a supporting infrastructure and the level of confidence and motivation of trainees themselves (see Salas et al., 2009; Salas, Tannenbaum, Kraiger, & Smith-Jentsch, 2012). Each training provider will interpret the evidence requirements for NZQA qualifications in their own way and provide the training content and delivery.37 In addition, many of the qualifications will be delivered in workplace based settings,38 where the training can be tailored to specific workforce needs and groups of people being supported (for example, disabled people with “high and complex needs”). However, the tailoring of training to suit these requirements depends on the skill and expertise of trainers and was not examined in this review. In addition, the upskilling of home and community support workers can be challenging due to the often isolated, individualised and mobile environment in which they work.

37 Note. Any assessments developed from NZQA unit standards must meet moderation standards. 38 Maximum of three at level 2 or 3.

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Recommendations Despite limitations a number of recommendations are made to support building the competency and capability of the workforce supporting disabled people with “high and complex needs”. Options to ensure appropriate training is available for the “high and complex needs” workforce might include:

• Careerforce as part of the mandatory review of qualifications process o making information available that assists workers supporting disabled people with “high and

complex needs” to select appropriate NZQA electives as part of Level 2 Foundation Skills, Level 3 Core Competencies, and Level 4 Senior Support Careerforce qualifications

o identifying the most practical ways of building a “high and complex needs” relevant qualification (or specialist strand of an existing qualification)

o considering the specific needs of family/whānau and those supporting disabled people with “high and complex support needs”

o considering how trainers in workplace based settings receive appropriate training and development to enable them to tailor the content of training to the workforce supporting disabled people with “high and complex needs”

• the New Zealand Home Health Association o reviewing career pathways for home and community support workers supporting disabled

people with “high and complex needs” as part of the development of career pathways for the sector

• the Ministry of Health o continuing to fund the priority specialist skills reflected in the Effective Practice Grant and

formal qualifications through the Training Grant to help the workforce build the right knowledge and skills to effectively support disabled people with “high and complex needs”

o ensuring that access to training and development opportunities for the “high and complex needs” workforce is maintained in the revised Disability Workforce Action Plan 2013-1016

• the “high and complex needs” needs workforce o attaining at a minimum a Level 3 core competencies qualification to ensure they are equipped

with key generic skills o ideally attaining a Level 4 qualification and that strategies required to support this are

investigated • Te Pou

o consulting with key stakeholders to prioritise the skills and knowledge required by the workforce supporting disabled people with “high and complex needs” and the most practical solutions.

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Appendix A: Support needs of disabled persons with “high and complex needs”

The support needs of disabled people with “high and complex needs” were examined to help identify workforce training and development needs. This section examines the key support requirements of disabled people with “high and complex needs” as identified in the literature. Key needs identified include a range of developmental and health care needs. The literature also highlights the importance of considering the relationship between the disabled people and their environment in order to understand their unique individual needs. This includes person centred planning, a focus on community inclusion and advocacy. The need for a good coordinated (and all encompassing) clinical assessment is also stressed in the literature. These different support needs are discussed further below.

Developmental needs Six common developmental needs were identified in the literature and include quality of life, communication, emotional wellbeing, mental health, and behaviour.

1. Quality of life The importance of measuring and improving the quality of life for people with “high and complex needs” is widely discussed in the literature, mainly due to its prominence in policy (Petry & Maes, 2009). People with “high and complex needs” are likely to find it challenging to independently engage in activities of daily living. This may include activities such as working, shopping, paying bills, education, leisure, self-advocacy and social activities. People with “high and complex needs” may require support with all these activities to enhance their quality of life (Bray et al., 2005). Interventions may contribute to improving the quality of life for people with “high and complex needs”. Such interventions may include leisure activities, favourite work tasks or conditions, creating a positive environment, positive behaviour support programmes, mindful caregiving, favourite stimulation automatically delivered on exercise engagement and snoezelen (sensory stimulation), and micro switch-based stimulation sessions (Lancioni, O'Reilly et al., 2005).

2. Communication Effective and appropriate communication is crucial to the support of all disabled people, including those with “high and complex needs”. There is debate about the degree of conscious awareness of intentions that individuals with significant intellectual disability have. However certain behaviours have been identified as forms of communication that can improve the care and quality of life for these individuals. These indicators include alternating eye gaze, clear waiting for a response, active seeking of proximity, systematic variation in behaviour, and persistence and intensity of behaviour (Bunning, 2009; Forster & Iacono, 2008). The disabled person has a right to choice, communication and sensory experience at their level. Non-verbal communication should therefore be developed (Hogg, 1999).

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3. Emotional wellbeing Emotional well-being (including bonding and good relationships) is important for a person with “high and complex needs”. It is central to a high quality of life, mental health, and has been linked to one’s learning ability. Enhancing emotional well-being involves working proactively with the whole person, as well as their environment. One approach, called “intensive interaction”, aims to facilitate social interaction and communication through interactions which are nurturing, naturalistic and intensive (Nind, 2009).

4. Mental health Evidence suggests that a lack of control over one’s environment contributes to mental health problems (Hogg, 1999). People with conditions such as profound intellectual and multiple disabilities (PIMD) may be more vulnerable to developing mental health conditions due to a lack of control (Carnaby, 2009b). Communication barriers associated with complex disabilities make talking about emotional and psychological issues difficult. Symptom presentation can also vary according to levels of functioning in cognition, communication, physical and social domains. An intellectual disability and challenging behaviour can be confused with symptoms of mental illness. As a result, people with PIMD and other multiple disabilities require proper assessment and intervention when mental health issues arise.

5. Behaviour People with “high and complex needs” may display a range of persistent challenging behaviours (Thompson & Reid, 2002). Challenging behaviour can include physical aggression, property destruction and sexually inappropriate behaviours (Matson, Cooper, Malone, & Moskow, 2008). Self-injurious behaviour can also place the individual and others at risk of physical harm and social disapproval (Hogg, 1999). Each individual will require appropriate and individualised support to help manage their behaviour in ways that enhance their personal well-being and safety.

Health and health care needs People with “high and complex needs” may require support with self-care and complex health problems as part of their disability, including serious medical conditions. There are 10 main general care and health care needs discussed in the literature. These include personal care; epilepsy; vision and eye health; hearing and aural health; respiratory health; dental and oral health; nutrition, hydration and weight; continence; mobility, posture and comfort; equipment, communication aids and assistive technology.

1. Personal care Due to their profound disabilities, most people with “high and complex needs” are likely to require support with fundamental aspects of self-care including toileting, dressing and showering (Maes et al., 2007; Pawlyn & Carnaby, 2009).

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2. Epilepsy The prevalence of epilepsy is much higher among people with an intellectual disability than in the general population. Furthermore, epilepsy can be more complex in the PIMD population when it is associated with conditions such as cerebral palsy (Codling & MacDonald, 2009). Epilepsy can also interact with other conditions and treatments such as prescribed drugs and good epilepsy care is vital to ensuring a person’s safety and can reduce carers’ anxieties (Codling & MacDonald, 2009).

2. Vision and eye health About 30 per cent of people with an intellectual disability have significant visual impairments. Vision and eye health can therefore be a significant issue for people with “high and complex needs”.39 The individual may require glasses, eye surgery or other treatment to improve their sight. Visual impairments can also lead to a range of difficulties, such as those associated with communication, learning and development, balance, movement, mobility, concentration and memory. They can contribute to problems in assessing people, places, situations and knowing who to trust; social exclusion; and limit individual autonomy and independence. People with multiple disabilities can be particularly disadvantaged as their other senses (for example, hearing) may also be impaired (Levy, 2009). A proper vision assessment, good eye care and support to live with vision impairments is therefore essential.

3. Hearing and aural health About 40 per cent of people with an intellectual disability have significant hearing impairments (Waite, 2009). Hearing and aural health may therefore present a significant challenge for people with “high and complex needs”. A hearing impairment can result from problems with the ears themselves, sound processing units of the brain, or both. The ears of some people born prematurely are not fully developed, which can result in impairments. Hearing impairment can have a significant impact for a person with “high and complex needs” because they may have multiple disabilities including intellectual disability, vision impairment and physical disabilities. These disabilities can inhibit or prevent language development, sign-language, other forms of communication and general learning (Waite, 2009). A proper hearing assessment and subsequent treatment or aids is therefore important.

4. Respiratory health Many individuals with “high and complex needs” have chest and airway health-related problems. As Wallis (2009) explains, these can be either short term acute conditions or chronic conditions requiring long term respiratory support (such as oxygen dependence). Individuals with “high and complex needs” can also have difficulties swallowing. This can lead to disorganized swallowing, and then potentially to partial blocking of the airways or “aspiration”. Aspiration can be hard to detect if individuals have poor reflexes and weak coughs. Gastro-oesophageal reflux (acid reflux), which sometimes causes heart-burn, can affect up to 50 per cent of people with an intellectual disability. Detecting acid reflux can be challenging as many people with “high and

39 Partial sightedness can include blurriness, reduced visual fields, tunnel vision and involuntary eye movements.

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complex needs” may not be able to describe heart burn symptoms.40 People with “high and complex needs” can also experience recurrent chest infections and upper airway obstructions (Wallis, 2009).41 In addition, difficulties in using medications (for example, inhalers) can hinder the management of lung disorders (Wallis, 2009). A thorough assessment and appropriate treatment is therefore crucial.

5. Dental care and oral health People with “high and complex needs” can experience poorer oral health compared to the general population. For example, people with “high and complex needs” have a higher prevalence of dental caries compared with the general population (Burton et al., 2009). In addition, specific disabilities can result in particular oral health needs. For example, people with Down’s syndrome can have large tongues and be congenital mouth breathers. Cerebral palsy might also lead to tooth grinding. Care needs therefore include good tooth brushing and oral hygiene. Barriers to oral assessment and care may include disabled persons’ (and carers’) apprehension in visiting the dentist; early timing of appointments (which are sometimes difficult to meet); the need for longer appointments (not always covered by government funding); changes to medications; the need for antibiotic prophylaxis (which requires supervision); dentist attitudes, lack of operator skill and poor communication; and poor surgery design (Watt-Smith, 2009). Dental care and oral hygiene is therefore important.

7. Nutrition, hydration and weight People with “high and complex needs” have a higher risk of weight and nutrition-related problems compared with the general population, such as chronic constipation, type 2 diabetes and coronary heart disease (Burton et al., 2009). Evidence suggests that early intervention is best and regular nutrition assessment should be carried out to reduce the occurrence of malnutrition, dehydration and chronic constipation, recurrent chest and urinary infection, aspiration pneumonia, and their subsequent effect on morbidity and mortality (Burton et al., 2009). Regular nutrition assessments are therefore crucial. Dysphagia is common in people with “high and complex needs” and is defined as eating or drinking disorders that can occur in the top part of the oral and digestive tract (Crawford, 2009). There are health risks associated with dysphagia for people with multiple disabilities such as chest infections, chronic lung disease, asphyxia, obstructive sleep apnoea and hypoxemia in oral feeding. In very severe cases, non-oral nutrition and hydration will be required. This includes tube feeding, and some individuals may need a tracheotomy (Crawford, 2009). Disabled people with “high and complex needs” may therefore need support with dysphagia.

8. Continence The development of continence (where bladder and bowels are controlled) is a complex learnt skill. Sometimes people with “high and complex needs” do not have the necessary development or maturational processes to make continence possible. They can however benefit from habits and prompts to use the toilet and strategies to

40 Reflux can lead to aspiration of stomach contents and may present as wheezing episodes, repeated pneumonias, intermittent tachypnoea and lobar or sub segmental areas of pulmonary collapse, or be misdiagnosed as stoma. 41 As well as changes to lung gas exchange and thoracic cage abnormalities.

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develop continence skills (Pawlyn & Budd, 2009). Support with toileting and continence may therefore be required.

9. Mobility, posture and comfort Position and protection of body shape is important for anyone with movement difficulties or physical disabilities. Many people with “high and complex needs” have difficulty moving and controlling their own body. As a result, they are at risk of developing body shape changes. Changes in body shape can impact on an individual’s health and ability to participate in daily activities (Hill & Goldsmith, 2009). Support with position, posture, comfort and protection of body shape may be necessary for people with “high and complex needs”.

10. Equipment, communication aids and assistive technology There are a number of mobility, medical and communication aids that can assist people with “high and complex needs”. These include wheel chairs, microswitches and feeding technology (Mansell, 2010), as well as hoists, bathing equipment, standing and walking frames.42 Microswitches can be used by a person to control aspects of their environment (Lancioni, O'Reilly, & Basili, 2001; Lancioni, O'Reilly, Oliva et al., 2001). Support with mobility, medical and communication aids may therefore be required.

Person centred planning, community inclusion and advocacy The literature highlights the importance of taking into account the relationship between the disabled person and their environment, to understand their unique individual needs and deliver appropriate services (Hogg, 1999; Mansell, 2010; Pawlyn & Carnaby, 2009). This can include person centred planning and community inclusion. A person centred planning approach is promoted in the literature and is based on the unique needs of the disabled person and their family/whānau (Mansell, 2010). Person centred planning aims to achieve optimal health and quality of life for disabled people (Mansell, 2010; Pawlyn, 2009). While this approach is used across the disability sector, it is particularly important and relevant to disabled people at the high end of the support needs spectrum. The need for community inclusion for people with “high and complex needs” is stressed in the literature (Hogg, 1999; Mansell, 2010). Key aspects of inclusion include:

• physical access – including access to buildings and meeting toileting needs for those that might need to be changed

• social access – disability awareness in the community, access to public facilities, leisure and education • intellectual access – access to learning, understanding and appreciation of things such as music, arts,

literature drama and dance • week day activities - further education, employment or day activities if people are physically and

intellectually able • housing

42 Based on external feedback.

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• good facilities - such as swimming pools which can be used for hydrotherapy. People with “high and complex needs” may well require others to advocate on their behalf to ensure their right and access to community inclusion.

Assessment The need for good clinical assessment as part of a person centred planning approach is stressed in some of the literature. Clinical assessment of people with “high and complex needs” requires a highly individualised approach. The assessment process may include a clinical interview, observation or the use of standardised tests and measures. There must be cooperation and collaboration between teams including the individual, family/whānau, support workers and medical specialists (Carnaby, 2009a). For the clinical assessment of people with PIMD, six recommendations have been made (Carnaby, 2009a) that are likely to be relevant to all people with “high and complex needs”. Good practice recommendations include:

1. agreement on terminology and inclusion criteria for PIMD by clinicians and multidisciplinary teams 2. taking a trans-disciplinary approach to meet the complexity of needs in a holistic and person led (rather

than discipline led) way 3. using a developmental model to assist those that support people with PIMD to appreciate the

importance of their work by assessing and showing level of functioning and changes made 4. considering the impact of neurological conditions and understanding the diagnosis fully 5. selecting standardised tests, measures and informants carefully 6. seeing assessment as an intervention rather than rushing into treatment delivery.

Summary In summary, key support requirements for disabled people with "high and complex needs” include developmental needs (such as support with everyday living activities and improved quality of life; effective communication; emotional wellbeing, mental health; and challenging behaviour). They may also have a range of health and health care needs (such as personal care; epilepsy; vision and eye health; hearing and aural health; respiratory health; dental care and oral health; nutrition, hydration and weight; continence; mobility, posture and comfort; and require support with equipment, communication aids and assistive technology). Support provided to disabled people with “high and complex needs” should be based on the unique needs of the disabled person and their family/whānau and include a good clinical assessment. These support needs can help inform the development and training needs of the workforce supporting disabled people with “high and complex needs”.

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Appendix B: Support needs of family/whānau This section examines the support needs of family/whānau. Given the support requirements of disabled people with “high and complex needs”, it is difficult to talk about these without referring to those of their family/whānau. As Bray and colleagues (2005, p.14) explain:

…the term “high and complex” needs refers to the needs of the disabled person being cared for. However, the implication is that the carer(s) of that person will also have high support needs as a carer. As a carer, there will also be other contextual factors that affect carer stress and burden, for example the number of other dependent persons for whom the carer is responsible.

Rewards and challenges for family/whānau Caring for a disabled son or daughter requires unconditional long term commitment. The caregivers of children and young adults are usually parents. However, siblings can sometimes take on the role when parents are no longer able to do so or are deceased (Bray et al., 2005). There are many challenges that families caring for a person with “high and complex needs” may face. Their exceptionally heavy responsibilities can include more than 10 hours a day of care on essential physical needs and round the clock continuous care often resulting in being woken up several times during the night (Bray et al., 2005; Hogg, 1999; Mansell, 2010; Teare, 2008). Care tasks may include physical management; lifting, handling and positioning; dressing, bathing, toileting and feeding (Hogg, 1999), as well as administering medication, particularly PRN medication. A New Zealand study found that many families do not receive help to care for their disabled family member with “high and complex needs” and feel they have little choice but to provide ongoing care (Bray et al., 2005). They have to juggle care with the maintenance of other family commitments, as well as employment and wider social and leisure activities. In addition, they must spend time and energy navigating the complexities of various support services (Bray et al., 2005; Hogg, 1999; Mansell, 2010). Families can also face prejudice, discrimination and low expectations (from professionals and agencies) in their attempt to get help and access services. Standard governmental rules and procedures are also barriers to obtaining support required. In addition, transitioning from child to adult services can be particularly difficult (Hogg, 1999; Mansell, 2010; Rosengard, Laing, Ridley, & Hunter, 2007). Carers and families in New Zealand do report positive outcomes and satisfaction from providing support to their disabled family members, including personal growth (Bray et al., 2005). However, there can be high personal costs to providing this care, which can extend to the whole family. Caring is continual and can be exhausting, with no time off for illness. It can often bring with it substantial emotional stress, sadness or grief. Wider family relationships can be affected and many carers experience smaller social and support networks.

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Support required by family/whānau Families have diverse experiences and differ in how resilient they are to the stresses associated with supporting disabled family members with “high and complex needs”. They may be required to advocate for their family member, experience financial pressures, and have difficulties managing family relationships and challenging behaviours exhibited by the disabled person. The most common family/whānau support needs identified in the literature include the need for accurate information; skilled, reliable and consistent staffing; and to be respected and listened to (Bernie, Cummings, & Cooper, 2007; Bray et al., 2005; Bunning, 2009; Diehl, Moffitt, & Wade, 2010; Mansell, 2010; Teare, 2008). Other support needs that may be required by family/whānau depending on their unique individual circumstances are summarised in Table 11. Table 11. Support Needs of Family/Whānau for Disabled People with “High and Complex Needs”

Need Description

Information

Parents expressed the need for accurate, timely information, including knowledge about: • appropriate and available services or ability to access them • illness specific information relevant to home care • well explained information on a child’s condition or diagnosis • accurate information on useful equipment and its availability • accurate information on financial assistance available and how to access it • information on social activities, for example in school holidays and after leaving school

Specialist training43

Parents expressed the need to be trained in the following areas: • children’s needs around growth and development and how to provide them • the communication and emotional needs of their child • children’s medical needs including medications and how to recognise side-effects • how to use complex equipment (including help with computer software and training) • training and assistance in planning and scheduling daily physical needs • training in safe ways to deal with aggression

Agency support Parents expressed the need for agency support to: • navigate links with a wide range of organisations • one person who can refer you to relevant people • access suitable services and equipment • receive ongoing professional advice and support • transition from child to adult services • ensure a needs assessment process focussed on the needs of the carer and their family

context, as well as the needs of the disabled person Parents also value:

• competent case management • good multiagency collaboration • good communication skills by agency personnel, including an ability to listen and

provide relevant information to families

43 Family caregivers may also require training in human resources skills related to employing staff. In New Zealand families can receive an individualised funding package to assist them to support their family member in the home. Hiring and managing staff requires a range of skills including recruitment, scheduling, training, engagement, retention and pay-roll. Some of the human resource issues involved in employing and training staff were discussed by several families at the Imagine Better: Individualised Funding and Self Directed Services Conference 2012: The Opportunities, Challenges and Cautions held in Hamilton, New Zealand.

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Need Description

Caregiving Parents often require the support of paid home and community support including: • reliable and consistent staffing • staff with adequate expertise • good communication between parents and caregivers

Practical support Practical in-home support is regarded as valuable including: • help with everyday household tasks, gardening and home maintenance • help with other children • support for the whole family to enable them to function as a family unit (for example,

grocery trips can be difficult, let alone holidays)

Emotional support Several areas of emotional support are mentioned including: • support groups for parents and advice, inspiration and support from other carers • counselling and support for parents and families (a listening ear) • support for siblings, grandparents and other extended family members • someone to talk to regarding the issue of death and dying

Respect Positive staff attitudes are often mentioned by family/whānau including: • respect, concern and understanding for the person with a disability and family/whānau • willingness by workers to provide information • feeling listened to and supported

Recognition of expertise

Parents need their experiential knowledge to be recognised including: • being given the opportunity to train staff to support their child • being fully included in the development of policy and services

Respite care Respite care needs to be: • available, adequate and locally based • planned, regular and preventative (rather than offered in response to a crisis) • available to cover unexpected commitments (for example funerals and other sick

children) • a good experience for the disabled person

Respite care may include day services

Crisis planning Families require support with crisis planning, including the development and documentation of a crisis plan

Future support Parents require suitable support once they are no longer able to care for their adult child

Funding and financial assistance

Some parents would prefer the ability to manage their own funds Many families experience financial hardship as a result of the extra costs of supporting a family member with a disability

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Summary In summary, family/whānau play a considerable role in supporting family members with “high and complex needs”. Common family/whānau support needs include the need for accurate information (for example about support services available, financial assistance, and medical conditions); specialist training to support family members; agency support to access services, equipment and professional advice; crisis planning support; respite care; support from skilled, respectful and reliable staff; and emotional and practical home and community support. While family/whānau may not have all these support needs, ideally the workforce will be aware of them and be able to respond appropriately.

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Appendix C: Detailed analysis of NZQA and non-NZQA training available and gaps

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Generic skills Table 12. New Zealand Training Addressing Priority Generic Skills Required by Workers and Gaps

Generic skill required Training that addresses generic skills Training coverage and NZQA gaps (red)

Good communication, relationship and listening skills Develop and demonstrate effective communication and active listening skills and techniques Able to build good relationships with other family members Demonstrate respect, concern and understanding for the family and the disabled person

Foundation Skills (Level 2) elective unit standards • 26982 – Level 2 (Core Competencies, Elective) Describe communication with

people with a communication disability.

Core Competencies (Level 3) elective unit standards • 23392 - Level 3 (Foundation Skills, Elective; Human Services, Compulsory;

Disability Information Provision, Compulsory; Senior Support, Elective) Describe ethical behaviour.

• 1810 – Level 3 (Senior Support, Elective) Explain resources and support agencies for families or whānau who have a member with a disability.

• 11097 - Level 3 Listen to gain information in an interactive situation. • 26975 – Level 3 (Senior Support, Elective) Communicate with consumers and

others, and access communication supports.

Senior Support (Level 4) elective unit standards • 18675 – Level 5 Demonstrate knowledge of the impact on family/whanau when

a family/whanau member has a disability.

Other NZQA unit standards • 1811- Level 3 (Human Services, Compulsory; Intellectual Disability, Elective;

Disability Information Provision, Compulsory) Demonstrate knowledge of the implications for a sibling when a family/whānau member has a disability.

• 1816 - Level 4 (Human Services, Compulsory; Intellectual Disability, Compulsory; Disability Information Provision, Compulsory) Analyse personal

• General coverage good at NZQA Level 2 and 3.

• Level 4 1816 & Level 5 18675 have been included in order to promote respect and understanding for the disabled person, the family and the family’s situation.

• Blueprint and Jtd training will assist with this understanding.

• A useful additional unit standard would be one that includes any unique communication skills required to provide quality home and community support, or a generic communications skills unit from another domain.

• Improved cultural knowledge around cultural practices, protocols and customs would aid communication amongst staff working across cultures.

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and community values and attitudes and their impact on people with disabilities.

Non-NZQA training • “Working with Family and Whanau”, Blueprint (1 day tailored course that

can be presented nationally. Learners will understand the impact of disability, mental illness and addictions on the family, discuss and apply different strategies for family inclusion and find solutions to working with whanau when the service user does not wish direct family involvement. Key legislation will also be discussed.

• “Working with Families”, Jtd Solutions (1 day course, coverage not specified). This course/ workshop would be tailored to suit participants and cover values, ethics and practices when working with families of Disabled children/adults.

Information needs of individuals and family/whanau Provide information to families on services and supports available

Core Competencies (Level 3) elective unit standards • 1810 – Level 3 Explain resources and support agencies for families or whānau

who have a member with a disability. • 1828 – Level 3 (Senior Support, Elective) Identify services available for people

with disabilities.

Senior Support (Level 4) elective unit standards • 24655 – Level 4 (Disability Information Provision, Compulsory) Support

people with information needs in a health, disability, or community setting “People credited with this unit standard are able to provide information about disability support assessment, planning, and coordination to target audiences; and provide information for disability support assessment, planning, and coordination to a person, and/or the person’s family/whanau, or support networks, in a health, disability, or community setting”.

• 24659 – Level 5 Coordinate support for a person in a health, disability, or community setting.

• Some coverage at NZQA Level 3. • However, Level 4 24655 and Level 5

24659 may be particularly relevant to this group of individuals and their family/whanau as families of individuals with “high and complex needs” have emphasised the need for relevant information and the need for support to deal with a large range of agencies.

• Gaps include skills needed to advocate and support family/whanau to access information and support services.

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Positive values and attitudes (including person centred planning) Demonstrate respect, concern and understanding for the family and the disabled person Understand disability issues, analyse and reflect on own and community values and attitudes as they impact on disabled people Understanding person centred planning approaches and embrace the underpinning values and attitudes Provide support based on the needs and priorities of disabled individuals and their families Ability to view the disabled person and their family as experts on their own lives

Values and attitudes Foundation Skills (Level 2) compulsory unit standards • 23686 –Level 2 (Core Competencies, Elective) Demonstrate knowledge of a

consumer’s rights in a health or disability setting.

Foundation Skills (Level 2) elective unit standards • 20829 – Level 2 Support a consumer's well-being and quality of life in a health

or disability setting.

Core Competencies (Level 3) compulsory unit standards • 27104 – Level 3 (Foundation Skills, Elective; Senior Support, Elective) Apply

the Code of Rights, and • 23380 – Level 3 (Foundation Skills, Elective; Mental Health, Compulsory;

Diversional Therapy, Compulsory; Disability Information Provision; Senior Support, Elective) Describe and apply culturally safe Maori operating principles and values, or

• 26970 – Level 3 (Foundation Skills, Elective) Provide support to people of different ethnicity.

Core Competencies (Level 3) elective unit standards • 23392 - Level 3 (Foundation Skills, Elective; Senior Support, Elective) Describe

ethical behaviour in a health, disability, or community setting.

Other NZQA unit standards • 1816 - Level 4 (Human Services, Compulsory; Intellectual Disability; Disability

Information Provision) Analyse personal and community values and attitudes and their impact on people with disabilities.

• Positive values and attitudes are covered

to some extent across the range of Level 2 to 4 unit standards listed.

• Gaps include a unit standard that addresses ‘valuing people’ which would encompass objectives around the NZ Disability Strategy, social model, empowerment, language and independence.

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Ability to engage with and support the quality of life of each unique individual

Non-NZQA training • “Values and Ethics in Disability Support”, Explore (one day taught nationally)

The aim of the course is to provide those working in the disability support sector with knowledge and skills to enable them to respect the values of those they work with and model ethical behaviour in their support practices while ensuring they meet organisational and legislative requirements.

Person centred planning Foundation Skills (Level 2) elective unit standards • 20829 – Level 2 Support a consumers’ well-being and quality of life in a health

or disability setting.

Core Competencies (Level 3) elective unit standards • 23925 – Level 3 (Foundation Skills, Elective; Senior Support, Elective) Support,

mentor and facilitate a consumer to maximise independence. • 1828 - Level 3 Identify services available to people with disabilities.

Senior Support (Level 4) elective unit standards • 23383 – Level 4 (Human Services, Compulsory; Intellectual Disability,

Elective) Establish and facilitate a learning plan with a person requiring health or disability supports.

• 24657 – Level 5 Develop a support plan with a person in a health, disability, or community setting: Includes working with the person, their family and wider support network.

• There are a range of unit standards across Levels 3-5 to develop skills in person centred planning.

• Level 3 1818 and Level 5 24657 have been included given the need to take family needs and relationships into account in planning support for a disabled person living at home.

• Gaps include being able to identify with the culture of the individual is imperative to all forms of planning as well as having an understanding of human development in terms of needs and a holistic approach, based on theories and models – in particular Te Whare Tapa Wha.

• Tailored training such as that run by SAMS may provide a forum for deeper discussion of personal planning for people with “high and complex needs” and their families.

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Other NZQA unit standards • 23371- Level 3 (Intellectual Disability, Compulsory) - Support personal

planning to enhance individual lifestyles with a person with a disability. • 1818 – Level 3 (Intellectual Disability, Elective; Human Services, Compulsory;

Disability Information Provision, Compulsory) Demonstrate knowledge of the value of relationships in people’s lives for disability support.

Non-NZQA training “Aspiration based personal planning”, SAMS (one or five day training course presented nationally): “Emphasis is placed on practical ways to enable people to create good lives for themselves. Effective aspiration based personal planning can be a foundation for service transformation”.

Community inclusion and advocacy Able to research and confidently include the disabled person in community activities Able to understand the disabled person’s right to community inclusion Able to advocate for the disabled person and identify when their right to community

Core Competencies (Level 3) compulsory unit standards • 23385 – Level 3 (Foundation Skills, Elective; Diversional Therapy,

Compulsory; Disability Information Provision, Compulsory; Senior Support, Elective) Describe self-advocacy and support a self-advocacy process in a health or disability setting.

Core Competencies (Level 3) elective unit standards • 23382 – Level 3 (Foundation Skills, Elective; Intellectual Disability, Elective;

Disability Information Provision; Senior Support, Elective) Support a person to participate as a member of the community.

• 1828 - Level 3 Identify services available to people with disabilities.

Other NZQA unit standards • 23372 – Level 3 (Human Services, Elective; Intellectual Disability, Elective;

Disability Information Provision) Describe law in relation to intellectual

• Generally good coverage at NZQA Level 3.

• However, there are gaps in developing skills in becoming an effective advocate in the broadest sense (including self-advocacy).

• 23372 Level 3 has been included as it pertains to the law in relation to those with “high and complex needs”, including consumer rights and the legal responsibilities of the support worker.

• 1816 Level 4 has been listed here because community acceptance and inclusion can be a particular challenge for disabled people with “high and complex needs”.

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inclusion is not recognised or compromised

disability and high and complex needs and legal services available to consumers.

• 1816 - Level 4 (Human Services, Compulsory; Intellectual Disability; Disability Information Provision) Analyse personal and community values and attitudes and their impact on people with disabilities.

Key professional skills Need to be attentive, motivated, responsible, reliable and committed

Confident in working autonomously, in isolation from colleagues Ability to learn on the job Requires skills in time management, working within a team, report writing, professional boundaries and cultural awareness

Foundation Skills (Level 2) compulsory unit standards • 23451 – Level 2 (Core Competencies, Elective) Demonstrate knowledge of the

role of the support worker.

Foundation Skills (Level 2) elective unit standards • 23926 – Level 2 (Core Competencies, Elective) Demonstrate knowledge of the

impact of change in support services in a health or disability setting – including describing “the impact of change in support services on the consumer, family/whānau, and/or significant others”.

• 23453 – Level 2 (Core Competencies, Elective) Describe a safe and efficient working environment for support workers in a health or disability setting.

• 23390 - Level 2 (Core Competencies, Elective; Health Services; Intellectual Disability, Compulsory) Observe, report, and document changes in a person’s condition.

Core Competencies (Level 3) compulsory unit standards • 26970 – Level 3 (Foundation Skills, Elective) Provide support to people of

different ethnicity, or • 23380 – Level 3 (Foundation Skills, Elective; Mental Health, Compulsory;

Diversional Therapy, Compulsory; Disability Information Provision; Senior Support, Elective) Describe and apply culturally safe Maori operating principles and values.

• Testing of work ready skills required for support work can generally be covered off during an employment interview.

• However, induction training and/or additional training may be useful to support individuals to work in home and community settings, isolated from colleagues.

• 23926 has been included in order to support and encourage worker commitment, as staff continuity has been identified as a need by family/whanau.

• It should be noted that those working with people with “high and complex needs” may need to have training in specialist skills prior to starting to work with these individuals.

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Core Competencies (Level 3) elective unit standards • 20964 – Level 2 (Human Services, Compulsory) Maintain documentation as a

support worker. • 11097 – Level 3 Listen to gain information in an interactive setting. • 3491 – Level 3 (Senior Support, Elective) Write a report.

Collaboration and interagency working Ability to collaborate with a range of professionals and other agencies when required

Senior Support (Level 4) elective unit standards • 24659 – Level 5 Coordinate support for a person in a health, disability, or

community setting.

Other NZQA unit standards • 24660 – Level 5 (Disability Information Provision, Compulsory) Collaborate

within and across sectors in a health, disability or community context. This unit standard is intended for people who are, or who intend to be employed in disability support assessment, planning, and coordination in the community support sector.

• Level 2 and 3 training identified as appropriate for the other generic skills should equip a support worker with some of the communication and advocacy skills required to collaborate effectively with other professionals and agencies.

• The Level 5 unit standards listed are more relevant to equip people for the discretionary and complex nature of interagency working.

Personal care Ability to provide support with all aspects of self-care including toileting, dressing and showering

Core Competencies (Level 3) elective unit standards • 23386 – Level 3 (Foundation Skills, Elective; Intellectual Disability, Elective;

Senior Support, Elective) Support a person to meet personal care needs.

• 23386 should provide a good basic foundation for providing personal care to a disabled person with “high and complex needs”.

• Specialist personal care skills are also required including eye health, aural health, respiratory care, dental care, dysphagia care, continence and mobility and posture (see Specialist Skills Table).

Behaviour

Foundation Skills (Level 2) elective unit standards • 26976 – Level 2 (Core Competencies, Elective) Describe the use of enablers,

• Level 2 and 3 unit standards provide a basic grounding. However, these units

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Understanding of the variety of types and causes of challenging behaviour (including self-injurious behaviour) Understanding of the range of best practice interventions Ability to learn from the individual (and those who know the individual) positive strategies based on intervention models that enhance quality of life, physical, emotional and mental wellbeing

restraints, and safe restraint practice.

Core Competencies (Level 3) elective unit standards • 23388 – Level 3 (Foundation Skills, Elective; Diversional Therapy.

Compulsory; Senior Support, Elective) Provide support to a person whose behaviour presents challenges.

Senior Support (Level 4) elective unit standards • 23374 - Level 3 (Intellectual Disability, Elective) Describe Autism Spectrum

Disorders (ASD) and available supports. • 27315 – Level 4 Describe and implement strategies for deescalating unwanted

behaviour. • 18684 – Level 5 (Senior Support, Elective) Design, implement, and evaluate a

multi-element plan to support a person with challenging behaviour. Non-NZQA training: • “ABC Behaviour Management”, Blueprint (1 day tailored course that can be

presented nationally: “For people working in the disability, mental health and addiction sectors who are dealing with a distressed or agitated consumer, a positive outcome can often be achieved through using effective de-escalation techniques. This workshop will examine the basic principles of behaviour, possible causes of challenging behaviour and focus on various strategies that people working in the disability, mental health and addiction sectors can implement to help defuse the situation reducing the risk of trauma and injury to themselves and the consumer”.

• “Managing Challenging Behaviour”, VV Training (1 day course available nationally): “This is a one-day intensive session to help staff understand levels of escalation and the most effective intervention for each level”.

• “Supporting Individuals with Complex Needs”, Solutions NZ, (1 day tailored

are not currently providing the scope of skills required in the area of challenging behaviour at this level. There is a significant gap in a theory based unit that identifies challenging behaviours, causes/triggers and specific strategies that workers need to be aware of that could be used to reduce challenging behaviours (particularly in the area of responding to aggressive behaviour using a non-harmful management system).

• 23374 Level 3 has been listed as ASD support skills are relevant for some individuals with “high and complex needs”.

• 27315 Level 4 and 18684 Level 5 will better equip workers to support a person with “high and complex needs” with challenging behaviour. Two additional non-NZQA courses are listed which could be tailored (if necessary) to workers supporting with people with “high and complex needs”. These courses may provide a good opportunity for a worker to explore behaviour management strategies useful for the particular disabled person/people they are currently supporting.

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course that can be presented nationally): “This course focuses on those individuals with behavioural and/or communication difficulties which impact on their current lifestyle”. “Autism Awareness”, Tautoko (six hour workshop, mid to lower North Island): “Participants will learn about: history of diagnosis, triad of impairments, positive expectations and approaches, individual help, structure, empathy, low arousal and links”.

• “One Day Autism Spectrum Disorders (ASD) Training Workshop”, Dunedin Community Care Trust (one day, Dunedin): “The workshop includes experiential activities to enable staff to gain some understanding of the challenges faced by a person with and ASD”.

Mobility, posture and comfort Awareness of the potential mobility, posture and comfort needs of people with “high and complex needs”, including the need to protect body shape Ability to utilise specialist equipment when necessary Willingness and capacity to work with postural care professionals to develop and follow a good postural care plan

Foundation Skills (Level 2) elective unit standards • 23453 – Level 2 (Core Competencies, Elective; Human Services, Compulsory)

Describe a safe and efficient working environment for support workers.

Core Competencies (Level 3) elective unit standards • 26981 – Level 3 (Foundation Skills, Elective) Describe risks, impacts, and

actions for falls and minimise risk of falls. • 5012 – Level 3 (Foundation Skills, Elective; Intellectual Disability, Elective;

Diversional Therapy, Compulsory; Senior Support, Elective) Demonstrate musculoskeletal care and handle people safely.

• 26977 – Level 3 (Foundation Skills, Elective) Support a person to use moving and assistive equipment safely.

Non-NZQA training: • “Moving and handling”, Explore (one day course taught nationally): The aim

of this session is to provide support workers with the knowledge and skills to enable them to use their body properly when moving or handling people or equipment thereby reducing the risk of injury to themselves and the people they support.

• General coverage good at NZQA Level 3

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Specialist skills Table 13. New Zealand Training Addressing Specialist Skills Required by Workers and Gaps

Specialist skill required Training that addresses specialist skills Training coverage and NZQA gaps (red)

Assessment Understanding the importance of assessment and the need to work within a team based approach that includes family, friends and a range of health and other professionals.

Senior Support (Level 4) elective unit standards • 24656 – Level 5 (Disability Information Provision, Compulsory) Support a

person to identify aspirations and needs in a health, disability, or community setting: “Need for specialised assessment is identified and actioned in accordance with the organisation’s policies and procedures”.

• Level 5 24656 raises worker awareness of the assessment process and the need for good assessment. However, this is a practical based unit standard and therefore requires a high level of awareness and knowledge.

• The National Certificate in Disability Support Assessment, Planning, and Coordination (Level 5) is being trialled in 2012 and may include unit standards relevant to this skill. The pilot will be reviewed at the end of 2012 and a decision will be made whether to continue with the qualification.

• Gaps include unit standards at an appropriate level for carers that include theory based on knowledge about assessment processes and the importance of team work and liaison.

Quality of life Ability to support a person with “high and complex needs” to engage in all activities of daily

Foundation Skills (Level 2) elective unit standards • 20829 – Level 2 (Core Competencies, Elective) Support a consumer's well-

being and quality of life in a health or disability setting. Core Competencies (Level 3) compulsory unit standards • 23380 – Level 3 (Foundation Skills, Elective; Mental Health, Compulsory;

Diversional Therapy, Compulsory; Disability Information Provision,

• Level 2 and 3 cover provide a basic grounding in quality of life issues.

• However, these units do not provide sufficient understanding of the quality of life concept and its importance. This would enable trainees to value the

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living, for example shopping, leisure and social activities Being able to identify and understand the concept of quality of life Understanding of person centred and holistic approaches to care (including a Maori perspective)

Ability to engage with and support the quality of life of each unique individual in their care using appropriate techniques

Compulsory; Senior Support, Elective) Describe and apply culturally safe Maori operating principles and values, or

• 26970 – Level 3 (Foundation Skills, Elective) – Provide support to people of different ethnicity.

Senior Support (Level 4) compulsory unit standards • 26854 – Level 4 Recognise and respond to changes to the health and wellbeing

of consumers in an aged care, health, or disability context. Other NZQA unit standards • 1818 – Level 3 (Intellectual Disability, Elective; Human Services, Compulsory;

Disability Information Provision) Demonstrate knowledge of the value of relationships in people’s lives for disability support.

• 5786 – Level 4 (Diversional Therapy, Compulsory) Develop, implement, evaluate and adapt personal diversional therapy care plans.

• 5789 – Level 4 (Diversional Therapy, Compulsory) Identify, implement, evaluate and adapt diversional therapy activities for people with identified health conditions.

uniqueness of quality of life to each individual they work with.

• The National Certificate in Disability Support Assessment, Planning, and Coordination

• 23380 considers the Maori culture in terms of meeting health and wellbeing needs which is closely linked to quality of life. However, it is more suitable to a residential care facility than home care environment.

• Level 4 Diversional Therapy unit standards have been included as they may be relevant for planning and using stimulation techniques with people with “high and complex needs”. Other supporting unit standards form the diversional therapy qualification, such ensuring a safe diversional therapy environment, may also be relevant.

Specialist communication skills Awareness of the specific communication characteristics of each disabled person they work with

Foundation Skills (Level 2) elective unit standards • 26982 -Level 2 Describe communication with people with a communication

disability.

Other NZQA unit standards • 16874 – Level 4 (Human Services, Compulsory; Intellectual Disability Level,

Elective; Disability Information Provision, Compulsory; Diversional Therapy, Compulsory) Demonstrate an ability to support a person with a communication impairment: communication is viewed as “verbal, vocalisation,

• Level 2 unit standards provide a basic grounding.

• Level 4 unit standards will further equip workers to communicate with disabled people with communication impairment. However, it should be noted that 27467 Level 4 is principally designed for those with brain damage caused by injury or disease so may or

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Awareness of the right to choice (expressed through communication) for people with “high and complex needs” Awareness of what communication aids/strategies are available for someone with a communication impairment

Ability to engage in some key activities to improve the communication and the sensory experience of a disabled person

body language, gesture” • 27467 – Level 4 (Health Assistant) Health assistant strand - apply supported

communication strategies as a health assistant (relevant to brain damage/aphasia).

Non-NZQA training • “Supporting Individuals with Complex Needs”, Solutions NZ (one day, can

be taught nationally): “This course focuses on those individuals with behavioural and/or communication difficulties which impact on their current lifestyle” (DWD Training Directory).

• “Makaton Beginners Workshop”, Explore (two days, offered from mid to lower North Island): “Makaton is a simple standardised sign language and this training is designed to provide basic interactive vocabulary for adults and children and those who share their lives”.

• New Zealand Sign Language (NZSL) is the most recognised form of sign language in NZ. Makaton NZ has been developed from NZSL. NZSL offices throughout the country offer courses from beginners to advanced and can be accessed through their website.

may not have application for individuals with “high and complex needs”.

• Solutions NZ and Explore will provided further relevant and practical training for workers supporting people with “high and complex needs”.

• An awareness and understanding of how to promote communication for a person with a communication impairment through the use of specific communication aids, strategies or technologies is also required (see Assistive Technology below).

Emotional Wellbeing Understanding of holistic approaches to care, such as ‘intensive interaction’

Core Competencies (Level 3) compulsory unit standards • 26970 – Level 3 (Foundation Skills, Elective) Provide support to a person of

different ethnicity, or • 23380 – Level 3 (Foundation Skills, Elective; Mental Health, Compulsory;

Diversional Therapy, Compulsory; Disability Information Provision; Senior Support, Elective) Describe and apply culturally safe Maori operating principles and values.

Core Competencies (Level 3) elective unit standards • 27141 – Level 3 (Foundation Skills, Elective; Mental Health, Elective; Senior

• 26851 Level 5 will be useful to workers in promoting an understanding of general wellbeing principles and practices.

• Unit standards on cultural responsiveness and non-NZQA training have relevance to this skill and its focus on holistic approaches to care that would include the personal, social, spiritual, cultural, physical components of self.

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Support, Elective) Describe own culture, cultural groups, and responses to cultural issues.

• 25987 – Level 3 (Foundation Skills, Elective; Human Services, Elective; Intellectual Disability, Elective; Mental Health, Elective; Disability Information Provision, Compulsory; Senior Support, Elective) Describe culturally safe principles and Pacific values for a consumer.

Senior Support (Level 4) compulsory unit standards • 26851 – Level 5 Describe and implement health and wellbeing strategies for

consumers.

Other NZQA unit standards • 1818 – Level 3 (Intellectual Disability, Elective; Human Services, Compulsory;

Disability Information Provision) Demonstrate knowledge of the value of relationships in people’s lives for disability support.

Non NZQA training • CALD Cultural Courses and Resources (various durations, Auckland and

Warkworth). • “Pacific Cultural Competency Workshop”, Focus on Pacific Limited (2 day

Wellington Central): “will equip participants with a basic understanding of Pacific peoples teach how to apply the knowledge to work more effectively with Pacific Island peoples”.

Mental health Awareness of the role of mental health in overall health

Core Competencies (Level 3) elective unit standards • 26971 – Level 3 (Mental Health, Compulsory) Describe factors that contribute

to mental health wellbeing and mental health problems • 26972 – Level 3 (Mental Health, Compulsory; Senior Support, Elective)

Describe interventions and models used by mental health and addiction

• There is good general coverage at NZQA Level 3.

• However, it is unclear whether these unit standards sufficiently address dual diagnosis.

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An understanding of specific conditions such as psychosis, depression, anxiety and challenging behaviour Understanding of dual diagnosis and the implications Helping people with ‘high and complex needs’ and mental health issues better cope with daily life

support workers with service users • 23373 – Level 3 (Intellectual Disability, Elective; Human Services, Elective)

Demonstrate knowledge of the impact of mental illness on a person with an intellectual disability (including a description of conditions)

Epilepsy An understanding of what epilepsy and seizures are, recognizing seizures, different seizure types, causes and triggers, investigations and treatment Knowledge of what to do in the event of a seizure, the recovery

Core Competencies (Level 3) elective unit standards • 20965 – Level 3 (Human Services, Elective; Intellectual Disability, Elective)

Demonstrate knowledge of epilepsy in a community field work setting

Non-NZQA training • “Epilepsy Management”, Explore, (one day tailored course that can be taught

from mid-to lower North Island): “The purpose of this session is to introduce support workers to knowledge and skills which may enable them to safely support a person with epilepsy; to ensure their support is in line with the policies and procedures of the organisation. The session is aimed at support workers who are not experienced with supporting people with epilepsy or those people who want a general overview of epilepsy management to broaden their knowledge; learners undertaking unit standard 20965”

• 20965 appears to cover all necessary components of epilepsy training except for ‘recording and monitoring’, ‘observing subtle seizures’, ‘what to do in the event of a seizure’ and ‘PRN medication’..

• Completing an epilepsy training course such as the one offered by Explore, would make possible practical skill development, that is ’what to do in the event of a seizure’.

• Epilepsy NZ offers training which addresses gaps identified above.

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position, administration of medication and rectal diazepam Ability to monitor seizure occurrences Knowledge of epilepsy services available and how to access them

• Epilepsy NZ offers excellent training in the form of seminars that are available throughout the country.

Vision and eye health Awareness of the range of vision and eye health issues and supports that may be required, including the need for a vision assessment

Other NZQA unit standards • 24895 – Level 3 (Vision & Hearing Screening) Demonstrate knowledge of the

visual system and vision impairment

• 24895 would allow workers to develop an awareness of visual impairment and referral pathways.

Hearing and aural health Awareness of a possible hearing impairment and its potential impact on communication and learning

Other NZQA unit standards • 23377 – Level 3 (Human Services, Elective) Describe and use visual strategies

for communicating with deaf and hearing impaired people • 23375 – Level 3 (Vision & Hearing Screening; Diversional Therapy,

Compulsory) Demonstrate knowledge of hearing impairment.

Non-NZQA training • Deaf Awareness Training - Deaf Aotearoa New Zealand (various durations,

tailored to meet specific needs, taught nationally).

• 23375 would allow workers to develop an awareness of hearing impairment and referral pathways. It is however not specific to disabled people with “high and complex needs”.

• There is a National Diploma in Hearing Therapy (Level 4) qualification designed for people who wish to work in the field of adult aural rehabilitation. This may include some relevant unit standards.

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Confidence to organise a hearing test and support for person should interventions be recommended

However currently there are no providers offering this qualification.

Respiratory health Awareness of possible respiratory conditions and the complexities of detection and treatment May require skills and training in home based administration of medication and general respiratory care (for example, oxygen dependence)

Other NZQA unit standards • 27468 – Level 4 (Health Assistants, health assistants strand, Elective) Apply

safe swallowing strategies as a health assistant in an aged care, health, or disability context (for those with dysphagia)

• 27468 would provide a basic grounding. However, it does not cover the whole range of respiratory conditions that people with “high and complex needs” may experience, such as training to support an oxygen dependent person.

Dental care and oral health Knowledge of (and training in) the best ways to brush teeth and brushing aids available Knowledge of a what constitutes a healthy diet (such

Core Competencies (Level 3) elective unit standards • 23386 – Level 3 (Foundation Skills, Elective; Intellectual Disability) Support a

person to meet personal care needs.

Other NZQA unit standards • Level 3 Health Assistants Qualification, dental assistants strand

• In many cases 23386 will cover the skill required for supporting an individual to brush their teeth.

• It may be possible that a unit standard from the Health Assistants qualification Level 3 – dental assistants strand, could be modified or developed to provide training on correct tooth brushing techniques for disabled people with “high and complex needs”, tooth

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as five pieces of fruits and vegetables daily, limiting foods known to cause decay) and the use of sugar-free medications

brushing aids, causes of tooth decay and the use of sugar-free medications.

Nutrition, hydration and weight (including dysphagia) Awareness of the importance of and assessment of nutritional intake Knowledge of medication and menu planning Awareness of signs of dehydration and constipation Understand the process of normal swallowing and be able to identify signs and symptoms of concern Awareness of the range of alternative methods nutrition can be delivered including

Foundation Skills (Level 2) elective unit standards • 26978 – Level 2 (Core Competencies, Elective) Support a person to eat and

drink.

Senior Support (Level 4) elective unit standards • 27460 – Level 3 (Health Assistants, dietician strand, Elective) Describe clients’

nutritional requirements and feeding issues in an aged care, health, or disability context.

Other NZQA unit standards • 27455 – Level 4 (Health Assistants, health assistants strand, Elective) - Conduct

nutrition screening with, and provide education to, adult clients in an aged care, health, or disability context.

• 27468 – Level 4 (Health Assistants, health assistants strand, Elective) Apply safe swallowing strategies as a health assistant in an aged care, health, or disability context (for those with dysphagia).

• Level 2 and 3 unit standards cover general (rather than specialist) feeding and nutrition needs of disabled people. However, 27460 does require the student to describe ‘assistive devices’.

• Level 4 27455 may have relevance as one case study conducted by a student must be a high risk client.

• Level 4 27468 covers safe swallowing • These unit standards do not appear to

cover the practical aspects of delivering nutrition through alternative means, such as feeding tubes/tracheotomy.

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eternal feeding (feeding tubes) or parenteral (intravenous) Ability to deliver nutrition through alternative means if required

Continence Possibly complete a continence assessment Understand the particular issues for that individual Provide and/or follow a care plan that will promote continence Manage incontinence appropriately Promote the health and well-being of the person being cared for

Foundation Skills (Level 2) elective unit standards • 27140 – Level 2 (Core Competencies, Elective) Describe continence,

incontinence, interventions, and required reporting (including describing continence assessment).

• 27140 provides good coverage of this skill.

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Equipment, communication aids, assistive technology Awareness of the range of technology and aids available

Ability to correctly operate equipment and develop and/or follow a care plan using technology and aids

Other NZQA unit standards • 27469 – Level 3 (Health Assistants, health assistant strand, Elective) - Use

specialised assistive and/or therapeutic equipment with clients as a health assistant/rehab strand: “Specialised equipment may include but is not limited to: therapeutic equipment for clients’ personal care or household management, mobility aids or therapeutic gymnastic equipment, augmentative and alternative communication equipment or pictographic communication resources”.

• 27469 provides good coverage. • It does however not appear to include

feeding aids (discussed under Nutrition above).

Medication management Knowledge of medication names and what they are taken for Awareness of the adverse effects of particular medications and processes to follow when there is an adverse effect Knowledge of PRN medication and procedures

Foundation Skills (Level 2) elective unit standards • 23685 – Level 2 (Core Competencies, Elective) Describe pre-packaged

medication used in a health and disability setting.

Core Competencies (Level 3) elective unit standards • 20827 – Level 3 (Senior Support, Elective; Human Services, Elective; Health

Assistants, healthcare assistants strand, Elective) Support a person to use prescribed medication in a health and disability context.

Non-NZQA training • Medication Management – Blueprint (workshop) dealing with a range of

issues including biology, safe administration of medication, and the role support workers can play in assisting adult clients to get the most benefit from their medication.

• 23685 and 20827 provide some coverage of this skill.

• Gaps include information on the adverse effects of medications and PRN medications

•

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Appendix D: International resources

Best practice resources Some of the literature reviewed gives substantial detail on best practice care approaches for certain areas of need, particularly medical or physical health care needs. A number of chapters from the collection edited by Pawlyn and Carnaby (2009a) are particularly useful as listed below.

• Vision and eye health - range of conditions given, what to look for, Chapter 10 (Levy, 2009). • Hearing and aural health - range of conditions given, what to look for, Chapter 11 (Waite, 2009). • Respiratory health - range of conditions given, Chapter 12 (Wallis, 2009). • Dental care and oral health - range of conditions and how they affect oral health, information on how to

provide treatment, Chapter 13 (Watt-Smith, 2009). • Dysphagia – includes tables of signs and symptoms, Chapter 14 (Crawford, 2009). • Nutrition, hydration and weight - guides to feeding and hydrating provided, Chapter 15 (Burton et al.,

2009). • Continence - information charts provided, Chapter 16 (Pawlyn & Budd, 2009). • Mobility, posture and comfort - guides provided, Chapter 17 (Hill & Goldsmith, 2009). See also Hill

(2011) about training options.

International training evaluation and case studies The literature review identified published evaluations and case studies of training developed for workers supporting disabled people with “high and complex needs”. These are listed below.

• Giving options to people – The purpose of this study was to evaluate a staff training package on staff members’ ability to present single-stimulus choice opportunities in daily routines for four adults with profound mental retardation and severe physical disabilities (Salmento & Bambara, 2000).

• Mindfulness resulting in increased happiness - This study provides evidence that increasing the mindfulness of a caregiver (through training in “mindfulness”) can produce a substantial increase in the levels of happiness displayed by individuals with profound multiple disabilities (Singh et al., 2003).

• Active support promoting participation – An active support programme designed to increase participation in activities by adults with severe mental retardation living in the community. Active support resulted in increased engagement in activities, especially for people with “lower adaptive behaviour” (Jones et al., 2001).

• Mutual communication and interaction - PICTURE IT (a communication training package designed for carers of adults with severe and multiple disabilities) was conducted with carers of individuals with severe and multiple disabilities. Results from the administration of a series of assessments indicated limited changes in carers' knowledge and attitudes about communication of people with significant communication impairment. Improved interactions were demonstrated by increased initiations and more appropriate responses to the individuals' communication attempts by the carers. The individuals responded more frequently to the increased communication opportunities. The ability to formulate appropriate communication goals and to make some changes to the individual's social environment were also noted (Bloomber et al., 2003).

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• Care staff’s communication - The study examined the effects of training on care staff's communication to service users with profound and severe learning disabilities. The interdisciplinary and integrated training programme had facilitated a willingness to change and led to the development of a positive view of each other's practice (Dobson et al., 2002).

• Positive environment - This study evaluated the effects of a Positive Environment Program (PEP) on the behaviors of residents and staff in a state-operated residential facility during a 2½ year period. The results of this project showed improvements in staff interactions, resident interaction with leisure materials, improved levels of alertness and increased happiness (Realon et al., 2002).

• Postural care - Skills for Health worked in partnership with Postural Care CIC in the UK on a project to deliver a one year training programme for the workforce supporting the needs of children and young people with complex health care needs. The program was evaluated with positive results (Hill, 2011).

• Specialised medical care - A health support program in South Australia is described that provides support by a community care worker who has been trained and competency assessed by a registered nurse to undertake complex health activities. The program complements mainstream health services by maximizing the opportunity for people with disabilities to manage their conditions without unnecessary hospitalisation or undue health professional intervention in their daily lives (Caudrey & Dissinger, 2007).

• Health care needs – A UK programme of learning is described which is aimed at meeting the needs of health care assistants (HCAs) who provide support for children with complex and continuing health needs and their families. Following a pilot study of the principles of course provision, a Certificate in Higher Education in care of the child with complex needs was developed. The programme used a distance learning approach and provided a part-time, flexible, modularised study pathway. This case study describes the rationale for the development of learning opportunities in this area, and how the pilot study informed programme development. Despite the increasing number of children who have complex and continuing health needs, these needs are often mainly provided for by family members. One problem which has been reported in obtaining support for families is recruiting and retaining staff. Providing this type of input for HCAs may assist in their recruitment and retention and thus be instrumental in increasing the number of people who are available to take on such roles. This has the potential to assist in reducing the amount of unpaid care work which becomes the remit of families because of the absence of other options (Hewitt-Taylor, 2012).

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