Assisting People With Disabilities And Their Families/Whānau Live Everyday Lives In Everyday Ways

Assisting people with disabilities and their families/whānau live everyday lives in everyday ways.

Report on the experiences of people with disabilities and their families / whānau with the Ministry of Health’s Current Disability Support Services and System in the Western Bay of Plenty.

Prepared for Anne O’Connell

Group Manager Disability Support Services

National Health Board

Ministry of Health

Prepared by Karen Newton, Nan Wehipeihana, Elizabeth Proctor & Clark Tuagalu.

Independent researchers and evaluators

May 2011

Disclaimer: The Ministry of Health has undertaken this research for the purpose of seeking relevant baseline information on disabled people's experience of the current disability support services and systems in the Western Bay of Plenty/Tauranga area prior to the Demonstration Project becoming fully implemented in that region. The results give reliable and valid information from the respondents included in the sample. Claims that the results can be applied generally to all disabled people, family and whānau in the Western Bay of Plenty cannot be made with confidence.

1 Table of Contents

Executive Summary...... 5

Background to the research...... 7

Research objectives...... 8

Method...... 9

Research team...... 9

Secondary quantitative (desk) research...... 9

Primary qualitative research...... 9

Sample design...... 9

Fieldwork approach...... 11

Questionnaire/topic guide design...... 12

Findings: Desk Research...... 13

Provision of disability support services in the Western Bay of Plenty...... 13

National Context...... 13

NASC organisations...... 13

Support Net (Kupenga Hao Ite Ora)...... 14

Current providers of DSS...... 14

Disability Information and Advisory Services (DIASs)...... 17

Residential and Non-residential funding...... 18

Funding for non-residential clients by disability support type...... 19

Funding for non-residential clients by ethnicity...... 20

Funding for non-residential clients by age...... 21

Funding for non-residential clients by SPA...... 22

Individualised Funding for HCSS...... 23

Summary – Desk Research...... 24

2 Findings: Primary qualitative research...... 25

Experiences of people receiving disability support services...... 25

Living a good life?...... 25

Who is living a good life?...... 26

Connections, Whanaungatanga...... 29

Access to information about services and supports...... 31

Provision of services and supports...... 32

Housing...... 39

Employment...... 40

Financial Resources...... 41

Tikanga Māori...... 43

Pasifika...... 44

Discussion of results...... 45

Better information about supports and services...... 45

Support to access formal and informal (natural) services and supports...... 46

Clients need to have more control, flexibility and choice...... 46

More services need to incorporate tikanga Māori...... 47

Appendix One: Fieldwork Materials...... 48

a) Advance Notice of research project...... 48

b) Additional Information mailed to likely participants...... 49

c) Informed Consent Form...... 51

d) Shortened Questionnaire...... 52

Appendix 2: Questionnaire...... 53

3 List of Figures

Figure 1. Percentage of clients and funding by residential versus non-residential support...... 19

Figure 2. Percentage of clients and funding for non-residential services...... 20

Figure 3. Percentage of clients and funding by ethnicity...... 21

Figure 4. Percentage of clients and funding by age...... 22

Figure 5. Percentage of clients and funding by SPA...... 23

List of Tables

Table 1. Sample description...... 10

Table 2. Ministry of Health funded Disability Support Services in the Western Bay of Plenty...... 15

Table 3: IF clients by ethnicity and age...... 24

Table 4. Description of ‘good life’ groups...... 26

Table 5. Evidence of living a good life...... 29

4 Assisting people with disabilities and their families/whānau live everyday lives in everyday ways.

Executive Summary

The Western Bay of Plenty (including Tauranga) has been chosen as the first demonstration site for a New Model of supporting people with disabilities and their families and whānau.1 This report provides information on the current disability support services (DSS) and system in the Western Bay of Plenty. This information will be used as baseline information prior to the commencement of a developmental evaluation of the New Model.

Data collection for the research project included secondary/desk research as well as qualitative primary research with a sample of twenty-four people with disabilities and their families and whānau who receive non-residential disability support services funded by the Ministry of Health.

The key findings from the secondary/desk research include the following:

 During 2010, the Ministry of Health provided 877 clients in the Western Bay of Plenty with disability support services (DSS) at a cost of $12.7 million.

 Two-thirds of this funding was for residential care and was received by 17% of clients.

 Most clients (83%) are non-residential and they primarily received Home and Community Support Services (HCSS) and/or Carer Support services.

 HCSS accounted for most of the non-residential DSS funding (60%); Carer Support services accounted for 22%.

 In 2010, 2% of non-residential clients received their funding for HCSS through Individualised Funding (IF).

 As at March 2011, the Ministry of Health had 166 contracts with organisations to provide services to people with disabilities in the Western Bay of Plenty.

The key findings from the primary qualitative research include:

 It is difficult for the people we interviewed to live a good life; much of the time they are unable to do everyday things in everyday ways. Some of the difficulties they experience are beyond the control of the Ministry of Health but some are related to the current disability support services and system.

1 Throughout this document the term “family and whānau” is taken to include, where appropriate, family, whānau, aiga or family carers.

5  The issues that people we interviewed with disabilities and their families and whānau believe will enable them to live a good life are:  Better information and better access to information about supports and services:

. The people we interviewed reported that information and advice is not easily accessible and/or is not the information they want and need.

 Support to access formal and informal (natural) services and supports:

. Connections to family, whānau and community provided very important support to most of the people we interviewed

. Some of the people we interviewed believe there is support available and services are available but they are unable to access them

. Some are overwhelmed by the number of providers they have to deal with

. Others feel they need a ‘key person’ to help them understand what is available and how to access it.

 The need for more control, flexibility and choice over the disability services and supports they receive:

. Most of the people we interviewed believe services are inflexible and that they have little control and not much choice. The research report provides many examples that illustrate how lack of flexibility, choice and control play out in the realities of the everyday lives of people with disabilities and their families and whānau.  More services need to incorporate tikanga Māori protocols and practices:

. The research provides examples of culturally insensitive and inappropriate services being delivered to Māori with disabilities. Some Māori we interviewed would like to see tikanga protocols and practices to be more consistently and more broadly exercised within services.

6 Background to the research

Following an inquiry into the quality of care and service provision for people with disabilities (CBC Min (09) 7/2), the Ministerial Committee on Disability Issues agreed to a ‘New Model’ for supporting people with disabilities.

Compared to the existing or current approach, the New Model provides a stronger focus on:

a) Support for people with disabilities to do ‘everyday things in everyday ways’, and

b) Building individual, family, community and mainstream government agency capacities and support options.

Key features of the New Model include Local Area Coordinators (LACs) who will be the (or a) primary source of information and personal assistance. Currently information is provided by a variety of contracted organisations, and personal assistance is not available to everyone.

Another feature of the New Model is a change in the purchasing arrangements from support being delivered through contracted service providers to wide availability of individualised funding (IF) for most types of support.

Both of these features of the New Model are underpinned by the philosophy of person-centred approaches (Bennett & Bijoux, 2009)2 and are designed to provide people with disabilities and their families/whānau with greater flexibility, choice and control. This supports the government’s intention to increase choice and control for people with disabilities over the support they receive and the lives they lead.3

It was agreed by the Ministerial Committee to further develop and implement the core elements of the New Model in one or two sites in New Zealand/Aotearoa by the end of 2010. This phase of the development and implementation of the New Model is referred to by the Ministry of Health (hereafter referred to as ‘the Ministry’) as the Demonstration Project. Western Bay of Plenty (including Tauranga) has been chosen as the first demonstration site with another geographical site yet to be decided. The objective of the Demonstration Project is to learn about effective ways of implementing the New Model before decisions are made on its national roll-out.

The Western Bay of Plenty was chosen as the first site for the Demonstration Project against criteria including having a diverse population with a relatively high proportion of younger people and a significant proportion of Māori.

2 Bennett & Bijoux, (2009). Investigation of Individualised Funding and Local Area Co-Ordination-Type processes: A Literature Review. Available on: http//www.moh.govt.nz/moh.nsf/indexmh/disability- keyprojects-model 3 New Zealand Government, (2009). Government Response to Report of the Social Services Select Committee on its Inquiry into the Quality of Care & Services Provision for people with disabilities. Available on: http://www.parliament.nz/NR/rdonlyres/8A7D9F6E-E272-41E4-BB27- 63A3C4557F07/151793/DBHOH_PAP_17698_GovernmentResponsetoReportoftheSoc.pdf 7 This report provides information on the current disability support services (DSS) and system in the Western Bay of Plenty. This information will be used as baseline information prior to the commencement of a developmental evaluation of the New Model.

Research objectives The overall objective of the research is to:

 Provide relevant information about the current experiences of people with disabilities and their families/whānau in the Western Bay of Plenty prior to the New Model being introduced.

‘Relevant’ information is information about the current services and service delivery, especially those aspects that are expected to be changed by the New Model. This will allow comparison of the ‘baseline’ findings with subsequent research and/or evaluation findings during and following implementation of the New Model.

In particular, the research focuses on how much choice and control people with disabilities and their families and whānau feel they have with regard to disability support services that are currently available. The research examines whether or not the current disability support services and service delivery provide enough choice and control to help them to live everyday lives in everyday ways.

As well as researching the experiences of the people with disabilities and their families and whānau from their perspective, the research also collected information about disability support services in the Western Bay of Plenty that are funded by the Ministry of Health. The objective of collecting this information was to answer the following questions:

 What information and support services are currently provided to, and used by, people with disabilities and their families and whānau?

 How is funding currently allocated and how is it managed?

 What are the purchasing arrangements for support? How much individualised funding is currently available and how much is used?

 What are the accountability arrangements? Who does the monitoring? What is monitored?

8 Method

Research team This research team comprised Karen Newton, Nan Wehipeihana, Clark Tuagalu and Elizabeth Proctor. Karen was responsible for the management of the research, interviewing the Pākeha respondents, analysis of the primary and secondary data analysis and the report writing. Nan Wehipeihana contributed to the research design, quality assurance processes and peer review of the research report. Clark and Liz undertook the interviews with Pacific and Māori respondents respectively and provided feedback on the report.

Secondary quantitative (desk) research An initial phase of the research included the collection and analysis of data on the current disability support services and system specific to the Western Bay of Plenty. Sources included:

 The NASC database. This is a database administered by the Ministry of Health containing information on the provision of services to people with disabilities.

 “Western Bay of Plenty Community Profile.” This is a report that was prepared for the Ministry of Health Disability Support Services, by Inclusion Aotearoa. Inclusion Aotearoa have been appointed by the Ministry of Health to assist with the design, implementation, testing and refinement of the demonstration project of the New Model for supporting people with disabilities in the Western Bay of Plenty.

 Interviews with NASC (Support Net) personnel in the Western Bay of Plenty

 Disability information and advisory services (DIAS’s) in the Western Bay of Plenty.

Primary qualitative research

Sample design A stratified random sample of twenty-four (n=24) people with disabilities was selected from a sample frame of all people receiving Ministry of Health funded disability support services in the Western Bay of Plenty, excluding people in residential care. People who receive residential care services were excluded from the primary research because the New Model will have little impact on residential care services – at least initially.

In total there were 719 NASC clients receiving at least one of the following; Home and Community Support Services (HCSS), respite services, carer support, or other non-residential disability support services (DSS).4

Experiences of people with disabilities are likely to vary by ethnicity, type of disability, level of support required (as measured by the SPA tool5), severity of disability, gender, age, and location 4 Sampling frame provided by the Ministry of Health; spreadsheet entitled “LAC Client Demo data non- residential only 04 February 2011”. 5 Support Package Allocation (SPA) tool is used by all Needs Assessment and Service Co-ordination (NASC) organisations; they take the information gathered through the assessment process and attribute a value to the services that are needed. 9 (urban versus rural). The sample was therefore stratified by these variables to ensure a mix of respondents by each of these variables.

The sample design is a non-proportional sample design (i.e. it does not reflect the proportions of all groups in the population). The advantage of a non-proportional sample design is that it boosts the size of the sample for sub-groups that might not be large enough under normal sampling to allow us to ‘drill-down’ to analyse their results. For example, Pasifika are over-represented in the sample. However, because they account for less than one percent of the total population of NASC clients in the Western Bay of Plenty, under strict random sampling it was unlikely that we would have obtained enough Pasifika respondents to be useful for any analysis of this important sub-group. For this reason we ‘over-sampled’ this particular group to allow us to make some indicative conclusions about Pasifika people with disabilities and their families.

The table below provides detail about the obtained sample.

Table 1. Sample description

Ethnicity Type of disability

Physical Intellectual Sensory Total

Pākeha/European 5 3 2 10

Māori 3 3 2 8

Pasifika 1 4 1 6

Total 9 10 5 24 The sample also comprised a mix of the following variables:

 Support package allocation level (SPA) (10 medium level, 10 high level, 4 very high level)

 Mix of gender (10 males and 14 females)

 Mix of ages (19 adults and 5 children)

 Mix of urban and rural (17 people living in Tauranga, 7 people living in rural/small towns such as Kati Kati, Maketu, and Te Puke).

Although the results obtained from the interviews provide in-depth information, it is important to note that the results are indicative only of the population of people with disabilities in the Western Bay of Plenty. In other words, the results give us reliable and valid results from the respondents included in the sample but claims that the results are generalisable to the disabled population in the Western Bay of Plenty cannot be made with confidence.

The population of non-residential clients in the Western Bay of Plenty who receive disability support services funded by the Ministry of Health was 719 (as at February 2011). After excluding clients for

10 whom there was no ethnicity data or telephone contact information, a sampling frame of 217 respondents was randomly selected.6 These potential respondents were mailed a letter from the National Health Board providing them with information about the research project and informing them that they may be selected to take part in the project (refer to Appendix 1a for a copy of the letter).

The sampling frame was then given to the researcher to draw the sample from. The Ministry was not involved in the final sample selection and were not given the final sample list. This ensures that the identities of the respondents in the research are confidential (i.e. their identities are only known to the three interviewers). All the names for respondents used in this report are pseudonyms to protect their identity.

Fieldwork approach Each of the three interviewers contacted potential respondents via telephone and asked if they were interested in considering participating in the research. If they said yes, they were mailed additional information, a copy of the informed consent form, and a shortened version of the questionnaire. 7 (Refer to Appendices 1, b, c, and d, for copies of the mailed materials.) This step ensured that all potential participants had sufficient information and time to decide either to give their informed consent to participate or decline to participate.

Potential respondents were then re-contacted via telephone and asked if they had received and read the information mailed, if they understood the information, and if they had any questions about the research. The researcher then asked the potential respondent if they would like to arrange a time for an interview. The response rate at this stage in the recruitment phase was almost 100%; in other words of the people who were mailed information about the research following contact with the interviewer only a few declined to participate. In some cases respondents were not available for an interview within the fieldwork period.

Face-to-face in-depth interviews were conducted with the respondents and/or their families/whānau, at a place and time that was convenient for the respondents - in most cases in their homes. A Māori researcher recruited and interviewed the eight Māori respondents, a Pacific interviewer recruited and interviewed the six Pacific respondents (plus two Pākeha respondents), and a Pākeha interviewer recruited and conducted the remaining eight Pākeha respondents. Fieldwork (interviews with respondents) was conducted during March 2011.

English was the main language used during the interviews. However, te reo Māori was also used when appropriate. Interviews lasted between 45 minutes to two hours.

After the completion of the interview, respondents were given a koha of $30 to acknowledge their contribution to the research.

Questionnaire/topic guide design A questionnaire was developed in close consultation with the Ministry to ensure that the objectives of the research were met. The questionnaire comprised mainly open-ended questions and was

6 The exception to this was the Pasifika clients; there were only six people identified in the population of 719 as ‘Pacific’ clients so all were included in the sample. 7 In some cases the parent or caregiver of the person with a disability answered the phone and was spoken to. 11 semi-structured to allow for a free-flowing discussion. A copy of the questionnaire is appended. (Refer to Appendix 2: Questionnaire.)

12 Findings: Desk Research

Provision of disability support services in the Western Bay of Plenty

National Context The Ministry of Health ('the Ministry') funds disability support service (DSS) for eligible8 people with physical, intellectual and/or sensory disabilities (generally under the age of 65) that are likely to continue for a minimum of six months and result in a reduction of independent function to the extent that ongoing support is required.

The Ministry's DSS is not responsible for funding services:

 to meet short-term needs that arise from a personal health condition or condition in the palliative stage

 needed as a result of an injury that meets ACC's cover and entitlement criteria under the Accident Compensation Act 2001

 needed primarily as a result of chronic health conditions unless the resulting impairments meet Ministry DSS eligibility and access criteria

 needed primarily as a result of a mental illness and/or addiction

 for people who first need long-term support at age 65 or older or those aged between 50 and 65 who have been assessed as 'close in interest' to older people.

NASC organisations Needs Assessment and Service Coordination (NASC) organisations exist throughout New Zealand and are usually the first step for a person to get Ministry of Health funded disability support services. 9

If a person meets eligibility criteria, this triggers a needs assessment to confirm eligibility (i.e. that they meet the criteria to be funded by the Ministry's DSS) and to identify support needs and assessed goals. If disability support needs are identified, a service coordination process follows to determine:

 what natural supports the person has to meet these needs

 which needs can be fulfilled within the range of services the Ministry funds within its capped budget. Some eligible people will have a low level of support need and access services such as information and advice or non-government organisation (NGO) fieldworker services rather than individualised services, and/or

 where other avenues of support are indicated (with a view to referral on to appropriate services).

8 Refer to ‘The Guide to Eligibility for Publicly Funded Health and Disability Services.’ Available on: ttp//www.moh.govt.nz

9 Other avenues include Child Development Services, Environmental Management Services, and Disability Information Advocacy Services (DIAS). 13 After this process is completed, a ‘support package’ is developed for each client that determines the number of hours the client requires (usually per week) of Ministry-funded disability support services. This is based on a support package allocation (SPA) tool which identifies levels of support needed as either low, medium, high, or very high.

The plan for each client is reviewed every year - to check if client’s needs have changed - and a full reassessment is conducted every three years.

Support Net (Kupenga Hao Ite Ora) Support Net is the Bay of Plenty’s NASC organisation, providing support services for the disabled in the Western and Eastern Bay of Plenty, as well as Rotorua and the Lakes District.10 The focus of this report is on the Western Bay of Plenty only (i.e. the Demonstration site) so the following information about Support Net only refers to the services it delivers in the Western Bay of Plenty and those people eligible to receive Ministry of Health-funded DSS.

Support Net has five Assessors/Co-ordinators who conduct both the needs assessment of the disabled person and co-ordinate the agreed Ministry-funded services. The Assessors/Co-ordinators have a variety of backgrounds including nursing, teaching and social work. Clients are allocated to an Assessor/Co-ordinator according to the client’s surname; “This is a fair and simple way to divide people up amongst the assessors.” (Regional Manager of Support Net 11) Each Assessor/Co-ordinator has about 180 clients.

On the basis of the initial assessment of clients, the Assessor/Co-ordinator determines how many hours of support are required for their client and provides them with information about providers who are available to deliver the support services. The Assessor/Co-ordinator then co-ordinates the provision of these services. In the case of non-residential clients, most clients know what their hourly allocation per week is and have some choice over who provides the service(s). However, they usually do not know what dollar amount has been allocated to fund their support services; “The dollar amounts per client are used internally only. Clients don’t know what their allocated funding is.” (Regional Manager of Support Net 12)

The Ministry of Health pay the providers for the services through Socrates – the NASC/Ministry of Health database. The Ministry conducts regular audits to ensure the services are being delivered, but Support Net also checks that the services have been delivered, usually by contacting the provider directly. “We check that services have been delivered – [are] put into place. For example the Co-ordinator might contact Healthcare New Zealand [a home care agency] to check that services are being delivered....Clients also need to get back to us if they are not getting the services. But usually they contact the provider.” (Regional Manager of Support Net 13)

Current providers of DSS As at the end of March 2011, the Ministry of Health had 166 contracts with providers to provide services to people with disabilities in the Western Bay of Plenty who are eligible for funding through Support Net. It is worth noting that although a provider may have a contract with the Ministry to

10 Support Net also provides support services for older people through a DHB contract. 11 Personal interview with Regional Manager of Support Net, 25th March 2011. 12 Ibid. 13 Ibid. 14 provide particular services this does not necessarily mean that the services are being delivered. For example, although Access Homehealth have a contract with the Ministry to provide Individually Funded Household Management services, unless a client chooses Access Homehealth as their provider of these services, then the services with this service specification are not delivered. The key providers and services that are funded by the Ministry of Health and covered by the 166 contracts, are shown in the table below.

Table 2. Ministry of Health funded Disability Support Services in the Western Bay of Plenty

Name of Ministry of Description of Service Western BoP (Ministry of Health funded) Health Funded Support Providers Service Needs Assessment and Exist throughout NZ. Support Net ( Kupenga Hao Ite Ora) Service Co-ordination Usually the first step for a person to (NASC) services get Ministry of Health funded disability support services. Disability Information and The Ministry funds a number of

Environmental Support Equipment and Modifications Service

Home and Community Services designed to help people

Supported Independent Community participation

14 Inclusion Aotearoa (2011). Western Bay of Plenty Community Profile. 15 Individualised funding 15 Living Develop routine and skill with a

Respite Services Available to people with disabilities

Carer Support Designed to help the unpaid full-time

Child Development Provides specialist assessment,

16 Inclusion Aotearoa (2011). Western Bay of Plenty Community Profile 17 Western Bay of Plenty Community Profile (2011) 16

Rest Home and Private When necessary the Ministry of Eleven facilities including: Hospital Services Health funds community residential

Disability Information and Advisory Services (DIASs) As noted in the table above, there are a number of organisations and services in the Western Bay of Plenty that exist to provide information about disability support services. As part of the research for this project we contacted most of these organisations requesting information about the services they provide. Our success in obtaining information from the organisations has been mixed: in two cases the contact information for the DIAS’s on the Ministry of Health website was incorrect; in one case the email address for the DIAS bounced back with the message, “mailbox oversubscribed”. One of the DIAS’s we have tried to contact via email and phone but have received no response at all. Another DIAS agreed to supply the information but no information has been received more than three weeks after the request was made.

A finding of the qualitative study is that people with disabilities and their families and whānau do not have good access to information about available services and how to access them. The generally

17 poor response we received from the DIAS’s in the Western Bay of Plenty for information supports this finding.

Inclusion Aotearoa suggests that, “There are myriad groups and a plethora of information, but concerns still remain that the information does not get out to the communities. Anecdotally staff working at the grassroots still see many people who say they wish they had known earlier about available support and services.” 18

With regard to online information resources, only Webhealth provides an online option for finding health and social services for people with disabilities specifically in the Bay of Plenty. However the website does not provide any information other than what services are available and it is our understanding that it is the responsibility of the providers of services to update their details on the website; no one person is responsible for ensuring the information is up to date. As a consequence, some of the information is not up-to-date and the list of providers is not complete (for example, some key providers of disability equipment are missing from the website).

The next sections examine how much DSS the Ministry funds in the Western Bay of Plenty, how the funds are allocated, and a description of the clients who are receiving the DSSs.

Residential and Non-residential funding In 2010, Support Net (Western Bay of Plenty) allocated the equivalent of $12.7 million of DSS to 725 non-residential clients and 152 residential clients (i.e. clients living in residential care). Although only a minority of clients live in residential care (17%) they received 66% of the funding in 2010 (see Figure 1 below).

Percentage of clients receiving Percentage of funding for residential vs. non-residential residential vs. non-residential support support

17 Non- 34 Non- residential residential Residential Residential 66 83

Base: 877 Clients Base: $12.7 (million) in funding

18 Inclusion Aotearoa (2011). Western Bay of Plenty Community Profile, pg.13. 18 Figure 1. Percentage of clients and funding by residential versus non-residential support

In 2010, the average cost of services for a non-residential client per year was $6,000; the average cost for a residential client per year was $55,000. Across both client types – residential and non- residential - the average cost of services was $14,500 per person.

Funding for non-residential clients by disability support type The focus of the rest of the research report is on non-residential clients; these are clients who will be impacted the most – at least initially - by the New Model of support. The following analyses are of non-residential clients of Support Net only.

The 725 non-residential clients receiving disability support services mainly receive Home and Community Support Services (HCSS), Respite Services, and Carer Support Services. The funding for these services amounted to $4.3 million in 2010. Figure 2 below shows the percentage of Support Net clients receiving each of these types of services. 19

The figure also shows the percentage of clients receiving HCSS through Individualised Funding (IF). IF is a funding method that allows people with disabilities to directly manage the Ministry of Health- funded DSS they receive. The arrangements under IF are designed to allow the disabled person and their families/whānau increased choice and control over how and when they use their allocated supports and who provides them. Although IF arrangements have been available to clients in the Western Bay of Plenty for several years it is more strongly a feature of the New Model than of the existing model of DSSs and is only briefly touched on in this report.

Currently IF is available only to clients who receive HCSSs.

As the figure below shows, Carer Support and HCSS together are used by all (100%) of the non- residential clients. However, although 55% of clients receive Carer Support it accounts for only 22% of the funding. On the other hand, although only 2% of non-residential clients receive their HCSS funding through IF, it accounts for 7% of the funding. Most (67%) of the funding for non-residential clients goes to HCSS; 60% for traditionally funded HCSS plus another 7% for IF funded HCSS.

19 Some clients may receive more than one type of service so percentages don’t necessarily add to 100%. 19 Percentage of clients Percentage of funding for receiving non-residential DS non-residential DS Services Services HCSS 3 HCSS 10

HCSS IF HCSS IF

45 22 Respite Respite

55 60 Carer Carer 1 7 Support Support Other DSS Other DSS 1 2

Base: 725 Clients (Nb. Some clients receive more than 1 DSS Base: $4.3 (million) in funding type so %’s do not add up to 100% )

Figure 2. Percentage of clients and funding for non-residential services

Funding for non-residential clients by ethnicity Within the general population of Western Bay of Plenty, Māori comprise just over 17% of the population and Pasifika and Asian each comprise just under 3%. The figure below shows that 20% of Support Net’s clients are Māori and 1% are Pasifika; Māori receive 24% of the funding while Pasifika receive 1%.

These figures suggest that Pasifika may be under-accessing disability support services in the Western Bay of Plenty.

20 Percentage of clients Percentage of funding for receiving non-residential DS non-residential DS Services Services by Ethnicity by Ethnicity 1 1 1 1 European/ 1 1 European/ Other Other Maori Maori 20 24 Pacific Pacific

Asian Asian 80 75 Not Not stated/Dk stated/Dk

Figure 3. Percentage of clients and funding by ethnicity

Funding for non-residential clients by age20 Not surprisingly perhaps, the older the client the more funding they are likely to be allocated.

Just 5% of clients are under 5 years of age and they receive only 2% of funding.

Figure 4 below shows that the largest age group receiving non-residential services are school aged clients; 46% of the clients who receive these services are aged 5 – 19. However, they receive only 27% of the funding.

On the other hand, while almost one quarter (23%) of clients are over 50, they receive 31% of the funding. The rest – about 30% - are aged between 20 and 49, and it is this group that tends to dominate the funding; they receive 40% of total non-residential funding (see Figure 4 below).

20 DSS’s are typically funded by the Ministry of Health to people under the age of 65. At the end of 2010, less than 4% of the 725 people in the Western Bay of Plenty receiving non-residential disability support services were aged 65 or above. 21 Percentage of clients Percentage of funding for receiving non-residential DS non-residential DS Services Services by Age by Age

2 5 23 0 - 4 yrs 31 27 0 - 4 yrs 5 - 19 yrs 5 - 19 yrs 46 20 - 49 yrs 20 - 49 yrs 29 50+ yrs 50+ yrs 40

Figure 4. Percentage of clients and funding by age

Funding for non-residential clients by SPA Following assessment, a person’s funding allocation package is graded as low, medium, high, or very high using the NASC Support Allocation Package tool (or SPA). This is designed to ensure fairness and provide transparency regarding the allocation of disability support services across the NASC organisations.

Almost half (46%) of all non-residential clients are classified as ‘high’ with a further 36% being classified as having a medium allocation. As expected, although only 19% of clients are classified as having a ‘very high’ allocation they account for a much larger proportion of the funding – they received 44% of all HCSS funding in 2010 (see Figure 5 below).

22 Percentage of clients Percentage of funding for receiving non-residential DS non-residential DS Services Services by SPA by SPA

19 15 Very High 36 Very High High 44 High Medium Medium Low Low 46 41

Figure 5. Percentage of clients and funding by SPA

Individualised Funding for HCSS As discussed above, some clients receive their funding for HCSS through a mechanism called Individualised Funding (IF). Twelve – or 2% - of HCSS clients received their funding through IF in 2010.

The total amount of funding that was distributed through IF in 2010 was $300,460, accounting for 10% of the HCSS funding. This was for HCSS services received during the day.21 The average amount of individualised funding that was distributed per person per year was $25,000 compared to $7,965 for the average amount of HCSS funding per person per year under the traditional model of funding. However, the range of IF funding per person per year varied considerably from as low as $800 to as high as almost $200,000.

One client received individualised funding of $196,588 during 2010. This amount represents an outlier (i.e. an unusual or atypical amount). If the outlier is excluded from the comparisons between the average amount of funding distributed through IF per person per year and the average amount of HCSS funding distributed per person per year under the traditional model of funding, then the figures are $9,443 and $7,965 respectively.

Therefore even after excluding the outlier, on average IF clients tended to receive more funding than non-IF clients. This was because they were allocated more hours and their funding per hour was more; the average number of allocated hours per IF client per week was 19 compared with 6 hours per non-IF HCSS client and the average amount funded per hour was $24 for non-IF HCSS clients compared to $25 for IF HCSS clients.

21 To allow for comparisons between IF and non-IF clients, the following analyses exclude funding for HCSSs received during the night; 4 non-IF clients received personal care services during the night in 2010 (representing a total of $84,500 in funding) but no IF clients received these. 23 The table below analyses the 12 IF clients by ethnicity and age.

Table 3: IF clients by ethnicity and age

Number of clients % of Funding

Ethnicity

European/Other 11 97%

Māori 1 3%

Total 12 100%

Age Group

0 - 4 1 <1%

5 - 19 2 3%

20 - 24 3 10%

25 - 54 6 87%

Total 12 100%

Table 3 above shows that IF clients tend to be older (above 25) and they obtain the majority of the IF funding. This is similar to non-IF funding where over 70% of funding for non-residential services went to people 20+ years of age (see Figure 4).

Summary – Desk Research The above sections of the report provide a descriptive analysis of disability support services and funding arrangements in the Western Bay of Plenty. It is beyond the scope of the desk research to report on whether or not these findings suggest that the people of the Western Bay of Plenty are well served (or not) by the current system of disability supports and services.

The next section of the report – based on the findings of our interviews with people who receive disability services and supports in the Western Bay of Plenty – provides some evidence about how well the present system supports the people we interviewed to live everyday lives in everyday ways.

24 Findings: Primary qualitative research

Experiences of people receiving disability support services

Living a good life? The main objective of the interviews was to determine whether or not people with disabilities and their families and whānau are ‘living a good life’ and to understand what helps them and what hinders them from living a good life.

When people with disabilities were asked what ‘living a good life’ meant for them and their families and whānau, the following responses22 were typical:

“Living a good life for me would be the ability to do normal things – being able to get up, have a shower and go to work... People take for granted that they can do simple things like having a bath. I would love to have a long soak in the bath” (Kathy23)

A good life for Valerie includes being able to be physically active in sport, baking cakes and spending time with mates.24 (Valerie’s interviewer)

“A good life for Betsy would be to have ordinary life skills such as being able to make herself hot drinks, make dinner...Do her homework – just like everybody else.” (Betsy’s mum)

For most people therefore, living a good life is being able to do ‘everyday things in everyday ways’.

Of the 24 respondents in the sample, how many are living good lives? Respondents have been classified as living a good life if they agreed - when asked directly25 - if they are living a good life and if their responses to the other questions during their interview support their belief that they are living a good life. Using this method of classifying respondents, nine (n=9) people with a disability are described by this research as living a good life. This represents just under one third of the total sample.

Those respondents who disagreed that they are living a good life when asked directly have been classified as ‘not living a good life’. Seven (n=7) people disagreed with the statement that they are living a good life and have therefore been classified as ‘Not living a good life’.

The remaining eight (n=8) respondents say they are living a good life when asked directly but other evidence they provided in the interview suggested that they (and/or their families and whānau) face significant ongoing difficulties in their everyday life. Self-reports of living a good life have been taken as necessary, but not sufficient, evidence that they are living a good life.26 This group has been

22 Note that responses throughout this report may be from a carer and/or a parent of the person with a disability as well as from the person with a disability. Similarly, the term ‘respondent’ throughout this report may refer to the person with a disability and/or a carer and/or parent of the person with a disability. 23 All names used in this report to refer to respondents are pseudonyms to protect their identity. 24 Indented non-italicised text contains descriptions of the respondent by the interviewer. Indented italicised text are direct quotes by respondents. 25 Question 1C,a in the questionnaire 26 Evidence from the interviews suggests that respondents have a tendency to over-exaggerate how good their lives are. There are many possible reasons for this including: they do not want to appear ungrateful for the 25 classified as ‘mixed’; on some measures they are living a good life but on other measures they are not.

The table below summarises the description of the three ‘good life’ groups and the numbers in each. By examining the differences between these three groups of people we are able to better understand what enables some people to live a good life and what hinders them from living a good life.

Table 4. Description of ‘good life’ groups

Group title Group description # of respondents

‘Living a good life’ Respondent agrees they are living a good life when n=9 asked (based on their response to Q3 1a in the questionnaire) AND the evidence they provide suggests that are living a good life. Most of the time they live an everyday life in everyday ways.

‘Mixed’ Respondent agrees they are living a good life when n=8 asked (based on their response to Q3 1a in the questionnaire) BUT the evidence they provide suggests that are not living a good life. Their life has significant challenges, but at least some of the time they are living an everyday life in everyday ways.

‘Not living a good Respondent disagrees that they are living a good life n=7 life’ when asked (based on their response to Q3, 1a in the questionnaire). Their life is a constant struggle to get basic/everyday support that would help them to live an everyday life in everyday ways.

Who is living a good life? The group that is ‘living a good life’ has a mix of genders, ethnicities,27 and includes both adults and children and people who live in urban and rural centres. However there are no respondents in this group who have a very high level of support package (SPA). The other characteristic of this group is that there is a skew towards people with intellectual disabilities; in total there are ten people in the sample who have an intellectual disability and half of them (n=5) have been classified as ‘living a good life’.

The group that is ‘not living a good life’ also has a mix of genders, ethnicities and includes both adults and children and people who live in urban and rural areas. There is however a skew towards people who have very high support package allowances; four people in the total sample receive a high SPA, and three of them are classified as ‘not living a good life’. On the other hand, there is a services and support they receive; they don’t wish to dwell on the negative; they believe that there are people worse off than them (e.g. “I always look at the person worse off than me. I could be totally crippled. At least I can still drive.” Kathy.) 27 There is a skew towards Pasifika people in the ‘living a good life’ group; of the six Pasifika respondents, four have been classified as ‘living a good life’. However of the six Pasifika respondents, four have an intellectual disability and this might help explain why Pasifika are overrepresented in this group. See later discussion about the tendency for people with an intellectual disability to be over-represented in the ‘living a good life’ group. 26 skew away from people with an intellectual disability; only one person out of the ten people in the total sample with an intellectual disability, is classified as ‘not living a good life’.28

The difference between ‘living a good life’ and ‘not living a good life’ therefore does not appear to be strongly related to gender, ethnicity, age, or living in an urban versus rural area. The possibility that people with a high SPA are less likely to be ‘living a good life’ compared to people with a lower SPA may not be surprising given that the SPA level is a reflection of the extent to which the person’s disability is likely to impact on their ability to live an everyday life.

A number of possibilities exist with regard to why people with an intellectual disability may be more likely to be ‘living a good life’ compared to people with a physical or sensory disability. One possibility is that people with an intellectual disability may be less aware of how people who are not intellectually disabled live everyday lives in everyday ways29 compared to people with physical and sensory disabilities. Another possibility is that parents of children with an intellectual disability sometimes act as a buffer between their child and the non-disabled; rather than putting the challenges of having a disability onto their children – including their adult children - they take on board these challenges themselves. The following examples from the research provide some support for this:

The parents strongly agree that Marlon is living a good life. Although at times life for the parents can be frustrating, Marlon has a sweet life. (Marlon’s interviewer)

Grace is living a good life but her parents are currently struggling to manage their own lives and care for Grace. Both parents have had significant health problems in the past few years... and are struggling to communicate with particular agencies particularly around finding a flat for Grace, getting the appropriate care to support Grace in her learning at the [Day Service Centre]30, and getting respite care for Grace so that her parents can have time out. (Grace’s interviewer)

Billy appears to be living a good life. He feels loved by his family, school and friends. His parents advocate on his behalf and accommodate most of his needs. However, they have struggled to access particular services and get the appropriate care for Billy. They are especially anxious about Billy’s future. (Billy’s interviewer)

In some cases, parents of an intellectually disabled child preferred to be interviewed without their child being present. As one parent said:

“Karen didn’t want to come [to the interview]. She doesn’t see herself as having a disability. She knows that other people find her difficult to understand but she thinks that is their problem not hers.” (Karen’s mum)

28 This skew may be the result of the small sample size. All findings discussed in relation to this qualitative research project must be treated as indicative only. The exception to this is the findings from the Pasifika respondents because all Pasifika people receiving disability support through Support Net are included in the sample (in effect, providing a census of Pasifika receiving disability support through Support Net). 29 This phenomenon is sometimes referred to in the research literature as an ‘experience limitation’ effect. 30 Information in square brackets [...] throughout this report has been added to replace information that could identify the respondent and/or an organisation. Information in square brackets has sometimes also been added to help a quote to make sense. 27 Whatever the reason that people with an intellectual disability are over-represented in the ‘living a good life’ group, the findings of this research need to be considered with this in mind.

The research identified six factors that most clearly differentiate the people we interviewed who are ‘living a good life’ from the people we interviewed who are ‘not living a good life’. The six factors are:

1) Having connections, whanaungatanga

2) Access to information

3) Satisfaction with services

4) Housing

5) Employment

6) Financial resources

Some of the above factors (such as employment) are outside of the direct control of the Ministry of Health and others are not solely the responsibility of the Ministry of Health (e.g. housing). Not all services and support that our respondents receive (or don’t receive) are funded by the Ministry of Health; other Ministries and agencies are also involved in assisting people with disabilities and their families and whānau to live everyday lives in everyday ways. However, the research has taken a ‘whole of life’ view in identifying the factors which assist people with disabilities and their families and whānau to live a good life. In the discussion of results that follows this section, we focus on those difficulties that people with disabilities identify that the Ministry of Health does have direct control over.

The table below describes the six factors the research has identified that differentiate people who are living a good life from those who are not. People who are ‘living a good life’ can be described as having some, but not all, of the factors described in the second column; people who are ‘not living a good life’ have many, but not necessarily all, of the factors described in the third column below.

28 Table 5. Evidence of living a good life

Evidence of living a good life Evidence of not living a good life

Connections, Have meaningful connections to Isolated from family, family/whānau, community, marae community, ‘natural’ supports Whanaungatanga31

Access to information Know what services are available and Don’t know what is available about services and how to access them and/or how to access them supports

Provision of services Satisfied with what is available Very unsatisfied with what is (including community available. No choice, control or services) flexibility.

Housing Able to live independently Dependent on family for housing

Have a home that is appropriate for Inappropriate housing their needs

Own their own home

Employment Being in paid employment Being unemployed

Financial Resources Have enough financial resources to Don’t have enough financial have choices and a reasonable quality resources for even basic items of life

Each of the key factors that discriminate between people living a good life and people who are not, are discussed below. It is important to note here that some of the Māori respondents we spoke with experience a need for more culturally appropriate services and this (further) inhibits their ability to live a good life; this is discussed in detail later in this report.

Connections, Whanaungatanga Having positive and meaningful relationships with family, whānau and friends is important to most respondents and is a major contributor to ‘living a good life’.

“To be and have close contact with my whānau [is one of the most important things to helping me live a good life]. Whanaungatanga is everything.” (MD)

Life is good at the moment for Billy because his family makes it good. He feels loved. “No matter what I do, my family still loves me.” Billy strongly agrees he is living a good life; “I want everything. I want family who love me. Friends laugh at my jokes... even though they are not funny... you feel accepted... and I belong.” Although Billy thinks he is a “know-it-all

31 Relationship, kinship 29 90% of the time”, he acknowledges that his parents’ encouragement and advice is helping him to reach his goals and subsequently live a good life. (Billy’s interviewer)

“A good life for Karen is to have her friends and extended family around her. She has a large group of friends.” (Karen’s mum)

Serevi is living a good life. ... He enjoys picnics with family and friends and he likes going to events such as music festivals. In particular he likes going out with his mates or peers to the movies. (Serevi’s interviewer)

A good life for MC is being around whānau, especially his mum and sister. Taking part in hui at the marae and being amongst his mates is also important to his well-being...The family take MC to the marae where he is helpful in doing odd jobs and is good at problem-solving. He will pick up things and generally make himself useful. ...The whānau ensure that MC lives a normal life. The example they gave for this is that MC’s sister insisted he gave her away alongside her father at her wedding. (MC’s interviewer)

Having connections to the community is also important to enhancing a sense of living a good life.

“Involving MB in the community [helps him to live a good life]. He has a special role on the rugby field and race course... He helps out at rugby – marking the rugby field and on the day is the water man for the players. He’s the boss.” MB also has a job at the [x] where he opens gates and has an official role once a month. His parents also take him to the Church down the road. (MB’s parents )

A good life for Peter is, “Going to the [x] club, gym and golf club. Having five beers a week....flatting with his mum.” (Peter’s mum)

MA goes to a Church that was set up some years ago by him and other friends. Church members offer emotional and spiritual supports and often visit him. “They make themselves available to me to phone them anytime.” (MA)

MD says that he likes to be social and going to the [x] club gives him social contact with others; “[X] club keeps me involved... Every year on my birthday I get a free dinner from them. They send me an invitation.” (MD)

“Sunday school helps Beatrice to learn the bible and meet other children her age.” (Beatrice’s mum)

Neighbours are also important to helping people with disabilities feel they are living a good life:

“Our neighbour is a lovely person...kind. She accepts me... Our neighbour goes out of her way to make people happy” said Billy. Billy’s mum adds, “Billy can go and see her if he needs help”. Billy returns the favour by offering to help their neighbour around the home such as mowing the lawn. (Billy)

“People are very aware of my disability. You get used to those looks...But young children are great – they are not old enough to understand about disability. The daughter of one of my

30 neighbours often just pops in and treats me like a friend, like she would treat anyone else. She always asks me if there is anything she can do for me.” (Kathy)

Without family and community connections, people can feel isolated and ‘trapped’:

“Church groups are great but I don’t want to belong to a church. Bowling clubs would be good too if I could participate. And I used to belong to a ski and tramp clubs and we would become a little family. But I feel I am in jail now – I am stuck in jail. I feel I have been dumped here.” (Doreen)

Rocky used to be very active before he lost his mobility and struggles to maintain relationships with family and friends; “My brother is pissed off at the way I am because I can’t go with him and do the things we used to do like [activities]... my lack of] mobility and sociability bothers me and that shuts me off. I hate seeing people I know. They see me now and they ask me what has happened to you man?” (Rocky)

Sally lives alone in a small home she owns on the outskirts of a small rural town. Sally has no contact with any other people in her neighbourhood. She is lonely and isolated. “I’m just existing.” (Sally)

Access to information about services and supports32 A common theme that emerged across the sample, but especially for those in the ‘not living a good life’ group, was that it was difficult to get information on what services and supports are available and how to access them.

MG doesn’t know who to go to for help, she says they never explain things to her and therefore she never really knows what is going on with her treatment or illness. “The service sucks. There are too many different providers.” (MG)

“There’s nothing out there to tell you about what’s available. You have to ask for everything. No-one tells you. I go to WINZ and feel stink – there are lots of people worse off than you - so I don’t ask about what’s available. But I was at WINZ yesterday and we are finding it difficult to buy groceries at the moment – my husband can’t find enough work – and so I asked if they had any food vouchers. And the woman at WINZ said, don’t you have a green card? And I didn’t even know what she was talking about. But she gave me this card and you ring a number and they load on either $50 or $100. It took me a while to work out how and when to use it – the woman at WINZ didn’t explain it to me - and the supermarket where I tried to use it hadn’t seen one before. But we eventually figured out how to use it. ” (Doreen)

For some people we interviewed, especially for those with an intellectual disability, having an advocate makes a big difference to whether or not they access and receive appropriate services and support:

Valerie has a support worker who acts as an advocate for her. The support worker has been with them (Valerie and her husband) for at least eight years. Without her they would not be having a good life. (Valerie’s interviewer)

32 The services discussed in this section and the next are not necessarily NASC co-ordinated services but include all services that the respondents spontaneously mentioned as helping them to live a good life. 31 The parents of an adult daughter with a disability have a ‘parent advocate’ through Support Net. The parents believe that this person is very important to their daughter’s ability to live a good life:

“We often ask her about what is available to Grace.” (Grace’s father)

However, the family still struggles to get the support that they believe is important for their daughter:

“There are not enough organisations that support Grace. We need to know if somebody is available - such as a key person like our parents advocate from Support Net - to tell us about things that we could introduce to Grace to help her achieve her goal of living an independent life.” (Grace’s father)

Similarly, Billy’s parents are concerned that without them he would be unable to access services:

“People with a disability do not know how to access their rights. These people are seriously disadvantaged [unless they have people like us to advocate on their behalf.]” (Billy’s mum)

None of the people we interviewed were actively and independently searching for information about available services and supports; most of them probably believe that there isn’t anything available that can help them to do this. Most are therefore dependent on someone else to find out what is available or they (reluctantly) ask WINZ.

Provision of services and supports What is working?

All of the people we interviewed were able to name at least some support services that help them to live a good life:

“Support Net is a good service. They are a big help... bloody good. Even though it is only for two hours, twice a week, I lot of what I can’t do he [home care support worker] does that. I have had him for two years now.” (Rocky)

“The [home care] disability support gets me up in the morning. Otherwise I might just stay in bed and crawl up into a ball and stay there all day. She [the home and personal care support person] arrives every morning at 7:30am, Monday to Friday, and gets me showered and dressed... She does all sorts. I make lists for her of things to do. She is very good. She helps me with everything... We are quite close – she has been coming for the past 4 – 5 years.” (Kathy)

“I had a NASC assessor come back in October of last year. She asked if I needed my house work hours increased and I said I did and they were increased. She also asked about ramps [in the home] but I don’t need those. I find all services are brilliant except the ones that are supposed to help – meaning the [ specific disability volunteer group].” (Doreen)

“The... services community carer helps Karen to live a good life. She is like a friend. She does 4 hours a week with Karen. She does ‘teenage stuff’ with her like going to the shopping mall.” (Karen’s mum)

32 The respite care offered by Spectrum, without exception, was mentioned positively in terms of helping people with disabilities live a good life:

“Peter LOVES Spectrum Care. With them coming on the scene has been a huge plus. It’s properly set-up and professionally run. They have good activities. Peter absolutely loves it.” (Peter’s mum)

MC’s parents describe Spectrum as a good example of a service using Tikanga Māori. (MC’s interviewer)

“Grace likes going there [even though] she resisted going there to start with.” (Grace’s father)

Having mobility vouchers, community services card (for helping to pay for medicines) and the CSS swimming pool card for Tauranga Council Aquatic pool allowing free entry for the person with a disability and their support person were frequently mentioned as helping people to live a good life.

The ‘Us in Action’ club every 2nd Friday night for young people with intellectual disabilities is specially noted as helping the young people who attend to live a good life;

“They have excellent activities. The carers are teenagers. That’s important.” (Karen’s mum)

The Special Olympics activities and training were also positively mentioned by the respondents who are involved with this.

What is not working?

Although all of the people we talked with were able to name at least some support services that help them to live a good life, many respondents – across all three ‘good life’ groups - describe the services they receive to assist them with their disabilities as being inadequate or not tailored well enough to meet their needs.

The following are examples of people who like the services they receive but believe they need more:

Rocky currently receives funding from Support Net for home care support to cook, clean and do the grocery shopping. He comes in for 4 hours a week, twice a week. Rocky has applied for more home care hours. He currently likes the service but he could use more hours. (Rocky’s interviewer)

“The thing that stops Betsy from living a good life is that she lacks life skills. The training she received when she was younger was inadequate – it was an hour per fortnight for a period of time. It was good but it’s not enough. Unless they get that training when they are young they are going to need a lot more when they are older.” (Betsy’s mum)

Other people feel they have received some valuable support services in the past but they have not been satisfactorily maintained and/or their needs have changed:

33 “Patsy needs a more appropriate wheelchair. The current one she has had since 2004 following an operation. It was modified for her... But her needs have changed now and the chair is no longer fit-for-purpose. There are a number of issues with it: The foot plate keeps falling down but [an equipment and modifications service provider] can’t or won’t replace it; it’s too big for in the home. It takes up a lot of room and blocks through-ways in the kitchen. It is damaging the carpet and loosening floorboards. It’s noisy – its mid-wheel drive – so I hear her moving about in it during the night. It’s unable to take her very far into town and it doesn’t have a cover in case it rains.” (Patsy’s mum)

Occupational Health at the Hospital gave MG a lazy-boy chair a year and a half ago to help ease her pain when she’s sitting. They also gave her a special bed in her room but she can’t get in and out of it on her own so her daughter has to lift her in and out of bed. For that reason she never sleeps in her bed, but sleeps in the lazy-boy chair. (MG’s interviewer)

Some respondents feel that the services that are available are not tailored well enough to meet their specific needs:

According to Grace’s father, Grace’s day services provider does not provide relevant programmes or activities for people in Grace’s age group: “’Grace’s [day services provider] doesn’t provide a programme for their clients - parents come up with the activities. It’s not what [ day services provider] comes up with.... At [ the day services centre] there are no routines, there’s understaffing, staff not being available to support Grace. These barriers will definitely hold her back. She will most likely get angry, moody and bored and all these things can be quite negative and affect her health. She can easily get into a slump and cause her to get upset”. (Grace’s father)

“[Home services provider] suck. They don’t match support workers with clients. Many of the workers are on retirement age and want to sit and have a cup of tea and a chat. Well actually, I don’t want to sit and chat – I just want my housework done. And they have this OSH thing now so that the workers aren’t even allowed to stand on a stool to wash windows or something like that. So they send me a wee short woman to wash my windows and she can only wash up to about my waist height – she is so short. What good is that to me?” (Maria)

“I would like more physio. But I need a referral letter from my GP and that costs. People with physical disabilities should get the physio they want [on an ongoing basis] - not just for a certain period of time like other people who need it until their problem is solved. Our needs are ongoing.” (Patsy)

A parent whose disabled son goes to two different day services facilities, says that although they both help her son to live a good life, they are not teaching enough independent life skills such as how to use a cell phone, catch a bus or count money: “They need to be teaching these skills. I will need to ring them to talk about this.” (Peter’s mum)

Accessing respite care appears to be particularly difficult for families living rurally:

34 When asked what stops them from living a good life, Billy’s parents reply by saying that they are not able to access respite care, especially because they are, “... living rural, because we’re isolated... we have no access to anything...Accessing people for respite is difficult particularly when families need a break. Most people are reluctant to take a boy with a disability.” (Billy’s mum)

However, even for people living in urban centres, access to respite care is difficult:

“Respite care is definitely under- funded, under- resourced. There are limited bed nights for people. And there are a limited number of providers of respite care.” (Maria)

MC’s family would like access to a second respite service because the one they currently use is always inundated and can only take five people at a time for 2 days and nights. (MC’s interviewer)

One parent mentioned that although respite care might be available, it can be cost-prohibitive:

“Other private respite care providers charge the primary caregivers extra cash – over and above what they are already funded for. They see it as a money-making exercise; they are doing it to make money. They are not licensed. It’s common place here.” (Peter’s mum)

For people with more than one disability, the provision of services can be especially lacking:

MC has both a ... and ... disability. He goes to a day services facility, 4 days a week but they do not provide him with physical stimulation which he requires to strengthen his muscles. (MC’s interviewer)

Flexibility, choice and control

The services that are available are seen by some as not being very flexible:

“There’s very little flexibility. For example, Patsy would like to have someone come in the evenings to give her a shower but they will only come if they have at least 2 hours of work to do. But night time is family time and the family don’t want someone hanging around for two hours in the evening.” (Patsy’s mum)

“Carer support should be more flexible to allow me to choose someone to look after Serevi at home. Serevi will not go to another home to stay.” According to his mother, Serevi does not meet the criteria to have a support carer look after him at their home. (Serevi’s interviewer)

Some respondents don’t feel they have much choice over the services they receive:

“I somewhat disagree that we have choice because we didn’t choose [ household management provider] and the hours were not negotiated. The hours were assigned to us.” (Rose’s mum)

“Betsy hasn’t really had any choices – we have just been told if she can have something or not. If she wants something she asks and she is told if she can have it or not. We filled in the application for [name of High School] l and then the school decides when and for how long she attends that school. We don’t really have any say.” (Betsy’s mum) 35 “There are not a lot of choices in Tauranga – the services aren’t there. ...We used to be able to help interview caregivers and choose who we liked the best but we don’t do that anymore. We recently had a support person who was useless. She didn’t have any commonsense... it’s very hard to find good support people.” (Patsy’s mum)

For other respondents, they may agree they have choices but they disagree that they are quality choices:

“There are a number of home help providers. I can choose my service provider for home help. I use [name of household management provider]. They co-ordinate who comes to do my housework. ... I could change to another provider – my neighbour uses the [name of service provider] and says they are good. But it’s a bit of a hassle to change and you don’t know who you are going to get. I used to be able to get someone I knew to do my housework and that worked well. I got someone I knew who would be good at it. But that’s changed now.” (Maria)

“It’s better to stick with the bugger you know.” (MA)

Most respondents also reported that they don’t have much control over the services they receive. This is not surprising perhaps if they also feel they have little choice or flexibility:

“The [medication] Betsy is on can be stopped at any time. It’s reviewed every 6 months and I know it costs quite a bit – so they could stop that at any time. We have no control over that.” (Betsy’s mum)

MC’s family say they have no control over what happens to MC when he is with his day services provider, and particularly when he stopped having one-on-one contact. They reported there was no real consultation in the organisation where he spends four days a week. “There’s always staff changes and we are always having to deal with their inconsistencies. It’s frustrating.” (MC’s parents)

On the other hand, at least one respondent feels they have some degree of choice and flexibility:

Doreen was with a service provider but they weren’t very good so she asked Support Net if she could get her home care services through another provider and they agreed. “The [new service provider] was much better. Good. So I think I have flexibility and choice. Later Support Net asked me if I was happy with my [new] care provider. And I said I was. So yes I do have choice... With the gardener, I was able to choose her from the local paper – I have $25 paid into my bank account every week to pay for her. I have control who I get to do the gardening.” (Doreen)

Co-ordination across services

A lack of co-ordination across available services is also a problem for some of the people with disabilities and their families and whānau we interviewed:

“There is a lot of pigeon- holing in Tauranga – lots of silos of support services. There’s no coordination. Lots of red tape. ...The hospital funds [...] but Patsy doesn’t qualify for a subsidy for them. These would make a big difference to Patsy’s independence... I would need to 36 apply for the subsidy through WINZ – would need to write a letter to see if she can get a subsidy...I don’t want to talk to someone at WINZ about it in an open office. I hate going to WINZ. I won’t go there again... disability is not their area of expertise. There should be a disability support service that works parallel with WINZ “. (Patsy’s mum)

Billy’s mum said, “Ministry of Health need to look at disabled people, particularly people with learning difficulties to look at strengthening partnerships with Ministry of Social Development and Ministry of Education to support these people. These people do not fit into a tick box.” (Billy’s mum)

Peter’s mum talked about how different agencies provide different services and you have to negotiate with each one individually. “And there is not a lot of commonsense. Something like [name of disability] is not treatable. Peter is not going to grow out of it. But they [the different agencies] cover the same ground over and over when clearly there is not going to be any change in some things.” (Peter’s mum)

“I would like to have a case manager for each organisation I deal with. But continuity of caseworker is really important. Otherwise you are constantly repeating your story – it’s depressing. It’s difficult for people to advocate for themselves across different organisations/departments.” (Maria)

Family stress and carer support

As discussed earlier, people with disabilities and their families and whānau recognise the importance of meaningful family and whānau relationships. However, caring for the disabled family member can become an uncomfortable burden on families if the families don’t get adequate and appropriate support themselves. One of the consequences of inadequate or inappropriate services and supports for people with disabilities is that the ‘burden of care’ can fall on family:

ME feels that she is a burden on her whānau. “My whānau are doing it hard – cause I have been having more [physical problem] lately. Whānau need breaks... Seeing my moko witness what I’m going through, they are too young. They’re tired. I’m tired.” Having less stress on her whānau would help ME live a better life. (ME’s interviewer)

For those parents and whānau who have the major responsibility of taking care of their child, they are inevitably worried about what will become of their disabled child when they are no longer able to take care of them:

MB’s family lives and cares for him day to day, and his parents said, “We pray we are here for him forever”. They are worried about how MB will be cared for in the future and who will take care of him when they are no longer able to. (MB’s interviewer)

37 Some carers, often families, feel they are not provided with the support they need, both financially and emotionally:

“We have to do a lot ourselves [to look after our son], and if we are not getting our needs met, then he suffers. Anything that affects us will affect him.” (Parents of MB)

“There is a shortfall of support for carers of people who are disabled. The caregivers of younger people who are disabled are more affected when the carer isn’t cared for, compared to the carers of older people. Because if the carer of a younger person doesn’t get the support they need, then they have a whole family that is in need.” (Maria)

A whānau support group would help MC’s parents to be able to talk about what it’s like growing up with a disability in a whānau, and how that shapes you as a person. Such groups are available for parents of children with disabilities, but not for those who are caring for adults. (MC’s interviewer)

Counselling Services

Some services appear to be not available for people with disabilities even though they are mentioned by some people we interviewed as potentially important to helping them live a good life. Professional counselling support – particularly in regard to helping people come to terms with their disability - appears to be not available and/or not used:

“I need some help to cope with the emotional side of my disability. Losing your [ ...] is the same as losing a person. And when you are gradually losing your [...] you are constantly mourning. It’s the cruellest way to become [ disabled]. I went to a conference in Melbourne on [condition] and they talked about this.” (Doreen)

Rocky, who appears to be consciously isolating himself from society, especially his mates, would like counselling to help him cope with his disability. (Rocky’s interviewer)

Services for specific disabilities

With the exception of services provided by IHC, very few respondents spontaneously mentioned disability specific services in the context of helping them to live a good life. Of those that did, they tended to be negative as the three examples below illustrate:

“[An organisation specifically for the blind] are useless. They need to wake-up. Someone rings every 4 months to see how I am doing. It’s ok but they need to wake their ideas up. I have been to two of their meetings or gatherings and it seems like they dragged every person out of an old folks home and there they are sitting there with their mouths wide open. I feel sorry for them but I don’t need to look into the future to see how it’s going to be for me eventually. [In the meantime] I am not blind yet so I don’t want to be part of their outings. They are only interested in giving out reading books for the blind. No-one has rung to see if I need glasses or a cane. And you have to pay for everything with them... I don’t donate to them anymore. (Doreen)

38 “I have never found the [name of organisation] to be very good. I probably don’t donate enough to them. They ring me once every 4 years to see how I am. They don’t have anything they can do for me. They aren’t very good. You’d think with all the fundraising they do they would be able to do more.” (Kathy)

“Organisations being better funded would help me live a good life. If [name of organisation] had more funding they could deal with not just older people but people my age. Organisations need better funding especially to help people on their own. They need more age appropriate assessment. Someone who is 75 years old is not the same as a 35 year old.” (Maria)

Housing33 Having somewhere to live that is appropriately modified for a person with a disability to live in comfortably is important to living a good life:

When asked what would help MH to live a good life she answered that better access to her house would help. She lives in rented accommodation however and thought the landlord would not be happy to modify it. (MH’s interviewer)

Patsy lives at home with her mother and grandmother. The house is small and not suitable for a wheelchair because the wheelchair blocks access in and around the kitchen area. A bench needs to be removed to prevent the congestion but Patsy’s mum has been unable to get this modification funded. Also Patsy is unable to access the deck of their home. The lip of the door frame needs a ramp over it but they haven’t been able to get funding for it. The occupational therapist has supplied a walking frame but this is not as useful as being able to use her chair to access the outdoors. (Patsy’s interviewer)

MD would like to make repairs to his house so that he can provide more hospitality for his whānau. (MD’s interviewer)

Living independently is also important for most adult people with a disability:

MD is asked what helps him to live a good life (awhi) and after mentioning keeping busy and social, and watching the grandkids play rugby, he then said, “Living independently is important.” (MD)

Grace’s goal is to go flatting because she wants to move away from home to get away from her parents. “She’s had enough of mum and dad. She needs to live in her own flat.” (Grace’s father)

Unfortunately for Grace however, she has been on a waiting list for two years:

33 The sample frame excluded people in residential care because, as discussed above, the New Model will have little impact – at least initially – on residential services. These findings are therefore based on people with disabilities who are living at home. 39 “Nothing has happened... we’ve been waiting for two years. No more has been said about it. We need to know what [name of organisation] are going to be doing about it.” (Grace’s father)

Owning their own home is believed by some to provide more control in their lives:

“We put aside a bit of her invalid’s benefit every week so that she can eventually have a deposit for a house. But this saving will probably have an impact on her benefit. Her friends and peers are in the poverty trap – they will end up in residential care. You can have much more control if you are in your own home otherwise you experience ongoing disadvantage.” (Karen’s mum)

ME lives in rental accommodation with her two mokopuna (grandchildren). She would like to buy the house she lives in so her, “mokos will have a place to live and be secure in after I have gone.” (ME)

Employment Of the 19 adults we interviewed, only one is in paid employment. Most, however, wanted to be employed and believed this would be important to helping them live a good life:

Rocky absolutely dislikes the thought of not being able to work. He does not like being dependent on the social welfare system. When asked what a good life would be for him he replies, “Working. Anything that pays a wage. I’d feel shit hot. I’ve always worked.” (Rocky)

“Working is the thing I miss the most. Earning an income. I miss my work chronically. I used to work in a ... I love mixing with people, with the public...My world fell apart when I couldn’t do that anymore.... I stopped work about [x] years ago...the income [from work] is a great thing when you have it.” (Kathy)

Being alone and disabled is difficult for MA at this time as he describes himself as feeling totally unable to feel like a “real man” by not being able to go out and work, which then deprives him of being able to have a relationship and to provide financially at all levels. (MA’s interviewer)

Billy, who is still at school, believes that having a job will help him to live a good life:

“I want to get a good job.” Billy loves [x] and he is currently doing work experience with [x]. Billy wants, “... to earn enough money to live...not to live on the street. I want to live a happy life to the max...extreme. I want to live life to the full.” (Billy)

Assistance getting paid employment

Even though many of the people we spoke to wanted to be employed, there doesn’t appear to be any effective assistance available for helping them get into paid employment:

“Patsy needs better prospects of getting work and getting paid. She is registered with [name of employment agency]. A support person from [name of organisation] helps Patsy with cover letters for job applications but she is not proactive in getting Patsy in front of employers. She doesn’t take an active role in being an advocate for Patsy... I have a whole 40 drawer-full of applications for jobs which Patsy has applied for, but she is always rejected.” (Patsy’s mum)

A particular organisation that is supposed to help people with disabilities get work, doesn’t work for MA because he says they don’t come out to him and never ring him up. He has been registered with this organisation since 1992 and has not heard from them since 2007. He says he has been told he is too old to be educated, and they have stopped calling. (MA’s interviewer)

“We do find it frustrating the lack of services or imagination that comes from [a day services organisation]. For example, there are very few things to do for school leavers. They either go to Avalon or a high needs centre or to Polytechnic (to study).34 There is nothing in the gap. I don’t believe there should be babysitting services. We need an organisation that gets contracts to provide meaningful work/employment... There is nothing advertised out there in the disabled community. We need an organisation that takes the initiative to create meaningful employment... We need someone out there who can help them. Have someone with a bit of get up and go. Have people with imagination and willingness to spend time to give them a go. (Karen’s mum)

Karen’s mum goes on to suggest that (non-disabled) people’s attitude to people with disabilities needs to change:

I want other people to change and the community to change – not the disabled people. There are plenty of employers who could help – not just the big employers like the supermarkets. They get incentives to employ people with disabilities. The mindset needs to change amongst employers.” (Karen’s mum)

One respondent, who has applied for many jobs but has never been successful, suggested that:

“I have been turned down for so many jobs. If an employer has a choice between an able- bodied person and me they will choose the able-bodied person.” (Kathy)

Financial Resources Not surprisingly, given that only one person out of nineteen adult respondents we talked with is in paid employment, financial pressures are an ongoing concern for the respondents and their families and whānau. For some respondents this means not being able to afford the essentials of life:

ME suffers from [x] problems and, “I have to plan what I eat and drink because of the consequences as they cause me to end up in hospital if I get it wrong.” However, ME knows she is eating the wrong foods that trigger [x] but she says she cannot afford the things she should be eating. ME would feel a greater sense of being in control if she had a [surgical device], could afford proper food and had more financial resources. (ME’s interviewer)

Sally owns her own home but it is on the outskirts of the town and she is surrounded by young families. It is not within walking distance of any shops or amenities and there is no public transport. In order for her to get to the shops she needs to pay for a taxi but they are

34 The local Polytechnic runs a two year Certificate in Work Skills (Supported Learning) for people with an intellectual disability 41 expensive. “This was the only home I could afford. I would much rather be in Greerton, with older people. I don’t like the neighbours - they are too noisy... but I don’t have any choice. I can’t afford to move from here. I don’t want to be here.” After all her regular expenses have been paid – all are on automatic payment – and she has paid for pet food and other essentials, she is left with $30 a week to live on. (Sally’s interviewer)

Everything is so expensive for MD. Lack of income limits what he can do. He approached WINZ one day for extra cash to buy extra groceries and felt interrogated by them. “Not having enough money to provide food for my whānau so that I can manaaki35 them [stops me from living a good life].” (MD)

“I have to pay for all my specialist visits – they are $278 – and the specialist doesn’t accept a community services card(!). I can’t afford to see the specialist at that rate. I asked WINZ if they could cover any of the costs and they deposit $2/week into my bank account but what am I supposed to do with that? Put it aside into another account or in a jam jar until I have enough to visit the specialist? I should be able to visit my specialist and have someone pay for that at the time – or at least pay for some of it at the time. (Doreen)

Families can be especially financially stretched:

MF is an adult and lives at home with his parents. His parents have [x] other children to care for. WINZ have been unhelpful when MF’s parents asked for assistance for school clothes for their other children. The mother reported that WINZ staff didn’t believe her, and didn’t understand her circumstances. They told her she didn’t meet the criteria.” (MF’s interviewer)

MB’s parents are super annuitants and cannot afford to provide much extra assistance. At present he is suffering with [x] and there is no extra financial help so they have to pay for it which they are unable to do at times with their pension. They also don’t know what they can claim and have had to pay for specialist fees themselves. They have been told by WINZ that they can only apply for extra financial assistance once every 6 months and they have exceeded that. (MB’s interviewer)

In some cases, lack of financial resources makes it difficult to use what services are available:

“We used to own a wheelchair- capable van but it cost too much to maintain...We recently won a lottery grant to buy a new one but we will have to maintain it out of a sickness benefit. That may not be possible – it’s too expensive.” (Patsy)

“There is a real lack of respite care. It’s booked up way ahead – especially the weekends. But I am too poor to take a holiday anyway. So respite care is not much use to me even if it was available.” (Patsy’s mum)

35 Provide hospitality 42 “I don’t qualify for a sickness benefit because my husband earns just on the threshold. But everything is more expensive when you are disabled. For example I need to have a [specialist treatment] because of my[physical condition]. I [only] sometimes get that through the hospital.” (Kathy)

Caring for family members sometimes means loss of employment for non-disabled family members thereby reducing the family income even further:

“A good life for our family would be for me to work at some future point. I am not really used to staying at home all the time. I’ve always worked. After I graduated from university as a [x] it was a big deal not to work. I am used to earning my own money... More child care hours would help us live a good life so I could work and have more rest and have more quality time with my family.” (Rose’s mother)

Even for parents who are able to provide a financial buffer for their son or daughter, they are still concerned about the likely ongoing financial dependency that their disabled family member will experience:

“Karen is financially fortunate – she can afford to do stuff with her friends. Even if we have to pay for tickets for her friends to go too, that’s ok. We want to do that for Karen. That’s our role as her parents. But it worries me that Karen will probably always be on a benefit. This will hold her back. They need to look at the rules around people who are born with a disability – they are not going to get better – and the benefit is a survival wage only. ACC people get 80% of their salary and can retrain. But people on a sickness benefit are locked into being low income their whole lives. It’s something of a poverty trap.” (Karen’s mum)

Tikanga Māori For most Māori respondents, whanaungatanga is critical in helping them to life a good (or at least better) life. However, several respondents talked about the importance also of tikanga Māori protocols and practices being exercised within services:

MC’s whānau would like to see the incorporation of tikanga Māori values and principles actively applied into the support organisations’ processes and practice, and the use of te reo Māori me ona tikanga within services that involve MC’s care. This is how they see MC’s safety and wellbeing truly respected. Nga mihi nui ki nga whānau. (MC’s interviewer)

MC’s whānau gave an example of what they believed was culturally inappropriate treatment of their son:

MC’s parents report that the day services that MC receives from a particular organisation are culturally inappropriate. For example, MC’s family took him on a trip to [x]. When he got back, a staff member wrote about his trip away. What was upsetting for them was that the staff member put a photo of a Pākeha person from a magazine and put MC’s name on it, and labelled it, “MC in the swimming pool in [x]” and it wasn’t even MC. The staff member had not used the photos supplied to them by MC’s whānau. (MC’s interviewer)

This family believes that Spectrum’s respite services, “give a sense of cultural acknowledgement and practice” and would like other providers to have more “culturally appropriate care and staff”. 43 Similarly, another Māori respondent talked about wanting more culturally appropriate services:

What else would be helpful? “Whakawhanaungatanga - to have a rehabilitation service that runs a Kaupapa Māori treatment programme. Why don’t they have somewhere where we can use rongoa (Māori medicine), mirimiri (massage) and kai (food)?” MG also thought that contact with other kaumatua and kuia would help them live a good life – manaakitangi ...as well as kapahaka and waiata, all in one place and run by Māori doctors and nurses. “The opportunity should be there for extended whānau too so they can be there and involved as well.” (MG)

Pasifika The Pasifika sample comprises only six people with a disability and although this is a small number it needs to be remembered that this represents all of Support Net’s clients classified as ‘Pacific’. To this end, the findings of the Pasifika sub-group can be treated with confidence given that there is no ‘sampling error’ associated with them.

As discussed earlier in this report, within the general population of Western Bay of Plenty, Pasifika people comprise just fewer than 3%; however only 1% of Support Net’s clients are Pasifika. This may suggest that Pasifika are under-accessing disability support services.

As also discussed above, the Pasifika sample was skewed towards people with an intellectual disability and this may be the reason why Pasifika are over-represented in the group of people ‘living a good life’. However, some Pasifika people we spoke to are not living a good life. The research suggests that their needs and concerns are similar to those that are identified by this research for Pākeha and Māori.

Most Pasifika respondents did not express a need for specifically Pasifika support services. However, one respondent was aware of one Pasifika organisation in Tauranga that provides health services but she believed that they do not provide support for people with disabilities. In an informal conversation with the manager of the organisation, he reported that the organisation does indeed lack appropriate staff or funding to support people with special needs and their families.

Pasifika families are not aware of other services, including community services, they could access. We believe that there is a need for a Pasifika advocate to work with people with disabilities and their families to access support. As well as this, the awareness of disability support services needs to be raised amongst Pasifika through better communication strategies.

44 Discussion of results

It is difficult for most of the people we interviewed to live a good life. Some of their difficulties are beyond the control of the Ministry of Health but some are related to the current disability support services and system. With regard to those difficulties in which the Ministry of Health is able to play a role, the research identifies the following issues:

1) Better information and better access to information about supports and services

2) Support to access formal and informal (natural) services and supports

3) People with disabilities need more control, flexibility and choice over the supports they receive

4) More services need to incorporate tikanga Māori protocols and practices.

Each of these is discussed below.

Better information about supports and services Both the desk and primary research found that the Disability Information and Advisory Services (DIASs) in the Western Bay of Plenty were not used by the people we interviewed in the qualitative research project and it was very difficult to make contact with the DIAS’s and/or to get information from them about the services they provide. Given that their mandate is to provide information and advisory services, our findings suggest that they are not functioning as well as they might.

“There are lots of things out there [for support] but I just don’t get out there. [Name of an organisation] are good at picking you up to take you out – they are volunteers. There are probably other outfits out there who do the same but they are hard to find. It is all by word of mouth.” (Doreen)

In the course of researching for this project we came across a website called, www.disabilityconnection.co.nz . This is a website for people with disabilities in the Horowhenua District. The ‘disability connection’ website provides a, “one stop shop for comprehensive up to date information on services, care and options for those with a disability, their families and allied health and support organizations in the Horowhenua District.”36 As well as a description of, and contact details for, relevant service providers, it also has additional information such as a resource page that has links to other useful websites (e.g. the Disability Support Services page on the Ministry of Health’s website), information about community organisations and activities such as sport and fitness.

This provides an example of how another community is attempting to address the need for better access to information about supports and services for people with disabilities and their families and whānau.

36 See: http://www.disabilityconnection.co.nz/ 45 Support to access formal and informal (natural) services and supports

Some people we interviewed acknowledged that there is a lot of support and services available but for various reasons they are unable to access them:

“I have been listening to myself while talking to you and I realise that it is all out there if you want it. But you lose your confidence, your self-esteem, when you lose something like your [x]. You need confidence to contact someone. I need someone to support me to access the services that are out there. I don’t feel like there is anyone out there to support me.” (Doreen)

Others are overwhelmed by the number of providers they have to try and deal with:

“The service sucks. There are too many different providers.” (MG)

Examples have been given earlier in this report of the difficulty of negotiating with each and every agency that provide services, of the demoralising waste of time having to repeat their story over and over, and the inefficiencies of dealing with multiple providers. Continuity of ‘case workers’ was also recognised as being important to avoid having to repeat information.

For some respondents, rather than being overwhelmed by the number of providers, they felt there were too few providers and they needed someone to help them access information and support:

“There are not enough organisations that support Grace. We need to know if somebody is available - such as a key person like our parents advocate from Support Net - to tell us about things that we could introduce to Grace to help her achieve her goal of living an independent life.” (Grace’s father)

Clients need to have more control, flexibility and choice The research provides numerous examples of people we interviewed receiving inflexible services over which they have little control, and not much choice. Some examples follow to illustrate how lack of flexibility, choice and control play out in the realities of the everyday lives of the people with disabilities and their families and whānau who we interviewed.

Examples of inflexible services:

 Not being able to have someone come and shower you at night time because the support person will only come for a minimum of two hours work; the family believe that evenings are family time and do not want someone hanging around for two hours.

 Wanting to have a support worker look after your son in your own home because your son feels unsafe staying in an unfamiliar home. However he does not meet the criteria to have a support carer look after him in his own home.

Examples of lack of choice:

46  Some clients used to be able to help interview support workers and choose who they liked the best. But that doesn’t happen anymore because there, “... are not a lot of choices in Tauranga. The services aren’t there.”

 The mother of a school-aged daughter with a disability does not feel her daughter has any real choices. If the daughter wants something she asks for it and then they are told whether or not she can have it. They don’t really have any say.

Examples of weak control:

 A woman with a disability would like to get someone she knows to do her housework - someone she knows will do a good job - rather than someone who just wants to chat or who isn’t tall enough to wash her windows properly. But the system doesn’t allow this. She knows she can change service provider but says that even if she did that, there would be no guarantee she would get anyone better than she currently has to help her with her housework.

 The parents of an adult man with multiple disabilities say they don’t have any control over what happens at the day services facility where their son spends four days a week. They have not been consulted about the programme or activities he is doing there and constant staff changes and inconsistencies in the way he is treated make it very frustrating for them.

More services need to incorporate tikanga Māori There are some dedicated services for Māori with disabilities in the Western Bay of Plenty; for Home and Community Services these include Whaioranga Trust, Ngati Ranginui, and Ngai Te Rangi; for Supported Independent Living, CCS Disability Action and Ngati Ranginui offer services targeted especially for Māori; Whaioranga Trust offers respite care for Māori. Te Tomika Trust also offers Community Residential Support Services for Māori with intellectual disabilities.

Spectrum Care respite services was specifically noted by at least one Māori respondent as being a good example of a service using tikanga Māori.

However, as discussed earlier in this report, examples were provided of culturally insensitive and inappropriate services being delivered to Māori with disabilities. Some Māori we spoke to would like to see tikanga protocols and practices to be more consistently and more broadly exercised within services.

47 Appendix One: Fieldwork Materials

a) Advance Notice of research project

14 February 2010

address address address address

Advance notice of research project

In recent years people with disabilities have identified a wide range of issues with how Government supports them. In response the Ministry of Health (Ministry) is developing a new model for supporting people with disabilities and their families/whanau.

The Ministry has commissioned independent researchers to obtain feedback from people with disabilities and their families and whānau about their experiences of the Ministry’s current disability support services and system. The focus of the research is on how well the current support services and systems assist people with disabilities and their families and whānau to live the lives they want. This information will be used by the Ministry to help develop a new model of support for people with disabilities and their families and whānau.

The researchers will randomly select people to take part in the research from an anonymous list that we have given to them of people living in the Western Bay of Plenty (including Tauranga) who are receiving disability support services. You may be contacted by a researcher and invited to participate. This would involve a face-to-face interview with the interviewer at a time and place convenient for you and/or your family and whānau. The interview would take about 60 to 90 minutes.

Your participation in the research would be confidential and would require your informed consent. We hope you will agree to be part of this important piece of research because your experiences of the current system of support are very important to us as we work towards developing a new model of support.

If you are randomly selected to take part in this research, the interviewer will contact you by phone and provide you with information, both written and verbal, about the research prior to you deciding whether or not to give your informed consent to participate. If you have any concerns or queries about this research please contact:

Kay Fleming - ph: 07 858 7060 or email [email protected]

Thank you in anticipation of your support.

Yours Sincerely

Anne O’Connell Group Manager Disability Support Services National Service Purchasing National Health Board

48 b) Additional Information mailed to likely participants

Information regarding the Ministry of Health research project

Thank you for considering being a part of the research project which you were phoned about a few days ago. This letter gives you some information about the project to help you make an informed decision about whether or not to participate.

Background to research project The Ministry of Health (Ministry) is a major funder of disability support services. In recent years, disabled people have identified a wide range of issues with how Government supports them. In response, the Ministry is developing a new model for supporting disabled people and their families / whānau.

Before this new model is demonstrated, the Ministry needs to check how well the existing support services and system are working, or not working, for people with disabilities and their families / whānau. The aim of this research project is to obtain this information.

Who’s taking part in the research project? The research is being undertaken in the Western Bay of Plenty because this is where the new model will first be demonstrated and evaluated. A small number (24) of people in this area who receive disability support services from the Ministry of Health have been randomly selected to take part in this study.

Do I have to take part? You do not have to take part in the research project. Your participation is entirely voluntary.

What happens if I agree to take part? If you agree to take part in the research, you will be interviewed by an independent interviewer - someone who is not employed by the Ministry. You will have already spoken to this person on the phone when they rang to see if you are interested in taking part. The interviewer will do the interview at a time and place that is convenient for you. You may choose to be interviewed with a support person present.

Will people know what I have said? The answers that you provide in the interview will be reported anonymously; only the interviewer and your support person (if you have one at the interview) will know what your answers were. Your answers will be grouped together with the answers of the other participants in a written report prepared by the independent interviewers.

What will happen at the interview? The interviewer will start by answering any questions you have about the research. She/he will then ensure that you have read and understood the information in this letter about the research. If you agree to participate in the research the interviewer will then ask you to sign a Consent Form. We have included a copy of the consent form with this letter. The consent form is a document that states that you understand what the research is about and how the results will be used. It also guarantees that your participation is confidential and your answers will be used anonymously. The consent form includes a statement that says you are aware that you are able to end the interview at any time and have your responses withdrawn from the research project. If you agree to sign the consent form the interview will then begin.

What sort of questions will I be asked?

49 The questions asked are about the services and support you currently receive and what helps and hinders you in living a good life. We have included a shortened version of the questionnaire to give you an idea of the sort of questions that will be asked. There are no right or wrong answers. What YOU think is of most value to us.

How long will the interview last? Depending on how much you want to say, the interview will last around 60 to 90 minutes (one to one-and-a-half hours).

Do I have to answer all the questions? If there are any questions you do not want to answer, for whatever reason, you can choose not to answer.

What if I change my mind during the interview and decide I don’t want to participate anymore? You can decide at any point during the interview to withdraw from the research. You can also request that the answers you have already given are withdrawn. We will destroy all the information you have provided as well as any evidence that you had participated in this research.

Will I be paid to participate in the research? You will not be paid to participate in the research but we will give you a koha of $30 as a small token of acknowledgement of your time and input.

What happens to the information I have given to the interviewer after the interview? The interviewer will combine your anonymous responses to the questions with the responses from the other participants in the research and write a report that will be given to the Ministry of Health. The Ministry will then use that report to help them understand the experiences of disabled people with their current supports and services as they demonstrate and evaluate the new model.

Other information If you have any queries or concerns about the research project that you would like to ask before you meet with the interviewer, please contact:

Kay Fleming ph: 07 858 7060 email: [email protected] or Lead researcher (non Ministry of Health contact) Karen Newton ph 09 533 8441 email: [email protected]

Thank you once again for considering being part of this important research project.

Yours sincerely

Anne O’Connell Group Manager Disability Support Services National Service Purchasing National Health Board

c) Informed Consent Form

50 Informed consent for the research project on the current disability services and system in the Western Bay of Plenty

Research Funder: Ministry of Health

Interviewer (write in name):

As a respondent (or as the support person of the respondent in this research) I have had explained to me:

Respondent Proxy consent*

1) The background, purpose and use of this project

2) My consent to participate is voluntary

3) I have a right to withdraw consent at any time

4) I have a right to not answer any, or all, questions asked

5) My participation in the research is confidential

6) The information I provide will be included anonymously

in a report for the Ministry of Health

Respondent (please print and sign) Proxy consent person* (please print and sign)

Name:...... Name: ......

Signed:...... Signed: ......

Dated: ...... Dated: ......

*Only if appropriate; proxy consent can only be given by a parent or legal guardian of the primary respondent.

51 d) Shortened Questionnaire

Living a Good Life

This is a shortened questionnaire for your information. These questions will give you some idea of what sort of questions will be asked.

Q. Most people want to be able to say that they are living a good life. What would be a ‘good life’ for you? Describe it.

Q. How strongly do you agree or disagree that you are presently living a good life?

Q. What disability services and support help you to live a good life?

Q. Are there any disability support services that would help you to live a better life but are not available?

Q. Are there any community support services that would help you to live a better life?

Q. How strongly do you agree or disagree that you are able to choose disability support services to help you live the life you want?

Q. How strongly do you agree or disagree that you have control over which disability support services you receive to help you live the life you want?

Q. What are your goals for the future? What currently helps you to reach your goals? What currently stops you reaching your goals?

Q. If you could change ONE thing in your life that would make the most difference to helping you live the life you want, what would that be? What is the single most important thing that would help you to achieve that?

52 Appendix 2: Questionnaire

Living a Good Life Questionnaire

February/March 2011

Interviewer instructions: Only read out script in bolded italics. All other script is for your information and INSTRUCTION (IF IN CAPS).

Can I just check that you have received and read the information that I posted out to you? Do you have any questions about the research project?

IF YOU ARE NOT CONVINCED THAT THE RESPONDENT HAS READ THROUGH AND UNDERSTOOD THE INFORMATION PROVIDED, PLEASE TAKE SOME TIME TO READ THROUGH IT AND EXPLAIN IF NECESSARY.

Can we now read through the consent form together to ensure that you are able to give your informed consent to participate in the study.

READ THROUGH THE CONSENT FORM AND ASK RESPONDENT AND THE CAREGIVER (IF APPROPRIATE) TO SIGN THE CONSENT FORM. DO NOT COMMENCE THE INTERVIEW UNLESS YOU ARE SATISFIED THAT THE RESPONDENT (AND THEIR CAREGIVER) HAS GIVEN THEIR INFORMED CONSENT AS WELL AS THEY ARE ABLE.

A. Warm-up questions

Objective: Easy ‘ice-breaker’ questions to help establish rapport. These will also help us to establish some context for the interviewee.

Great. Lets start the interview now.

REMEMBER TO RECORD START OF INTERVIEW TIME ON COVER ANSWER SHEET

A1. Tell me about where you live.

A2. How long have you lived there?

A3. Who do you live with?

A4. Tell me about what you do on a typical work [or school] day.

A5. How do you normally spend your leisure time?

A6. Describe for me what disability support services you receive.

A7. Which of these do you believe are funded by the Ministry of Health?

53 B. What constitutes a good life

Objective: To understand from the disabled person’s perspective what they consider would be a ‘good life’ for them.

B1. Most people want to be able to say that they are living a good life. Imagine for a moment that you were living a good life. What would be a ‘good life’ for you? Describe it for me. [SHOWCARD B]

PROBE: What would you do? How would you feel? What would be in your life? What wouldn’t be in your life? Who would be in your life? Who wouldn’t be in your life?

C. Are they currently living a good life?

Objective: To obtain a quantitative measure of whether or not they believe they are living a good life and reasons for that belief.

C1. a) I would like you to think now about your everyday life and how it is for you presently or currently. How strongly do you agree or disagree that you are presently living a good life? Do you strongly agree, somewhat agree, somewhat disagree, or strongly disagree that you are living a good life? [SHOWCARD C]

b) Why do you say that?

READ OUT: Still thinking about your everyday life, I am going to ask some questions about what presently helps you to live a good life. I will then ask you some questions about what makes it difficult for you to live a good life.

C2. a) Are there any specific disability support services that currently help you to live a good life?

b) How/in what ways do they help you live a good life?

C3. a) Are there any community support services that help you to live a good life? By community support services I mean services that are available to everyone not just people with disabilities (e.g. church groups, local sports or activity groups, library, Lions/Rotary).

b) How/in what ways do they help you live a good life?

READ OUT: I would now like to ask you about what doesn’t work for you. Things that make it difficult for you to live a good life.

C5. a) Are there any specific disability support services that currently don’t work for you – that make it difficult for you to live a good life?

b) How/in what ways do they make it difficult for you to live a good life?

c) Please tell me about any specific disability support services that could help you to live a better life but aren’t available or you can’t get access to them?

d) How would they help you to live a better life?

C6. a) Are there any community support services that currently don’t work for you – that make it difficult for you to live a good life?

b) How/in what ways do they make it difficult for you to live a good life? 54 c) Please tell me about any community support services that could help you to live a better life but they aren’t available or you can’t get access to them?

d) How would they help you to live a better life?

D. Control, choice and flexibility

Objective: to obtain quantitative measures of perceptions of control, choice and flexibility in their lives, and the reasons for those perceptions.

D1. a) The next question is about choices you have in your life to help you live the life you want. By ‘choice’ I mean you have options or choices of disability support services. How strongly do you agree or disagree that you have choices in your life, to help you live the life you want? Do you strongly agree, somewhat agree, somewhat disagree, or strongly disagree? [SHOWCARD D1]

D1. b) Why do you say that?

PROBE: Please give me some examples of what you mean.

D2. a) This next question is about the amount of control you have in your life to help you live the life you want. By ‘control’ I mean you are able to choose which disability support services you receive and who you receive them from. How strongly do you agree or disagree that you have control in your life to help you live the life you want? Do you strongly agree, somewhat agree, somewhat disagree, or strongly disagree? [SHOWCARD D2]

D2.b) Why do you say that?

PROBE: Please give me some examples of what you mean.

D3. a) Thinking now about the amount of flexibility you have in your life to help you live the life you want. By flexibility I mean being able to change your choice of disability support services – to choose different options, who provides them and when. How strongly do you agree or disagree that you have flexibility in your life to help you live the life you want? Do you strongly agree, somewhat agree, somewhat disagree, or strongly disagree? [SHOWCARD D3]

D3. b) Why do you say that? PROBE: Please give me some examples of what you mean.

E. Future Goals

Objective: To understand expectations for the future and the enablers and barriers to reaching their goals.

E1. What are your goals for the future? [SHOWCARD E1]

E2. What currently helps you to reach your goals? [SHOWCARD E2]

E3. What currently stops you reaching your goals? [SHOWCARD E3]

F. Recommendations for making a difference

Objective: To understand what they believe are the most effective solutions to helping them to live the life they want.

F1. If you could change ONE thing in your life that would make the most difference to helping you live the life you want, what would that be? [SHOWCARD F]

55 IF RESPONDENT MENTIONS A CHANGE OF STATE (EG ‘GET MARRIED’, ‘GO TO UNIVERSITY’, ‘SLEEP THROUGH THE NIGHT’) ASK:

F2. What is the single most important thing that would help you to achieve that?

G. Closing

G1. Before we close, is there anything else you would like to add that you think is relevant to this research?

G2. Just to remind you that your participation in this research project is confidential and anything that you have said today will be reported anonymously. Do you still agree to have your responses included anonymously in the final report?

G3. Would you be willing to be re-interviewed in about a year’s time to check to see if things have changed for you? RECORD TIME ON THE COVER ANSWER SHEET

Thank you for the time and effort that you have given to this interview. I will leave behind this card with the name and contact details of the leader of this research plus also the name and contact details of someone from the Ministry of Health who is responsible for this research project. The details of the Ministry’s complaints process is also on this card.

If you have any concerns or queries about this interview and/or the research project please don’t hesitate to use the contact details on the letter you received from the Ministry of Health. [SHOW THEM THE CONTACT DETAILS ON PAGE 3 OF THE LETTER]

If you would like to make a complaint please visit the Ministry of Health’s website: www.moh.govt.nz .

Please accept this small token of our appreciation for your contribution to this research. GIVE KOHA AND OBTAIN SIGNATURE AS A RECORD OF RECEIPT.