• About this newsletter
• 1. Feedback on the policy list
• 2. Labour Force Participation and Economic Growth Workshop
• 3. Foundation submissions
• 4. Total Mobility submission
• 5. New Zealand Qualifications Authority management of school exams
• 6. People with chronic conditions: a discussion paper
• 7. Health Research Council draft Pacific Strategy
• 8. Draft Suicide Prevention Strategy
• 9. Submissions in preparation

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About this newsletter

This newsletter is compiled by Greg Morgan, Manager Research and Development. The next newsletter will be released in September.

The newsletter is emailed to Policy Analysis and Information e-mail list subscribers. It is also available on the Telephone Information Service option 311 and on the Foundation website.

If you would like more information on the topics covered below or would like to read any of the Foundation's submissions in full, please contact Greg Morgan: Auckland 355-6961; toll free 0800-243-333; e-mail gmorgan; or fax (09) 366-0099. You may write to Greg in print or braille or on cassette at RNZFB, Private Bag 99941, Newmarket, Auckland.

1. Feedback on the policy list

Drop Greg a line if you have ideas about the range of information the list could be used to distribute or about anything else relating to the list. Please note that Greg will be on annual leave from 30 June until 11 July, and so emails on policy matters will be sent as a digest in mid-July.

2. Labour Force Participation and Economic Growth Workshop

The Treasury, Department of Labour, Ministry of Women's Affairs, and Ministry of Social Development sponsored this two day workshop in April. Attendees numbered 160 and were mainly economists, civil servants and

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social researchers. The timing of the workshop was interesting, given that the government had only recently announced the plan to introduce a Single Core Benefit and associated initiatives. That announcement led some speakers to change parts of their presentations.

Although New Zealand's rate of labour force participation (in terms of full-time paid employment) is already quite high by OECD standards, some groups in New Zealand experience lower participation rates than the top-performing countries in the OECD. Groups under-participating in the labour force include women with childcare responsibilities, disabled people, long-term beneficiaries, and youth. In his opening address Dr Cullen introduced a key theme of the sessions - flexible work arrangements and appropriate parental leave provisions will be required to encourage mothers of young children to return eventually to their jobs. Then Dr Cullen spoke about the clear under-employment of disabled people, and referred to some key policy changes: early intervention to get people connected with the notion that they can work (or return to work), active case management and personalised support, and incentives for people to make choices in favour of work over long-term benefit receipt.

Speakers touched on a range of topics, such as the family context on labour force participation choices, gender and ethnicity factors in labour force participation, and what is the definition of "work" anyway? Should we give more thought to the interdependence of paid and unpaid work?

One Australian academic economist showed that over the last half century America and Australia have experienced roughly the same GDP growth yet in Australia the growth has fuelled higher incomes for some rather than new jobs as in America. Over the period in question Australia has experienced a job loss (full-time jobs) of some 20%. Comparisons between 1981 and 2001 figures show that Australia cannot produce full-time jobs for "unskilled" men, over one million of whom live on welfare support. Three-quarters of Australia's unskilled women do not work full-time, although the participation figures for women have not fallen as much as the figures for men because of social changes in the distribution of work across genders. However, the number of women moving on to welfare tracks exactly with the loss of jobs for the men. So although women's full-time employment rate was pretty much the same in 2001 as in 1981, more women want a full-time income. They cannot get it from the labour market or from sole provider men, and so look to the state for support.

Improvements in the official unemployment rate in Australia were noted, yet the number of men on disability support has continued to rise. The figure for women has risen too, though only fairly recently in response to rule changes around entitlements. The speaker referred to a range of job programmes and initiatives, including one for people on disability pension support that ran for twelve months in 2003-2004. 262 individuals were placed: 63 in full-time jobs, 88 in part-time jobs, and 111 in casual employment. These 262 people out of 788 went through the programme (from an initial cohort of 1,130 - many people had withdrawn after being given a description of the programme).

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Various problems are evident. Society equates no qualifications with no skills. The enormous effort to provide more skills training to the population does not prove effective in closing the unemployment gap experienced by unskilled men. The labour market in Australia is booming, but not producing new (replacement) employment for men displaced through the disappearance of full-time, so-called low skill work. Unless the macro level can be got right, playing round with job schemes that focus on the micro element - the individual - will not be successful. Jobs need to be there...

One presenter spoke on "escaping the disability benefit gap", discussing the awareness in OECD countries that more needs to be done to get disabled people more involved in work. So far disability policies have not been much reformed in the way pensions policies, for example, have been subject to reform. There are high levels of disability benefit support across the OECD; the growth has been rapid, but is declining in most countries. Rates are still particularly high in the English speaking world. It was noted that disability benefits are for an individual almost always a permanent benefit. Despite a strong emphasis on rehabilitation or partial or temporary disability benefits in some countries, there are, on the whole, only very low exit rates from disability support.

By OECD standards, New Zealand shows below average levels of invalid's benefit and sickness benefit receipt, but has recorded above average increases in those levels. The rate of increase has slowed recently.

Reasons for reform? Benefit applications are rising rapidly (e.g. work pressures leading to more people living with mental health conditions) within the reality of ageing populations (there are important age variances in benefit receipt across the OECD). The speaker looked to a range of strategies: assess needs and intervene earlier; seek to make a more flexible labour market; disentangle eligibility for support from work ability and work status; make cash benefits available to cover additional costs and the labour market disadvantages individuals face; seek to break the link from temporary sickness to permanent disability; implement a mutual obligations approach for benefit recipients; provide individualised pre- and post-placement support; grow understanding among employers and consider financial incentives for them to employ people from the targeted groups; and monitor the outcomes of programmes vigilantly.

An adviser to the Treasury explained how disability, sickness, or ill-health are connected with low labour force participation in a causal sense. Yet not all disabled people receive disability benefits, and not all of those receiving benefits (e.g. on mental health grounds) regard themselves as disabled. In fact, 60% of New Zealanders who self-report as disabled are working. Three-quarters of the people who say they have a disability are not receiving a disability-related benefit. Policy makers have been slow to develop actions consistent with the stated wish of disabled people to be integrated into society and to work. Although there are no panaceas, there is evidence that some interventions can have a positive effect on the labour force participation of

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disabled people. Most of the international evidence, however, comes from interventions that have been tried only short-term. The following are single strategies rather than package approaches.

It is far easier to reduce the numbers entering into benefit support than increase the numbers exiting once people have been on a benefit for some time. Formal classroom teaching removed from the work setting is not effective in addressing low labour force participation. Employer subsidies and special employment programmes can have some positive effects, though the evidence is that the impact of these is minimal. Their aggregated outcomes in terms of more employment are not high. There is "moderately positive" evidence that vocational rehabilitation has a stronger impact, especially if it is closely related to work settings, employers are involved, and there are appropriate accommodations for disabled employees. Assessment systems based on capacity and associated needs are more successful than those based on demonstrated incapacity. Early intervention, strong case management, access to mainstream services (e.g. those available to other unemployed people), a return-to-work focus, and financial incentives to seek and hold work are all helpful. Such strategies reduce the focus on entitlement and increase the attention to how participation can be enabled.

Strong anti-discrimination legislation and increasing employers' sense of responsibility in a culture of mutual obligation are important if policies of mainstream integration and activation are to succeed. New Zealand has tended to be passive in this regard. Traditionally it has operated schemes that conduct only limited reviews of a benefit once it is granted, offer few rehabilitation opportunities, focus on assessing entitlements, and maintain a high benefit-to-wage ratio.

Another speaker stressed individual tailored case management, training and re-training support which maintains links to the local labour market (connecting people with real jobs), and the involvement of all stakeholders in the strategies (employers, target groups, disability consumer groups, etc.). Is compulsion helpful? The evidence suggests no, certainly not among young people. Using choice to encourage people into programmes is more helpful.

It is necessary to understand the range of factors that can impede someone's ability to earn a stable income, e.g. low literacy levels, lack of familiarity with technology, an unsafe home situation, the absence of a strong support network, dread at the thought of being stuck in a dead end job, fear of an insecure job.... Active social support to address expectations and hopes is required.

In New Zealand changes are under way, including the trial of enhanced case management systems across fourteen sites, earlier intervention (the right job at the right time), better training of case managers, reduced caseloads (so that managers can spend more time with individual clients), improved access to work assistance, and stronger, stepped work incentives. The Single Core Benefit will switch the thinking from a disability entitlement to an extra disability payment ("add-on") related to costs.

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Pilot programmes are crucial to test outcomes as well as the cost of implementing changes to case management. Time will tell whether more investment in case management models will be needed.

While it is true that all comments summarised above were about aggregates rather than about individual circumstances, it remains the case that RNZFB members, among others, continue to face societal barriers when they seek employment. Barriers include employers' attitudes and the difficulty of accessing essential public information in a predominantly visual world. One of the Australian speakers commented that in his country half of the people coming on to disability and sickness benefits have already been unemployed for five out of seven years and have therefore been exposed to mainstream interventions. Work needs to be undertaken to understand more about the group that does not enter the benefits from the unemployment rolls. Mortality aside, only 3% of disability and sickness beneficiaries move out of the benefit support system annually. Recent studies in Australia suggest that voluntary programmes to increase workforce participation have benefits compulsory schemes do not. Good communication about services is essential: case management interviews alone are insufficient. Extensive contact between the case manager and client is needed, e.g. five days per week for the first three months.

Some information about the workshop is on the Treasury website. It was not intended that the proceedings would be published in full.

3. Foundation submissions

The Foundation is close to launching its new web site, and this will contain abstracts of the submissions it makes to government and other organisations.

In April and May 2005 the Foundation made a submission on draft waste bylaws proposed by three councils. The Foundation sought to confirm that the bylaw intended to deal with the depositing of unsolicited advertising in letter boxes would not prevent charities sending out direct mail letters or appeal envelopes. Other submissions have been on the annual or strategic plans of some councils and district health boards.

RNZFB Community Committees and consumer organisations are invited to offer suggestions in respect of consultations to which the Foundation could usefully make a submission. Email ideas to submissions

4. Total Mobility submission

In April the Foundation gave feedback on the review into the Total Mobility scheme. This was a lengthy submission informed by individual members of the Foundation who use Total Mobility (TM), by Foundation Community Committees, and by staff members who assist members to learn about and access the scheme in various parts of the country.

The Foundation has appreciated the dedication of the Ministry of Transport and Land Transport New Zealand staff charged with this phase of the Total

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Mobility review and applauds the efforts of the team to ensure that the consultation has been wide, thorough, and inclusive.

Scheme purpose

The Foundation believes there is value in reminding the community that Total Mobility exists so that people for whom a public transport journey would be inaccessible under certain circumstances can be active participants in society. The emphasis on "door-to-door transport" helpfully distinguishes TM from other transport services that are not whole journey solutions. Using the term "transport" (i.e. rather than "taxi") means that TM is defined by the mobility it gives an individual rather than by the type of vehicle involved. The Foundation's membership values TM as a transport solution that meets real needs at a practical level.

The Foundation understands and accepts that TM will remain a partnership between local and central government, and that this review is directed primarily to those areas of the country in which TM currently operates. However, the right of people with impairments to participate in the community is no less important in rural areas and towns that are not at present covered by TM. The Foundation is therefore hopeful that the Human Rights Commission inquiry into accessible land transport and further work by agencies responsible for public land transport at the national and regional levels will address the barriers to social participation still encountered by disabled people. See the New Zealand Disability Strategy actions 8.5, 8.6, and 8.7 and the New Zealand Action Plan for Human Rights, Priorities for Action 2005-2010.

TM is not currently available in all local authorities. Land Transport New Zealand should, in consultation with local authorities, develop a plan to extend the service throughout New Zealand. Foundation members living in Kaitaia, for example, cannot use TM on visits to Auckland because it is not provided by the Northland Regional Council to Kaitaia residents.

Eligibility criteria

The Foundation believes that membership of the Royal New Zealand Foundation of the Blind must entitle a person to use TM anywhere in New Zealand. In practical terms, some or all public transport journeys will be impossible for a Foundation member to undertake independently.

The Foundation strongly supports the whole journey criteria. Even if individuals use public transport sometimes, it remains true that blind, deafblind, and vision-impaired people can face severe difficulties making a particular journey. Problems include inaccessible timetable and route information, the inability to see route information displayed on buses and trains, dangerous routes to and from buses and trains, and the practical difficulty of shifting from one bus or train or ferry to another mode of transport. Individuals may be disoriented and at risk when they try to use public transport in an unfamiliar environment, or when particular weather or light or falling darkness affects their limited sight. Rain can mean that a person with

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low vision experiences difficulty as though it were night. Glare can mean that a person who has little vision problem indoors becomes almost blind in bright sunlight.

People who live where TM does not operate, children, people in residential care settings and people with short-term impairment should be eligible for TM. Social participation is a right of every citizen, including all these groups. Blind, deafblind, and vision-impaired people should have the right to mobility wherever they are (see the New Zealand Disability Strategy objective 8). Just as a citizen can use utilities and amenities when visiting another city, so should anyone eligible and registered for TM be able to use the system whenever they are in an area in which it operates. Where it operates, TM represents an essential service.

Most people in a rural area need to go to an urban area for hospital and specialist services, and are already challenged by the task of getting transport to and from the town or city. It would greatly help them if they could use the available TM service whilst in the town. They would be able to get to appointments independently and complete any other business during the one visit.

Foundation members should be able to use TM when they visit urban centres. This would be a significant step forward for people who must visit cities for visits to specialists and hospitals, education, job interviews, and many other reasons. The cost of getting round a city can be substantially dearer than the cost of getting to it.

Financial modelling

The Foundation welcomes the Ministry of Transport's statement that it will undertake financial modelling for possible improvements. The Foundation believes that modelling increased costs will prove that TM eligibility can be more consistently applied without the increase in local and central government spending on TM proving unsustainable. Also, system efficiencies can lower administration costs.

Note: because individual needs vary so greatly, the Foundation believes it essential for TM to continue to allow eligible persons to travel with a support person if desired.

Standardised fare subsidy

Certainly the TM fare subsidy must be standardised in order to deliver national consistency. The Foundation does not believe that this or any other possible improvement should have the effect of spreading the existing TM spend more thinly, thereby substantially reducing the fare subsidy for some areas. We believe that financial modelling will show that the additional expenditure required to achieve a nationally consistent fare subsidy is affordable, if there are also system efficiencies.

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Feedback from individual Foundation members has favoured a fare subsidy of 50%.

The Foundation recognises that the TM scheme must take account of geographic realities. A major urban centre is very different from a small city in terms of the distances people need to travel to get to various facilities and venues. In Auckland, say, a taxi fare of $40 or $50 is not uncommon, whereas in a small town any community facility could be reached for $10 or $12. Moreover, not every TM region has a maximum subsidised fare. Developing a formula to set maximised subsidised fares should not deliver a substantially less adequate TM service for users in areas which do not at present have a maximum subsidised fare.

A maximum subsidised fare based on dollar values has the disadvantage that over time inflation erodes the distance that can be travelled for the maximum amount.

The Foundation recommends a distance-based approach be used for setting journey limits. Naturally the distance must be measured as the route a vehicle would actually take rather than as a crow would fly. The literature review being undertaken by the Ministry might suggest a means of modifying a distance based formula to account for people's need to get to key places such as shopping centres, airports, major sporting venues, educational facilities, and hospitals. For example, in Dunedin the airport is a considerable distance from the city, and in Napier/Hastings the only hospital is in Hastings. Perhaps maximum distances could be measured from a variety of key places within a region. So from Tauranga, for example, a traveller could use the TM subsidy to reach Katikati or Te Puke but not further afield.

In some regions, it may be possible to set the maximum journey at half the distance taken to travel from one end of the region to the other. That will not work everywhere. Whichever method is used to set the maximum in particular places, it is important that the process be transparent. Funding agencies (central government and regional and/or district councils) and a representative user group should jointly discuss and set the maximum for a region. It is essential that the maximum for each part of the country be openly communicated as part of the effort to publicise TM to all current and potential users. National consistency means that a TM user visiting another part of New Zealand must easily be able to know in advance how far may be travelled for the maximum subsidised fare in that place.

Remove minimum fares

Need is need. The Foundation urged the review to recommend an end to minimum subsidised fares and any local surcharges on particular types of journey or vehicle on the grounds that they are inequitable.

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Number of trips

There should be a nationally consistent method for deciding every user's entitlement to use TM. But using the language of "vouchers" locks in a less than ideal system for administering the scheme.

Some people rely on taxi travel to participate in work or education and should have the right to use the local TM scheme.

Not every region sets a limit on the number of TM journeys available to an individual. The Foundation believes that modest increases in TM funding by local and central government, more efficient and cheaper administration systems, retaining the user's contribution at 50% of the subsidised fare, and setting a journey maximum will together enable the removal of allocation limits. Financial modelling should prove that.

Allocation limits should be abolished because they constrain TM artificially. If a local community through its regional authority undertakes to operate TM, the TM scheme should not be compromised.

Restrictions based on trip purpose are discriminatory. In accordance with the New Zealand Disability Strategy, disabled people have the right to live in and move round their chosen community and to participate in the economy, employment, and leisure activities. People use TM because they do not reliably have available other transport options that would cost them less. That reality should underpin the provision of the scheme.

Assessment

No financial or administrative barriers should discourage eligible persons from accessing TM. In the case of Foundation members, people will already have met the costs of visiting an optometrist or ophthalmologist for an eye diagnosis, and in many cases there will have been several visits to a doctor, specialist, low vision service, or hospital beforehand.

In some cases (e.g. for Foundation members) an assessment should not be required, and a confirmation of eligibility should suffice. Costs can be reduced by not requiring unnecessary assessments.

Note that not all Foundation members who live in TM areas are registered to use the scheme. In Auckland, for instance, some 36% of members are registered for TM. The majority who are not registered for TM might not have heard of the scheme or might not need to travel independently by taxi or might not be able to afford their 50% of the subsidised fares. It does not follow that automatic registration of Foundation members for TM will lead to significantly increased use of the scheme.

Administration

National consistency is key. The administration scheme must be efficient and cost effective, and not place an undue administrative (and cost) burden upon

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agencies that undertake assessments. Currently it is far from easy for eligible individuals to obtain a clear picture of their entitlements under TM.

All participating authorities need to advertise information about their own schemes and those elsewhere in the country so that an eligible person can easily and knowledgeably use TM in other parts of New Zealand. This will mean uniformly including details in all council publications and web sites, explaining availability of the scheme in other areas, and providing customer service support to existing and potential users.

The Foundation believes that consideration should be given to developing a charter to be signed by participating councils and transport operators. Signatories would accept the responsibility to disseminate detailed and current information about TM, including complaints procedures. Complaints procedures need to be well advertised, easy for users (e.g. accessible to blind, deafblind and vision-impaired people), and adequately monitored. National guidelines around the receiving and handling of feedback (complaints, compliments, and suggestions) would strengthen community support for and appreciation of TM. A charter culture might helpfully provide a structure within which transport operators and TM user groups could share perspectives and explore the potential for service enhancements.

The Ministry can show leadership by funding or itself producing an overview of the scheme and by funding accessible formats for the use of people who cannot read standard print. This would include provision for audio, braille, electronic text, and large print. Accessible web pages must offer any downloadable documents in Word or text form as well as PDF because PDF files are not reliably accessible to people using adaptive technology such as talking screen readers. The Telephone Information Service operated by the Foundation is an excellent way to communicate essential information in audio form to blind people throughout New Zealand.

The Foundation will certainly advise on accessible information needs and costs. It is certain that TM information made accessible in, for example, audio form could meet the needs of individuals other than members of the Royal New Zealand Foundation of the Blind. These would include people with print disability, literacy difficulties, or English as a second language.

It would be very beneficial to users of TM if they could ring up the local authority responsible for TM and obtain a list of trips and amounts to present to Work and Income for disability allowance purposes. This would certainly assist those users who cannot read receipts and find it difficult to keep track of them.

The Foundation compliments the Auckland Regional Council and the Wellington Regional Council on making TM information easily available to users.

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Transport operators

A problem encountered by many users is that within a fleet where swipe cards are in use, not all cars are fitted for TM. Often individual drivers refuse to handle TM or are not well trained to do so, and this can be troublesome to users or even traumatic for them.

The Foundation believes that a TM transport operator should be required to make 100% of its fleet TM compliant. All its drivers should be trained to handle TM and to meet the needs of disabled passengers.

Certainly, blind, deafblind, and vision-impaired travellers - while appreciative of TM where it is available - receive variable levels of service from taxi drivers. Common problems are:

• Drivers have poor route knowledge. Passengers who are unable to see the environment cannot easily direct a driver who is unaware of the route that should be taken and are likely to be charged more than the journey should have cost.
• Many drivers lack skills in guiding a blind or vision-impaired person. Drivers often do not know how to provide physical assistance in a safe and appropriate way.
• Many drivers for whom English is a second language have difficulty communicating verbally with passengers. This is especially stressful for people who cannot see the driver's face and gestures.
• Many drivers have difficulty in communicating effectively with people who cannot see where they are pointing or who cannot visualise directional information.
• When vouchers have to be filled in, blind, deafblind, and vision-impaired passengers have no certainty that the details (including the fare amount) written on the voucher are accurate.
• Foundation members can find it difficult to keep track of receipts.

The following comment from one Foundation member echoes the sentiments of many: "It's time for TM to move into the 21st century! ... A card that could be used in a seamless national scheme would avoid the numerous complaints I get from taxi drivers who have trouble reading the taxi vouchers and filling them in because of the coloured paper they are printed on. It would avoid the blind passenger having to sign the voucher for every trip."

The Foundation firmly believes that in terms of administration, a swipe card system:

• is cheaper to operate;
• reduces the risk of fraud (including meter over-runs);
• provides users and operators and funding agencies with certainty about the amount charged for a journey;
• saves the users the difficulty of filling in and filing bits of paper (if they can);
• provides users with a convenient ID card (especially as TM users will often not hold a valid driver's licence); and

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• encourages taxis to install swipe card readers useful for a whole range of commercial transactions.

In small towns, where taxi operators may not even have a PC, a swipe card system may genuinely prove a challenge for the local community of operators and users. However, the Foundation recommends at least considering the technology that makes TM convenient, safe and affordable to operate.

The Foundation believes that the Ministry should follow the example of the Auckland Regional Council and cost the option of encouraging TM transport providers to install swipe card readers and receipt printers, and guiding authorities that administer TM to replace voucher systems with swipe cards wherever possible. A subsidy for transport operators might be appropriate, although it is true that the cost of introducing service enhancements is one that innovative businesses will undertake when the benefits and potential are clear. Administration costs should be lower, the potential for misuse of TM will be significantly reduced, and users will receive a service that is easier to use and inclusive of those who cannot use vouchers independently.

The Foundation recommends a swipe card for controlling the data relating to a journey and the amount to be paid. It is not at this point recommending an all-in-one TM credit or direct debit card. These systems could be successfully introduced only after consultation with users and amid a high level of confidence that people on limited incomes and passengers unable to see would not regard such an intelligent card as unaffordable or insecure.

"Sighted guide" training is essential, and should be part of a TM transport operator's contractual or charter obligation. Of course, not everyone with some degree of vision impairment is registered with the Foundation. A degree of vision loss is a common experience within an ageing population. The training that would assist drivers to deliver a safe, efficient service to Foundation members would help them in their dealings with a variety of passengers.

5. New Zealand Qualifications Authority management of school exams

The Foundation used this review to make the follow recommendations:

That schools be obliged to ensure that their internal test and examination materials are, as required, produced in accessible formats that conform to the same levels of quality the Ministry has set for the production of accessible formats by the Foundation.

That schools use technology to minimise the time taken to produce accessible formats for students who are blind, deafblind, or vision-impaired. They will do this by creating and communicating master documents to the Foundation or another producer in a suitable electronic format.

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That the Ministry of Education and NZQA consider an XML-based national file standard for the storing of educational materials in order to reduce the time required for accessible format production. This initiative would involve other partners, e.g. the National Library of New Zealand, with regards to legal deposit requirements.

That the Ministry of Education seek to increase the use of information communications technology among blind, deafblind and vision-impaired students in order to support successful transition to further study or employment, and to help students engage in lifelong learning.

That the Ministry of Education investigate whether Kia Ōrite Achieving Equity: New Zealand Code of Practice for an Inclusive Tertiary Education Environment for Students with Impairments provides a model for developing resources and guidelines to assist schools in offering an inclusive environment to senior students. This would include the provision of accessible formats at each stage of the education and examination process.

6. People with chronic conditions: a discussion paper

The Foundation asked in its submission in May that the final report to the Minister contain:

• Evidence that there has been some consideration as to whether blind, deafblind and vision-impaired people who have a chronic condition tend to fall disproportionately into the "people from under-served populations";
• Direct reference to the New Zealand Disability Strategy, and recommendations and actions in support of people with sensory disabilities who live with or are likely to develop chronic condition(s);
• Actions designed to remove the barriers to services and information encountered by people with sensory disabilities;
• Actions designed to equip the health workforce to communicate effectively with people are who blind, deafblind or vision impaired;
• Actions to support the health workforce (professional, lay, and/or volunteer) to employ and use the skills of disabled people;
• Actions to support and resource the families and communities of disabled people by reducing the burden of direct and opportunity costs they carry; and
• A broader statement of what constitutes prevention and an endorsement of prevention activities at all stages in the development and progression of chronic conditions.

7. Health Research Council draft Pacific Strategy

In its submission in May the Foundation welcomed the Strategy.

The 2001 Disability Survey indicates that disabled Pacific people have high needs for health and disability support services. Not all those needs are currently being met.

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Consistent with the mission set forth in the Pacific Strategy, the Foundation hopes that the HRC might actively encourage research in two areas in which our society needs to build knowledge:

[1] the health-related experiences of Pacific people with disabilities, and

[2] the habilitation and rehabilitation interventions that can best support disabled Pacific people to lead healthy and socially active lives, e.g. what strategies can reduce the health-related constraints experienced by Pacific people who have temporary or lasting disability?

Areas of overlap between health conditions and acquired disability (e.g. Type II diabetes) challenge researchers to have an understanding of how vision-impaired people, among others, live with their vision impairment, day to day. We believe that this contextual awareness is essential to the Pacific Strategy and would like to see wording to reflect its centrality.

The Foundation endorses the cooperation between health, research, tertiary, and community sectors envisaged by the HRC.

8. Draft Suicide Prevention Strategy

In June the Foundation made a submission to support the draft Strategy, "A life worth living"

(see the draft Strategy "A life worth living" on the Ministry of Health website).

The RNZFB-supported consumer organisation SEYFF (Support and Education for our Youth, their Friends and Families) has since its inception highlighted the fact that blind and vision-impaired youth find it particularly difficult to build confidence and achieve independence. They cannot often obtain an after school job or easily get to venues or activities where there are other young people. Adolescent pressures around learning to be independent can take longer to work through when one has a sensory disability like blindness, deafblindness, or severe vision impairment. SEYFF has been actively involved in programmes that encourage risk awareness and help-seeking, i.e. interventions that bring forward information and support at a time of crisis. SEYFF has organised camps, information sessions and social gatherings designed to provide opportunities for peer engagement among young blind and vision-impaired people from the teens through to 30 years of age.

The Foundation agrees with widening suicide prevention initiatives to all age groups. Research indicates a link between functional impairment and depression among older adults. The leading cause of vision impairment among Foundation members is age-related macular degeneration. The loss of vision takes an individual through stages of realisation and grieving akin to bereavement. Less gradual loss occurs in the case of, for example, people who become adventitiously blind as the result of an accident. Those individuals must live through trauma and then live with its lasting results.

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Life-long blindness often engenders grief and a sense of guilt within the person's wider family, and the ramifications of those feelings can be felt for much of a lifetime.

The draft Suicide Prevention Strategy makes sound references to a range of key social policies and strategies. References to the New Zealand Disability Strategy are especially welcome. The Foundation expressed its support for the vision of a non-disabling society as advanced in the NZDS, but noted that societal barriers continue to prevent the full inclusion of blind, deafblind, and vision-impaired people in a visual world.

9. Submissions in preparation

The Foundation will make a written submission on "Fit for purpose and practice: A review of the medical workforce in New Zealand" (see "Fit for purpose and practice" on the Health Workforce Advisory Committee website). Ideas are welcome. Thank you to those policy list recipients who have already made suggestions.

Also, the New Zealand Digital Strategy is now released and available on the New Zealand Digital Strategy website. There is some content about accessibility issues, but could be more. The Foundation will aim to make some written suggestions by the end of July. Recently the government appointed the Digital Strategy Advisory Group:

Malcolm Alexander - Chair of the Telecommunications Carriers' Forum.

Hamish Crookes - Chairman of the Matagi E Fa Trust, a Pacific Charitable Trust to provide a vehicle for Pacific Peoples to get involved in the information technology sector through education, training, community and economic development.

Robyn Kamira - a founding member of Society of Professional Māori Women in Information Technology, who has extensive experience in Māori IT and education initiatives.

Prashanta Mukherjee - twenty years in the ICT industry and founding trustee of The Big Idea Charitable Trust, which operates the largest online arts and culture community in New Zealand.

Graeme Osborne - Chair of the Telecommunications Users Association of New Zealand.

Paul Reynolds - member of the Library and Information Advisory Commission and of the International Academy of Digital Arts and Science.

Katrina Troughton - chief executive of IBM New Zealand Ltd and member of Information Technology Association of New Zealand.

John Truesdale - Manager Digital Library Services, Christchurch City Libraries and involved in successful Christchurch City Council collaborative projects in IT and education.

Andrew Williamson - Executive, National Advisory Committee for Computing Qualifications, and catalyst for and leader of Community ICT initiatives in Waitakere City, including chair of the Waitakere eDemocracy Group and of the Waitakere City's web portal.