A submission to the Health Workforce Advisory Committee. 8 August 2005.

Context issues

"A substantial increase in the proportion and numbers of the population in older age groups" points to a concomitant rise in the numbers of people who experience vision loss. Age-related macular degeneration is the leading cause of vision impairment among those who are registered as members of the Foundation.

Not all New Zealanders who experience significant vision impairment are registered with the Foundation. The 2001 New Zealand Disability Survey undertaken by Statistics New Zealand estimates that there are over 90,000 New Zealanders who have significantly impaired vision. Based on survey respondents who identified themselves as having a vision impairment, in 2001 some 81,500 New Zealand adults were blind or had impaired vision that could not be corrected by glasses or contact lenses. Vision impairment in this survey meant difficulty in seeing ordinary newspaper print, or the face of someone across the room (even when using glasses or contact lenses).

Of course, the Foundation's membership spans all age groups. Children and young people often experience complex vision issues such as cortical vision impairment. Early intervention and assessment for both children and adults can maximise a person's use of available sight, encourage ongoing participation in the community (consistent with the vision advanced in the New Zealand Disability Strategy), and reduce the likelihood of an older person requiring residential care.

Vision services: an example of the need for more integration

The Foundation is not itself a clinical agency. It listens to the experiences of its members as they use clinical services.

The various difficulties Foundation members experience in accessing vision services are an example of the need for service redesign, as outlined in chapter 4 of the discussion paper. Anecdotal information is that many general practitioners have only a limited knowledge of sensory impairment. Ophthalmologists do not always display awareness of the scope and benefits of low vision services. Referral routes are not always clear for consumers

It is frequently noted by members that clinicians do not show sufficient sensitivity in giving a diagnosis relating to vision loss, particularly in the cases for which medical science cannot offer a fix. There is a need for more counselling and whole-person support at what is a time of crisis for many individuals and the whanau/family. A diagnosis of severe or anticipated vision impairment leads many people into a state of grieving. Research indicates a link between functional impairment and depression among older adults.

Currently vision services tend to be uni-disciplinary. They are difficult and expensive to access from many rural areas, and there is insufficient recognition of the transport and accommodation costs incurred by people who cannot drive themselves to appointments in centres distant from where they live. There is no funding provision for some services to be delivered in the home.

An "expert patient" role would be an important component in creating vision services that are informed by the experiences of consumers.

In practice better integrated services might mean:

• ensuring a national coverage of vision services achieved through targeted funding, training and professional development in primary care so that medical and rehabilitation services are coordinated;
• joint assessments
• developing databases and information centres to detail the range of services available and how to access them;
• collaborating to produce centrally a range of patient information in accessible formats (e.g. large print, audio, electronic text, and braille); and
• providing multiple referral points into vision services.

Training for accessible and inclusive health services

Foundation members constantly find it difficult to access and use the health system at all levels - primary care, allied health, and hospital services. This is in spite of the New Zealand Disability Strategy and its vision of a society that does not disable people who live with an impairment.

With reference to chapter 5 in the consultation document, the Foundation agrees that interprofessional learning and practice are needed in the health sector. This could incorporate generic training to extend the competence of health and allied staff in relation to low vision screening, assessment and rehabilitation. Awareness training would also equip health staff to make their services and facilities consistently accessible to and inclusive of people who are blind, deafblind, or vision impaired.

This training to develop a professional's ability to interact with people who have a sensory impairment should begin in the medical and health science degree programmes and continue as an important professional development activity. The outcome would include a medical workforce that can confidently and competently communicate with blind, deafblind and vision-impaired consumers, and help them access and understand medical and allied health services at whatever level they enter or interact with them.

Human and infrastructure resources available locally are likely to influence whether services are multi-disciplinary or interdisciplinary, gathered on one site or operated at multiple sites. The principle that all services are accessible to all consumers on an equitable basis must be recognised as fundamental. "Accessible" includes physical access, timeliness, and the right information at the right time. For example, medical and allied health staff must be able to communicate effectively with people who cannot see directional gestures or see to read the written word. Auxiliary aids and services are required to make written communications readable by people who read through braille, electronic text, large print, or audio. The experience of Foundation members is that unless their needs are anticipated at the very start of service planning, those needs are easily overlooked. And yet service design which incorporates an awareness of sensory disabilities meets the needs of people who are temporarily impaired through disease or accident, or of an ageing population which experiences increased vision and hearing loss.

Some characteristics of an inclusive service

• staff are professionally developed to understand and respond to the needs of a consumer who lives every day as someone blind, deafblind, or vision impaired
• blind, deafblind, and vision-impaired people are safe in the service environment (e.g. staff know how to guide someone safely and can impart essential information in a non-visual way;
• emergency planning follows the inclusive principles outlined in the Ministry of Health's National Health Emergency Plan 2005)
• clinical and other settings model the inclusion of disabled people as employed service professionals; and
• accessible formats (e.g. braille, audio, large print, electronic text) are provided immediately upon request.

An inclusive service might be one that uses providers such as the Foundation to assist in policy development, staff training, and service design.

Working together

The Foundation agrees that there needs to be "a systemic, sector-wide approach to health and medical workforce development". Health and social workers should be able to accept that people are not necessarily unwell because they live with a disability. Service delivery design must ensure that disabled people are not excluded from using medical and health services.

Including a wider range of stakeholder perspectives in health sector planning would mean that the unique needs of people with sensory disability are better catered for. For instance, the experiences of blind, deafblind and vision-impaired consumers could be embedded into all partnership agreements for developing and contracting health and rehabilitation services at the local level. Improved access to appropriate vision services across the country would support a range of actions relevant to the health of older people, helping district health boards to deliver effectively on their administrative responsibility for primary health care and population health goals.

The Foundation sees a place for organisations representative of disabled consumers in the process of "redefining and renegotiating roles" and thereby gaining "a new mandate from the public".