Services Delivery Models beyond 200

How do we deliver effective, high quality services to all deafblind people.  Although there are some excellent examples of effective service delivery in Australasia, the issue of delivering services to this low incidence disability is one of the biggest challenges to us as we progress into the new millennium.

This address, I recognise, is biased to our situation in New Zealand, where we have an estimated 1000 people who present with the deafblind condition. This total includes an estimated 150 who present as congenital deafblind.  This population is spread over a 1000km stretch of a land separated not only by distance but also by many natural geographical barriers.  In talking with providers and clients both in New Zealand and in Australia I recognise that in many instances our situations are not dissimilar.  In New Zealand, under the auspices of the RNZFB, the current service delivery is being reviewed and possible service delivery models are being examined.  This session provides an ideal opportunity to examine issues surrounding service delivery mechanisms and discuss possible solutions.

I do not apologise for this address not being an academic treatise on the service delivery to people who are deafblind.  It is aimed at identifying many of the issues surrounding service delivery to those people, which I hope, will be thought provoking.  I am deliberately leaving the question of possible service delivery models to our panel and I hope that the interactive portion at the end of the session will also invoke many other responses and raise other issues.

Just who are the potential clients for a service to people deafblind.  There seems to be general agreement that this group of people present with a loss of both vision and hearing whose combined effect provides substantial limitations on the ability of those individuals in the areas of communication, information and mobility.  Deafblindness is regarded internationally as a unique disability, at least among those people working with and on behalf of people who are deafblind, some enlightened bureaucrats and a few Governments.  

Just how deaf and how blind does a person need to be to qualify for services?  We know that each of those sensory disabilities compounds the other to effect of deafblindness.  To try and set parameters based around the technical loss of each seems pointless.  A functional assessment of each person carrying out their day to day activities appears to be the most appropriate way to judge who requires services.  Therefore, as any provision of service is based on need, such an assessment appears to be pivotal in the design of a service delivery model.  However, I do understand that there are huge issues surrounding identification.

The identified group is by no means homogenous, with many of the needs of the congenital deafblind being quite different from those who have acquired deafblindness.  Although common components, such as the need for alternative communication modes to speech and print, may be identified, people belonging to both groups generally have quite different needs.  The needs of deafblind children also present differently to that of adults. Families who find themselves with a deafblind child, parent or grandparent also have specific needs.  Add to this mix additional complex and interrelated needs that some people who are deafblind present with, and the potential scope for service delivery is very wide indeed.
We may ask, "do all the aforementioned people belong to our target group for service delivery?"  For example, should we be concerned with the deafblind component of the person who is also severely intellectually disabled?  Should a service delivery model consider the needs of families?  Should the needs of the older deafblind who have acquired deafblindness be considered as being of the same importance as the congenital deafblind.

Personally I think that the short answer to all the above questions is yes.  Surely it is no co-incidence that what was the International Association for the Education of Deafblind has changed its name to Deafblind International and its focus from the education of people who are deafblind to all matters concerning them, including the elderly who have acquired deafblindness.  Organisations around the world have developed or are developing services to cater for the needs of all deafblind people.

The needs of people who are deafblind are numerous.  Perusing a selection of documents from around the world citing the needs of deafblind people there seems to be little disagreement.  A by no means exclusive list, would include: communication skills development, interpreting, advocacy, workplace and employment support, support to access shopping, banking, appointments, etc., behaviour management, practical assistance, orientation and mobility, techniques of daily living, counselling, recreation activities, information provision, liaison with other agencies and family support.  Such a diverse range of needs demands a comprehensive and flexible service.

If we take a purely human rights approach to the needs of the deafblind population we could say that each member must be able to fully participate in their society according to their ability.  We could also demand that it is the duty of the state to provide the funding to enable this to happen.  Unfortunately we do not live in an ideal world and the provision of funds for low incidence groups is minimal.  As governments attempt to stimulate their economies by cutting taxes and giving individuals control of providing for their own needs, they are continually looking for ways to prune government spending.

In New Zealand there are two big budgetary items that always fall under the knife, health and welfare.  Funding for disability in general has been reduced and as it comes under vote health, disability has to compete with the ever-increasing demands of a health system that is being under-funded.  

Many of the potential clients for a service to people who are deafblind live in community houses, rest homes and some are still in institutions.  There is only one trust, which has a specialist community home for the deafblind which my partner and I, along other families, set up.  The organisations, which administer other residences, have as their focus other disability types.  For example, in New Zealand the IHC (intellectual impairment) and Spectrum Care (psychiatric) provide for many of our congenital deafblind people while others are in a variety of stand alone trusts

The problem for a service delivery to those deafblind clients who reside under other organisations is that management of those organisations is often loath to spend the time and money upskilling staff in the deafblind condition.  Some are hostile to the service provider for deafblind and limit the amount of time they can spend with staff or refuse them entry.  Staff in those community homes are only paid low wages and staff turnover is high so often the service provider for deafblind find that they are continually dealing with new staff.  Should it be mandatory for such organisations to ensure that they have staff whom are skilled in the deafblind condition?

So in retrospect what picture have I created so far about deafblindness?  A unique, low incidence disability, whose members do not present as a homogenous group, whose needs are many and various, for whom funding is at a premium and who are domiciled in a variety of situations.  It is apparent that the designing of service delivery models, to cater for the needs of this group of people, provide challenges even in the those situations where circumstances appear to be reasonably favourable.

In countries or indeed cities that have large populations, the numbers of people who present with congenital and acquired deafblindness may allow for separate service delivery mechanisms for each to be deployed.  When reviewing many excellent North American, European and Australian service delivery models we acknowledge that they generally have quite large numbers of deafblind clients, some in relatively contained local areas.  

For example, Sense in the United Kingdom is developing separate services for older people with acquired deafblindness alongside existing services for the congenital deafblind.  Extensive services for the older person who has acquired deafblindness have been developed in the Netherlands, Denmark and Sweden.  With the ageing of the baby boomer generation the older deafblind population is set to increase dramatically.

Now while the problems facing the delivery of services to the deafblind population may appear daunting for countries that have large populations contained in relatively small geographical areas, the problems are exacerbated in New Zealand, with its small population (3.5 million) spread over a large area.  

This is true for all sectors of our deafblind population including the delivery of educational services to our deafblind children.
After the closure of the special deafblind unit at Homai Vision Education Centre (HVEC), in 1991, there is no specialist centre for the education of these children in New Zealand, although their needs have been raised in many forums.  The Special Education 2000 Initiative has provided quite generous targeted funding for children who have severe disabilities.  However, there are no specialist deafblind educators who can even give advice to classroom teachers.  It is heartening to know that there will be a specialist deafblind facility to be built at HVEC when the centre will be rebuilt later this year.  The challenge is how we deliver specialist services to all children who are deafblind throughout New Zealand.

This brings us to two important issues.  One being the existence of a specialist centre(s) for deafblind services and the other, the provision of staff whom are trained in the deafblind condition.

The former presents us with a special dilemma.  The whole thrust of social service policy in New Zealand has been to ensure that people with disabilities are placed in their communities and that the services to them should be as close to their domicile as possible.  However, this principle, while being very sound, poses special problems for us in New Zealand.  Potential clients are spread out over a considerable area.  Delivery to areas away from the main centres becomes very costly and time consuming.  

This has helped to create an inequitable service delivery and isolation for many deafblind people, not only from the service but also from people like themselves.  Service providers struggle to cope with high caseloads finding it impossible to cater for local demand, let alone travel for several hours to a distant client.  A case could be made to have service delivery providers scattered throughout the population.

However, this may lead to the expertise and professionalism needed for the special support required by people who are deafblind to vanish.  Specialist centres provide a focus for the exchange of ideas, information sharing and dissemination and centres of excellence.  There are perhaps only two or three centres in New Zealand with big enough populations of deafblind clients to support such centres.  In this highly specialised service with few users it is crucial that the policy must ensure the access to services of high quality for all regardless of where they live.

The second issue raised above is the provision of specialist staff to deliver the required services.  In New Zealand we have only one tertiary qualification available to people whom work with deafblind people, a low-level unit on our New Zealand Qualifications Framework.  To get specialist training we either have to import tutors or send staff overseas, an expensive exercise whichever way it is accomplished.  There is also a need for continuous, professional development.

The growing use of modern communications technology is possibly one method of overcoming the professional isolation and expense of keeping up with developments in the deafblind profession.  At the moment such opportunities limited to accessing information put on Internet sites and through organised networks, such as those provided by Deafblind International (DbI), and personal networks.

Finally I want to examine the actual mechanism for the delivery of services to our deafblind population.  As stated earlier, in New Zealand, disability comes under vote health.  It is not surprising therefore to see our service delivery mechanism tend towards that of the health model especially as many of our disability providers are employing ex-health managers to administer services.  This mechanism essentially recognises the needs and matches existing resources to satisfy them.  The needs are seen as isolated units that can be dealt with separately.  A service co-ordinator or case manager ensures that the appropriate services are provided and that the goals are achieved.

Now while we may applaud this mechanism as a very efficient way to deliver services, let us examine what it could mean for a person who is deafblind.  An independent assessor (not necessarily skilled in deafblindness) visits the deafblind client, assumes that the person fully understands what they are saying, and judges that the person needs hearing aids, O&M and TDL.  They give a report to the service co-ordinator (not necessarily skilled in deafblindness), who effects the provision of service for each of those needs by the Audiologist, O&M Instructor and TDL Instructor (each not necessarily skilled in deafblindness).

Each reports to have provided the service to a client who is less than co-operative.  The assessor revisits the client in a few months and reports hearing aids in the drawer, and the person still reluctant to move around their community and barely able to look after their own needs.  What has been missed?  Has the deafness and blindness of the client been compartmentalised?  Has the client fully understood they have been told.  Have the needs of the deafblind person been viewed in a holistic sense? . Finally has the client trusted those who have delivered the service?

What is the role of the service provider for people who are deafblind?  Time and again we hear that such workers have to be more than just purveyors of services.  In a keynote speech to the XIIth DbI World conference in Portugal Marjaana Sousalami, the outgoing President of DbI stated that people working with people who are deafblind must develop "a professional code for working with them but also at the same time participate fully in activities done with them"

I have raised a number of issues concerning the development of service provision to deafblind people in New Zealand.  I am sure that our panellists will have interesting comment on these issues.

I thank you for your attention.
Australian Deafblindness Conference - April 2000

Cloan Makgill	09/05/00	Page 1 of 6