The 2001 Disability Survey found slightly more than half of disabled New Zealanders (an estimated 432,100) require access to some form of disability support. Of these:

• about 110,700 people received or needed daily help with tasks such as preparing meals, shopping, housework, bathing or dressing (including 22,600 people in residential facilities)
• about 321,400 people used or needed an assistive device and/or help with heavier or more difficult household tasks (including 4,400 people in residential facilities).

Disability support services comprise a wide range of services with common goals of participation and independence. They include:

• home-based support, including personal care and home care
• long-term residential facilities
• transport support, such as vehicle modifications or taxi services or subsidies
• housing support, such as housing modifications
• equipment support, such as wheelchairs, hearing aids, Braille machines
• communication support, such as NZSL interpreters and communication equipment
• carer support, such as respite care
• (re)habilitation training for social, educational and vocational settings
• financial support, such as the disability allowance, aimed at meeting specific costs of disability but not including general income support.

Adequate and appropriate provision of support services can complement the social and environmental changes discussed in the first two chapters of this report to enable the full participation of disabled people in the economic and social lives of their communities.

Without the provision of support services some disabled people lack the opportunities to reach their potential. These are opportunity losses to the individuals, but they also cost the whole of our society. Moreover, there are major inefficiencies and costs to government and society through not adequately providing support services; these can include extra income support and healthcare requirements.

…Two years ago my electric wheelchair had its seat changed. The new seat is very uncomfortable for me. My occupational therapist has written to our service provider about it, but I’ve been waiting for it to be fixed for over two years.

It’s an added insult when we get regular letters from that provider inviting us to contact a named person if we want to talk about ongoing issues; you phone repeatedly but he is never available and never responds to messages you leave.

My OT is concerned that I have to use a strap and physically lift my legs up onto my chairs or scooters. She can see this is aggravating my shoulders. She wants me to try powered leg lifters.

I have waited two years for an assessment to see if I could use them, let alone be on a waiting list to have them fitted. I try hard to get the help I need to be independent but they just say it’s a shortage of therapists and you have to wait your turn.

I think that by the time that happens you’re going to be much worse off and need more care and equipment. It is not good money sense to me.
Jean, Life is for Living, to be published at www.odi.govt.nz

Investing in sensible support systems

Objective 7: Create long-term support systems centred on the individual

Indicator 7: Perception of people accessing disability support services of how simple to access, flexible and fair the system is.

If disabled people are to have the opportunities that others expect in their life they need a similar level of control over their lives. For this to happen, many disabled people need support and they need the systems for providing the support to be centred on meeting individual needs. Improvements will be evident when people find the system makes more sense for them and feels simpler and fairer to access.

The themes of the Disability Strategy and other messages from the sector have been translated into key principles, to guide disability support services.These principles are:

• the administration of support services should concentrate on long-term, whole-of-life needs and outcomes, and on the participatory roles of disabled people within their community
• the provision of supports by central and local government should use and build upon supports occurring naturally within the family and local environment
• funding systems should be centred on disabled people and their families, not the provider, allowing for stable and lasting support for active community living
• funding should be applied at the individual level in an equitable manner
• rules governing the allocation of funding and resources should be consistent in their approach and application, and flexible enough to address individual circumstance
• systems for providing supports should be simple to understand, straightforward to access and easy to interact with throughout the length of engagement
• disabled people and their families should be appropriately supported and empowered to make decisions for themselves, and to exercise choice, control and responsibility over these choices
• disabled people and their families should be supported and encouraged to advocate for themselves or, if they choose, have access to quality advocacy services
• innovation and forward thinking should be celebrated. Overall quality of life should be a measure of success.

…We are all on a learning journey… to get the right equipment for the boys.

We need to have standing frames, wheelchairs with full headrests, boots, and splints; all customised for them. It’s a matter of trial and error and I have to take a lead role in getting people to modify the equipment until it works well for Sam and Callum. I go onto the internet and see what is available overseas and try to get it made here. We need people modifying equipment to step out of the ordinary and be creative as the boys’ needs are pushing boundaries…

We have carers for the boys. Each boy gets eight or nine hours care a week.

It has been a struggle to get suitable carers. There is lifting involved, and a need to understand some medical procedures like using tube feeding and administering oxygen. We need to know the boys are safe with the carers. We have been given carers with bad backs, some who are very young, in their first job and with no experience of severe needs. Sam has had bones broken by carers who were not careful with him. In the end I went out and found a great carer for Callum, and persuaded our service provider to employ her. She is a woman with a family of her own who Callum adores.

… We have our own house modified for the boys. We need things like wheelchairs, hospital beds, hoists, oxygen machine, feed pumps. We applied to get a modified van from Lotto and, believe it or not, we got the hoist but not the van. Our family helped us purchase the van and we are paying back a loan to them, but the van lets us get out and about as a family…

It is surprising in this world where we need to apply for funding and benefits how significant it is that the medical profession can put a name to a condition.

We live in a “compartmentalise and tick the box” society and when you don’t fit neatly you are difficult. Another example is our request for respite care. When we applied for high needs respite care allowance we were told it was $2,500 per child, but no, it’s a per family allowance, there is no additional money for a second child with an impairment. There is no respite care in Northland. When we realised that we needed a break away from the boys there just is nowhere here they could be placed. Options suggested to us included Sam being placed in a rest home. How could you leave a six-year-old with rest home staff who aren’t trained to deal with a young boy with his specific needs? It was suggested we could pack the boys in the van and drive the three hours to Auckland and place the boys at Wilson Centre Family Unit for a night off then drive back home to Whangarei the next day!

I took the initiative and we have found a way to use our $2,500 respite care allowance that works for us. Because of the need to rely on specialised equipment in our home it is practical that a carer comes to our home and we have some overnight time away…

… What would be wonderful on this journey of discovery would be a “one-stop-shop” care provider instead of having to work through a large number of service providers, always having to explain or justify your situation and explain why offered solutions are not practical. One person or organisation that you can establish an ongoing relationship with would be great. Currently we have dealings with 14 different organisations.

Sam and Callum, Life is for Living, to be published at www.odi.govt.nz

Latest trends and data

The current systems for funding and providing services are complex. Funding for support services comes from 10 different Government Votes and the ACC account, as well as from charity, proceeds from gambling and volunteer services. Each of these funding channels has its own goals, priorities, mechanisms and logic around the purpose of funding support.

During the 2004-2005 year the Office for Disability Issues connected with key stakeholders in the disability sector, examined findings from government consultation exercises and reviews of service provision and used data from government agencies to construct a comprehensive picture of disability support services in New Zealand. The Office also sought to reaffirm and elaborate the disability sector’s vision for the future delivery of these services, as signalled in the Disability Strategy.

The Office found many issues identified in a 2001 stocktake of support services remain unresolved. This includes gaps, overlaps and inconsistencies in service provision. While there is evidence of minor improvements there is clear consensus amongst the disability community that the current framework for providing disability support services is still unable to support the whole-of-life outcomes disabled people aspire to. The likely reasons include that:

• control rests disproportionately with the delivery system and those who administer it rather than with disabled people and their families
• there is no common logic for providing supports across different agencies, resulting in diverse delivery mechanisms, inconsistent entitlements, an associated inability to transfer support across different settings, life stages or regions, and inequities in terms of the level of support available to different individuals.

My quest for a wheelchair resembles a nightmare. My first request was declined although I was falling up to five times a week and hurting myself. When an occupational therapist came she completed the assessment form “in the right language” and I’ve been assessed as urgent. I’ve been on the urgent list for six months now. I have politely tried to get myself a wheelchair as I am worried about my increasing fall and injury rate, but I am told I’m on the urgent list. Is there a list above urgent, and what hope is there for those on the non-urgent list? While I was at QE Health I saw someone in a different area get a wheelchair within a week. Does where you live influence when you get a wheelchair?

…I will soon need to have assistance with showering and it is important to me that

I have a male carer. My service provider has indicated they will be unlikely to provide a male carer. What is it with our society that we value carers so lowly on the pay scale when they offer practical assistance and companionship, laughs, etc for those they work with? For some of the elderly I know their carer is the most constant visitor, the “light in the day” and the person who watches out for them.

I need home physiotherapy. I have heard that my service provider is considering training carers to deliver home physiotherapy… I risk pain, and further injury that could result in the loss of my remaining mobility. My need is for a trained physiotherapist who can make ongoing and constant assessment of my situation – not someone quickly trained in a few techniques.

Max, Life is for Living, to be published at www.odi.govt.nz

Activity to improve the provision of disability support services

Not surprisingly, given the number of agencies with responsibilities for funding disability support services, there is a wide range of activities that relate to this area. We report on some of these in the next chapter (as part of specific areas of life such as education or employment).

Budget 2005 allocated an increase of $18.7 million for home-based support services for older people, funded by district health boards, and younger disabled people, funded by the Ministry of Health (Disability Services Directorate). An additional $71 million was provided to district health boards for residential care for older people, and $93 million was provided to cover changes to asset test thresholds exempting thousands of older New Zealanders from paying base fees.

An extra $59 million was provided in 2005/06 for residential disability support services funded by the Ministry of Health (Disability Services Directorate) to cover demographic and inflation adjustments. This has been allocated to a variety of services and initiatives, including the de-institutionalisation of Kimberley Centre residents, younger people receiving residential care, and to help improve needs assessment and service co-ordination services.

In November 2004, the Ministry of Health reported on the findings of the Quality and Safety Project: Improving the Care and Support for Older People and Disabled People. The project provided recommendations to government on policy and purchase frameworks and the service development required to ensure safe, quality residential and community disability support services for people of all ages. The project looked specifically at workforce issues and how these may impact on the ability to deliver safe and quality services to clients. Consultation, a literature review and workforce and service user surveys were completed. The surveys are now available on www.moh.govt.nz

The Ministry of Health has a number of policy, evaluation and service development projects related to the provision of disability support services. In the 2004-2005 year this work included:

• a comprehensive national consultation process to inform the development of an environmental support services framework
• initial work to investigate and address boundary issues across the health and disability support sectors
• evaluation of befriending services for older people and of ageing in place initiatives
• contracting three organisations to trial ways to improve collaboration and co-operation between agencies that provide needs assessment and service co-ordination.

These trials are part of an interagency project led by the Ministry of Health. Advice to government will be provided by 31 December 2005.

The Department of Child, Youth and Family Services and the Ministry of Health have started a review of their memorandum of understanding. They have started to develop staff guidelines on interagency collaboration and training, including two regional workshops to clarify operational policy and encourage greater collaboration between the health and child protection sectors.

The Office for Disability Issues is leading a cross-sector review of long-term disability support services. The first phase has focused on identifying the issues with existing support services. It has also developed a picture of what a system that was working well would look like and what the key components might be to achieve this.

Activity to improve support services for people with an intellectual disability is outlined in chapter five in the last section titled: Progress for New Zealanders with an intellectual disability.

Gaps and opportunities to improve disability support services.

An undervalued and casualised support workforce will make any improvement in the policy and funding of disability support services difficult to implement. Turning this situation around requires more than simply increasing funding for “more of the same”. The workforce needs to be skilled and empowered to do a different and better job consistent with the Disability Strategy.

We can get a carer for Darren but we cannot get a carer for Sam. People, including our wider family, are daunted by the responsibility of caring for a boy who can stop breathing and need oxygen. The shortage of trained carers able to deal with severely impaired or unwell young people has to be related to the pay rate. The carers get $64 for 24 hours of care. With shared care they get $40 for a 24-hour day. This is a low pay rate for work with high responsibility.
Sarah and her great family, Life is for Living, to be published at www.odi.govt.nz

Separate sectors have projects under way that address their particular interests, such as initiatives arising out of the Ministry of Health’s quality and safety project, which includes a new position of disability workforce development manager.

However, workforce issues would perhaps be better addressed as a larger, cross-government exercise. It would then be possible to consider training and more attractive career pathways across a wider field. The Health Workforce Advisory Committee has been considering how best to progress this work, their reports are available at www.hwac.govt.nz

I am a community support worker, my role is to support disabled people as they reintegrate into the community. I work with someone as they extend their opportunities and capacity to be out there, participating in the community. I might accompany them on public transport, into town or to the gym as they are meeting and interacting with people. For example I’ve had one client I’ve been with for about five years. He has some anger issues so my role is to be with him as he is out and about and make sure he is behaving within “society norms”. We’ve set some parameters and mostly now it’s just a matter of drawing attention to his behaviour by asking if he thinks it’s appropriate and he modifies it appropriately himself. He is relearning how to behave in our society so he can get a job…

There is a bit of a parallel with my own journey, and this allows me to see where my clients’ frustrations are coming from. However, everyone is different and everyone has their own experiences. I know firsthand how annoying, frustrating, demeaning and inappropriate it is for someone to say “I know how you’re feeling”. You don’t necessarily know and it’s better to say “I can try and understand where you are coming from”.

Kent, Life is for Living, to be published at www.odi.govt.nz