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In the following article Tegan describes what it’s like living away from her Tauranga family, how her university studies have been exciting if unpredictable and the importance of designing a long-term plan. ‘It’s a matter of being able to adapt and re-adjust,’ she says of coping with an often-changing cast of carers. Tegan’s story reflects the delicate balance of independence and interdependence in the life of a person with a disability.

What I have tried to do in one step may seem a bit ambitious to some people, but I had always planned to one day pursue further study and then a career.

When I finished my schooling at Katikati College last year I decided to study full-time at Waikato University where I planned to do a Bachelor of Social Science. This would go towards my qualifying to practice as a youth counselor, which has long been my focus. Just like other young adults who leave the sheltering wings of their parents, my plans were to leave home to study and then to follow my career as long as my health permitted.

The path I have followed this year to realise the first stage of these plans has not been straight or smooth, but like so many journeys it has been one of self-discovery, learning and challenges. One of the biggest challenges facing my family and I when finding me a suitable place to live and getting me the support that I need has been the funding. This is always a hurdle for anyone living with a disability who needs some support to help them achieve a level of ‘normalcy’ in their lives, whether they are moving out of home, taking up a career of following some other goal.

The move to Hamilton was to an extent a leap of faith on my part and that of my family, because we realised that for the first time I would be relying on other people for all the big and little things that I need assistance with on a daily basis. It was to be a test of whether the procedures we put in place around my care, transport and study were to work. But things have run smoothly and I have spent a successful and enjoyable year living by myself (with a carer at all times) in a rented flat.

My university study has started out amazingly well. I have reached many of my goals regarding my marks. I have also been able to try different papers to see which ones I enjoyed or didn’t. Some of the ones I haven’t enjoyed, such as philosophy and psychology, have been a surprise but it is always best to find out at the start so changes can be made if necessary. Now I have just completed my first year exams, the end point of a study year that has been interesting – and exciting because I am finally pursuing my goal in a serious way.

This year’s journey to independence would probably not have been possible without great support and persistent campaigning of staff from CCS offices in the Bay of Plenty and Waikato, together with the generosity of BayTrust who granted me a scholarship that has helped me on my way.

I also could not have done it without the support, care and patience of my family who have been my pillar of emotional and physical comfort and care leading up to and during this transition. I have also been helped this year by the Waikato University Disability Support Services team, which has been great for helping me meet and get to know the other people here.

I now have four lovely ladies who act as my carers; they share the week between them. Some choose to work nights and others during the day. At the moment I am in the process of finding a replacement for my fifth carer who has moved on to other work.

Changing staff as some come and some go has become a fact of life, because it is unavoidable that people’s circumstances change and so on. For me, it is a matter of being able to adapt and re-adjust. I am very fortunate though, as my other wonderful carers have been willing to step into the breach when needed.

The most important thing that I have realized during this year of working with these ladies is that having a connection and friendship has made a significant impact on my ability to cope and adjust to the challenges and changes that I have experienced.

I have gained so much from moving away from home in the Bay of Plenty to come and live and study in Hamilton. It has given me the motivation to learn how to manage my life, my activities and my time, as well as opportunities to meet new people, try new things and ‘experience life in the big city’ as a resident rather than a visitor. By no longer living with my family I have become more independent in my thinking because I can choose what I want to do with my weekends and free time, rather than fitting in with other family activities.

Although my leaving home has been a big change in itself for me, it has also given my parents the time to pursue their own interests as well as give more support to my younger sister as she progresses through college and starts to look to her future too.

It has meant that while my family still supports me in various ways and visits or stays every so often, their activities or plans no longer need to hinge on what works for my wheelchair. This, in my view is a healthy progression for my family because my parents now can look toward their own future, as well as that of my sister and myself.

I would recommend this option to any family or young adult with the interest and attitude to go out and explore the world and the options it holds. Although it wasn’t exactly easy to get where I am, it won’t get any easier if those people who do want to do something like what I’ve done, don’t go for the outcomes they want.

The term Muscular Dystrophy (MD) actually describes more than 30 genetic diseases characterized by;

Take 3 people: one born with a disability, one who is disabled as a result of an illness and one disabled as a result of an accident. Which of these gets the most financial support from the Government? In the article below Melanie Trevethick, who has MS, takes action on the inequity between MoH and ACC funding.

Most of you will be aware that New Zealand has two streams of health funding, each governed by different entities. ACC is a comprehensive, no-fault, Government subsidized insurance scheme for those injured through an accident, providing an extensive list of entitlements funded from a yearly budget of between $5 to $7 billion dollars. The Ministry of Health is responsible for those of us who develop an illness; with or without ongoing disability. While both deal with New Zealanders with similar levels of need, by comparison the limited and tightly written eligibility criteria provided by the Ministry of Health severely disadvantages those of us with illnesses.

Incensed by such inequalities, in April 2003 I lodged a claim with the Human Rights Commission claiming discrimination by the Ministry of Health under the prohibited grounds of Disability. The claim is currently with the HRC Review Tribunal awaiting their decision. It is the first of its type. The concept of ACC, (defining the group by the cause of their condition) is a unique international model, providing no precedent on which to base a judgment, either within New Zealand or internationally. Our aim is to create a precedent that will revolutionize how health funding is allocated in New Zealand.

This issue of disparity is of enormous relevance to every New Zealander regardless of age or current state of health. While many are aware of what ACC provides, few New Zealanders have any idea of the minimal support available through WINZ and the Ministry of Health until it is too late. We believe New Zealanders deserve better. It is hoped that by raising awareness of these inequities, public outcry will pressure Government into creating change.

To achieve this, I and a key group of people and companies have created the equity-for-illness trust. Our aim is to remove the disparities between ACC and Ministry of Health funding: creating a non-discriminatory, needs-focused health delivery, regardless of the cause. We urge you to become part of this campaign; to add your voice both as individuals and as organizations supporting those with illnesses and disabilities. Please log on to www.equity-for-illness.org.nz to send an email postcard stating our goals to Members of Parliament, and keep in touch with our progress. Together we will make a difference.

This article also appears in Parent-to- Parent’s newsletter. You can listen Edith Morris’s interview with Melanie on ‘Talking Up Disability” by going to www.catchword.co.nz/radio

EASY RIDER: Any group, any ability, any age, any time, anywhere (and wheelie friendly too!)

Hilary McLachlan has many years of experience in the bus/coach charter service. Each bus in her fleet has a lift so can easily accommodate mobility scooters and power chairs. Steps are extra low so anyone with reduced mobility can board the buses easily. Hilary (or Larry to friends) travels near and far and wide, even Queenstown to view the area where parts of ‘Lord of the Rings’ was filmed

Larry also has a Nissan Serena available for hire. It has seating for 4 plus driver and the left rear passenger seat acts as a chairlift. Wheelchairs can go in the back and it can even accommodate a scooter if ramps are available (and the back seat not used).

Her brochure boasts glowing testimonials including one from former Barrier Free Trust head, Alexia Pickering who says Larry’s service is ‘a great way to travel’. For more details, visit www.easyrider.co.nz or phone 07 829 8925, mobile: 027 273 6767 or email larry@easyrider.co.nz

CCS Auckland report a query from an out-of-town visitor whose TM vouchers were not accepted by a large Auckland taxi company. Vivian Naylor sought clarification from the Auckland Regional Transport Authority (ARTA) who responded as follows: TM vouchers from areas outside the Auckland region must be accepted by all taxi drivers. Some regions (and Waikato’s one) have a photo ID card and though that can’t be used in Auckland’s automated system, it is proof of eligibility. Again there are regional differences in colour of TM the vouchers, but, AGAIN, that shouldn’t be a barrier. The Auckland area discount, set by ARTA, is 50% to a maximum discount per trip of $30. There may be a different discount rate in the visitor’s home region.

Emergency building evacuation for wheelchair users: what the Twin Towers collapse can teach us

9/11/: John Abruzzo would never have escaped from the towering inferno that was the Twin Towers, but for the Evac+Chair. In the previous attack on the World Trade Centre (WTC) in 1993, John’s evacuation took all of 6 hours; on 9/11/2001 it took his untrained helpers 90 minutes to descend 69 floors, using the Evac+Chair. John, who is a C5-6 quadriplegic, and his group were out of harm’s way 10 minutes before the building collapsed.

These facts form part of an article aimed at showing how emergency evacuation from tall buildings for disabled people, particularly wheelchair users, is sadly flawed. In the New York tragedy, wheelchair users had been instructed to wait in ‘safe refuges’ usually stairwells to be carried to safety by firemen.

Following the 1993 attack on the WTC, initial preparedness had worn off and there’d been no specialised training in the use of the 125 Evac+Chairs purchased, no key to their locations and no evacuation plans or drills. One wheelchair user’s Evac+Chair was found under her desk; thanks to the good memory of a couple of secretaries, and, with its use, the woman was successfully evacuated.

Allan Armstrong, General Manager of the NZ distributors for Evac+Chair, is on a mission to have councils, fire authorities, hospitals, airports, schools, businesses, etc fulfil their legal and moral responsibility to comply with NZ statutes and regulations relating to emergency evacuation of people with limited mobility.

But Allan’s not solely driven by the profit motive. Formerly a forestry worker, Allan was working with a mate, Hone who suffered a serious accident leaving him with severe spinal injuries. A change in health policy meant spinal patients were encouraged the leave spinal units and live in the community. Allan and his wife had built a house that incorporated a granny flat for Allan’s parents. They never used it, but Hone did. ‘It was a U-turn in my life,’ says Allan, explaining that it was the first time he’d had experience of people with disabilities and the inadequacies and injustices in ‘the system’. His championing of the Evac-+Chair is part of his desire to redress this balance and promote the interests of disabled people.

Marketed as the only simple, safe and effective emergency descent system for mobility impaired people, you can find out more by phoning Allan on 0800 EVACUATE (0800 382 282), email him at info@evacchair.co.nz or go to www.evacchair.co.nz

My name is Kyliena Neil and I have been appointed the position of temporary Accounts Clerk while Rochelle Saunders is on maternity leave. I am currently a caregiver for people with disabilities with Community Living Trust, providing Shared Care during the week and Respite Care on the weekends.

I have a lot of previous experience in the administration and accounts field as I used to work for Capitol Cars and Basecorp Finance as a Credit Controller. I have a 6 year old son who is at school, so working during the school hours was a main priority when I applied for this position.

Gerri Pomeroy who’s working part-time, sharing the co-ordination of our Access Service with Kevin Churchill.

We welcome any comments about the articles in this edition of Outburst. You can phone (07 853 9761), fax (07 8539765) or email kwalsh@waikato.ccs.org.nz

The editor reserves the right to adjust submitted material. The views expressed in this newsletter are not necessarily those of CCS Waikato.

In January 2007 I was asked if I could care for Anne, a young lady with Muscular Dystrophy from Darwin, Australia who was visiting Hamilton to attend the 5 day International Foster Care Conference (IFCO).

The Conference agenda was to enrich and enhance the parents and children in their understanding and support in the fostering experience. Anne and her nephew were involved in the youth programme that was provided by IFCO.

I accompanied Anne to the Conference to help her be included in the programme’s exciting activities. We traveled to the Te Wananga o Aotearoa campus in Te Awamutu, where the international youth participated in a traditional Maori welcome (Powhiri) which they all embraced and appreciated. We also went Tenpin Bowling where Anne and other new international friends were the ‘winning team’ of the night. We also ventured out to Lake Karapiro and explored aspects of Maori culture such as Poi Dance, Taa Moko, Maori instruments, and Waka Ama.

The highlight of the 5 days for Anne was meeting and interacting with new friends from all over the world: Norway, Canada, America, Japan, England and Australia. I was very proud that New Zealand was able to hold such a wonderful conference. I must therefore commend CCS for their organisation and hard work to ensure that this very special young lady was catered for here in New Zealand. Her parents were very impressed with care CCS provided while staying here. A special thanks to Bell Martin who made the connection between myself and Anne’s parents smooth and enjoyable. This experience was a great learning curve for myself and I was able to understand and interact more intensely with this young lady from Australia. Good luck to you all in all that you aspire to achieve. Tammy Clayton

Living with a Disability: Disabled people and their families tell it like it is

477 disabled people and family members responded to the Family Commission’s ‘The Couch’, a new online survey seeking comment on issues facing NZ families.

The Couch asked people with a disability and those supporting them what support they received, what barriers they faced and what would make the most difference to their future family life.

It’s worth a read even if you hold the view that disabled people have been questioned to death but the need for disabled people and their supporters to repeat the ‘same old, same old’ is significant in itself.

· Family and friends gave the most support, followed by the health sector and community agencies

· Barriers identified included lack of accessible transport and venues, shortage of specialists, appropriate carers, home-help and respite care, insufficient esources in rural areas, social isolation and exclusion, inadequate funding for educational and medical needs and limited access to pastoral care/support.

· Families who supported a disabled family member found little time for socializing as a family or on their own, particularly difficult for sole parents

· Coping with transitional stages was an uncertain and concerning time i.e. starting school, transition out of school and into adulthood

· Having access to meaningful work and being a valued member of the community was commented on as was the provision of ‘well-organised, safe and active’ options for those unable to work

· Proper access to adequate environmental equipment and environmental support to overcome barriers was noted

· The financial burden of disability needed to be recognized, especially for those providing a family member’s 24/7 care

· A common theme was a request for greater community understanding of disability and its impact including of people with ‘invisible’ disabilities. Similarly, children needed to be supported to cope with being ‘different’.

· There were calls for a higher degree of professionalism in the sector, in particular better disability training of teachers and of more understanding of mental health in the justice system. Better overall support throughout school life was a must.

· Increased and improved respite care, carer support, after school care, holiday programmes and time out options was wanted

· Families also wanted the assurance that services would continue to be available, especially living options when primary caregivers were no longer able to provide the caring/support.

The Couch says that the information gleaned from the questionnaires will help the Families Commission to advocate for better policies and services for disabled people and their families.

are great for fostering a child’s balance, co-ordination and confidence but they can also be a potential hazard. The UK Chartered Society of Physiotherapy has 12 top tips to promote trampoline safety. Contact Kathy if you’d like a copy. Source: Without Limits

The Toy Library’s Nursery Trampoline plus bar is very popular with families for the reasons mentioned above. It’s also compact, fits into most cars and the bar is a confidence booster for learners. I was shocked when it was returned with the elastic holding the pad to the frame broken, shocked because a child might easily have been injured. I alerted the Toy Library Federation of NZ and contacted MTA, the supplier who had received no previous reports of this happening. In the end, Fountain City Saddlery fixed the problem, at a very good price, by using 2 rows of the black elastic. So the toy’s again available for loan with a written warning to check the elastic before and after use, to report any fraying, to limit the tramp to one child at a time and to restrict the tramp to children 30kgs or under.

Thank you to Lucy Matthews who recently donated some toys to the Library and the Gomez family who donated toys at the end of last year prior to their return to Mexico.

I’m delighted to have ex-toy library Mum, Martelle Christy back again to look after the Toy Library while I’m recovering from having my tonsils out.

are on order. A taster: a Lego Police Station set, Clown Dress Up, Water Play set, Pop ‘n Hop Game, Learning to Sequence cards, Pop Up Teddies….and much more.

The Pearson family with the gear that they carted in panniers .Chris and his Dad, Michael on the bicycle made for two. Chris found the Otago adventure ‘ fun’, enjoying stamping the passport at the trail’s regularly spaced boxes. A sore bottom, the rain and a puncture on the first day was more than made up for by the pink lamingtons at the Hyde Hotel and the fun of time-trialling, playing first past the post at each kilometre marker. Chris – who’s 14 – and his Dad tandem ride to and from Hillcrest High as well as into town for family coffees at the weekends.

For those of us who count nipping out to the local dairy for a paper (ok, an ice-cream) as weekly exercise, the Pearson family’s tally of outdoor pursuit induces amazement and not a little guilt.

Individually family members scout, row, orienteer and play tennis, netball, ski but as a family…… they cycle.

Well, since just before Christmas they do. Now the family has a tandem bike which Chris, 13 and his father, Michael co-ride. After giving the tandem bike a thorough testing in the Karangahape Gorge, the family set off on the 170km Otago bike trail that featured on Marcus Lush’s ‘Off the Rails’ programme, which follows the course of the old railway line running from Dunedin inland to Central Otago.

As the train to Middlemarch only runs weekends, the family – Michael, Anne and their three teenagers - had to get out at Pukerangi and spend the first day cycling on road to the start of the trail. According to Michael, the terrain made the first day a hard pedal but Chris loved it, thought it ‘a great lark’. Accustomed to sitting passively behind his father in a child’s seat, Chris learned to respond to his father’s call to ‘Boost now!’ and pedal hard up the hills and relax the effort on the downhill slopes.

After temperatures in the mid 20s, the second day dawned wet and cold, but less exertion was needed to cover the 3 days’ pedal up the graveled trail to the Ranfurly summit and the drop down to journey’s end at the Clyde dam. The weather improved as did the strength of Chris’s leg muscles, a big plus as people with Down Syndrome invariably have low muscle tone.

After Christmas the family followed up their South Island jaunt by participating in Hamilton’s major cycling event, REV 2007, all made possible by the bicycle made for two.

Pre-tandem bike, Michael and Anne had tried a number of ways to include Chris in the family’s cycling activities, firstly using a child’s seat, then a trailer bike. It was all a bit ‘make do’ so they were on the look-out for a better solution. Spotting a photo in the Hamilton Press of someone who’d purchased a tandem bike via the Halberg Trust, the family decided to make an application and get a few quotes. Though tandem bikes were unavailable in Hamilton, one bike shop had one on order. It proved to be a perfect fit: Chris was just the right size to reach the pedals. Discovering that an application to the Halberg Trust required a supporting letter, Michael approached Sport Waikato’s Dave McCalman (see below) who rushed it through to meet the deadline date. Three weeks later the family heard their application had been approved and 2 days later they had the bike which the 5 Cross Roads bike shop got direct from Auckland at a competitive price.

Tandem bikes comprise 2 different frames, a different size for the back and the front piece. But the Raleigh bike was just right; all the adjustments needed for Chris was for the seat post to be changed to one that went right down instead of one with a springy suspension. Michael attached the panniers needed to carry the gear needed for their South Island venture.

A tandem bike may not be ever family’s choice but for the Pearsons it works like a dream: ‘Even a year ago, we’d never have guessed Chris would do this well on a tandem.’ So who knows what’s possible in future, he adds.

As there’ve been a few changes to Halberg Trust funding, it may be worth summarising some of the most important criteria when making an application. For more details speak to Hoi or Melissa or Sport Waikato’s Dave McCalman, ph 07 838 2657.

The Trust funds costs over and above the costs for an able bodied child to participate in a sport, recreation or physical activity in an inclusive environment ‘that has a sustainable future’.

· Applicants can apply for funding for a product or equipment e.g. tandem bike, beach buggy, archery gear, mountain buggy or activity/skill development e.g. swimming lessons, gym classes, camps

· Applications, on behalf of the child with a disability, may come from caregivers, parents, teachers and other advocates, like a social worker

· The child must be aged between 8 and 16, except for swimming lessons where the minimum age is 5.

· 2 pieces of equipment is the maximum allowable during the age eligibility period.

· Applicants must contribute to the cost of an activity e.g. a bike for an able-bodied child might cost $300, so this is the minimum amount expected from the family of a disabled child.

· The maximum grant for lessons is $200. Applications for lessons must include a Physical Action Plan.

· The Activity Fund will pay for a maximum of one activity per 12 month period e.g. a set of swimming lessons. If applying again for activity funding in another 12 month period, the activity type must be different.

now has a website. Visit: www.catchword.co.nz/independence.html for heaps of info on the Independence Games, including registration forms. Louise Were says Edith Morris (our DA presenter and broadcaster - Talking up Disability) and Noel, her husband were instrumental is getting the website up and going.

Parafed Waikato has club chairs available to try most sports. Membership of Parafed Waikato is $30pa. Members can apply to the club for funding to attend or compete in an event, either national or international. See above phone numbers to contact Parafed Waikato for more details.

The season started in March. Practices are held Wednesdays, 6.30pm at St Peter’s School, near Cambridge. Source: Parafed Waikato newsletter

Is planning to hold league nights every second Monday, but are currently focusing on fitness, chair awareness and ball skills. Enquiries: contact coach, Peter Martin 07 829 5705 or Dave Klinkhamer ph 07 849 1030. Source: Parafed Waikato newsletter

Some of you may have caught the Oscar-nominated movie, Murderball, featuring Mark Zupan. Now you can read Mark’s autobiography described as ‘a gripping sporting memoir of one man’s story of his amazing recovery from a catastrophic accident to the heights of Olympic glory as a quad-rugby player. It’s in turn funny, romantic, angry and inspiring.’ If you’re interested in purchasing the book, email pwashbourn@gmail.com Or you can do what I do and go through a dead simple process at the town Library and get them to purchase it. Source: adapted from an item in the Parafed Waikato newsletter

There’s been an overwhelming response to the National Depression Campaign in which John Kirwan talks about his experience of depression. The ads resulted in a flood of calls to the dedicated helpline and had people talking publicly about their experiences. An average of two hundred calls a day flowed into the confidential 0800 111 757 depression support line, indicating the need for easy access to quality information about depression to those who need it, when they need it. One encouraging sign was the significant number of men who call the information line for help, making the gender balance of callers nearly even. Having John Kirwan speak about his experience of depression clearly has had an impact on men who would usually respond at a lower rate.

A new season of this popular series will air soon, with NZ celebrities dancing their socks off with proceeds going to community organisations. Here’s the line-up:

CCS has launched its unique collection of disability information on a new online library catalogue.

‘We are thrilled to be able to offer all New Zealanders the diverse disability information our library offers;’ says Viv Maidaborn, CCS’s CEO. ‘It’s a simple low-key database with great search tips, direct links to the CCS Information Service and resources can be ordered online’.

The library project was funded by Telecom’s Community Connection sponsorship programme which provides more than 1,000 voluntary welfare and charitable organisations with up to $5 million in support each year.

‘It is tremendous that CCS is able to make its great resources available to all of New Zealand,’ says Minister of Disability Issues Ruth Dyson. ‘This online library catalogue is not just for disabled people but employers, librarians, teachers and many others,’ she said.

1997 Nissan Pulsar, one owner, low mileage, in good condition. Owner is no longer able to drive a vehicle. Silver, 2 door, hand controls. Rego and WoF. Offers around $7000. Contact Olive on 07 828 9977.

· Teenadders - Offering support & assistance to ADD/ADHD teens & their families.

Source: Side by Side, a Christchurch based, parent-run service for families living with disabilities

For every complex problem, there is a solution which is simple, neat and wrong. H.L. Mencken

The repeal of the Disabled Persons Employment Promotion Act (DPEP) will result in people with an intellectual disability having equal rights in the workplace. Currently the Act allows some people to work for less than the minimum wage, without annual leave or sick leave and with no right to join a union. For 47 years the Act has given sheltered workshops a total exemption from paying people who are capable of work the minimum wage. IHC and other disability organisations believe the attitudes reflected in the Act are outdated, discriminatory and contravene the Human Rights Act and other international rules. Workshops will not be forced to close. MSD, Dept of Labour and VASS have been working over the past 5 years to ensure sheltered workshops transition to providing equal rights and minimum wage.

The bill, which has just had its third reading in the House, becomes law in November 2007.

IHC encourage, well, just about everyone to join their Lobby for Inclusive Schools. Contact trish.grant@ihc.org.nz for more information or support.

The views expressed in this newsletter are not necessarily those of CCS Waikato.

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