BIA: Sad

Judith and I have been told officially that we are likely to be expelled from the BIA

We are distraught to lose regular contact with people we so admire respect and love. You have become a big part of our lives over the past six years. To witness the blossom of confidence and improved quality of life for some over this time has been a great joy for us.

Fortunately we will be able to continue some of our friendships and to continue tramping with those that want.

Our hopes for the future;

• that good and caring staff like Menna and Diann will find a stable safe place
• that the truth can be disclosed to all members and sponsors without shame
• members are permitted meaningful sway over decisions that so affect their lives
• members expectations can be raised appropriate to the resources intended for them
• members have a place to be and call their own
• that the power of love eventually overwhelms the love of power

Judith and Don

BIA: conflicts of interest

For the year ending April 2014 the Nelson Brain Injury association received over $100,000 in funding from various sources which included $22,178 from the local Health Board. People, often with severe brain damage and receiving care from the Health Board participate in most of the member activities of the BIA.

The BIA has more than once demonstrated and acknowledged issues of governance. One of which is the harassment of a previous staff member by Russ Aiton (see BIA: Sacked the victim kept the bully below). It has a weak committee unable or unwilling to advocate forcefully on behalf of it's membership.

Many of the committee are unknown to the BIA membership and unaware of their concerns. Committee meetings have difficulty achieving a quorum. Joy Aiton is employed by the Health Board, is partner of Russ Aiton and is vice chair of the BIA. I suspect* that both attend committee meetings and have failed to declared any 'conflicts of interest' or to withdraw from participation even when the matters of bullying by Russ and the terminating of his victim's employment were considered. The BIA's contract with the health board contributes significantly to their income and I believe that their primary (only?) concern is continued funding.

I suspect that Joy Aiton has used her employer's funding either implicitly or explicitly to influence and protect Russ's continued employment in a position created for him but not advertised? Even if this is not the case, it is inappropriate that the circumstances to support this suspicion appear to exist and continue to do so.

* attempts to verify these suspicions have been rejected at every turn by the BIA.

More on off grid solar

I have considered the cheapest a system similar to ours might be purchased. Bear in mind that the best thing you can do first is to reduce your energy use. Most home systems would be use 5 or 6 kw inverters and around 3 kw of panels with a lot of storage maybe more than 6kw hours.

If you can reduce your use without reducing quality of life then this will have the biggest payback and allow you to survive off-grid for around $4000 invested using around 3kwhs of power per day. You need to do much of the work yourself and to know what you are doing. We will also purchase a 2 or 3 kw ($400+) generator before disconnecting finally although we have zero use of mains power at present.

The price of $4000 is made up as follows.

solar panels	1500 watt 24v	$1,500.00
MPPT chargcontroller	60amp 24v	$600.00
sinewave inverter	3kw 24v	$400.00
batteries x 6	200 ahr	$1,000.00
		$3,500.00
fuses		$40.00
panel mounting		$120.00
panel wiring		$50.00
panel junction		$50.00
battery leads		$50.00
metering	volts amps and kwh	$20.00
change over switch	20 amp	$50.00
		$3,880.00

You will find that purchases made from China save you heaps but you need to be confident at doing this. I use http://www.aliexpress.com/ and have not been stung badly as yet. You need to choose sellers with good feedback and preferably a brand name product at least for the bigger bits.

Where you live makes a huge difference. In Nelson we are very lucky. You need to be able to mount your panels facing north and the best solution might be to mount them at ground level if your property is large enough. If you bury a rear differential from a car or truck in the earth leaving one hub above ground it might allow you to turn your panels to follow the sun which can increase their efficiency around 30%.

Good luck if you follow this route and I will do my best to help if you contact me - pir8don

at gmail dot com.

Notes on off-grid living on the cheap

Over the past more than 20 years we have slowly built a solar system for our home. We started with about 1 thousand watts of panels when the average cost per watt was $6. Now the cost has fallen to around $1.20. We have increased our panels to around 1400 watts and installed a 3kw sine wave inverter. Throughout our past we have maintained a monitor of our power use and reduced our consumption to around 3 killowatt hours per day from 13 before we started paying attention. There are two of us (adults) living in the house and we have undertaken a number of initiatives to achieve our present modest consumption.

Our storage:

We have 6 of 200amp hour 12volt batteries and 80 of 7amp hour 12volt batteries making for a total storage of( (80 x 7) =560 )+ ((6 x 200) = 1200) = 1760 amp hours of storage at 12 volts which calculates to a nominal 21.12 thousand watt hours . All batteries are sealed lead acid. Because our system runs at 24 volts and batteries are wired in series we have (half of 1760) 880 amp hours at 24volts. Notice that both 12volt and 24volt calculate to the same number of watt hours storage which makes watt hours (whr or kwhr) the most useful method of comparing storage.

Theoretically this means we can use 21 kwhr of energy without charging but this is not the reality and its more likely that we can use around 10kwhr before needing to recharge the batteries. Because we use around 3kwhrs of energy each day we can stand around three days without charge. This length of time is slightly extended by dark days giving some charge from light without sun.

Our load:

Energy use is best considered in two ways. Firstly as a peak then as an amount per day or week.

Peak appliances are oven at 1.8kw, vaccuum cleaner at 1.8kw, lawn mower at 1.5kw, coffee machine at 1.5kw, induction cooker at 1.5 kw per ring, hair dryer at 1.4 kw, microwave at 1.4kw, small convection oven at 0.8kw and toaster at 0.7kw. Lesser loads are typically; fridge 0.170kw, 48” led television 0.04kw (run in energy saving mode), micro computers 0.05kw. Various other bits and pieces along with led lighting add up so in our situation we use between 200 and 300 watts when awake and around 50 watts when asleep. With a 3kw inverter limiting our peak load we have learnt to only use one appliance at a time. In practice this means judiciously shuffling the use of appliances when cooking. Breakfast and dinner are the times of heaviest use and only in mid summer is storage helped by the sun at breakfast and dinner times. It is practical to use two appliances together if they are both limited in their energy use. So two induction rings may be run together if one or both are set to simmer. Usually though its one appliance coupled with the background use. Our fridge is very efficient and converted to use an electronic thermostat using around 700whrs per day leaving 2.3kwhrs to complete our daily use.

Making breakfast involves first placing a porridge pot on to boil and later turning on the coffee machine while the porridge is simmering. You can usually hear when an appliance is struggling.

Our inverter:

We have a 24volt 3kw pure sine wave chineese inverter purchased second hand for around NZ$400. The most recent inverters are generally much better than those of a few years back that often broke down. We keep a 1.5kw inverter as a backup.

Our solar chargers:

We use two in parallel because we purchased one before the other but both are the same model. They are Tracer MPPT (maximum peak power tracking) both 40 amp giving us the potential to feed 80amps total to the batteries at 24 volts. This allows us up to about 2kw of solar so we can add more another 500watts or so if we feel the need and have the money along with roof space. Note that the batteries when charging at their maximum can be around 29 volts so the 80 amps limit allows 2.3 kw of charging.

Some of the things we have done:

• We moved from a normal electic range to a modern electic oven using around 1.8kw when the thermostat is active. This results in a real use averaging around 1kw per hour and on sunny days we can usually afford 2 hours of use.
• We use a small convection oven using 800 watts as our most common cooker.
• We moved from a radiant hob to a induction hob and most recently to a mixed gas and induction hob with two induction and two lpg gas. This greatly increases our options as our batteries drain and makes survival off grid likely during the worst of winter so long as we apply strict limits to our load as dark days accumulate.
• We sold our previous LED television (using around 250 watts) as the new ones have become much more energy efficient. We used a portable watt meter to measure the power use before we made our purchase. We usually run the display for a maximum of 3 hour per day.
• When buying appliances it is best to measure their power before purchase. We did have a full induction hob but found it was using nearly 500 watts even when off so have made the change to another brand which uses almost no energy when off.
• We both have computers but use a touch pad as often as possible in prefence. The touch pad can run an efficient HDMI LED display and use an external keyboard and mouse(bluetooth).
• We use an android TV stick to play movies or recorded TV shows on our LED television. Also use the stick for playing music. We have a full digital 5.1 amplifier that is very energy efficient.
• All lighting is LED. We started out using three 150watt light bulbs in our living area more than 20 years ago then moved to compact flourescents and lately to LED. Our energy use for the same area is now about 38 watts. We are inclinded to use a number of smaller lights in place of one big one in our kitchen, bedroom and living areas where feasible.
• Careful power monitoring has become a feature of our living but is no real hassle as the rewards are so great.
• We have been off grid for more than 3 months now but retain the mains power as a backup. Our power bills are around NZ$15 per month for the supply charges. With the addition of the LPG gas rings we should be able to terminate the mains supply completely and are considering this at present.

Why:

Firstly to reduce our energy foot print. Secondly to be self sufficient. We use wood for our heating and this also supplies our hot water through a wet back. We have fires around 8 months a year and are able to run the hot water heater from solar on sunny days for an hour or so. This is enough for our showers and washing.   

Quality of life for people with brain injuries - fire culture

Where a person experiences brain injury after maturity they have often formed some expectations of life and its quality. A key component of this is their social or peer group - people with whom they associate by mutual choice. After a brain injury there often is a radical reduction in quality of life of which a principal feature is the loss of their social group for a variety of reasons; sometimes they have suffered another injury as well which places limitations on their activities or they find that they just no longer fit with the group that they did prior to brain injury. Frequently the only people involved in their lives are family or paid professionals; those on whom a real or perceived obligation is recognised. These associations are not a substitute for the fee associations of their pre-injury life nor are they intended to be.

So the question arises as to what may contribute most to quality of life, what can replace previous free associations? Others who share the experience of brain injury offer the potential for free associations that can have a marked impact on quality of life but they are subject to a number of limitations. People participating in a brain injury group are extremely disparate in many respects; the extent and nature of injury, their prior life experiences and choices among many other factors. If the group is sufficiently diverse then the possibility of encountering a kindred spirit is raised but other factors can mitigate against the success of these encounters in making a positive contribution to quality of life.

One such factor is time; Many people are gathered for only an hour or two at a time. For some this time even if unstructured is the cause of flooding. In groups a longer period of unstructured association is necessary to explore the opportunities for friendship that other members of the group may afford. This is why it is extremely important for those facilitating a group to plan activities of longer duration so that friendships can germinate. Once these friendships become established the need of longer periods together is not so paramount but remains an integral part of the delicate process by which brain injured people can experience greater quality of life.

I have been privileged to be among many gatherings of people around an outdoor fire. Usually in the evening but also in the day. The fire usually begins as a larger blaze forcing people (usually around 30) away for the fire into a large spread of people on the rim of a circle. During this stage of the fire conversions and interactions are mainly between adjacent people in the circle and there is no one group conversation although they can briefly arise.

While this time in the culture is of great worth in generating or reinforcing acquaintances and friendships, the greatest quality for me is achieved as time continues and the fire burns down to mostly red coals. Then the group comes closer to the fire and gradually reduces to a single, sporadic or even no conversation. Onlookers might view this as boring but it can be a time of great peace and communion for the people who have remained (usually 10 or so).

I have also found this fire culture in other groups of people in circumstances not involving fires. It has a recharging effect not able to be adequately described by me but of tremendous power. My hope that this time of calm peace can be available to those whose lives have been impacted by brain injury. It is not always be achieved nor is it something that can be artificially generated. Un-pressured time is the primary ingredient.

BIA: Sacked the victim - kept the bully

I regret that the letter below given to Fiona did nothing to improve things within the BIA Nelson culture.

Once Mena had left the BIA another staff member was sought and Russ Aiton employed without consultation with group members. At first he worked with our Tuesday groups and went also to the group in Blenhiem as facilitator there. After a time it became obvious that this was not a vocation of benefit to all. A new position was created for Russ that including finances and funding, a position never advertised. Previously these activities had been undertaken by Fiona and Mena who were the only two staff. Mena was facilitator for our Tuesday group.

When it was announced that yet another staff member would be employed to work with our group, members asked to have some involvement in the selection process. Three candidates met with members of our Tuesday Nelson group and we all agreed that one of these was the person we most wanted to be our facilitator. This was the first time to my knowledge that the group had any influence in the employment of staff.

Diann was then employed to take over the activities previously undertaken by Russ. Russ was apparently most unhappy at Diann's employment and embarked on a program of harassing and bullying her. The tension within the staff was very apparent to members. Messages given to either Russ or Diann and concerning both were not conveyed to the other. Apparently there was no communication between them. Despite letters to the committee from Diann describing her experience, no effective action was taken to remedy the situation until Diann was "made redundant" some two years after her initial employment. Diann was well liked by all almost all members of the BIA and was clearly a caring and genuine person in the mould of Mena who had previously given her all to the group.

After I had given the letter below to Fiona in March nearly two months followed with no reply and my concerns at the situation with governance issues escalated. I wrote numerous emails and Judith and I met with Fiona and Brett Wall who was then the chair of the BIA committee. Brett agreed to make financial records and funding agreements available to us but later reneged. At the meeting Fiona disclosed that no formal protocol for dealing with sexual harassment or abuse had been implemented.

Finally a reply was sent by Joy Aiton (vice chair and partner of Russ) on behalf of the Committee to me advising that they would not be addressing the concerns raised.

The only response by BIA to these concerns has been a series of formal surveys of the membership with some of these and other concerns obliquely addressed in the monthly newsletter and membership forms. All are very controlling in both their content and absences of serious issues addressed. Where previously matters had been discussed to some extent by the group and aided in the generation of a supportive culture no such activity has been subsequently encouraged.

Financial records of the association provided to meet the requirements of the Charities Act, disclosed for the financial year ending 31 March 2013 that a sum of $1666 was paid under the heading Massey Training Expences. Fiona Price is and was undertaking a degree course there. Attempts to gain details of these and travel expenses of $4742 for the same year have been to no avail. Total income was $87,987 for that period.

Whereas two staff were previously employed with one as facilitator for the weekly groups, two are still employed but neither identified as group facilitator and a call for volunteers has been made. Effectively the position of group facilitator was hijacked by Russ's continued employment in a new position and failure to replace Diann. A student volunteer has been taking group sessions during a 6 month placement. Again a group of vulnerable people have no influence over the people who work with them, are subjected to the instability of volunteers and of value only as a means to ensure the ongoing employment of staff for whom group members have the lowest of priorities.

These and many other serious issues remain. All derive from a lack of effective or strong governance making the organisation vulnerable to exploitation of which the ongoing employment of Russ is an example.

I believe that our group must be accountable to its membership and provide the 'vigilant nurture ' necessary for some of the most vulnerable people in society. The failures of this organisation are shameful and a blemish on Nelsons support community.

Overnight tramp to Lake Head hut- Lake Rotoiti

Five of us set out Sunday morning of 21st September with snow all round the lake:

Nicky has difficulties with one side of her body and so needed occasional support from Judith although her confidence increased as our tramp proceeded.  Caroline is an accomplished tramper now and Adrian has years of tramping experience so is able to be of great benefit to all.  I (Don) along with Ourbird made up the remaining members of our party. We all found the warm hut with a fire most welcome after four hours of strenuous activity.

After a comfortable night we rose to snow making its way down the valley toward us.

We were finally overtaken by the snow as we neared the road end back at Kerr Bay. I had started out assisting Nicky but had to opt out when it became so unpleasant that Ourbird had to go in his tramping cage. When Adrian took over we decided that we were playing pass-the-parcel. 

It was a great trip for all of us and especially Nicky for whom more tramping is now a practical option. I always start out our trips wondering how so disparate a group of people can possibly get on together but amazed by the feeling among us at the end of each trip.

BIA response to sexual abuse

Below is a letter writen by Judith and I. It was handed to Fiona Price who is employed as Liason Officer for the Nelson Brain Injury association (BIA) on 14th March this year. Mena Williams was then also employed by the BIA.  Please excuse the spelling - not my strong point.

Brain Injury Group

We (Judith and I) began attending the group near its inception but left after a few months, in my mistaken belief that my difficulties were not sufficiently severe.

About five years ago we rejoined the group in recognition of our need for alternate social interaction. We attended almost every Tuesday session along with the altenate “Honest Lawyer” Fridays. It would be fair to say that we found the Tuesday group a bit dispirrited and endeavored to lighten the atmosphere.

What we didn't know was that a sexual predator was menacing some female members of the group. It took many months for this to be revealed to us. As we began to learn of the incidents and victims of this abuse so too matters came to a head. I 'had it out' with the predator and told him he must no longer attend group activities. The next due activity was a Friday Honest Lawyer and those of us aware, who by now were quite a few, waited in trepidation to see if he would attend.

Shortly after the groups sheduled time he appeared and one of his victims very bravely went to stand in his way at the entry. After a short delay, of which I (Don) am not proud, I went to stand beside her as he approached. Again I told him that he was not welcome. A heated exchange ensued and he finally left after Mena told him officially that he was no longer a member of the group. In the aftermath Mena suggested the group needed a protocol to respond to any similar situation. This was missunderstood by an emotionally distraught victim and recriminations ensued.

At what I think was the next Tuesday meeting further details and trauma emerged. A sort of debrief took place. The matter of safety for women in our group received quite a bit of consideration.  Among the revelations were that physical sexual abuse had occurred and later we learned that one of the first to experience innapropriate behaviour had been Fiona. Mena moved to other employment. The emotional toll on her was clearly very significant as on group members.

The situation was at no time addressed by the organisation although known to many, if not for years then at least many months. To cap things off we learnt that the predator was not even eligible to be a member of the group.

From our prospective the group began to regain greater health and to engage in enjoyable activities resulting from member fundraising and grants from various sources. These included at least two trips to Havelock where we shared a fully funded meal with members from Blenhiem. Our group's subsidised parachuting drew us all together and provided much needed support as did our annual overnight trips to Lake Rotoiti funded by participants. We were assured that funding was available for other activities we might consider and long discussions were held regarding the oportunities that might be explored by the group. These included among others the hire of a sailing vessel fitted for people with disabilities and an overnight trip to hot pools at Maruia during the winter. Our group felt supported by our associatiion and flourished in the environment with a gradual increase in numbers and a better gender balance.

As time has progressed a new situation has developed which is presently of concern to us. For the past two years we have been told that there is no funding for futher group activities and that the association nearly collapsed due to lack of sufficient funding. This seemed to coincide with the employment of a third staff member but we don't know if there is a connection. Our initial reaction has been to pull together for the sake of the group in the face of a funding crisis for the management and staff.

There have been no trips to Havelock and no other occasional group activites have been organised. We have lost our Tuesday venue at Founders park but have been told there is no money to pay for other rooms even if the cost is minimal. Our christmas gatherings had been for a shared sitdown meal at the Honest Lawyer but the last two years have been barbeques at council faciliities without comfortable seating and subject to the vagaries of weather.  Suggestions that we might return to the honest lawyer for our christmas gatherings have been met with the response that we must fully fund such a gathering ourselves.

Now when suggestions involve money we are threatened with the demise of the whole formal support structure. We are told that money collected by member fundraising is no longer separated from other funding and that none of it is available for occasional member activities. It has come to feel to us like our piggy bank has been robbed by parents unable to manage their own budgets and the threats to feel like blackmail.

We can now only consider activities that are within our own often meagre resources. The loss of both venue and revenue together have had a significant destabilising effect.  On more than one occasion it has been suggested within the group that we open our own account.  In our opinion this would effectively be the birth of a new association and result in serious questions about fundraising.

We are unaware of the purposes for which money is granted and the content of applications.  The informal support provided by members to each other is inspiratial and deserving of the greatest possible facilitation by those whose efforts are directed to our welfare. Many members are vulnerable and easily victimised by disharmony and problems within the support culture.

We are aware that the Auckland group and the national brain injury association may have ceased operation at least in part as a result of accusations of financial mismanagement and acrimony within the association. We would hate to see such an outcome for our own supportive group of which we are proud to be active members.

Our success as a group involves voluntary effort by members and a functional support structure. It's heart is not always visible nor something that can be quantified. It is palpable but fragile and in need of vigilent nurture.


Judith and Don March 2014

vis iz me

I am Don Fraser. I have started this to express things that are of concern to me  living in Whakatu Aotearoa (Nelson New Zealand). First up is an on going story of my/our (with my partner Judith) involvement with brain injured people locally. This has been a source of much joy tinged with distress as will be become apparent.

I sustained a brain injury and neck fracture in 1994 when a Landcruiser was undergoing a pre-purchase inspection and fell on its hoist striking me on the top of my head. This event has become a significant presence in the lives of myself and Judith. We completed the purchase from the Hut Hospital as the vehicle had proved itself to be solid.

Some people locally with brain injuries are members of the Brain Injury Association of Nelson. This is a registered charity and incorporated society which has been in existence for around 20 years. It is exceptional among non government organisations in that it is not run by it's active membership, but by a committee consisting mostly of concerned others. Two of the committee members are representatives from the brain injured membership. Around 20 to 30 active members meet weekly on a Tuesday at a variety of venues around our city. A further and usually slightly larger group meet fortnightly on a Friday.

I hope to be able to write posts about my experiences of brain injury, of my life since my accident along with an eclectic mix of other topics.