Category Archives: Disability
My text message conversation went something like this:
Me: “I refused some of my pay today.”
Andrew: “What??? Have you gone soft in the head?”
Me: “No. I’ve just seen the end of year forecast for work. We are facing a massive shortfall. We have over 300 deaf kids to help and I’ve just seen a letter from the state government saying we are only funded for 45.”
Andrew: “Oh. Got it now. Not soft in the head at all. As you were.”
This news comes around the same time that Andrew and I finally get to drop off the car to have the wheelchair lifter fitted. 6 months ago, I rang charities asking for help to fundraise for this vital equipment. One charity said if we could prove Andrew had his neuro-muscular condition before he was 18 then they could help… but there was a 2 year waiting list. Another told me how hard it was to get funding and then sent me information about a government scheme. The scheme was only for families and even if we had been eligible, it was a drop in the ocean compared to the real cost. I rang another charity – yes, we help with making vehicles accessible for wheelchairs – but only for children!
Despairing that our need didn’t seem to fit into anyone’s criteria, I didn’t know where to turn. I told my boss and my colleagues what was happening. They didn’t blink.
In the coming weeks, friends, colleagues and people who were brand new to the Organisation, and didn’t know me from a bar of soap rallied around. People gave up time after work and on the weekend. Some donated goods for the garage sale; others came to the fundraising dinner; a group of ‘cake bakers’ sprung into action; a sausage sizzle was organised along with a cheese stand. Many gave private donations. I was absolutely blown away.
Today, someone asked me how the Shepherd Centre was different to other services. It’s hard to answer – not being an employee, a recipient, or an observer of those other services. But I felt I could say one thing with confidence: it’s not in the Shepherd Centre spirit to turn people away. If help is desperately needed, help is given. The things people did for Andrew and I – on their own time – was consistent with what they do for our families. I admire their passion and dedication and think myself lucky to work with such a fantastic group of people.
My friends and colleagues at The Shepherd Centre supported Andrew and I in ways for which I can never thank them enough. Giving up a little of my pay was the least I could do right now.
If you are thinking about giving a donation to a charity this Christmas, please consider The Shepherd Centre. For more information see the following article:
Disclaimer: the above is my own personal opinion. I would also like to stress that all assistance provided to Andrew and myself was on people’s own time and independent of the Organisation.
A couple of years ago I was at the Fundraising and Philanthropy Forum and I heard John Jeffries of CBM give a presentation on the state of the fundraising profession. During this talk, he said something like:
No one leaves school and says, ‘yes, I’m going to have a career as a fundraiser!’
It would seem that being a fundraiser is not a sexy profession. At times the way people talk about fundraisers, I’m wondering whether the phrase should be ‘never discuss sex, religion, politics or fundraising.’
Recently personal experiences have shown me that far needing to whisper ‘I’m a fundraiser’, people should be shouting it from the roof-tops with pride.
I’ve always known that fundraising changes lives. There have been times when I’ve seen it’s impact. Yet it’s only recently that I’ve really understood what ‘life-changing fundraising’ really is.
It took for a person dear to me to be in dire need of vehicle modifications in order to maintain his independence for me to really see how powerful fundraising can be.
Less than 2 months ago, I was sitting have a conversation with Andrew about his increasing difficulty lifting his wheelchair into his car. His struggle to get in and out of the car was getting too much. ‘I’ll just have to quit TAFE’ he said. ‘And organise some other way to get my groceries.’
With a price tag of anything from $8,500 up to $20,000, depending on the option he chose, it did seem hopeless.
I went away and thought about it. I wasn’t ready to give up. I came back and said, ‘you’re right, we mightn’t be able to raise the money, but I know I’ll always regret it if we didn’t try.’
Little did I know that within 2 months, we would have already raised close to $3,000. We may only be a third of the way there – and what an emotional rollercoaster it has been – yet hope has returned.
When your profession changes people’s lives like this, then there’s plenty of reasons to be proud.
Need a fundraising database? No problem. There are plenty on the market to choose from. Ring around a few mates and you’re likely to find the same names popping up again and again. From the time you start thinking about a new fundraising database, to having it installed with all your data converted you could have given birth to a sheep or a goat. In less time that it takes for a human baby to grow you can have your fundraising database safely settled into it’s new nursey.
Yet there are two sides to most not for profit Organisations. The funds and the services. If a database for your fundraising team is as quick as having a goat, how long does it take to get one for your client services department? In my experience, 9 months can come and go and there’s still no database. That’s right. If you’re planning on birthing a client services database, then start making friends with fur seals, giraffes and elephant mothers-to-be as these will be in your mother’s group. I hope for your sake that it isn’t as long as the elephant (22 months).
Part of the problem here is that there are no usual suspects. Ring around other Not for profit Organisations and you will probably hang up empty handed.
Of course, I’ve made a huge assumption here. I’m thinking that fellow charities must be using a database to track their service provision. In your quick ring around and you may find out that the ‘database’ is the paper file. The ‘database’ is a few excel spreadsheets. Or my personal favourite, the ‘database’ is something that Jane’s husband made up in two days in Access because Jane’s husband is ‘good with computers.’ Does anyone know how to change it? Yes – Jane’s husband does. Oh great. Let’s hope Jane and her husband never get a divorce.
A year in the making
So where’s the good news? I thought I had it. I thought (stupidly) that because it took twice as long to implement a client services database that it meant it would all go twice as smoothly. Twice as long means twice as good, right? Wrong!
The issues of data quality that exist with most fundraising database transfers weren’t going to plague me. After all, we had hardly any data as it was all in those paper files.
The data quality curse
Yet it seems the data quality curse knows no limits. The same curse which causes your fundraising team to put Mr & Mrs Jones on one client record, infects the clinical department as well. I’m hoping that I have the power to stop it before it gets too bad but the signs are all there.
Take this simple example. The humble look-up list. When you open your fundraising database and pull down the ‘Title’ field, if it’s been through multiple data conversions without a data tyrant at work, you’ll have an abundance of choice. In addition to the usual Mr, Mrs, Miss and Ms, it’s likely you have Rev and Reverend, Sister and Sisters, Mr&Mrs, Mr/s, Householders and my favourite Mr 7 Mrs (where someone forgot to press Shift for the ampersand).
In the case of Title, there are standards. It’s easy for a data monkey to come up and fix them all up, however what does one do for diagnosis? Or disability?
Other. It’s the answer to everything. When you just can’t decide, go with Other. If I had money for every time someone had asked, why can’t we just have Other and then write what it is, I’d be buying a house with a pool big enough to house a fur seal.
To be fair, some of these things aren’t easy. While there is an Australian standard for language and country of birth and ethnicity and god knows what else, there is not one of recognised ‘disabilities’. Or at least not one I can find. (For anyone looking the best I can find is a list from the Department of Family and Community Services of conditions recognised as eligibility for the carer’s pension. And if anyone has found one on the Australian Bureau of Statistics, or elsewhere, please send me a link!)
Another little trick the data quality curse has up it’s sleeve, is the multi-talented data field. This is a little like a bunyip, a yowie or a yeti. It must exist as people talk about it but I’ve yet to see one! It’s that field that magically transforms itself as the user’s will. When people don’t feel like typing a date, it undergoes a metamorphosis and becomes a text field. Just the other day we were having a discussion about when we should enter a date and someone came up with an ‘exception to the rule’. As it was a date field, their usual request of Other was null and void. Instead they called in the multi-talented data field and suggested they just put an asterisk after the date. Never mind that a date field doesn’t allow such deviation… the multi-talented data field lives on and intuitively changes itself to allow such a thing. Pity it doesn’t also create a data dictionary definition which explains what the asterisk actually means.
But there is one more trick the data quality curse has up its sleeve. Worse that ‘Other’ in look-up lists and data fields which can magically transform themselves from date to text is the third weapon in the arsenal. The shoehorn.
This has to be one of the most used and most spectacular methods of creating a big data quality issue. It’s when you don’t have a home for something in your database, so you find another field you aren’t using and you shoehorn the data into it. This is common when Jane’s husband built the thing and now he has run off with the massage therapist to outer Mongolia and no one knows how to change anything. This is how you end up putting the mobile phone number in the medical record number box. Or the word deceased in the title field as he forgot that us humans are mortal. And if you’re looking for the name of the next of kin, try location. Obvious really.
It’s been six weeks since I blogged as the data monkey. I reached a rut. Unsure whether my sarcasm about data work was enough to carry me through; whether I really had something to say; or whether it was time to call it a day. I felt like I was visiting the same subjects again and again.
In contrast, my professional life at the moment is like a new door every week. The latest events have me pondering an age old subject. Training materials. Yawn. Sigh. Groan. I’ve spent many hours of my life taking screen shots after each click and each piece of data entry. I’ve drawn arrows pointing out the required step ad nauseum and when I worked for an employer where I had to make everything screen reader accessible for people who are blind, it meant that every time I posted a picture, I had to describe it in text.
While I don’t want to belittle the importance of trying to make documents accessible, I have to say that working for other employers has felt like someone removed a strait jacket resulting in an an explosion in technical skills. Now, I don’t pretend to be a technical geek; far from it. What I’m talking about are basic skills necessary to a successful professional life; areas that were stunted because I wasn’t able to explore visual media; there was no point: the organisation wouldn’t allow me to use it as it wasn’t accessible.
When I think about this, I’m torn. I truly believed that it was important to be inclusive by ensuring that materials were available which were suitable for screen readers such as a JAWS as well as screen enlargement software. Yet I also felt constrained. There were occasions when I would see something which was brilliant but it couldn’t be made accessible so those of us with sight, missed out. I know this will be contentious. I know I may cop some negative comments for this but I think it’s a point worth pondering.
I think back to my first few months in a new Organisation. I discovered newer versions of Excel. I discovered that you can filter by colour and people in the workforce do it frequently!
This week, I’ve discovered that video training and online e-learning is such an exciting world and something so simple to do. I’ve downloaded the trial version of Adobe Capitvate. No more taking screen shots of every single picture. No more arrows, no more manuals the size of trees which quickly date and need to be re-written. If you’re thinking – yeah, everyone knows that / ‘where have you been?’ – then the latter is spot on. I’m sure that many Organisations are embracing video training with it’s self-paced benefits and I have no doubt that they have been doing it for years. It seems that I have a lot of catching up to do.
Over at Passionate Giving, Richard is discussing how attitudes to ‘no’ can really get you down. He says:
Did you know that the ratio of ideas to a single successful product introduction is 1200 to 1? You could look at the pursuit of those 1199 ideas as things that failed. OR, you could see that the truth is that each time you go out to try something, you are learning more and more about (a) what not to do, and (b) what you should do. Success is always preceded by failure.
This really helped. When I started thinking about how my attempts to do something, which would often end in failure, were really stepping stones to success, I was able to try more things, brush off failure and focus properly.
I relate to Richard’s words when he says getting it wrong can get you down and agree with him that simply reconsidering the problem with an objective eye creates a learning opportunity.
This reframing is something I have to force myself to do. While it’s a cliche, I am more likely to think the glass is half empty. I was confronted by this recently when I went to view a unit with a dear friend who, due to a form of muscular dystrophy, has to use a wheelchair to get around. Was the unit bigger than his present home – absolutely. Was it better equipped for safety in the bathroom and the laundry – you bet. What was my first thought? A negative one. The unit can only be accessed via a lift.
‘What if there’s a power failure, or worse, a fire?’
Unphased he replied:
I’ll be a crispy cripple.’
On reflection, the odds of him falling in his present unit were far higher than a fire breaking out in a concrete building constructed in the last 12 months.
So my take on Richard’s advice – ‘success is always preceded by failure’ – is that a possibly bad situation never looks that bad when placed next to an even worse one!
One day I won’t have to write client satisfaction surveys for people. I think working at a dog and cat shelter would be easier. ‘Are you satisfied with the service fido?’ ‘Woof.’ imagine how easy results collating would be… ‘of the canine cohort 97% agreed they were satisfied and the remaining 3% ate the survey form. In the feline cohort, 70% refused to participate, 20% were satisfied, 5% put a hairball on the form and 5% were hiding under the bed.’ But seriously for a moment, how much easier would survey writing be when expecting a bark or no bark response? Gone would be the discussion about Likert scales. If you used them, you’d most certainly opt for the 5 point agreement scale over a 7 or 9 point scale. You wouldn’t have a debate about ‘agree acquiesce’ because you know that a cat is not likely to acquiesce!
Writing surveys is not an easy task. Here’s a few things I’ve learn over the years.
• Before you start, is a survey what you really need?
• Keep it short!
• If you are asking numerous ‘free text response’ questions, ask yourself again whether a survey is the right tool!
• On your general satisfaction question always follow with a question like ‘why do you say that?’ Don’t just do this for those who are dissatisfied, include everyone. I recommend this to any not for profit because I’ve found people are grateful for the service and therefore hesitant to be negative. Ive found even those who are satisfied respond to an open question with what they love about the service and what they love a little less.
• when writing each question ask what you would do, if you had that data. If you respond, ‘it’s nice to know’, delete the question now!
• act on your survey responses. I’m surprised how often a not for profit will go to the effort to collect the data and then do nothing until next years survey comes around.
• tell clients the findings of the survey (yes, would seem a no brainer but evidently not…)
Lastly, if it gets all too hard, consult a cat like I did last night. She sat on the survey draft. It didn’t help with the writing, but it made me smile.
Have you ever ‘trained’ someone where part way through the conversation you take hold of the mouse, the keyboard and start driving? ‘You just go to this menu, click this, say ok, double click that box, and Bob’s your uncle!’ Then the person you’re training looks at you with that ‘I half got that’ face.
Today I got a very real example of why sometimes the best training, is leave the person to make their own mistakes and in turn, find their way.
This example comes not from my usual data monkey database repertoire but rather from my partner.
This morning the two of us eagerly set off to pick up a new wheelchair. My partner’s old chair is a bit like Barry – the bloody useless database. When you first met Barry he was quite good. He helped for a while. You never really LIKED Barry but he was ok for a while. Then, over the years, Barry became antiquated. He no longer met your needs. It was time to take a peek around the marketplace and find something better.
And so it is that you wait with anticipation for the day that Barry’s replacement arrives. There’s excitement tinged with nerves. In the moment your new equipment arrives there’s a celebratory feel. It’s shiny, new and customized to your needs.
A few hours go by and you’re confronted with the reality you have to learn how to use your new piece of equipment. Had it been a computer, I would have been reaching over my partner to grab the mouse and drive. By instinct, when putting the chair in the car and seeing my partner struggle to maneoveure it, I stepped forward to ‘help’.
My assistance was refused and rightly so. He had to learn to ‘drive’ this lime green triffod on his own. So I stood and watched as he figured it out. I watched as he dropped his new chair and gave it the first scratch. I watched as he tried every which way to get the ‘beast’ in the car. While this was awful, it made the moment when he found a way to make it work all the better. He was triumphant!
I hope that if I start to struggle with my new database next week that I can have even a smidge of the grace and determination I witnessed today. I also hope, that should my colleagues struggle, I will refrain from ‘fixing’ the problem, sit back and watch while they find their own way and delight, when they too, are triumphant.
OK, you’ve spent months getting everything right for your new database. You have asked everyone in the office once, twice and some three times over what the ‘lookup’ values should be for all the drop down boxes and tick boxes for your shiny new database. In fact, you are just plain over it. You have asked so many times that surely you have to have covered everything.
Then some resourceful 30 something trendy loft living marketer comes up with a new concept and you have to change your database to adapt. This time it’s to cope with a new alternate format. Braille, large print, standard print – all old hat. You’re going to need to add a lookup value of chocolate. Yes you heard right. Chocolate.
At this point I apologise to my readers who are blind and using a screen reader as the video below uses printed text to tell the story. I’ve done my best to ‘audio describe’ it below the embedded link. The irony of this is that it is a video talking about how to get Direct Mail to appeal to all your senses!
Audio description of video:
Text on video reads: “Brief: Convince 6,000 top marketers and ad agencies that Direct Mail can have more profitable relationships because it can engage all five senses. Sight Sound Touch Taste Smell. Solution: send them a letter made entirely of chocolate”
Video then shows factory machinery piping chocolate into a large plastic chocolate mould. It looks to be about A4 paper size. The chocolate slab is then shown with the ‘text’ of the letter embossed into the chocolate slab. A worker uses a piping bag of chocolate to hand-write the recipient’s first name.
More text on screen reads: “The letter explains the principle of engaging the senses to create more emotive connections with customers. It asks the reader to admire it, smell it, touch it, snap it and, of course, taste it. And it asks them to call Royal Mail to find out more about sensory marketing. The full results of the campaign will be measured over 12 months. But, since November 19th, 51 leads have been generated from the mailing. 1.17 million pounds has been predicated from these leads. The mailing cost 210,000 pounds.”
A colleague remarked to me the other day: ‘when I read your blog and see stupid marketing examples, I read on to check it’s not something I’ve done.’ To that end, I’ve decided I need a fictitious charity / service Organisation. This way people won’t know whether I’m drawing on past or current experiences, or simply making them up.
So I needed a name for my imaginary Organisation. I considered something serious – momentarily – then opted for the Free The Flamingo Foundation. (In case you had not already guessed from the Tweedledee / Tweedledum references, I do love my Alice in Wonderland.)
So what sort of Organisation is the Free the Flamingo Foundation? Well, it’s a charity that raises money to rescue flamingoes enslaved to the game of croquet by the Queen of Hearts. Once liberated from the bloodthirsty Queen, these beautiful birds receive a multi-displinary service. After all, they need physiotherapy to recover from having their heads used as a croquet mallet; they may need other kinds of medical attention and/or counselling too. After the physical and mental health of these birds has been restored, it’s likely they will need assistance from an employment specialist to help them set on a new path. (You have to realise that the temptation to start a discussion on the employment prospects of flamingoes is oh so tempting, but alas, that would be too much of a digression.)
OK, now my fictitious Organisation has clients, multi-displinary service providers and the fundraisers to generate income. What else does it need? *SIGH*. A database.
Surely finding a clinical database for the Free the Flam… oh stuff it… the FTFF is not going to be that difficult? After all what do I need? A database that will record the personal details of the flamingoes rescued – that’s not too hard. Most databases do that reasonably well. What else? When the flamingoes came into care, how long they stayed, which service providers are helping each one, what the service outcomes were, how much the service cost, who was billed for the service (where applicable). There’s quite an array of information to cover, yet it’s all doable, right? Of course it is. It’s just data and processes with some techie stuff thrown in.
So I ask myself why it is that in 12 years I’ve NEVER met a service provider who raves about their database. In fact I don’t recall the last time I met a service provider who even seemed vaguely satisfied with their database. It doesn’t matter whether the Organisation does animals welfare, social disadvantage, international aid, disability or health: I hear a common message. Finding a database that does everything we want is like looking for the holy grail.
And yet, that’s what I’m doing at the moment. Looking for the holy grail. If it’s so difficult, why am I bothering? I think the Cheshire Cat has the answer for me:
‘We’re all mad here. I’m mad. You’re mad.’ [said the Cheshire Cat].
‘How do you know I’m mad?’ said Alice
‘You must be’, said the Cat, ‘or you wouldn’t have come here.’
I can’t argue with that.
Welcome to the data monkey. Whether this will be a blog of gold dust or iron pyrites you be the judge!
What prompted me to start this blog? I have a job that I thought was common as muck. I work with data. Yes, that’s right, a database person, an analyst, a researcher, a reporting expert. Yawn? Perhaps. I hope that you will bear with me for at least one blog post before deciding that you’d rather watch paint dry. I hope to write about data in the not for profit world with a healthy dose of sarcasm. My favourite fundraising blog is by Jeff Brooks. His current blog post talks about a business book called Orbiting the Giant Hairball. Jeff, and evidently the hairball author, doesn’t take himself too seriously. I hope that I can attain a similar level of frivolity while conveying something worth more than a nanodot (whatever a nanodot is…)
But why bother writing a blog about data? Well, there seems to be a plethora of fundraising blogs out there. Many with very good content, however I thought I could offer a different perspective. If you’re a person who tears you hair out at processes like… ‘I just deleted the name because they sent the mail back and I thought that way they wouldn’t get any more mail’, then this is the blog for you. Before you think I’m starting a blog to have a rant about data donkeys, I should point out that when I’m calm (and not confronted by 5 codes meaning the same thing!), I realise that people in not for profits are often called upon to be a jack of all trades. Who manages your fundraising database? I suspect it’s probably a fundraiser, usually the Direct Marketing Manager. Who manages your clinical / client data? It’s probably someone who was once a service manager who was voted as having the most knowledge about a computer. Of course I think this isn’t the ideal situation. (After all, this is my livelihood). But it’s a situation I’m sure will continue – at least in small nonprofits who just cannot afford to employ a ‘data monkey’.
So whether you’re a fundraiser, a clinician or another data monkey like me, I hope that you will find some useful information in this blog.