A Client Centred Approach to Care

We have an election in BC on May 9th for the provincial government. Both Disability Alliance BC and the MS Society are working on their priorities for the upcoming campaign. It’s important that we think about the people behind the priorities, the effect that these priorities have on their lives. Over the coming months I’ll be doing a series of posts on the priorities we have decided on, and the stories of the people behind them.

One of the big priorities for both organizations is our approach to care. There are many stories more critical than mine, but it lays the foundation. The process that the system is built on.

Applying for assistance with care is an intrusive process at its best, because it deals with your bodily functions, those most personal aspects of your life. Applying for care and continuing to receive care within these programs needs to recognize the person and their right to privacy.

I get my care through CSIL – Choices in Support for Independent Living. On the face of it, it’s a great program, because it gives you a great deal of independence, but there are other aspects that need attention.

Starting to apply puts you into a strange world. You are asked to time all aspects of your life that need care – transferring on and off the toilet, showering, dressing, eating. You name it, you time it. As you can imagine, it’s tedious and not very accurate. After you have completed your timings, you learn that there are already a whole load of rules in place! 

Meals – if there are two of you, you can only claim for the time it takes to do anything different that is just for the person who needs care. So my husband prepares all of our meals, but we can only claim for the time it takes for him to chop up my food for me!

Compression socks – it took you 4 minutes? Sorry! Our list says it should take 2 minutes – that’s all you get!

Laundry – only the time it takes to load and unload the machine, not the time it is in there

And on and on the list goes on. Perhaps you get a community care nurse who knows a few tricks of the trade and helps you to complete it all. Perhaps you get one that makes you feel like you’re over-exaggerating your needs. Who you get is really important – they are the person that is representing you!

Your needs are presented to a panel, a committee, someone who makes the decisions about how much care you get. My first response was “Great! When and where? Do they know I can only do mornings?” Then here comes the crunch. You’re not allowed at the meeting. Wait, what? You’re talking about me, about my needs, and I’m not there? What about Nothing About Me, Without ME?!? A client centred approach would begin with me being there, and then move on to other options if I didn’t feel capable of representing myself.

Once you get through this, if you are successful, you are given a number of hours and the money associated with it. But this process does not go away. You are re-evaluated periodically and have to do the timings again. That makes sense, right? I have a progressive disease, I’m going to get worse, we need to make sure that I’m receiving enough care? No. Behind the re-evaluation is the possibility your timings are wrong, that you’re taking more than the allowed time to transfer. The threat that your hours may be reduced.  And on top of that, the timings could be done by the person conducting the review – a complete stranger timing your most personal acts.

CSIL means you are the employer. You find your staff, you hire them and fire them, train them, pay them, do taxes, WCB. A great deal of independence. And every single person on CSIL is doing this independently. One person on it told me that they completed 14 ROEs in 6 months as staff came and went. Wouldn’t it make sense if there was a collective of people approved for CSIL? A database of staff in your area that are already employed by someone else on CSIL and might be available for some extra hours for you? A network of people just like you that you could work together with? Independent doesn’t have to mean alone. Wouldn’t interdependent be a better approach?

Certainly, CSIL is the right approach to care for me. The home care model is not something that I would consider. But CSIL needs some work. It needs to put the client at the centre of the model.

The power of the individual

We often think that as an individual our actions are not enough to make a difference. That’s not always the case, and given the challenges with the new occupant of the White House, it’s more important than ever for us to act to make a difference.

If you a disabled, maintaining your independence can be a challenge. One of the main aspects of being independent is being to travel to places. For many disabled people, the only option they have to travel is by public transport. If you live in a major city that should be relatively easy, but it’s not always the case.

In 2012, Doug Paulley, a wheelchair user, was trying to get home by bus. The space on the bus that was meant to be for wheelchairs had a pushchair in it, with a child that was asleep. The mother refused to wake the child and move the pushchair. The details are here.

This certainly isn’t the first time this had happened, but Mr Paulley is a disability activist. He took his case all the way to the Supreme Court and in January won a ruling that drivers must try to get the other passenger to move. Excellent!
Not so fast. Just a few days after the ruling, this happened. Once again, the person in the wheelchair, Kirsty Shepherd, was refused entry to the bus because of a pushchair being in the wheelchair spot. The mother offered to move it, but the driver, who was clearly having a bad day, said no and ‘terminated’ the bus! And look at the reactions of passengers – rather than siding with the disabled person, there were shouts for her to get off so that they could all get home.

The power of the individual. The mother with the sleeping child. The bus driver that wouldn’t challenge her. The bus driver who was having a bad day. All individuals whose actions had a major impact on the disabled people trying to use the bus, a negative one.

Doug Paulley, taking the case all the way to the Supreme Court. Kirsty Shepherd who came forward with her story. The mother that was prepared to move her child in the pushchair. All individuals  whose actions had a positive impact for disabled people. 

What would have happened if the people on Ms Shepherd’s bus had stuck up for her, instead of shouting at her to get off? Could you be the person who stands up to be the positive change? 

Somehow, I think we are going to need a lot of people to stand up for the positive change in the next few years.

The long reach of a publication

I know a lot of you academic types. You write things, it gets published. Maybe it gets read, maybe it doesn’t. What if I told you that a document about categories for an economic report would be used 25 years later throughout the world, and continue the use of outmoded and derogatory naming for disabled people?

Last week Ian got invited to a volunteer event with the City of Kelowna. It was to launch a volunteer initiative for Canada150 to log the volunteer hours of Canadians throughout this year and to inspire them to volunteer more. When he told me about it, I thought it might be a way to promote the two organizations I’m a board member with – the MS Society and Disability Alliance BC. I went to the website for the event, and that’s where things started to come unstuck.

I logged in and needed to add my organizations. MS Society – no problem. Disability Alliance BC? Missing. There was a process to add  an organization, so I started to do that. First step – what category is the organization? The only one that remotely ‘fit’ was “Services for the Handicapped”.

Handicapped?!? In 2017?!?

I sent an email to the organization behind the initiative, Volinspire. A speedy response offered to change it to “Services for Special Needs and Diverse Abilities” – a step backwards to a couple of euphemisms as far as I’m concerned. An email discussion ensued where I gave my case for people/persons with disabilities. I find it bizarre to have to explain we have a Minister for Persons with Disabilities, Canada is a signatory to the Convention on the Rights of Persons with Disabilities, the main advocacy organization in Canada is called the Council of Canadians with Disabilities, but, for some reason, people here in Kelowna think that “diverse abilities” sounds nicer! 

You may think it’s strange that I am arguing to be called disabled, that that isn’t something you would expect. Here’s how to think about it. What is it that disables me? Is it being in a wheelchair, or is it that I live in a society that isn’t designed with my needs in mind? I’m not sure if I’ve shared my favourite video on this subject with you, but if not, here it is:

Get it? Good.

One of the emails from Volinspire said that the form I was completing on the website was filled with data that they had received from Canada150, which came from a StatsCanada website, which in turn came from the UN, from something called ICNPO – the International Classification of Non-Profit Organizations. A few more turns with Mr Google and I discovered that this classification had been written by Johns Hopkins Centre for Civil Society Studies, in conjunction with the UN. How strange that the UN would be promoting the use of the term handicapped?!? And the ICNPO was being used everywhere – the term handicapped had been embedded into countless documents worldwide.

An email was sent to Johns Hopkins – and a really speedy reply came.

This is where the long reach of research and documents comes in.

This classification system was written 25 years ago. Its purpose is to help statisticians to compare work in nonprofit and for-profit organizations and when it was written, it drew heavily on an even older classification system. I guess we are lucky that it said handicapped and nothing worse! The people who wrote it had no idea that it would be used, 25 years later, for the public to add their organization to a volunteer initiative. Here’s what Johns Hopkins had to say

I should mention that ICNPO is in no way intended to dictate or endorse specific terminology to be used by nonprofits themselves in either their names or the descriptions of their programs/missions. It is, rather, intended to allow statistical agencies across many different countries and cultures to have a common brand definition of the fields of activity in which nonprofits operate. 

Hmmm. But once it was out there, there was no way to check how it was being used.

They also told me that they are in the final stages of presenting the revisions to it to the UN, and the term that will be used is  – guess what – yup – persons with disabilities. It won’t be available until the end of the year – and how will it filter through the myriad of uses the old language has been used for in the last 25 years. I’m sure we will be discovering this use of this old report for many years to come.

I forwarded it to Volinspire. Their response? They’re going to have a discussion and let me know what they decide.