My Life Experience + Technology + Bravery = Inclusive Reality #44 #cong23 #reality
The reality for carers is that decisions are made by others and carer burnout is high. Self-directed care offers a new reality for putting people at the centre of their own lives. It’s complicated and challenging but transformational at individual and community level. Technology has a role to play to enable people to get back to living their best lives.
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- Lives are complex
- Carers are undervalued and over relied upon.
- Self directed supports offers hope.
- Bravery is required to make this a reality!
About Karen McCormick:
I am a mammy of 4 kids and married to George. We live in beautiful Inishowen.
I enjoy swimming in the sea as much as I can.
My lived experience of being a working carer has motivated me to now work for myself. I split my time three ways: I am founder of inCharge – enabling better self-directed care; I am lived experience engagement lead at IMPACT, the UK implementation centre for evidence in adult social care; I am a personal assistant employer and I manage my daughters personal budget.
I am looking forward to actually getting to Cong!
Contacting Karen McCormick:
By Karen McCormick
I wrote a submission for last year’s CongRegation and life circumstances deviated me from getting there.
A lovely wedding invitation was the initial detour on my 2022 journey to Cong but on the same morning of the wedding I had a mammogram – 8am, plenty of time to get home and get ready. Odd-looking cell formations showed up and I had a biopsy. So, in effect, I missed most of the wedding ceremony. Those of you who were in Cong last year will know it was on 26 November. This happens to be my mammy’s anniversary having passed away at a young age of 49, the age I am now. A sad reality for me but feeling very much connected to her that day. Every day.
I was sitting in the pub in my hometown in Donegal after the wedding ceremony that I mostly missed, waiting to go to the reception. I was feeling a bit fragile from the unexpected biopsy and my husband was getting me a glass of wine (doctor’s orders). I glanced up and there in the pub in my hometown of Moville was a fingerpost sign for Cong.
I can’t quite take it in, so I sent a pic to my friend Ailish as proof!
Now back to Reality.
The reality for people, like me with caring responsibilities, is life is much harder than it needs to be. Decisions are made by others about people not with people. Carers are burning out. We are on duty 24/7, 365 days a year. We can dress it up however we like but that’s the reality of it!
We decided to change the experience in terms of decision making for our daughter. We opted for a personal budget when she left secondary school rather than tradition disability day services on offer. Our goal was and is to put her at the centre of her own life, empowering her to have as much choice and control as possible.
This decision had big implications for us as a family.
My professional life took at twist.
I was now going down the path of becoming a personal assistant employer – a micro care provider.
The reality of self-directed supports for my daughter? Transformational!
She does regular things in our community supported by people chosen by her and who understand her evolving needs. The community impact is palpable. More inclusive, thoughtful and considerate. More aware.
The reality of me becoming an employer? How hard could it be! There would be lots of support, advice and guidance. This is international best practice after all.
There would be technology solution or system that I could buy? Right?
Lots of bits of solutions and lots of systems for service providers but none for people with care needs and their families. Families like us. So not only was I on the journey to becoming a micro care provider, I was researching to develop person centred technology. An entrepreneur!
I’m not a technologist. However, I have lived experience and a deep understanding of the problem I am working to solve. I naturally connect with empathy to other carers and people with disabilities. I suppose it’s the reality I have known for the 22 years of my daughters life so far. I also know that lives are complex as you will see from my opening paragraph. I have a skill in joining the dots or unpicking the complexity. I can understand it from many perspectives. Ultimately, strip it all back and it’s simple really. People supporting people.
I know that technology is not the panacea to self-directing supports. I do believe that with the right digital tools and supports, people can be less restricted and more free to live their lives as they see fit.
It also gives us the opportunity to store our personal story and care needs in one place, a place that we have access to and can choose who to share our data with. I see this is future proofing for my daughter. Information and data about her care needs, likes and preferences, schedule and people that are important to her. If anything should happen me, then others of our choosing will know what to do and how to approach it.
It’s not rocket science but it is a departure from how we traditionally organise care.
Bravery is needed to break down barriers and rebalance power. Changing the culture of authorities from a traditional systems focus of power and control to person centred approaches will be slow and difficult. It is possible to have a society and structures that see individuals and families as equals and architects of their own lives irrespective of what needs they have. Bravery is also needed from us. Individuals and families need to believe and trust that we can do it for ourselves.
A new inclusive reality.