R-I-C-O-C-H-E-T (ricochet) – Don’t you just love the sound of that word? Meaning rebound, bounce or skip off a surface – to go in another direction…
Let’s start here – Most people who have a disabled person within their family would describe their journey through life as “difficult” to say the least, and even more so when the disability is considered severe or complex. Especially so, if the primary caring role continues through to adulthood.
In connection to myself, I most certainly concur with the following quote…
”Inside every old person is a young person wondering what happened.” Terry Parachet
Nevertheless, all parents want the best for their family, disabled or not and at any age.
As someone who I guess could be considered the “mother from hell”, as I did my ‘darnedest’ to address further options in service delivery for Angela (and her like peers) over the years, but basically there were really no avenues for success.
Sure, a proactive group of us raised funds for equipment, participated on boards and committees in an effort towards better equality for people with the most complex needs, but eventually years went by and we “faded into the woodwork” having put in lots of effort for little result. High needs people are resource intensive and in the disability arena funds are always scarce.
So, one joins the ‘throng’ of what is available and becomes part of (without knowing it at the time and something I’ve learnt since) what’s called “person centred resignation”, and for those interested can take a look at the attached link that I came across, which I found rather informative and I guess somewhat motivating.
http://www.learningcommunity.
Oh, this new word “person centred” (without the resignation) was coming into vogue – person centred planning, person centred approach, person centred thinking, personalisation, individualisation, personalised support, the list goes on and on.
This old brain of mine went into overdrive as I read further…
…individualised funding, commitment to change the way funding is used, seeking different forms of funding, supposedly resulting in greater opportunity and flexible options for disabled people regardless of the level of disability.
Gee, the more I researched (Googled) the more I was hooked on this concept of person centred approach where individualising meant supports would be tailored to each person’s lifestyle aspirations while being mindful of their vulnerabilities.
SEEMED TOO GOOD TO BE TRUE OR TOO FAR AWAY – but I guess I couldn’t shake my old patterning instincts of wanting improvements to Angela’s core existence, let alone aspirations.
The mind boggled somewhat at this person centred approach, which seemed complex in some ways but certainly had a simplicity component.
However, being the proverbial sceptic brought about by past practices endured as a Mum of a person with a severe disability, I had my doubts about the “theory verses practice” side of it all. In other words sounds good on paper, but when it comes to putting into practice a completely different matter.
Nevertheless, I kept being intrigued by what I read, especially Five Valued Experiences by John O’Brien’ & Connie Lyle O’Brien’s 1984-1987.
- Sharing of ordinary places (go places)
- Opportunity to develop and maintain relationships (know people/see friends)
- Be Somebody (being respected by others and seen as a valued person)
- Opportunity to make choices (big and small)
- Opportunity to develop abilities (big or small)
All of the above certainly pushed my buttons but hey this Mum now comes under the heading of “ageing” – damn it!
Energy and persistent effort is required for attempting any sort of change (let alone getting individual funding) and as far as I could work out, going from block funding to individual funding was certainly the only way that betterment (personalisation) could be obtained…
A quote I had read kept flashing in front of my eyes…
“With the right support anything is possible”…
Should I at least try? Yes, why not…
Well, to jump forward, Angela has changed from block funding to individual funding and heavens, this is the way to go for her flexible tailored day programme, with my long term desire of increased community presence for her.
I’ve added to Angela’s week myself, home based remedial massage therapy, a podiatrist and a multimedia advocate for profile and digital inclusion. How empowering for a young lady with complex needs to be part of the digital world.
Angela is so pleased with her autonomy gained with her assistive technology, a pressure switch/button and screen and media configuration. If we go visiting family or friends, the adaptive equipment has to come too!
“E-inclusion” is more than software and equipment, it is practices and the relationship between people, ideas and technology and in Angela’s case, certainly ‘the right person’ with a “possibilitarian” attitude, plus an extraordinary value system towards severe disability….. Brendan O’Connell we acknowledge your commitment and skills with thanks.
Here’s a quote that for me, sums it all up by Rhoberta Shaler, PhD.
RIGHT – action is when the
RIGHT – people do the
RIGHT – thing for the
RIGHT – reasons at the
RIGHT – time.
May I also say with a grin, who would think that Angela’s digital inclusion would actually impact (ricochet) on my own skill base at this time of life, acquiring photo editing skills assisting in part to Angela’s multimedia programme, thus reducing my ‘digital divide’ as well.
“Way to go… it feels almost as good chocolate!!!!!!!”
Individual funding for Angela means the opportunity to experience, participate in life, exercise preferences thus reflecting her individual identity.
In closing one of my favourite quotes by Franklin D.Roosevelt sums it all up…
“We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.”
…Couldn’t agree more!!!!!!!
‘FROM RESIGNATION TO POSITIVE POSSIBILITIES’
That about sums up success!
by Bev Nugent, April 2015.