“How much does it cost me to be able to communicate with my child?”

Monday, 18 July 2016
“How much does it cost me to be able to communicate with my child?”

I cannot even describe how I feel. Anticipation, excitement, joy... About a year of preparation and now the time has come: We have started!
I don’t even know where this journey will take us. But let’s take things from the start, because words are rushing out…

“They can’t communicate with their kids”

The first time I realized the need when I was in ELEPAP (Rehabilitation for The Disabled) to offer them the remote control that we developed for people with disabilities.
- “Hey guys, can you do something more?” Ria, ELEPAP ergotherapist, told me with agony. “...For our children, who cannot communicate”
- “Tell me…”
- “They cannot tell us what they want, how they feel: They have mobility problems, but more than often their speech isn’t clear as well, some of them cannot speak at all. Do something so that they can tell us what they need, such as a glass of water, something to eat or that they are cold…
- “Hold on Ria, how are they communicating now? There are some communication programs for PCs, aren’t there?”
- “Yes, but this kind of program is expensive. And if you count the cost of the equipment as well… Well, that’s a lot… How many of these parents have enough money in Greece to spare for such a need, in the middle of an economic crisis? Not even we, as ELEPAP, don’t have as much as we need. And this is not all!”
- “What else?”
- “Well, here we do ergotherapy with the children, a great job is being done, and the program you mentioned earlier is helping us a lot, but when they get back home... the work stops… The hours are not enough in their everyday routine, progress is very slow”
- “Wait a moment, what do you mean? When they are home, how do they communicate with their parents, how do they exercise?”
- “The situation is very difficult Vassilis…”

I left puzzled.
“Who has the money?” Thinking about the agony of the parents: they want their kids to be able to communicate, to exercise more in order to be more efficient, or even self sufficient, but…

The same situation, everywhere

Some time later, the same need was described to me by Dimitra, an ergotherapist at Evaggelismos Hospital. This time it did not regard children. She was talking with great concern about adults that are being treated at the Increased Care Unit (ICU).
"Many of those people can not move or speak. As long as they are in the ICU, I can understand what they want with the help of a program and a special button that they click in any way they can. But, when they leave, how will they be able to communicate with their families? How will they say "I have itchy feet" or "Rearrange my bedding"? These systems are expensive"
Again the same question: "Who has the money?"

The same issue came up also with Aristotle, a very active ergotherapist at KKPPA (Social Care Centre in Attica). We heard the same thing over and over again from all ergotherapists we spoke with…

And what will we do about this? 

The team immediately started working on it. We experimented for some time, we studied in detail what is already available, what we can do ... We even prepared pilot solutions...

So, when we submitted a funding proposal to the Stavros Niarchos Foundation, our anxiety was greater than ever. The need is enormous, will the proposal be approved?
And it was approved. Approved! The people of the Foundation understood and shared our concerns. So here we are... we begin!

Here we go!

We are working intensively, we are already ahead of schedule: We are developing “Talk and Play”. A system that we will be concluding in autumn and will be offering for free to everyone. With this software program people with mobility limitations, or facing problems with speech, will be able to:
- Communicate
- Choose music or video on their PC
- Train and exercise for their rehabilitation under the instructions of their ergotherapist.

We will create and offer a ready-to-use solution (software program built in a PC and a special operating system) to our partners: ELEPAP (Rehabilitation for The Disabled), Recovery Laboratory of Athens Medical School (Evaggelismos Hospital), Social Care Centre of Attica, and to parents and their kids.

In order to have it at home, for their family.

Because, we don’t want “money” to be the problem anymore, at least in this case. We’ll do our best. And that’s a promise being kept.

 

The project is being developed by SciFY
with exclusive donation from Stavros Niarchos Foundation.

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