Are you up for the Challenge?

You can make it happen with an iron-will.

Thanks to a few friends, we are nearly done with the preparations. There is a poster (see above), a website, a GoFundMe site and a few other items ready to go. We have a core group of friends each of whom have committed to get a group of their friends to join and encourage them to spread the word to their friends.

When I shared the idea with someone the other day they said, “it’s called a pyramid scheme“.

I suppose it’s a good thing in this case. Because we want as many people as possible from all over the world to participate and show the world that they are up for the challenge.

I still need two more friends who are ready to take part and who would commit to get (at least) five of their friends to join the challenge. If you’re ready to do that, please let me know. It would be great if we could go truly global!

Look at it as an opportunity to join what’s going to be the most amazing event.

We will set up everything this month and start building up support in April. The challenge itself will run from 01 to 30 of May.

I was looking the other day for information on client-driven service evaluation. And I found this table relating to Case Management in Health Services comparing client-driven and provider-driven models.

I could not believe that this is decades old and seems to describe a well-known models. It describes nearly to perfection the differences between the model we want to follow with An Saol and the model we suffered in the past. No need to re-invent anything. But a need to implement.

Sometimes it’s good to go back to the literature.

We are still trying to identify the best access method for Pádraig to different types of gadgets: for communication, environmental control or just fun. We have tried different manual system and electronic switches connected to different apps and computers. We have even experimented with headsets trying to track electronic signals from his brain.

Over the last few weeks, a brilliant student from UCD introduced me to a revolutionary form of mouth switches. There was a prototype-model he had designed. And there is a highly sophisticated model being designed by a new startup in the US.

The Smart Mouthware device is designed to allow the user to control a computer or a phone with their tongue.

Interestingly, it is often the tongue that patients exiting from   an unresponsive wakefulness syndrome (also still often called a persistent or permanent vegetative state) can first move purposefully.

Another discovery we made was that in many cases people who have very restricted controlled movements, will no longer need to purchase expensive eye trackers but will be able to use apps taking advantage of the highly sophisticated cameras built into the latest released of the iPad Pro and the iPhone. These cameras can track head movements and ‘translate’ them into mouse movements on the screen. In order to ‘click’ they can detect different facial expressions such as sticking out your tongue or blinking with your eye.

Incredible advances are being made in terms of how services are being delivered and how technology can be used to support people with significant disabilities.

It is absolutely brilliant to have the An Saol Rehab Centre in place to connect the research and these phenomenal technological advances with people whose life will be changed by this connection beyond recognition.

An Saol puts the ‘survivors’ into the driving seat. It puts the concept of a person-centred approach as promoted by the HSE into practice: “focus the delivery of services and supports on the person and how they want to live their life”.

It supports the UN Convention on the Rights of Persons with Disabilities (UNCRPD):

      • Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
      • Non-discrimination;
      • Full and effective participation and inclusion in society;
      • Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
      • Equality of opportunity.
        (from Article 3)

States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services. (extract Article 26)

We need to do more than advocacy and more than providing traditional provider-driven and clinically-oriented therapy services. We need to change the way they are delivered to make them work long-term, in the community, and supported by a person-centred plan.

As the National Framework for Person-Centred Planning points out wisely it is paramount that —

this plan is put together by a planning team that includes the person for whom the plan is made and who owns the plan; a person to support the owner to put the plan together and into action; the family (if that is wanted); and other people who provide support from time to time, who might be a therapist, a nurse, a psychologist, of a social worker.

We know what needs to be done. The challenge is to make it happen. We will.