Kevin Hoey, Sunbeam House Services, Bray on a pilot scheme that empowers those with an ID through technology.
Hop on a bus or a train and at least half the passengers are clicking some gadget, be it a smart phone or the latest tablet. Not so long ago, the only person seen with such a device was probably a person with a communication challenge, the device being used solely, and in many cases reluctantly, to overcome some sensory deficit. In many cases the device was bulky and probably cost a king’s ransom. The robot-like emanations turned heads and were often a source of embarrassment for the user. Nowadays, this need is conveniently camouflaged behind the latest iPad or Galaxy tab and the person with a sensory challenge fits in well with the masses. The cost of the device is significantly lower than its predecessor and the flexibility of its use is immense.
One gentleman I have the pleasure of working with at Sunbeam House Services (SHS) has made this transition. When he wishes to ‘speak’, he flips his iPhone open (reminiscent of that early Star Trek wrist action) and gets his point across in jig time. He then returns to checking his emails or catching up with his Facebook posts.
The expensive four-figure-priced boxed application has been replaced with the ‘app’ costing from zero to a relatively modest sum. The creation of these apps has in many cases moved from the domain of the techy developer to the family member of the person supported, innovatively creating new and useful pieces of software, the purposes of which are very specific. Don’t take my word for it, just google ‘Apps for Autism’, and you get a ten-page list detailing apps that meet this need. One common symptom of autism is a difficulty in speaking or an inability to speak. Many of these apps use augmentative and alternative communication (AAC) features that teach the person with autism how to construct sentences using symbols and pictures. They also have text-to-speech, word prediction, and a customisable vocabulary and interface.
The people requesting services and supports from our service have pushed us to rise to the challenge of assistive technologies as an aid to meet their needs. As a service provider working with adults whose challenges in life are intellectual, this is an area that is relatively new. Our colleagues in the sensory and physical disability sector are somewhat ahead of us. However, I believe SHS, and our colleagues in the sector, are catching up.
A number of young people at our Training Centre have both intellectual and sensory challenges and the apps installed on their iPads greatly assist in their communication needs. However, less obvious assistive technology is now available to meet the changing face of services and supports in the intellectual disability world. During my thirty years working at both frontline and management level, my colleagues and I, perhaps unwittingly, have subscribed to the notion that, ‘we know best’. As controversial as this statement is, I believe we were not alone and most services, particularly in the ID sector, were designed on this assumption. This debate is for another time, but there is no doubt, times are changing. Policy shifts have seen self-directed supports escalating across the sector. So how can we use assistive technology to help the people we support answer the question ‘What do you want of us?’
While prioritising my ever-growing inbox, I was about to hit the delete key on what I thought was one more piece of unsolicited advertising. I spotted the word iplanit. What caught my eye was, I thought, a misspelling. However the name turned out to be the catchy title of a piece of software designed to assist in service planning that, very much, puts ‘the person first’. This chance ‘find’ on my part led to the start of an interesting assistive technology pilot project at SHS which I believe will challenge much of what we have done in the past.
My intention is not to endorse one piece of software (detail of which is available on www.aspirico-com so you can decide for yourself about its functionality). However, it was the premise behind the software that intrigued me most.
Ownership of the personal plan, within the database, lies with the person being supported. The person has the final say on which part of their life plan is visible to whom. The system facilitates an advocate, if required, who might be a keyworker or family member. However, it is essential that it is a person who will not unduly influence the person supported, who has their own login and their own view, customised to suit their level of intellectual ability.
From the organisation’s perspective, the key performance indicators (KPIs) linked to the person’s goals can be identified and their progress tracked. If the technology is used organisation-wide, it provides the service and support manager with a tool to see where organisational deficits exist and where resources need to be allocated to meet them. The system has the ability to link with the organisation’s quality system, e.g. Personal Outcomes Measures.
From an accessibility perspective, the person supported can upload and build their personal plan using a range of multimedia formats, including soundbytes, video clips etc. A simple ‘email-like’ messaging system allows the person to send and record queries to all the stakeholders tasked with supporting them. Additional optional modules include personal finance and time-tabling.
We piloted the software at Sunbeam House Services with a group of people supported, family members, frontline staff and service managers. The vendors assisted us with the start-up, and training for all stakeholders was provided.
One interesting comment made by a family member during the pilot was their concern about handing over control—the system allowed the person to ‘keep secrets from the family’, if they wished. But that concern was balanced by the potential for the person’s siblings to be involved, even though they lived in Australia—because the system is web-based.
I would not like to understate the challenges that were identified, both from cultural and technical perspectives, during the course of the pilot. However, when the pilot group reported to our senior management team, the value of the system was recognised and there was an agreement in principle to support its introduction. The vehicle for this will be the launch of ‘Self Directed Supports’ which has just taken place at SHS. Iplanit will be used to assist the people supported when we ask them ‘What do you want of us?’
In conclusion, there has never been a better time to take advantage of assistive technology in the intellectual disability sector. Much of the ‘self-perceived’ stigma attached to it can be eliminated. Miniaturisation has done away with the in-your-face element of the devices, and mainstreaming has brought down the cost to a point where it is available to all who need it.