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How everyday tech supports my son to live the life he wants

Rachel Mason, family carer and self-directed futures consultant shows the creative use of social care funding can be achieved with person-centred care technologies directed by those using the tech. Meet Shaun.

“Alexa, open my curtains.” “Alexa, how do you make an omelette?”

Digital gadgets are a normal part of our lives, helping us with everyday tasks. Despite this, social care support that helps with these very same tasks is still often commissioned as ‘time and task’, delivered in structured time slots by formal services. This, I believe can often lead to unnecessary dependence.

When my son Shaun, who has autism and learning disabilities, returned from residential college, his local authority offered him a specialist residential care placement, but on visiting it, we knew it was not right for him. There, Shaun would have to fit into and live a service, rather than be enabled to live a full and meaningful life in a home of his own.

We asked how much the placement would cost. Their response was £1,700 a week.

I knew we could design a support package around Shaun in our own community with that funding, so we chose to take a direct payment.

Flexible technologies for outcomes

Our first empowering use of digital TEC was a piece of software called the 24/7grid. It enabled us to explore the different ways we could use his social care funding more creatively.

With clearly identified, co-produced outcomes agreed with his social worker, we used the 24/7grid to show how we could meet those personal goals for just £832 a week – a 50% reduction.

Every aspect of our planned support was flexibly wrapped around Shaun, enabling him to do things the way he wanted and, crucially, to reach his best potential - but at his pace.

However, Shaun’s autism meant that he found the intrusive, face to face interactions with his support worker too stressful, so we had to be creative.

Digital TEC was the solution, and he took to it like a duck to water!

Unlike a care worker, TEC does not expect social interaction. It has set, predictable responses. Perfect for Shaun. Using TEC is a more personalised way to meet those same critical needs that traditionally councils put face to face workers in to deliver.

Yes, we use traditional TEC such as a telecare box, but not for the usual falls and emergencies older people use them for. Instead, Shaun’s alarm is a responsive pager linked to his personal assistants (or his family) who can provide verbal prompts and reassurance, 24hours a day.

Bed, chair and room sensors, plus a door camera provided the supervision Shaun requires to keep him safe, but are light touch compared to round-the-clock support.

The sensors trigger a call to myself or my husband to tell us that Shaun isn’t in bed at midnight, but still at his computer – so we can offer a gentle reminder to get some sleep.

If the room sensor finds Shaun is still at home rather than on his way to a particular activity, it will trigger a call from us to prompt him.

Many day-to-day digital solutions we use are not designed by or for social care, but they are perfect to offer the responsive prompting that my son needs.

Digital headphones double as ear defenders (a key piece of kit for people with autism). The wireless Bluetooth allows discreet verbal prompts from a distance by one of Shaun’s PAs when he’s out and about.

Digital photo frames loaded with visual and audio ‘step by step how-to’ prompts, have increased his independence to:

  • Make his own meals
  • Load his washing machine
  • Clean his house

Discreet digital photo key rings, loaded with visual reminders enable Shaun to:

  • Do his own shopping
  • Walk around his community
  • Travel on the bus

GPS apps on his smart phone and watch offer verbal directions and a location for us, if he gets lost. Alexa provides Shaun with reminders for daily tasks, and it can turn pieces of equipment in the house on and off.

A novelty, coloured heat sensor gadget, inserted into taps and shower heads, ensures the water is the right temperature. This is not only fun, but has reduced the need for one-to-one personal care.

12 years on, Shaun has achieved so much because his personal budget was creatively used to reduce the barriers to a good life. It now stands at just £150 a week.

I often ask myself whether my son would still be in the £1,700-a-week residential care if we hadn’t aspired to do something different and had faith in digital solutions.

The government’s new social care white paper is all about giving people choice and control over the way they are supported to live life. I believe this doesn’t need to be expensive, overbearing or lifelong.

It just needs to be personalised and co-produced so we can all reach our greatest potential.

And the digital solutions that you and I use every day, have a crucial role to play in achieving this goal.

Rachel Mason is a family carer and self-directed futures consultant, working with Think Local Act Personal (TLAP) and the National Co-Production Advisory Group (NCAG)

 

 

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