If we don’t look to the future the care crisis is only going to get worse

By 2020 there will be two million more people aged over 65.

Office for National Statistics projections suggest that the population aged over 80 will double by 2030; and, at the younger end of the spectrum, growing numbers of working age adults will be living with disability.

The ageing population, together with increased life expectancy and compressed morbidity more generally will combine to mean one thing: that the population in need of care is bound to expand.

From low level support to round the clock care, in the decades to come more and more citizens will find themselves needing assistance with basic human needs, or will be providing or funding care for others.

Photo of an elderly person's hands
Care Beyond 2020 –  (PDF)

On Monday 31 March Scope and the Future Foundation launch a new report looking at the future of care beyond 2020. It examines the forces that will drive changes in care over the next decade and the implications of these trends for charities, business, governments and citizens themselves.

It identifies many challenges – like how will we fund care for a much larger population of people with care needs? And how will our workplaces adapt to meet the needs of the growing number of employees balancing work with caring for family members at both ends of the age spectrum?

But alongside these difficult questions we also identify opportunities.

The author William Gibson famously said “The future is already here — it’s just not very evenly distributed”. Our report gives us glimpses of the future that exist today. Innovations that exist at the margins now can form the basis of new and better ways of meeting the diverse needs of future, more demanding, care consumers and their families.

For example:

  • Super smart homes and networked mobility aids will maximise the independence and wellbeing of disabled and older people in their own homes and beyond them.
  • Services that allow care users to self-monitor their health and wellbeing in real time, adjust medication or care regimes instantly, and where necessary alert care workers, GPs or family members, will increase people’s capacity to do more without continuous human support.
  • And the promise of Big Data means we can expect the onset of many health conditions like stroke or diabetes to become entirely predictable, allowing for targeted preventative interventions.
  • The growth in social media and smart phone usage, especially amongst older people, will allow care users to stay in touch with family and friends, and exercise their consumer power through online peer review communities that publicly rate the quality of care services.

These are just a few of technological and consumer trends explored in the report.

Our world is changing faster than ever. The challenge of funding care is a burning issue now in 2014, and it is right to focus on it. But, a look into the future tells us that the pressures of demographic change will only exacerbate these challenges unless we look ahead and act on what we see.

 

How have things changed for disabled people in the last 20 years?

This year marks 20 years since we changed our name to Scope.

As we look back at the last 20 years, how do you think things have changed for disabled people? Have things got better or worse?

Here’s what you’ve told us so far. Let us know what you think in the comments below.

“Better in many ways but the ignorance continues unfortunately and now backed by the government with it’s war on scroungers, we are people, we contribute towards society” – Bobbi

“I think things have got better in some ways but if you have a disabled people it is hard to get work.” – Jodie

“Things got better and now they’re going the other way. Very very sad times.” – Tina

Julie Fernandez sits next to a wheelchair
Julie Fernandez, actress, producer, campaigner
“When I meet and talk to young disabled people today… I can see that they have very different attitudes to say, twenty years ago.
We have legislation now to support the rights of disabled people both at home and at work. There are more accessible ramps, more disabled changing rooms in shops and lower reception desks in offices.
It is wonderful to see how much more confident young disabled people are today as they expect equality and rightly so.”

“Things have improved a little in my 50 years of CP but, not much. Still having to fight for everything, benefits, adaptions, equipment.”- Donna

“I’ve just adopted a beautiful 14 month little girl who has CP and even at this young age I’m shocked at the lack of facilities – doors too narrow, badly designed high chairs in all restaurants, no suitable play equipment in parks. If this is an improvement, god knows what it was like before.” – Lesley

Sascha Kindred holding a medal
Sascha Kindred, six-time Paralympic champion:
“I experienced quite a lot of name calling back in school, but I always had my twin brother there to support me so it seemed easier to deal with.
I definitely believe attitudes have changed since then as when I go back to schools now to speak about my experiences as a disabled athlete, the children are genuinely interested and I know a lot of other kids with disabilities have increased opportunities and facilities compared to my time at school.
I still think we need to educate people further though as this will continue to increase awareness of the challenges people with a disability face every day.”

“I think things are much better now, yes welfare reform has had an impact the past few years but overall I feel like the situation has improved markedly especially the last 3 years.” – Michael

“There’s more medical knowledge and laws have been passed to make public places accessible to all regardless of physical condition, so that’s positive.” – Tre

“Better than it was, but still got a long way to go.” – Karl

 

The doctor said ‘she won’t do anything normal children do’ #100days100stories

Micheala first shared her story with us in March 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

Micheala was a 19-year-old city worker when she became pregnant unexpectedly with Venice. At 14 months Venice was diagnosed with cerebral palsy and the specialist told Micheala her daughter would never walk, run or dance. Now 13, Venice walks freely and loves to street-dance. In the lead up to Mother’s Day, Micheala talks about her and Venice’s journey.

Micheala and Venice together on a couch
Micheala and 13-year-old Venice

When Venice was born it was quite a tough time, I mean I was just 20. I was working for the stock exchange and I loved my job, I was earning lots of money, back then there were lots of bonuses.

Venice came early at 27 weeks, and she was in breech. She stayed in the incubator for three months. She had two blood transfusions and a little bit of jaundice, so she was under the lights for a while. Seeing Venice in the incubator was really tough. She was just so tiny.

Diagnosis

My cousin’s son has got cerebral palsy, and one day I came to my cousin’s house to collect Venice and he said, ‘Mick, I think you should get her checked out’. The day came when we had to have this meeting at the hospital, and her dad never made it – it was just me. This specialist said ‘I’ve looked at your daughter and she’s got spastic diplegia’. I said ‘what’s that?’ and he said ‘basically it’s called cerebral palsy and she won’t walk, ever, and she won’t dance, she won’t run, she won’t do anything that normal children do.’ I just cried and cried.

When V got diagnosed I had a choice to make, which was, be a city girl or be the mum that has to support this child. So I thought ‘that’s it now’ – I put work down and now it’s all about Venice.

First steps

She got her first splint at about two or three and she’d say ‘oh mum they’re hurting’ because they would rub her calf muscle. And she still wasn’t taking steps and I used to get a lot of questions at this time from other mums, like ‘ooo why can’t she walk?’

We went to a family wedding when Venice was about three. She was still in her buggy and we were having a family picture. She looked at all the other kids – they were running around – and she looked up at my mum and said ‘Nanna I just want to walk, I want to run’ and my mum just started crying and she said ‘you will Venice, you will’. And she did, she started walking at four, with the help of physio.

Leg operation

When Venice was about eight, her foot did something that we’d never seen before – it literally curled up. That’s when we made the big decision to have an operation – it was Venice’s decision also. That operation has got her to where she is today, being able to get around more freely.

They gave her about eight cuts to her left leg, a few cuts to her tendon, cuts to her calf, cuts to the bridge of her foot, cuts to the top of the foot, and the toe where it had just curled up, to correct the bone. After that there was six to eight week recovery, home with the Zimmer frame – literally a Zimmer frame – like what an elderly person would use – and a caste.

The doctor said to Venice ‘no pressure, you don’t have to go back to school, you can heal at home.’ And she said ‘no’ – she wanted to go back to school. Underneath that caste there were so many stitches – to think about it now, it turns my stomach. Any time the caste got bashed by accident, it was just tears.

Hopes for Venice’s future

Venice smiling
13-year-old Venice has cerebral palsy

I hope Venice continues to push herself and break the barriers, and not be ashamed, or feel uncomfortable. Probably the most valuable thing I want for her is to be independent and not be afraid. I’m sure I will worry if she comes home at 18 and says, ‘Mum everyone’s booking a girly holiday’. But I think the more independent she becomes, the most I’ll be able to let her do what she wants to do. But it’s still quite scary to think that I’ll have to let her go someday, just to be.

Scope’s helpline

Scope’s helpline provides information, advice and support on cerebral palsy and disability issues for disabled people, their families, carers and professionals.

Find out more about Scope’s 100 Days, 100 Stories campaign, and how to get involved.