Covid 19 and the aftermath – a personal perspective!’

But in the 18th month of the covid-19 pandemic, I am not sure that I am on the winning side of the war.

My son Simon and I both feel the pressure of our ‘shielded’ lives.

Simon’s usually busy life (and mine) changed overnight. So many of his daytime activities vanished and grateful as we are for the gradual recovery of people and places, there is still the real terror of what would happen if either of us got ill.

Simon does not like masks. He needs face recognition for good conversations. I echo his wish to ‘see people smile again!’  But we cover our faces and brave the outside world.

Many of us will need a ‘re-entry’ strategy to cope again with what once seemed very safe and ordinary lives. For now we tread carefully.

In the pandemic, we have learnt some very good things about community and human kindness.

But many of us also feel that we have experienced ‘house arrest’ and solation and it’s hard.

Now, we need urgent shared conversations’ about how we will live through and beyond the covid-19 crisis.

The Government will no doubt publish a 2021 Winter Plan and I would like to see people with learning disabilities and their families contributing to the big conversation that we need in order to survive the winter and of course to finally reform social care.

The 2020 Government’s Winter Plan asked that we should ‘put co-production at the heart of decision-making, involving people who receive health and care services, their families and carers.’ 

The 2020 Adult Social Care Covid 19 ask Force emphasised the need to ‘find new and innovative ways of providing outreach, virtual contact, short breaks and wider support’.  

So, as a way of moving forward to recovery and in the true spirit of co-production, can I suggest that we create our own ‘Covid Recovery Collection’?   

Stories matter and good things always happen from small beginnings – so can we provide the can-do- evidence that will inspire, encourage and enable the world to open up safely again?

Maybe we need to change the language when we talk about social care. TLAP, with Making it Real, underlines the importance of real communication. The Germans, reforming their social system a decade or so ago, talked about ‘Lebenshilfe’, getting a life.

The Paralympics start in Tokyo next week – challenge and opportunity for many disabled people.

But as a competitor, Tony Parsons, said to the Sunday Times today, we still need an international campaign to end the invisibility of so many disabled people.

Many of us did feel invisible during the pandemic but now is our opportunity to come forward and share in planning a different future. What we say can become what we do.

In the last year of the Second World War, aged three years old, I saw my house bombed – everything destroyed, crushed under rubble.

I remember standing screaming until a kindly emergency worker took my arm. ‘Don’t worry love’ he said, ‘sometimes when things get knocked down, they get rebuilt better!’

He was right, the house was rebuilt ‘better’ and the UK got the NHS and the welfare state.

In many ways Covid 19 has been a third world war. But remembering my house being rebuilt and the NHS being created with no money whatsoever, I have hopes for the future.

Let’s become visible and codesign both the social care future we want and importantly speak up about how we recover from Covid.

Helping to make self-advocacy stronger

Learning Disability England members are working together to help make self advocacy stronger by:

• Helping to find and share evidence on what difference self advocacy makes
• Connecting self advocates and sharing information on what self advocacy groups there are
• Supporting a self-advocacy movement working towards improving health through rights.

Connecting people – list of self advocacy groups in England

Working together

Sharing Self-Advocacy Best Practice sessions

Spokespeople

Health Through Rights – Self Advocacy as a Social Movement

Ask yourself, whose social care is it anyway?

“I joined Advance in December 2020 but have worked in the sector for many years.

Joining an organisation in the middle of a global pandemic was daunting and challenging – but what I have seen in the care and support provided by Advance has really inspired me.

Having not had the opportunity to get out and about very much due to the timing of my joining, I felt nourished by spending time with people and the interactions I observed, the stories I was told and the compassion and respect that was evident between the people I met and their support workers.

I have worked in social care since 2002 and I have never worn a uniform. Even then, we tried to be discreet about our ID badges and our paid roles in people’s lives, we tried to be human about our work.

As a Support Worker, part of my role was to help people be a part of their community, not to draw attention to their disability but their ability, their contribution.

Whilst visiting people this week, there was a clearly visible difference between Customers and Colleagues – those wearing a mask and those not. The mask serving as a physical reminder, a uniform, ‘I am paid to be here, you are vulnerable’.

If you have a learning disability or mental health need you are vulnerable, you need a bit more cotton wool than everyone else, you can’t take the same risks as others, government guidance makes decisions about what happens in your home.

We still await the Government’s detailed proposal to reform social care. The Health and Social Care white paper and the National Disability Strategy failed to deliver on this but whilst we continue to wait, people’s lives, the only life they have, is on hold.

We need to be it, lead it, make it happen in our everyday lives, our interactions, our language, culture and dare I say policies.

Let’s stop talking about co-production and ensure it’s just what we do, that everything is done with respect, driven by the individual, for the individual, enable them to control their own care and support no matter how it is funded or where they live.

Make sure all services are working together and hold them (and ourselves) to account when they are not.

Ask yourself, who’s social care is it anyway?”

Sinead Mchugh-Hicks is Executive Director of support at Advance Housing & Support providing services across England.

Being part of the future of social care

In April 2021, Learning Disability England members got together to talk about the Social Care Future Inquiry.

The members in that meeting were self advocates, family members and paid supporters.

Our members are using what’s happened in their lives and their views to help improve social care for people with a learning disability.

Task Force Advisory Group and social care reform

If you have heard politicians debating social care in the last few weeks, you would think that social care is just for older people and that the main problem with it is money.

Many people with learning disabilities and autistic people know that neither of these things are true.

Social care is also about helping people of all ages to live well, when they need extra support to do ordinary things like live independently, take part in community activities, or go to work.

It is true that councils are not given enough money to run good social care services for everyone who needs them.

But even many of those services which do have enough money need to change to fit with how people want to live their lives.

People with learning disabilities and autistic people and people working in organisations and councils came together during the pandemic to help the government to understand and respond to the impacts of COVID-19 on people and families.

The group was co-chaired by Rachel Moody and Trevor Wright, both Experts by Experience and Alex Fox of the charity Shared Lives Plus.

We fed our ideas back to the then social care Minister Helen Whately MP and other people in the government and in councils. We also shared what we’d learned about making our group more accessible, which it wasn’t to begin with.

Read the response from the Co Chairs to the Task Force here (easy read)

We did make recommendations about money and equipment for social care provider organisations which had many problems when the pandemic started with getting and affording PPE, tests and the money and support they needed to work in ways that kept people safe from infection.

We also wanted the government to do more to make sure that accessible information about the pandemic was produced in time, and to work with local user-led and community groups to help people find their way to and through that information.

People themselves need to be involved in co-producing accessible information and all kinds of organisations and services, not just social care ones, need to take it much more seriously so that people with learning disabilities and autistic people don’t end up confused, frightened or unable to do ordinary things when rules change.

Many day support services stopped during the pandemic. Some don’t look like they are going to open again. This has left some people very isolated and some families struggling to cope.

We recommended that councils do more to find out who is struggling, including people and families who didn’t get any social care before the pandemic but might need it now.

No councils should assume that someone doesn’t need a service just because they appear to have ‘managed’ without. Any decisions about changes to support need to be made with people and not rushed.

We heard that loneliness and isolation has got worse through the lockdowns.

We recommended a government funding plan for voluntary, community and social enterprise (VCSE) organisations to support funding people and families who may be at risk of crisis.

There is a need for investment in community building in the short term, through the VCSE sector, and for the long-term social care reform plan to have a strong focus on communities, inclusion and the role of the VCSE sector.

It’s good that there is now a national autism strategy. We called for a whole-life learning disability strategy too.

You will see that these ideas are about much more than social care services and how to pay for them: they are about people being able to live good lives!