Building the Right Support

Influencing funding decisions

Universal Credit affects learning disabled people more than other groups of people. We’ve been worried that people with learning disabilities haven’t been included when talking about those effects.

We’ve been talking to members about how universal credit has affected them.

We’ve started working with others to make sure people voices are heard and support is accessible and inclusive.

You can read our full report here.

We have started this work as part of the #Solvesleepins Alliance

#SolveSleepIns September 2019 Update

HMRC Sleep-in Guidance

HMRC have made this 10 minute webinar offering guidance on the rate of pay given to staff who work sleep-in shifts. The webinar

• Explains the Court of Appeal decision in the Royal Mencap Society v Tomlinson-Blake case
• Presents case studies to help you understand how sleep-in shifts should be classed and paid for in accordance with the law.

Please click here to view video

We cannot let COVID turn back the clock for disabled people

We cannot let COVID turn back the clock for disabled people.

It’s time to say it.   The COVID response is telling people with disability: You’re different – a patient to look after, not a person.  A problem to manage, not a citizen.

It’s the return of the old institutional mind-set that says:  you’re vulnerable, and we know what’s best.

At L’Arche, and in Learning Disability England, we’re part of a freedom movement of people with and without disability, against this disabling mind-set.  In our UK L’Arche Communities, we build friendship, freedom and full lives together.

But in lockdown we’ve received hundreds of pages of regulations, to run people’s lives in care and supported living from Whitehall.

The effect on daily life is always clumsy. Often it is discriminatory, harmful, and nonsensical:

• In one L’Arche Community in Southern England, as the whole country went to the shops and visited parents for the first time in months, double vaccinated young adults were still stuck at home because of one-size-fits-all residential care rules.
• In another, 7 friends with and without disability share lives – same house, same kitchen, all double-vaccinated.  But PPE rules mean they haven’t shared a meal for a year.  What other household has to accept that?
• Now, as politicians talk about moving from edict to personal responsibility, the message for people receiving support is again: you’re different.  A healthy, vaccinated, young adult with learning disability can never see the whole face of the people supporting them.  They are the only one in the park accompanied by people in masks.

The rules are undermining the relationships that are the bedrock of our quality of care. And they tell people, “you’re a patient with paid carers, not a person with friends”.

Yes, we need to understand how COVID threatens people with disability. We need to make society safe for people to live their lives.   But this means enabling people, not fencing them in in and removing their rights.

So how do we go forward, not back?

We have learnt in L’Arche it can be done – if we trust people and empower them to make the decisions for their lives.  In the pandemic, our Communities were best able to survive and thrive in the early weeks before the tide of rules began, when they made their own risk-based decisions.

People with learning disability – and those who support them –  are among the most disempowered and overlooked groups.  But if we are empowered, there is literally no-one better to make these complex choices.

Let’s exit lockdown with people with learning disability enabled, not boxed in.

Read more about Learning Disability England’s work on the future of social care here

Housing Choices

Our work on housing choices includes hosting a post with JMS Trust that helps people set up their new home.

Find out more about JMS trust  here 

We are working on questions about

• Supported Living and being safe
• Social Housing and Supported Housing

This includes trying to understand the numbers of unexpected deaths and incidents reported to CQC by providers and shared in the BBC file on 4 programme in February 2019.

There is also a blog by Kevin from L’Arche on what they changed after Joe Ulleri died in hospital. You can read that here

Thank you to all the members so far who have shared information, ideas or examples from their work

If you want to share anything or tell us what you do after things go wrong in a service or what you want to see services do please get in touch

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.