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