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We started the morning by discussing how we felt about the roadmap for easing the current lockdown recently announced by the government. Whilst there is a feeling of optimism with the prospect of a gentle return to normality around the corner, there is some wariness around rushing too fast and a call for us all to be mindful of the risks.

At the time of meeting, the government announced it’s U-turn decision to offer Covid vaccinations to all adults with learning disabilities after significant pressure from the charity Mencap and activists within the neurodiverse community. Mencap ambassador Jo Whiley’s story of how she was offered a vaccine before her sister Frances who has learning disabilities, brought the issue to the attention of mainstream press leading up to the governments decision. However, it was too late for Frances, who contracted the virus following an outbreak at her residential home on the day of the announcement. After a challenging time at hospital Frances is now recovering at home. Read more:

We also welcomed the news that vaccinations are being offered to unpaid carers.

For further information on the lifting of restrictions visit:


We heard of respite services that have had to scale back or in some instances withdraw the hours offered to families. Family carers are feeling particularly exhausted by the load they are carrying day-to-day and need respite away from their caring responsibilities so they can plan for the future. This planning is crucial in organising the long-term care of their loved-ones for example applying for and managing a Personal Health Budget or Direct Payment to employ PAs to support their family member. Or simply having the thinking space to set aspirations for the future and plan them in a methodical way. Some parents spoke of how the pandemic has brought questions about life in the future for their loved-one into sharp focus. We wish for a post-covid world where there is greater understanding and care for others to enable fuller integration and participation in community life.

Finding the right Support Workers and PAs

We talked about how challenging it is to find Support Workers and PAs with the right experience, skill set and values to support people with complex needs and especially individual who present behaviour that may be seen as challenging.

We discussed how it can be challenging to find people through Support With Confidence the self-employed PA noticeboard for East Sussex. The noticeboard largely caters for older people seeking help around the home and support with shopping. Searching through the listings of PAs to find someone suitable is extremely time-consuming. We explored how a bank of specialist support workers experienced in working with people with complex needs would be extremely useful for families in search of support. Trusted support workers could then also work between individuals and families.

The Support Collective will be sharing the experiences of family carers and employers around recruiting support workers to influence the recruitment systems currently on offer through our local council and Clinical Commissioning Groups.

Take part and support others to be included in the next National Census on Sunday 21st March

The census is a survey that takes place every 10 years. It gives us the most accurate estimate of all the people and households in England and Wales. The information shared is used to decide the funding and design of public services including transport, education and healthcare.

  • It will be online, but paper copies will be available for those who need them.
  • Everyone must complete the census. Legislation made the modern census a legal obligation in 1920.
  • The information collected in the census remains anonymous for 100 years.

If you care for someone who cannot complete the census themselves or does not have capacity, there is complete guidance on how to complete the census on behalf of someone else on the Census 2021 website.

There is more information and resources on the Census website, including communications material (print and digital), over the phone, online and local support:

Organisation we have been catching-up with through lockdown include:

Little Gate – Help people with learning disabilities and autism into paid work:

The Makaton Charity provide training and resources for the use of signs and symbols for communication and to support speech. We teamed up with Makaton to offer Level 1 training to the Support Collective. Places booked up fast, so if you missed out this time round, we are hoping to offer more funded Makaton training later in the year.

Independent Lives is a user-led charity working with people with support needs and carers, to enable people to lead full, active and independent lives. We are grateful to have partnered with Independent Lives to offer free training to families who employ support teams.

The Independent Lives website is home to a whole host of useful step-by-step guides on managing a Direct Payment and employing a PA/ Support Worker:

Independent Lives also run a payroll service for people with a Direct Payment:

If you would like to share organisations and initiatives that have made a difference to you during this challenging time, please email [email protected]

Next Support Collective online meet-ups:

Thursday 18th March 2021, 11am-12pm – for parents and carers supporting children and young people

Tuesday 23rd March 2021, 11am-12pm – for adult age individuals with complex support needs, their families and carers

To join the Zoom, email Esther for a link, [email protected]


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