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ILG Community Mission Statement

“Creating a space for Personal Assistant Employers to share experiences, get support and unite their voices in order to help shape health and care services across the UK.”

Member Benefits

 

It is FREE to join the ILG Community and once signed up you will gain access to the below benefits immediately. If you are unsure or have any questions before joining please feel free to contact our steering group.

Private Facebook Group

Keep up to date with recent independent living news, share your thoughts and get involved with the group.

Free Online Events

We hold free online events throughout the year on a variety of topics relating to PA employers.

ILG Community Podcast

We provide up to date advice and information for individual employers receiving direct payments or personal health budgets.

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Ask The Steering Group

Ask us a question and we will look to find the answer. Also on this page you will find Q&As that others have asked and shared.

Peer Support Sessions

Get information and advice, and support other PA employers at our online Peer Support sessions. 

Newsletter Archive

Get the latest guidance on the most talked about topics involving Direct Payments & Personal Health Budgets. 

Our Partners

Frequently Asked Questions

What is ILG Community?

A free national group for PA employers across the UK. The group is open to those that employ PAs directly or those who run a budget for someone else.  Any funding source is welcome including self-funders or those who get their funding via Social Services or the NHS.

We cover the whole of the UK and have representatives for England, Scotland, Wales and Northern Ireland.

We offer peer support and provide resources via a Facebook group and members’ website.

How is the group funded?

Independent Living Group provided ILG Community with some start-up funding, which the steering group manages. How the group uses this funding is decided by the ILG Community committee.

What does ILG Community do?

The steering group meets monthly to set our agenda and work on current projects. This past year we have focused on putting the building blocks in place to run the group. Individual members of the steering group attend various meetings to put forward the needs of PA employers. This includes meeting regularly with the Department of Health and Social Care, other existing organisations, regional peer support groups, meetings run by local councils and more.  We have spoken at the House of Lords.

Do I have to be a Mark Bates Ltd policy holder to join the ILG Community?

No. Any individual employer of PAs can join the ILG Community. It is a seperate and independent group. 

Why should I join the ILG Community?

ILG Community is led by a committee of individual employers in the interests of individual employers. The Facebook group is a place where you can reach out to others for support and ask the steering group for guidance and support.  ILG Community has a mission to ensure the voices of PA employers is not left unheard. By joining the community, you will stay informed and will be able to attend a variety of free online events, webinars and peer support session.

How do I sign up?

To join the community, click the “join us” link above and follow the instructions for full access to our suite of resources and archived docs. You will then be directed to join the ILG employer private Facebook group.

What if I don't have Facebook?

You will still have access to our great suite of documents, newsletter archive, podcasts and more. You will also be added to our mailing list and be able to contact the steering group via the “ask the steering group” tab in the members area.

Meet The ILG Community Committee

The ILG Community Committee is comprised of Personal Assistant (PA) employers from across the UK. The group are passionate about creating a national voice to represent PA employers and share good practice. Click here to see the chair of the committee contributing to the public services committee in the House of Lords! (start time 15:11:57)

Jade Hamnett

Jade Hamnett

Chairperson

I live in Essex, have a condition called Ehlers-Danlos Syndrome and use a power chair. Having my personal budget has been life-changing.  Despite that the system can often be very complex and doesn’t always work the way it should.  As a result I became involved with trying to improve the system at a local level.  Being an employer can be very isolating, and so when I was then asked to join the ILG and connect with other employers across the UK I thought it would be an excellent opportunity to help get our voices heard.  I have had a lot of experience campaigning, lead a local access group and have worked for various charities. 

Sato Liu

Sato Liu

Treasurer

Mostly, I feel completely out of my depth dealing with Health and Social Care issues as, prior to my partner’s health deteriorating in 2015 to the point where he required 24-hour care, this was an issue that I had not had to deal with. Once I finally overcame the various hurdles to being granted a Personal Health Budget on his behalf, we employed a team of PAs from 2017 through to his death in January 2021.

However, this was not without its difficulties and in March 2019 I submitted a complaint about the CCG to the Parliamentary Health Ombudsman. Their final report was not completed until October 2021.

For 40 years, in various roles, I have worked almost entirely in the charitable sector representing patient access to complementary medicines and therapies, which also involved lobbying both in the UK and Europe. I was a patient representative on the Parliamentary Group for Integrated Health from 1989 until 2017.

Although now retired, I continue to be involved in many aspects of this work on a voluntary basis.

When I needed support as an employer I was lucky enough to find it via my local DP support team but many are not so fortunate or simply do not have the energy to fight when they are let down by a public body.  I hope that bringing my experience to the ILG community steering group can help other individual employers who might one day find themselves in a position similar to mine.

Brett Bignall

Brett Bignall

Welsh Officer & Policy Officer

Brett has worked as a direct payments adviser for over 20 years and is a DP user himself.

He is a self-confessed employment law nerd with a keen interest in law and social policy. He helped set up the forerunner to direct payments in Wales in 1997.

In his spare time, he loves visiting friends and family across the country on a regular basis.  He loves TV drama, soaps and cars.

Susan Henshall

Susan Henshall

Northern Ireland Officer

Susan has assisted her disabled adult son administer his direct payment package since 2014 and is passionate about personalised safe care & support. She is also a member of Families Involved Northern Ireland ,FINI, which is an informal network of families and family carers across the whole of Northern Ireland seeking to be involved in the planning of services to meet the needs of our disabled family members both adults and children in addition to advocating for their rights to be treated as equal citizens.

Vici Richardson

Vici Richardson

England Officer

Vici lives just North of Newcastle in a seaside village in Southeast Northumberland. She has worked with hundreds of disabled people and their families over the last 13 years. Working as part of Disability Norths Direct Payment Service. 

Recently appointed as Disability North's Chief Exec inclusion, choice and control is something that is extremely important to her not only in her paid role but also as a Mum to a disabled young man. 

"My son has Duchenne muscular dystrophy we w has direct payments since he was 11. He's now 20 and his support has developed with him. Having good person centered support to live his life makes an amazing difference. The key is being allowed that control and trust from the local authority and ensuring you have the flexibility that direct payments allow. "

Agnes Hadden

Agnes Hadden

Scotland Officer & Social Media Officer

I have managed a Direct Payment on behalf of my son since 2004 and his initial budget was for 8 hours per week.
At that time I started working part time as an Information Link Worker for North Lanarkshire Carers Together. This lasted for 10 years providing information to unpaid carers and during that time learned so much about Self-directed Support and experienced first hand the difference it made in our lives.
When our son left school he attended college for 3 years. He really wanted to work with animals so we created employment for him by setting up his own business selling eggs from the family farm. This lasted for 9 years and sadly came to an end as we entered the pandemic in March 2020.
Since then he has moved into his own home with support and is enjoying the independence this gives him.
He is supported by a full team of Personal Assistants employed by myself using a mixture of support from the Local Authority and Independent Living Fund ILF Scotland.
Although we had a Direct Payment since 2004 I feel it is important to remember that Direct Payments date back to 1996 and is not anything new.
The Self directed Support Scotland Act came into force in April 2014, the same day as I started working for Take Ctrl South Lanarkshire which is part of Glasgow Centre for Inclusive Living.
Initially, I was employed as an Inclusive Living Adviser. Since April 2019 I have the pleasure of being the SDS Coordinator, and as part of a team providing much needed information and support to anyone eligible living in North and South Lanarkshire.
Having lived experience gives me an insight into how SDS works and can see things from both perspectives being an unpaid carer and as a professional working for a Disabled People’s Organisation.
Wendy Burt

Wendy Burt

Committee Member

Wendy is a mum to two sons with additional needs. She says, “my sons are amazing men one being a black belt in martial arts the other an avid West Ham supporter with a paid job.”

Wendy undertook the Partners in Policymaking leadership course in 2005 which she describes as life changing. She has coordinated the Essex Carers Network since 2007 which is a network of families caring for a family member with a learning disability which may include autism too. Wendy says, “Many of our families employ staff to support their family member and have experienced the good and the not so good side of doing this. As a network we want to make sure our families experiences help to inform what policy and practice looks like going forwards and we feel that ILG Community is a great vehicle to support this."

Wendy is passionate about true coproduction and wants to see a community where everyone belongs.

Sarah Rose

Sarah Rose

Social Media Officer

Sarah lives in East Sussex and has a severe form of Congenital Muscular Dystrophy called Ullrich CMD. She has been employing PAs for 23 years. As her needs have changed, Sarah’s care is now funded by NHS Continuing Healthcare (CHC). via a PHB. 

Having 24hr support in place has meant she can live independently, work and travel - essentially it provides the foundations needed to get on with living life. Sarah manages her own care and employment responsibilities. She has a number of other voluntary roles including being Trustee Co-chair of Pathfinders Neuromuscular Alliance and part of the Peer Leadership Network. Sarah enjoys crosswords, crafting and spending time with family and friends in her free-time. 

Rachel Knowles

Rachel Knowles

Website Content Officer

Rachel Knowles is a PHB user, using a third-party agency to employ a team of PAs who support her to live independently at home in Bamber Bridge, near Preston, in Lancashire.

Rachel says, "I suffered a spinal cord injury in 1986, the result of a RTC, following which I became reliant on care, for many years carried out by family. I studied at college and university, gaining a degree in business and computer studies, then secured my first job working for the Department of Social Security in the disability working allowance department. I moved into a flat which meant I needed social care for
the first time which meant direct payments were an option. This was in the late 1990s.

I have employed PAs under social services for many years, and now have a PHB. I became an independent living advisor in 2004 working with the Rowan Organisation, then Lancashire Support Services as a team leader, which became Lancashire Centre for Independent Living, where I became the operational projects director. I worked for two other organisations before returning to Disability Equality as a managed accounts development worker, and then as an independent living advisor, which is my current role.

I also lead the peer support group of Lancashire, which links in to the ILG Community. 

I have been involved in many projects, working with the Department of Health, local authorities, and
various user led organisations, to increase the uptake and better understanding of self-directed support, and I welcome the opportunity to work with all the stakeholders within health and social care, to further develop the roles of Personal Assistants working with individual employers."

Jenny Hurst

Jenny Hurst

Website Content Officer

Hi, I am Jenny. My two main passions are my cats and helping people access the right support to enable them to live the life that they chose.

I am a full-time electric wheelchair user with complex health needs, however, I am a great believer in the social model of disability. The Social Model says that it is the barriers that society puts up, not our impairments, that disable us. And that adaptations and changes in society can break down the barriers.

My team of PAs - funded jointly by my local council and ICB - and my vast array of equipment, help me break down those barriers.

I work as an Independent Living Coordinator in a London DPO (disabled people’s organisation), and I am part of a local campaign group.

You will often see me in Zoom meetings with a cat on my lap, or walking in front of the camera.

Alex Cowan

Alex Cowan

Committee Member

Alex Cowan is an educator, writer and performer, giving talks,
presentations, workshops, and peer advice to promote a holistic understanding of disability and also specialises in disability and sexuality.

Alex is chair of Ealing's Direct Payment Users Group. She also chairs the North West London Wheelchair Users Group. She is a member of the Wheelchair Alliance User Engagement Group and also Equipment Matters Group, which looks at service provision for community equipment in England. She is a member of Ealing Older Adults, Disabilities and Long Term Conditions Partnership Board.

Alex encourages us to think beyond the prescriptive, disablist
limitations by which we live, and recognise and celebrate the difference and humanity in everyone.

Alex is a passionate advocate for good social care provision and the support for PA users. She has been a PA user for 22 years.

Don't Be Shy

If we didn’t answer all of your questions, feel free to drop us a line anytime.