Marie’s January & February 2023 Update
I don’t know why I am surprised that it quickly comes around that I need to sit and write these updates. I am sure someone has put us on fast-forward as the last two months seem to have gone by quicker than normal.
Active in April
We are planning on running Active in April again this year. For new members who are not aware of what this is. It is a fundraising campaign we run each year. You sign up via Just Giving (link below) and can walk, run, skip or wheelchair around the miles you chose to do. You can do 15, 30, 60 or 100 miles. We have a separate Facebook page to allow you to follow all our participants progress; https://www.facebook.com/groups/2932880956958980
This campaign has been a fantastic fundraising generator for our charity over the last two years. The Active in April fundraising has helped the charity to support the Make a Difference Grant and running the family weekend every 12 months as opposed to every 18 to 24 months. Please join us in raising money for our charity and sign up at
Family Weekend
We are busy planning the next family weekend which will be run at the Hilton DoubleTree Coventry the weekend of Friday 5th May to 8th May 2023. Booking forms have been sent out by email and post and a further copy is attached with this update. If you would like to join us and have not yet returned your booking form.
We will be running a raffle again this year at the family weekend and welcome donations of raffle prizes. If you have raffle prizes to donate, please email details to support@sturgeweber.org.uk.
AGM
We will run the AGM at the Family Weekend on Sunday 7th May at 11am. We appreciate that not all members will attend the Family Weekend, and we will arrange for any members wishing to join over Zoom to be given an opportunity to do so. The AGM pack will be sent to members with an opportunity to raise any questions before the AGM. If you will not be in attendance and wish for an AGM zoom code, please email support@sturgeweber.org.uk.
Trustee Training
In January we had the pleasure of doing Trustee Training with our volunteer Nicola Colenso. The support the Trustees receive from Nicola is invaluable. Nicola was previously the Head for 26 years of Petty Pool College, which is a vocational college which provides education and training for young people with learning difficulties. She in July 2021 set up her own business called Let’s Farm, which is a farm in Winsford which is a real working community farm for young people with learning disabilities.
Nicola has been supporting the Trustees since 2021 and we have had the pleasure of trustee training before. At that time, we underwent a SWOT (Strength, Weakness, Opportunity, and Threat) analysis of the charity. We also undertook a piece of work where were looked at the SWOT analysis and planned the work we as Trustees needed implement. In this training session we went over that list, and I am pleased announce of list to implement we have done the majority.
We used the training session to highlight the areas of improvement we need in the team of Trustees. This resulted in us creating job descriptions for 3 new Trustee’s roles. A recruitment campaign is currently underway.
New Trustees
Over the last two months we have advertised for three new Trustees. The roles we wish to fill are IT/Digital Trustee, Engagement Trustee and Fundraising Trustee, the job specification for each role is attached. We are pleased to note we have received one application for a role but wanted to email these with this update to all members to ensure that all are invited to apply to become part of the Trustee team and help the current Trustees move the Charity forward.
Contact
As you may be aware I have in the last year worked with Contact to assist in their campaign on the cost-of-living crisis and how this affects disabled people and their family.
In February I was contacted by Contact and asked to take part in their recruitment process for their new CEO. I met alongside 4 other people with the recruitment agency to discuss the interview process. The following week we spent a day interviewing 5 applicants for this role. This was done via Zoom, and I found it a really good experience and thoroughly enjoyed the day. It was a fantastic opportunity for me as Chair to look at how a larger charity with many paid staff is run and look at their strategy and vision for the future.
One of the reasons I did this piece of work was that I want to grow relationships with other charities to allow us to share information and support.
Last week I received an email from Contact with a voucher for £50 for highstreetvoucher.com to thank me for my time in participating in this process. All Trustees and volunteers donate a considerable amount of energy and time to our charity, and I do not feel that I should be rewarded for doing this on our behalf or in my role as Chair, so I am donating this to the family weekend raffle so a member can benefit from this.
Special Assistance at the Airport
It is the time of year where some families are looking at booking a summer holiday. Have you every applied for special assistance at the airport? If you are traveling with some who has a disability, reduced mobility or difficulty with communication or social interaction you have a legal right to special assistance when you travel. This applies to any flights out of the UK or anywhere in the EU.
You will need to declare your disability to the airline in advance of travelling (no later than 48 hours before you travel) and they will confirm if you have been accepted for special assistance.
Special assistance can cover: –
- Your journey through the departure airport
- Boarding the aircraft and during the flight
- Disembarking the aircraft
- Transferring between flights
- Travelling through your destination airport.
You can book this for both sides of your journey and you will usually be offered to choose your seat on the plane for free (saving on the usual fees)
Benefits
Do you know if you are claiming the benefits you are entitled to? These include:
Disability Living Allowance – £24.45 to £156.90/week – DLA for children is a tax-free benefit for under 16s to help with the extra cost caused by a long term illness or disability.
Personal Independence Allowance – £24.45 to £156.90/ week – PIP is a tax-free benefit for people aged 16 or over who haven’t reached state pension age to help with the extra cost caused by a long-term illness or disability.
Carers Allowance – £69.70/week – for carers rather than the disabled person it is designed to provide extra money if you care for someone for at least 35 hours per week and they get certain benefits: –
- Personal Independence Payment – daily living component
- Disability Living Allowance – the middle or highest care rate.
- Attendance Allowance
- Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit
- Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension
- Armed Forces Independence Payment
- Child Disability Payment – the middle or highest care rate
- Adult Disability Payment – daily living component at the standard or enhanced rate
You cannot claim this if you earn more than £132 per week. Do look at this as certain things can be deducted off your income go to www.gov.uk and search carers allowance.
Attendance Allowance – £61.85 or £92.40/week – Tax free benefit for people who are state pension age or over, have a disability and need someone to help look after them.
Employment and Support Allowance – up to £117.60/week plus top ups – ESA is aimed at those who can’t work because of illness or disability.
Access Card
Rather than having to prove you need special assistance or reasonable adjustments made, i.e., at music venues or with a service provider. A solution to this is to apply for an Access Card, which costs £15 for three years.
You will need to fill in a form and provide evidence of your disability i.e., a letter from your doctor. You will then be sent your Access Card which will display symbols of your relevant needs e.g., difficulty with standing or queuing, wheelchair access, urgent toilet needs. See the website for a full list.
The idea is that whilst this is not necessary always to get assistance it is meant to make it easier and be more discreet. www.accesscard.online/
Max Card
The Max Card is a two-year discount card for foster families and those with children and young people who have additional needs (up to age of 25).
It is provided by local authorities and selected charities and get families free or discounted admission to attractions across the UK. Click on the link to see the venues https://mymaxcard.co.uk/venues/.
The cost of the card varies between authority and charity use the following link to apply https://mymaxcard.co.uk/local-distributors/.
Cuppa and Catch Up – all.
The next Cuppa and Catch Up for all, was announced to be run on Sunday 21st March at 10am. There is no Sunday 21st March it is either 19th or 26th. This will now run on Sunday 26th March at 10am as the week before is Mother’s Day. To register an interest to attend please email support@sturgeweber.org.uk. The Zoom code will be sent via email and announce on the members only page on Facebook.
Friends of Sturge Weber UK/Trustees
Do you have time to volunteer at the family weekend? If you would like to help and volunteer, please contact support@sturgeweber.org.uk.
Grant applications
More Make a Difference Grant applications have been released since our last update. If you need help from the charity, the grant application form is available via the website https://www.sturgeweber.org.uk/wp-content/uploads/2021/10/Make-a-Difference-application-form-1.pdf and needs to be sent to support@sturgeweber.org.uk.
Reading suggestion
I recently bought a book called “Your child is not broken” by Heidi Mavir. After a recent review of Annie’s EHCP which brought me to my knees with the fight I needed to bring our local authority to task about the failures in the many services for SEND not only for Annie, but also other children in the authority whose parents are burnout and not able to advocate for their children. More on this in another update!
The book spoke out to me as it referred to fighting battles and believing in your ability as a parent to advocate for your child.
Despite being Chair of Sturge Weber UK I am just a mum who loves all her children and who is fighting battles I never thought I would have to, to get the services and support for Annie, despite having a EHCP and being under the SEND team since she was two.
It was a quick read but just what I needed to remind me that:
- You are right to question the professionals! Not always are the SEN officers and supporting services right in their views of your child. Sometimes our children do not fit into the boxes they are taught to fit children into.
- There is a medical model of disability and social model of disability. The medical model looks for ways to fix the disability and the social model looks at how society can best support and accommodate disability rather than fix them.
- My child is a glorious human and have always been, despite their neurodiversity. Loving them fiercely will strengthen our understanding of their needs and hopefully model to those around them the importance of seeing them as an individual.
- You are entitled to go easy on yourself.
It is not a bible on parenting a disabled children or adult, but it did have some very good points I forget to remind myself of.
Thank you.
We would like to thank fundraisers for January and February who were:
Geosynthetics
Denise Inman
Memory of Rosalind Masson
Memory of Richard Kemp