• SEND speak

A Gold Star, the SCA & Lego Grandma

Dear All

Recently I spoke to a dear friend for the first time in many years. My friend asked what I’d been doing for the past 20+ years and I said I’d been a parent/carer due to having two children with SEND and the familiar track that takes us on. My friend was horrified (in a good way), she said “but that doesn’t even have a capital letter!?”

In this issue of SENDspeak, every reference I make to Parent/Carers comes with capital letters!

btw – in the last item, the Lego Grandma has a really good idea!

1. A Gold Star! Have your say on… AfC’s Parent/Carer engagement strategy

2. Richmond LGSCO report – updates on the audit

3. The SEND Community Alliance and how to join

4. ‘As LAs Explore Legal Action Over SEND Funding Plans, SCA Explains What Families Can Do Too’

5. ‘New children’s minister Vicky Ford MUST sign off on continued Ofsted/CQC SEND inspections’

6. A map showing where the most stressed Londoners live

7. ‘It’s just basic survival’: the financial toll of being a carer

8. A grant to buy equipment

9. Contact - Campaigning to close the loophole

10. Coronavirus (COVID -19) public information

11. Events – this month and into next

12. Lego Grandma

1 A Gold Star! Have your say on… AfC’s Parent/Carer engagement strategy

A gold star to Achieving for Children (AfC) for making this survey completely anonymous! I think that’s the first time I’ve seen AfC offer a survey that is properly anonymous.

On the other hand… whilst the survey has been circulated to all support groups and (probably) schools, I wonder how the survey will reach those that do not usually engage or participate at all, whether that be because their child is out of school, or their school does not circulate the survey (hopefully most will), or they’re not part of any group.

Back to the upside… the survey is short and sweet - depending on how lengthy your ‘free text’ responses are. This is a survey worth doing.

“Achieving for Children [AfC]are developing a strategy to guide how we approach participation. As part of this, we would like your views on: what we should include in the new strategy, what we do well and how we can improve. We invite responses from adults, carers, children and young people involved with AfC. This strategy will be universal so not SEND specific.

For the purposes of this survey, participation is defined as:

‘the process of empowering children, young people, parents and carers to influence decisions and ultimately, local services.’

This strategy sets out how we will engage and aims to make it clear to children, young people, parents and carers what they can expect when they engage with us. For our staff, it outlines what we expect of them when they interact with families.

People can give their views here:

The closing date for this survey will be Friday 20th March. A summary of the results will be published on the AfC website.”

2 Richmond LGSCO report – updates on the audit

LGSCO = Local Government and Social Care Ombudsman (LGSCO)

The Independent Auditors continue their audit of Achieving for Children’s (AfC) Richmond EHCPs. This page on the Local Offer gives an update, including how many EHCPs they have audited (cumulative) weekly.

It’s not easy for AfC and it’s certainly not easy for families. Let us hope this is the last time we all watch and/or take part in such an exercise.

On the positive side… initially AfC had provided an AfC e-mail address for the auditors, understandably this did not look independent and they (AfC) received considerable feedback to that affect. There is now a new address. The new e-mail address to contact the auditors is Postal address is LGSCO Review, Ruils, 4 Waldegrave Road, Teddington, TW11 8HT.

All Parent/Carers resident in Richmond have already received a letter with this information and a reiteration of Richmond Council’s apology to families. The letter came from the Leader of Richmond Council, Cllr Gareth Roberts.

Happily, the new Parent Carer Forum (due to formally launch later in March – all being well) have “produced a template to help parents submit additional information to help inform the audit process, this will be sent to you separately from the Parent Carer Forum”

3 The SEND Community Alliance and how to join

The SCA are a new’ish national group and are formed of three national organisations; Special Needs Jungle, SEND Action and SEND National Crisis. They are working hard on all our behalf’s (families and professionals alike).

“There is a crisis in SEND, of this there is no doubt. SEND Community Alliance has been formed to try to ensure that those tasked with fixing it hold the perspectives of families at the centre of everything they do.

Up until now, those who have the power to change things for the better have done everything but that. Local authorities fret about sky-high rates of appeals to the SEND tribunal - that they almost always lose - while politicians scratch their heads over why costs for SEND are increasing.

Meanwhile, families are the ones at the sharp end, yet with little to no power. They are busy caring and advocating for their disabled children and young people, the ones who are being continually failed by a SEND system whose reforms were supposed to put them at the heart of the process. They haven't.

Parents and young people have been locked out of meaningful decision-making for too long. Co-production is largely a joke that's long ceased to be funny. Consultations by councils end with views being disregarded. Their policies and daily decision-making are often unlawful. Many schools fail to involve parents of disabled children where the law clearly says they must. But this is not the wild west - the Children and Families Act is not optional. Adhering to its tenets needs to become a reality - an everyday happening and a partnership at every level.”

More information here:

Joining SCA

“Join SCA if you support our manifesto and you want to help us lobby for a better, well-funded SEND system that truly helps children and young people with SEND reach their potential. There is no charge to join, but if you can, a donation is appreciated to help us do this work.”

You can join as an: Individual, Charity Affiliate, Commercial Company Ally, Parent Led Group Ally, Young Person Ally. It’s a free membership.

4 ‘As LAs Explore Legal Action Over SEND Funding Plans, SCA Explains What Families Can Do Too’

This comment tweeted today by Disabled Children's Partnership @DCPcampaign

“This is really excellent work by @SEND_CA - including a really clear description of a very complicated system and practical steps parents can take.”

The article:

“Councils are talking to lawyers about a potential judicial review of the Government’s new proposals for SEND funding. Will they have the courage to stand up for the rights of children and young people with SEND or will they continue to implement covert cuts?

What will the proposals involve?

Under the new proposals, local authorities will no longer have the flexibility to move funding from general reserves or other council budgets to fill shortfalls in their High Needs budgets. Unless they have permission, they must stay within their Dedicated Schools Grant (DSG) allocation. This effectively means that while local authorities retain the legal responsibility for SEND funding, the Government will hold the purse strings.”

5 ‘New children’s minister Vicky Ford MUST sign off on continued Ofsted/CQC SEND inspections’

Special Needs Jungle, Tania Tirraoro, 18th February 2020

“First thing's first, congratulations to Vicky Ford, MP for Chelmsford in Essex, who has been appointed to be the new Children and Families Minister, which includes SEND, or at least it has so far. May we welcome you to the special needs jungle.

We would like to invite you to meet with us and our colleagues at SEND Community Alliance, the independent, parent-led volunteer organisation that we have formed with SEND Action and SEND National Crisis.”

6 A map showing where the most stressed Londoners live

“London is pretty stressful, right? And now we know exactly how stressful, according to a new study by private healthcare provider Babylon Health. Using the TensiStrength research tool, Babylon analysed 5 million tweets sent from across the UK for signs of stress, then calculated the percentage of stressed tweets coming out of each local authority – including each London borough.”

7 ‘It’s just basic survival’: the financial toll of being a carer

The Guardian, Suzanne Bearne, Saturday 29th Feb 2020

Those of us with children or young people with SEND become ‘Parent/Carers’; this is distinct to being just a Parent. Some of us manage to continue to do paid work, many of us do not.

“Giving up your job to look after a family member or friend may not be something you’ve given much thought to, but two in three UK adults can expect to become an unpaid carer during their lifetime, according to Carers UK.

About 600 people a day quit work to look after for someone who is older, disabled or seriously ill, and the emotional and financial impact on these individuals can be huge.

While research suggests unpaid carers save the UK economy about £132bn a year, the main carer’s benefit, carer’s allowance, is just £66.15 a week if you care for someone for at least 35 hours a week.

Four carers tell us how they make ends meet.”

8 A grant to buy equipment

“The Variety Equipment Grants are designed to help alleviate some of the financial

pressure of funding specialist equipment for families who don’t have the means to pay

for it themselves. Grants are provided for specialist disability equipment that isn’t

available through statutory services.”

This includes in-home and mobile hoists, personal monitors and alarms, sensory equipment, car seats, outdoor play equipment, communication aids and software, bathing, showering, and toileting adaptive equipment, ‘tough’ furniture, defibrillators and the list goes on….

You can apply at any time:

9 Contact - Campaigning to close the loophole

“Increasing numbers of disabled teenagers are being charged or denied school transport after their 16th birthday due to a loophole in the law and council funding pressures.

Our new research, published last week, shows:

🚍 79% of disabled young people are denied or charged for school transport or face disruptive changes when they turn 16

🚍 1 in 10 disabled young people are paying over £1000 a year for school transport”

More information here:

10 Coronavirus (COVID -19) Coronavirus (COVID-19): latest information and advice

“Information for the public on the outbreak of coronavirus, including the current situation in the UK and information about the virus and its symptoms.”

11 Events – this month and into next

#1 Health – Access all Areas

“Do you receive Richmond borough health services and have you used any of them over the past year? Have you had a good or bad experience that you want to share? If so, then maybe you would like an opportunity to share your experiences? If you do, you might be interested in attending the Health - Access All Areas event.

You will sit with other local people and professionals and you'll be asked about your experiences of health services. Everyone's experiences will used to help improve local services.”

Thursday 26th March - 10.30am to 4.00pm

Clarendon hall, York House, Twickenham. TW1 3AA

This is a working event and so is free to attend and lunch is provided. To book a place, please use the link below:

#2 Express Autism Conference 2020

Express cic are holding their 8th annual conference…

Thursday 26th March – 10am to 3pm Glenmore House, Surbiton

Registration from 9:45am First talk 10am. Each talk will include time for Q&A.

There will be stalls for you to browse and speakers during the day. Speakers include:

· Dean Beadle - Autism, Education & Me

· Hannah Clements & Helen Ralston - Flourishing at school: Promoting the well-being and mental health of our whole school community

· Amy Walker - Neurodiversity in work, reasonable adjustments & the benefits of creative differences

Tea, coffee, biscuits and a light lunch will be provided all included in the ticket price.

#3 An Evening with Souleyman Bah; a Para-athlete, Apprentice and more

“Kingston Adult Education are delighted to host an evening with Souleyman Bah, young para-athlete, popular motivational speaker and disabled role model at the King Charles Centre in Surbiton.

You will remember him from the 2019 The Apprentice, where Souleyman made history by becoming the first disabled candidate on the show. He has also appeared on Channel 4’s The Undateables.

He will give you an insight into his rare eye condition, Retinitis Pigmentosa. Refusing to let his disability prevent him from pursuing his goals, he successfully won gold for the 100 metre race at the Junior Paralympic Games in Brazil 2015 and is currently training for the Tokyo 2020 games.”

Thursday 2nd April – 7pm to 8.30pm Kingston Adult Education, King Charles Centre, Hollyfield Road, Surbiton, KT5 9AL

Tickets from Eventbrite:

12 Lego Grandma

Meet the 'Lego Grandma' who builds her own wheelchair ramps

A short article and a video of 1.29 minutes. Very jolly!

“Meet Rita Ebel. She makes wheelchair ramps out of Lego, earning herself the nickname 'Lego Grandma'.

Even on a grey day, little bricks of vibrant colour glint and beckon from various doorways in the west German town of Hanau. Visible from across the square, adults and children alike stop to take a closer look.”

If you have any questions at all, please ask and I'll do my best to find an answer.

With best wishes, Romany



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