Sendac - Cumbria Parent Carer Forum

Sendac - Cumbria Parent Carer Forum SENDAC is for all parents/carers who have a child with an additional need/disability living in cumbria (cumberland/westmorland and furness.)

No diagnosis required! 

Benefits:

- Free SEND training
- Free max card
- updates on SEND services

Update for our Westmorland and Furness SEND families 💙We have shared a joint statement with Westmorland and Furness Loca...
19/12/2025

Update for our Westmorland and Furness SEND families 💙

We have shared a joint statement with Westmorland and Furness Local Authority to explain recent changes to parent carer forum arrangements following local government reorganisation.

Due to a decision made by Contact, SENDAC will no longer cover both the Cumberland and Westmorland and Furness local authority areas, SENDAC will continue as the parent carer forum for only the Cumberland area. Separate arrangements will now be developed for Westmorland and Furness.

We know this news will be disappointing for many families in Westmorland and Furness. Including our previous and current volunteers. We truly share that disappointment. SENDAC remains a parent led forum and will continue to work openly and thoughtfully during this transition.

We want to truly thank all of the families we have built relationships with, that have been part of SENDAC and have placed their trust in us to ensure parents have a voice in SEND decisions. The full statement has been shared with members by email and the link to the statement is below.

If you have questions or would like to talk things through, please get in touch. 💙

https://fid.westmorlandandfurness.gov.uk/kb5/westmorlandandfurness/directory/advice.page?id=xidGX9LttA4

09/12/2025
🗣️ “It’s time the veil is lifted on FASD, which is caused when prenatal alcohol exposure affects the developing brain an...
28/11/2025

🗣️ “It’s time the veil is lifted on FASD, which is caused when prenatal alcohol exposure affects the developing brain and body in utero. With a rate of 2-4% for the general population and more than 27% for looked after children, FASD is one of society’s most pervasive neurodevelopmental conditions.”

So many people believe FASD is caused by excessive alcohol consumption. There is NO known safe amount or time to drink alcohol during pregnancy - it can cause problems at ANY stage. Research shows that even just one drink of alcohol can affect foetal behaviour in the womb 👶🏻🤰🚫🍹

Greater awareness of FASD is needed to avoid these tragic situations that affect some of society's most vulnerable.

28/11/2025

As a “nonverbal” child who couldn’t be understood much until I was 8 years old, I remember sitting at the Thanksgiving table and feeling safe because I could communicate with my close family through gestures and pointing. They understood me, and I never felt pressured to speak before I was physically able to. But when I went to other relatives’ homes, that safety wasn’t always there. Some tried to force me to talk. Others said harmful misconceptions about me right in front of me, assuming I couldn’t hear or understand, when I did the entire time. Being treated as if I wasn’t even there hurt deeply. I felt like the people who were supposed to be closest to me, people who acted like we had a bond, never actually heard me. It made me feel like I didn’t belong, like something was wrong with me, like I wasn’t “enough” because I wasn’t like them.

Inclusion begins with accepting people exactly as they are and where they’re at. Children who aren’t able to talk yet are not choosing silence. There is always a reason. For me, it was childhood apraxia of speech. After more than 13 years of speech therapy, I’m able to talk today, but it took intense work, patience, and support. And yes, I still struggle, but I’m not a victim. I refuse to be.

Please be kind to people this Thanksgiving. Accept all forms of communication— including those who also use communication devices. You never know what someone is carrying or how hard they’ve worked just to be understood.

- Jordan Christian LeVan

28/11/2025

Did you know you can ask for OT or SALT (or other) assessments as part of your child’s EHCNA.
(Template in Comments )

This morning a parent told me their LA refused their request for OT (despite clear evidence of need)

The LA said:

“We only seek advice from professionals that your child is already under. We won’t be seeking advice from OT because we don’t feel it’s reasonable at this stage”

Oh? Okay well erm, on that note
You also don’t feel that sticking to tribunal deadlines, writing specific EHCPs, or being honest is reasonable either, do you? 😒

Anyway here is the ACTUAL law…

During an EHC needs assessment, the LA must get advice from:

ANY person the parent reasonably requests!
(SEND Regs 2014, Regulation 6.1(H)

Not just people already involved.
Not “who we normally ask.”
Not “their current team.”

The whole point of an EHCNA is to involve specialists to assess unmet needs right?

So what’s “a reasonable request”?

OT when a child has sensory or motor needs
SALT- for communication or social communication needs. Physio, CAMHS, Paediatrics and so on.

All perfectly reasonable requests depending on your child’s particular needs.

So what’s unreasonable then?

Asking them to get advice from Beyoncé,
your mate Karen who did a psychology diploma in 1992, or Bob the local plumber.

So if they say….

“We don’t feel your request is reasonable at this time…”
or
“We only seek advice from professionals already involved.”

Remember that’s NOT what the law says.

What to do:

Email your caseworker requesting OT/SaLT (or whatever you need) as part of your child’s EHCNA
(template in comments) ✔️

And if they STILL refuse?

Use IPSEA’s Template Letter 7 to send to the Director of Children’s Services if they fail to listen. ❌
There is never any guarantee as they do as they please (and it often takes a content appeal) but, empowering yourself with the law will always help your case 😘

Always keep pushing forward everyone ###x

🚨 Neurodivergent Artist Call-out 🚨🎨 ‘We are looking for three neurodivergent artists or creatives to create new work for...
20/11/2025

🚨 Neurodivergent Artist Call-out 🚨🎨

‘We are looking for three neurodivergent artists or creatives to create new work for the online launch of our national Peer Network in February 2026.’ 💻🎨🫟

Application deadline: Monday 8th December, 10am ⏰

Each artist will receive a fee of £1,500, to cover the artist's fee as well as any resources and expenses needed to make the final creative piece.

Find out more and apply: https://www.mainspringarts.org.uk/jobs-volunteering

The new Neurodiversity and Emotional Wellbeing Service for Cumberland has now been launched. The service is being pilote...
13/11/2025

The new Neurodiversity and Emotional Wellbeing Service for Cumberland has now been launched.

The service is being piloted for an initial 12 months in the Cumberland area from November 2025.

The service has:

➡ A Neurodiversity and Emotional Wellbeing section on the Cumberland Family Hubs website which has information, advice, and strategies to support families if they feel they need it.

➡ A single point of contact for parents, carers, young people, and professionals to contact the service to receive further advice and support.

➡ A new strength and needs assessment that can be completed with families to understand each child or young person and plan the right support.

💻 You can find out more on the service webpages, hosted on the Cumberland Family Hubs website: https://cumberlandfamilyhubs.org.uk/neurodiversity-and-emotional-wellbeing

📧 Or email the team at NDandEW@cumberland.gov.uk

10/11/2025

Our next ARFID Friends Support meeting for Carlisle will take place after Christmas on 8th January (sorry we cant fit one in before).

10/11/2025

We're in Ambleside today!

Ambleside library community room, 12 - 2pm

24/10/2025

Emotionally based HOME avoidance (EBHA)
(A flipped perspective) ❤️

Bobby is 8. Bobby is suffering from EBHA.
He is dysregulated in school every single day - anxious, hiding, crying, pleading not to go home.

He often clutches his stomach - the pain is constant. Teachers know it’s stress-related, but they can’t do anything. Sometimes, during his meltdowns, he hurts himself. Not because he’s “naughty” or “attention-seeking,” but because nobody listens to him and he’s so frustrated. He’s even started pulling his own hair out.

School know that being at home makes Bobby physically and mentally sick, but the parents keep insisting he’s fine there. Has the parent not heard of masking?

Staff have explained to the parents that something is very wrong - that Bobby needs help desperately, as a child being chronically stressed like this isn’t normal.
The parents reply, “Look, Bob’s fine when he’s with us. The problem is with YOU. You’re doing something very wrong. You need to train your staff better - maybe go on a course on how to look after him properly.”

It breaks the staff. They start wondering if they are the problem.

Sometimes, his teacher refuses to send him home.
For a few minutes, Bobby is happy. He can breathe. He thanks the teachers who care for him.

But then the parents arrive - angry - dragging him back to the car, reminding the school they are “breaking the law” and could be prosecuted if they don’t comply. Bobby screams, reaching out for the staff, red-faced and terrified.
The parents look back at them and say, “He’s fine!”

The school is now in turmoil. Staff who want to protect him feel powerless. His only brief moments of relief are cut short. He’s trapped between the one place that feels safe and the people who are supposed to protect him.

Now, during the day, Bobby lashes out at all his trusted teachers.
He can’t verbally explain why things are so bad at home - he has suspected SEN and difficulties communicating his feelings - but his body tells the story: hyperventilating, vomiting, chronic nausea, sleep disruption, intense anxiety.

Surely his body language is enough proof?
Why won’t the parents listen? Are they blind?

Teachers are desperate to keep him safe in school, but instead, he is dragged home daily - kicking, screaming, begging for help - while his parents tell him to “just stop” and “be more resilient, like your mates.”

This continues for an entire year.
Nobody really gets to the bottom of it.
School begs for assessments to unpick the barriers, but the parents refuse - making up excuse after excuse.

Eventually, Bobby goes silent.
He’s diagnosed with depression at eight years old.
His face is gaunt. He’s lost weight due to the nausea. He has joint pain and feels numb.
He no longer kicks or cries - because it doesn’t work.
He doesn’t smile anymore.
He doesn’t play anymore.
He’s still pulling his hair out.
He has said he wants to die.

Now imagine the safeguarding and social care referrals if this were a real scenario.

If a child showed this level of distress, the response would be immediate, right?
Because the child’s safety would be the priority.

And yet - because it’s neurodivergent children struggling with EBSA - the blame falls on the parents.
Every. Single. Time.

This is Emotionally Based School Avoidance (EBSA) in its most cruel form.
It happens to thousands of families - and I wouldn’t wish it on anyone.

It makes me sick (not just because of what kids like Bobby endure) but because of the systemic failures that allow this to happen. The system literally blames parents instead of safeguarding children.

It ignores chronic stress, anxiety, and EBSA, and it punishes the very people trying to protect their child.

Recovery is possible, it can take a long time.
When my son went through this, I told his school:

“As his mother, I have a duty to safeguard his mental health. I will not physically touch his body in order to get him into school.”

That was the beginning of his glorious recovery.
We were lucky his school were good as gold. But the stories I’m hearing are heartbreaking. If you need help navigating this - then message me anytime.

Remember, Section 7 of the Education Act 1996 states “the education provided must be suitable for a child’s age, ability, aptitude, and any SEND they may have”

Love,
Leigh x

Address

Mardale Road
Penrith
CA119EH

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