CARERS WEEK SPECIAL - When No One Talks to Each Other, Families Fall Through the Gaps

⭐ CARERS WEEK SPECIAL

When No One Talks to Each Other, Families Fall Through the Gaps

Why Poor Communication Between Services Hits Unpaid Carers the Hardest

Across Wales, thousands of unpaid carers shoulder the emotional, practical and financial responsibility of supporting children with Additional Learning Needs. During Carers Week, we want to highlight something every family in our community understands:

📌 Most of the system’s problems happen not because people do not care, but because the people who do care are not talking to each other.

When communication breaks down between schools, ALN teams, CAMHS, social care, transport, therapies, health boards, and local authorities, unpaid carers become the only ones holding it all together.

And the weight is enormous.

The “Joined-Up System” That Rarely Joins Up

Policy documents promise:

Parents often experience:

contradictory information
missing referrals
circular instructions
broken feedback loops
long delays
no single point of contact

When professionals do not pass information to each other, unpaid carers become:

This is not partnership working.
This is a recipe for burnout.

How Communication Failures Impact Families

Parents become the “key worker” by default

Families tell us the same thing over and over:

“If I do not chase it, nothing happens.”

Parents are left tracking:
🧩 who said what
🧩 when it was said
🧩 what was agreed
🧩 who is responsible
🧩 who is missing from the chain

This is unpaid labour, and a lot of it.

Decisions are made without parents present

Carers frequently discover that:

decisions were made at meetings they weren’t invited to
schools assumed health would update them
health assumed education had spoken to the family
the LA assumed school had communicated everything

This deepens anxiety and erodes trust.

Crisis becomes normal

When nothing is coordinated until the child is already in distress, families live permanently braced for the next emergency appointment or phone call.

Chronic stress becomes normalised.

⭐ A Practical Toolkit for Parents and Unpaid Carers

These strategies protect your emotional well-being and give you a clearer record when systems break down.

1. Never make a phone call when an email will do

Phone calls disappear. Emails do not.

If you must phone, follow up with:

“It is my understanding that on X date, Y was agreed.”

This protects you later.

2. Always expect to need evidence later

Keep:

dates
names
times
emails
screenshots

You will thank yourself later during IDP reviews, transitions, or disputes.

3. Expect to become the “key worker” from day one

It shouldn’t be this way, but planning for it reduces the shock and frustration.

4. Do not be afraid to make a Subject Access Request (SAR)

A SAR lets you see:

reports
meeting notes
internal emails
decisions
referrals
safeguarding records
case history

How to make a SAR (Step by Step)

Step 1 — Email the Data Protection Officer

“I am making a Subject Access Request under the Data Protection Act 2018.
Please provide all records, emails, notes and communications relating to me / my child [Name, DOB] between [date range].”

Step 2 — Attach ID
A driving licence or utility bill is fine.

Step 3 — Time frame
They must reply within one month.

Step 4 — Your rights
You may:

request corrections
challenge inaccuracies
ask for missing documents
complain to the ICO if delayed

SARs often reveal missing referrals or misunderstandings that explain why support stalled.

5. Use our FB group to vent and connect

Isolation harms wellbeing.
You are welcome to:

talk through difficult days
ask for advice
request help writing a script or letter
ask for help building a social story
request signposting
share emotional overwhelm

Community protects us. You do not need to carry this alone.

⭐ Carers Wales: Who They Are and How They Help

Carers Wales is the national organisation supporting unpaid carers.
They offer:

helplines
carers rights information
practical workshops
local carers centres
peer support groups
guidance on benefits, employment and wellbeing
Carers Emergency Cards (varies by area)

Find your local Carers Centre

Use the postcode search tool here:
https://www.carersuk.org/wales/help-and-advice/local-support/

Carers Wales is an essential source of support for many families balancing ALN responsibilities with work, caring for siblings, or navigating complex health and education systems.

⭐ Money Matters: Financial Support for Carers

Being a full-time unpaid carer often means:

giving up employment
reducing hours
losing career progression
absorbing increased household costs

It adds financial strain on top of emotional strain.

1. Check you are receiving all benefits you are entitled to

Use the Turn2Us Benefits Checker:
https://benefits-calculator.turn2us.org.uk

This tool identifies:

Families are often missing benefits worth hundreds of pounds a month.

2. Use MoneySavingExpert for budgeting help

Martin Lewis is one of the UK’s most trusted financial educators.
His team provides clear advice on:

reducing bills
debt relief
budgeting tools
special energy grants
cost-of-living advice
carers cost-of-living entitlements

Start here:
https://www.moneysavingexpert.com

⭐ Social Care Support for Disabled Children and Adults in Wales

1. What Child Disability Services can offer

Support varies by Local Authority but may include:

short breaks or respite
direct payments
equipment and adaptations
behaviour support
occupational therapy
family support workers
early help teams
social care assessments
emergency care plans

Families can request a Child in Need (CIN) or Disabled Child assessment under the Social Services and Well-being Wales Act.

Your child does not need a diagnosis to request support.

2. What Adult Disability Services can offer

This support is based on the person’s needs, not diagnosis.

It may include:

direct payments
supported living
personal assistants
college or day provision
employment and training support
independent living skills programmes
transport/travel training
respite and short breaks
assisted technology
social support

Every Local Authority must assess an adult’s needs on request.

3. When transition happens (Child to Adult Services)

In Wales, transition planning should begin at age 14.

Key rights:

A young person can keep their IDP until 25
Education, health and social care must plan transition jointly
Parents and the young person must be fully involved
Plans must consider education, health, housing, employment, and community support
No young person should be left without a plan between services

Many families do not know transition planning should start this early, which is why things feel rushed or chaotic later.

⭐ Conclusion

Unpaid carers hold together the gaps between education, health and social care.
They should not have to act as key worker, case manager and crisis responder all at once.

During Carers Week, and every week, Learn Without Limits CIC acknowledges:

the emotional load
the financial sacrifices
the exhaustion
the invisible labour
the strength
and the love that keeps Welsh families going

We see you.
We hear you.
And we will keep fighting for systems that actually communicate with each other — so our carers do not have to carry the entire load alone.

learnwithoutlimitscic.org

Get involved with building our App, which is built by parents and young people to answer the questions we ask, so that we get the information we need as we need it by providing new toolkits every month.

Learn without Limits CIC Blog