Showing posts with label social care. Show all posts
Showing posts with label social care. Show all posts

IDP Series: Private Diagnoses and the IDP Process in Wales

 

Private Diagnoses and the IDP Process in Wales:




What the ALN Code REALLY Says (and How to Use Private Reports Effectively)**

Families across Wales often turn to private assessments because NHS waiting lists are long, inconsistent or inaccessible. Yet many parents are told:

  • “We don’t accept private reports.”

  • “Only NHS diagnoses count.”

  • CAMHS must confirm it.”

  • Private EP reports aren’t valid.”

None of these statements are correct under the ALN Act or the Additional Learning Needs Code (Wales) 2021.

This article explains — calmly, clearly, and legally — how private reports should be used in the IDP process.


1. Are Private Diagnoses Valid for IDPs?

Yes. 100% yes. They are legally valid and must be considered.

The ALN Code states:

“Identifying whether a child… has ALN requires evidence…
This evidence might come from… other services…
It might also come from the child, their parents or the young person themselves.”

(Cod ADY 20.2)
“This evidence may also include specialist services.”
(Cod ADY 20.3)

This includes private:

✔ Schools/LAs must consider private evidence.

✔ There is no legal distinction between private and NHS evidence.


2. Schools Cannot Reject Private Reports

Schools must base decisions on all evidence presented.

The ALN Code requires:

“…using the evidence available…”
(ALN Code 20.19)

and

“…seeking advice from appropriate specialist services when needed.”
(ALN Code 20.20)

This creates a legal obligation to:

✔ Consider private EP assessments
✔ Consider private ASD/ADHD reports
✔ Consider private sensory/OT/SALT reports
✔ Consider independent medical evidence

A school cannot lawfully say:

❌ “We don’t accept private reports.”
❌ “Only CAMHS can diagnose ASD.”
❌ “This doesn’t count unless NHS confirms it.”

They may disagree with parts of a report — but they must:

  • record the evidence, and

  • provide justification if they take a different view.

They cannot ignore it.


3. Local Authorities Cannot Ignore Private Reports Either

Local Authorities must consider:

  • all relevant evidence (20.2, 20.3)

  • all parental evidence (20.2)

  • all specialist evidence (20.3, 20.20)

If the LA feels more assessment is required, they must seek it, not dismiss what exists.

This may include:

But private evidence still forms part of the legal evidence base.


4. What If a Private Diagnosis Conflicts with NHS Opinion?

Contradictions happen.
Private ASD: NHS says “not ASD”.
NHS says “anxiety”: private EP identifies ASD/ADHD traits.
One SALT says “no need”: private SALT says “significant delay”.

The ALN Code expects:

  • consideration of all evidence (20.19)

  • seeking clarification from appropriate specialists (20.20)

  • decisions based on functional need, not labels

✔ The IDP is based on need, not diagnosis.

Even if professionals disagree, functional needs remain:

The IDP must reflect what the child needs, regardless of diagnostic debate.


5. How Private Reports Influence the IDP

Private assessments are often more detailed than school or NHS reports.

They improve:

A. Needs Section

B. Outcomes

Private reports help create SMART outcomes:

  • Specific

  • Measurable

  • Achievable

  • Realistic

  • Timely

C. ALP (Additional Learning Provision)

Often provides concrete, quantifiable recommendations:

✔ “3× weekly 40-minute specialist literacy sessions”
✔ “Daily sensory diet delivered 3× day”
✔ “Visual timetable used consistently”
✔ “AAC device used for all transitions”
✔ “Seating and postural plan to be followed”

D. Placement Decisions

Private reports can show:

  • sensory overload

  • inability to regulate in mainstream

  • severe attendance barriers

  • medical needs

  • trauma impact

This evidence supports decisions about:

  • LA-maintained IDPs

  • specialist placement

  • EOTAS

  • adjustments in school


6. How to Submit a Private Report (Parent Script)

ENGLISH:
“I would like this private assessment to be recorded as evidence under ALN Code 20.2 and 20.3.
Please confirm in writing that it will be considered in the IDP review.”

CYMRAEG:
“Hoffwn i’r asesiad preifat hwn gael ei gofnodi fel tystiolaeth o dan God ADY 20.2 a 20.3.
A allech gadarnhau yn ysgrifenedig y bydd yn cael ei ystyried yn yr adolygiad CTP?”

If they resist:

“The ALN Code requires decisions to consider all relevant evidence (20.19).
Can you put your position in writing?”

Very few will do so — because they know they can’t legally refuse it.


7. Myths vs Truths

❌ “We only accept NHS diagnoses.”

✔ The Code requires all relevant evidence (20.2, 20.3, 20.19).

❌ “Private EP reports aren’t valid.”

✔ EP advice is specialist advice (20.20) → must be considered.

❌ “We need CAMHS to agree first.”

✔ CAMHS is not the decision-maker for IDPs (schools/LAs are).

❌ “We’ll wait for NHS assessment first.”

✔ The IDP must reflect current needs, not planned future assessments.


8. When Private Reports Trigger an LA-Maintained IDP

Sometimes private assessments reveal needs that schools cannot reasonably meet.

Examples:

  • complex sensory needs

  • EBSA linked to severe distress

  • trauma

  • physical disability requiring equipment

  • significant dyslexia requiring specialist ALP

  • multi-agency involvement

  • chronic illness impacting stamina

  • substantial mental health needs

The relevant Code section is:

ALN Code 23.67

If the ALP required cannot be delivered in full at any maintained school, the LA must take over responsibility.

This is the legally correct citation.


9. When a Private Report Justifies an Early Review

Parents may request a review at any time.

The correct citation is:

ALN Code 25.21

Parents can request a review, and the school/LA must conduct it unless unnecessary.

Parent script:
“I request an early review of the IDP under ALN Code 25.21 due to new evidence.”


10. Summary: What Private Reports Mean for the IDP

✔ They are legally valid
✔ They must be considered
✔ Schools cannot reject them
✔ LAs cannot ignore them
✔ They influence needs, outcomes, ALP and placement
✔ They help clarify complex profiles
✔ They often support LA-maintained IDPs
✔ They strengthen requests for EOTAS when appropriate
✔ They help ensure the child’s real needs are captured

Private assessments do not replace NHS involvement — they complement it and give a fuller picture of the child.

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This article provides general information about the ALN Act and ALN Code in Wales.
It is not legal advice. For individual cases, families may wish to seek independent specialist advice if needed.

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

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