When your child has a rare condition, you quickly learn that the education system wasn’t built with them in mind. You also learn that the law was at least in part and that knowing your rights can be the difference between your child receiving an education… or being left behind.

One of the most misunderstood protections is Section 19 of the Education Act 1996.
For many families, it becomes a lifeline.
For others, it becomes a trap.

This blog breaks down what Section 19 actually is, what it legally obligates Local Authorities to do, and the risks parents need to be aware of especially when navigating long-term health needs or rare conditions.

What Section 19 Actually Says

Section 19(1) of the Education Act 1996 places a legal duty on Local Authorities to:

“Make arrangements for the provision of suitable education for children of compulsory school age who cannot attend school because of illness, exclusion or otherwise.”

This is often referred to as the Section 19 duty.

The key word here is otherwise.
Courts and the Local Government Ombudsman have confirmed that “otherwise” is broad and that it covers any situation where it is not reasonably possible for a child to attend school, not just illness or exclusion.

For children with rare conditions, this is crucial.

When Local Authorities Must Step In

Local Authorities must arrange suitable education when:

A child cannot attend school due to health needs, including long-term or fluctuating conditions.
A child is likely to be absent for 15 days or more (consecutive or cumulative). This timeframe is common practice, even though not written into the Act.
A child cannot access full-time, suitable education without alternative arrangements.
The reason for absence falls under “illness, exclusion or otherwise.”

Local Authorities must consider each child’s individual circumstances and be able to demonstrate how they reached their decision.

What “Suitable Education” Means

The law requires that the education provided must be:

Full-time, unless part-time is in the child’s best interests.
Appropriate to their age, ability, aptitude and special educational needs.
Delivered at school or elsewhere including online or remote provision.

This means a Local Authority cannot legally offer a token gesture, a worksheet pack or a few hours of tuition if it does not meet the child’s needs.

Why Section 19 Matters for Children With Rare Conditions

Children with rare diseases often experience:

Fluctuating health
Medical appointments
Fatigue
Periods of hospitalisation
Anxiety or trauma related to their condition
Environments that are not safe or accessible

These factors can make regular school attendance difficult or impossible.

Section 19 exists to ensure that education does not stop simply because a child’s condition is rare, complex, or poorly understood.

The Hidden Dangers of Section 19 That Parents Must Know

While Section 19 can protect a child’s right to education, it can also be misused, often unintentionally, sometimes strategically.

Here are the risks parents need to be aware of:

1. Section 19 Can Be Used to Delay or Avoid an EHCP

Some Local Authorities use Section 19 provision as a temporary sticking plaster instead of progressing an Education, Health and Care Plan (EHCP).

This can leave children:

Without long-term support
Without legal protections
Without the adjustments they need to return to school safely

Section 19 is not a substitute for an EHCP.

2. Children Can Become “Out of Sight, Out of Mind”

Once a child is educated off-site or remotely, they can become invisible within the system.

This can lead to:

Reduced oversight
Fewer reviews
Delayed reintegration
Lower expectations
Isolation and mental health decline

Parents must insist on regular reviews and a clear plan for reintegration when appropriate.

3. Provision May Be Minimal Unless Challenged

Some Local Authorities offer:

3–5 hours of tuition per week
Generic online packages
Workbooks with no teaching

But the law requires suitable full-time education, not the bare minimum.

Parents often need to push back.

4. Schools Sometimes Assume Section 19 Removes Their Responsibility

It doesn’t.

Schools must:

Continue to support the child
Provide work where appropriate
Stay involved in planning
Prepare for reintegration

Section 19 does not absolve schools of their duties under the Equality Act or SEND Code of Practice.

5. Medical Evidence Is Often Misunderstood

Local Authorities must use medical evidence sensitively and appropriately.
Parents do not need to provide endless letters or prove their child’s condition repeatedly.

For rare conditions, where specialists are few and appointments infrequent, this is especially important.

What Parents Should Do

1. Keep everything in writing.

Emails create a paper trail that protects you.

2. Ask the Local Authority to explain how they decided your child does or does not meet Section 19.

They must show their reasoning.

3. Request a clear plan for:

Provision
Review
Reintegration
Transition back to school

4. Push for provision that is genuinely suitable.

Not generic. Not minimal. Not “what we usually offer.”

5. Continue (or begin) the EHCP process.

Section 19 is temporary.
EHCPs are long-term.

Final Thoughts

Section 19 is powerful but only when parents understand it.

For children with rare conditions, it can be the difference between:

Falling behind
Losing confidence
Becoming isolated

…and receiving the education they are legally entitled to.

Knowledge is protection.
And in the rare disease space, protection is everything.

Section 19 of the Education Act: What Parents of Children With Rare Conditions Need to Know

Beyond Autism: How rare diseases are misdiagnosed and diagnoses delayed in education