What is continuing care for a child with complex health needs?

Somewhere in the paperwork about a child who is coming to live with you, the phrase “continuing care” appears. Nobody explains it. You search for it, and half of what comes back is about care homes for elderly people and the other half turns out to be Scottish law. This is what it actually means in England, who decides it, and what you can reasonably ask for.

Please note: this is general information about how the system works, not advice about a particular child. Decisions about a child’s health care are made by their NHS commissioners and their local authority, working with the people who know the child. Figures are current at the time of writing and we have named the source for each one.

Three documents govern this, and two of them never mention it

Start with what is not written down anywhere, because it explains why so few foster carers are ever told about this.

The phrase “continuing care” does not appear in the Fostering Services: National Minimum Standards, the document that sets out what a fostering service in England must provide. Neither does “personal health budget”. Neither does “Education, Health and Care plan”. We checked all three by searching the document directly.

The phrase does not appear in the Department for Education’s statutory guidance Promoting the health and well-being of looked-after children either, which is the official rulebook on the health of children in care. “Personal health budget” is absent from that one too.

And the document that does govern continuing care, the NHS National Framework for Children and Young People’s Continuing Care, contains no substantive passage about foster carers at all. It talks throughout about a child and “their family”, and about care “largely provided by family members”. It does not pause to say what happens when a child’s family, for now, is a foster family.

So a foster carer sits in the gap between three national documents. The fostering rules do not mention the health system. The health framework does not mention foster carers. That is not an oversight anyone designed on purpose, but it is why the information does not reach you.

What continuing care actually is

The National Framework is published by the Department of Health and the current version is dated January 2016. Its definition is short, and worth reading slowly:

“A continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.”

Two things follow from that sentence. The first is that continuing care is an extra, sitting on top of the GP, the hospital, the community nursing team and everything else a child would normally get. The second is that it is decided by need, not by diagnosis. There is no list of qualifying conditions. A child with a very serious illness may not need a package, and a child with a less dramatic-sounding condition may need a substantial one, because the test is about what ordinary services can and cannot cover.

It is funded by the NHS rather than by the council, and it can pay for things like nursing hours at home, equipment, or the support that makes it possible for a child to live in a family rather than anywhere else.

Three different things share this name

This is the single biggest reason people get confused, and it is worth clearing up before anything else.

• Children and young people’s continuing care is the one this article is about. It covers children in England up to their eighteenth birthday.
• NHS Continuing Healthcare is the adult version. The National Framework says plainly that the adult framework and its tools “only applies to people aged 18 or over”. It is a different assessment with a different threshold, which is why the change at eighteen matters so much.
• Continuing care in Scotland is something else entirely. Under Part 11 of the Children and Young People (Scotland) Act 2014, it means a young person staying in their existing home with the same support up to their twenty-first birthday. It has nothing to do with health needs, and it does not apply in England.

If you are fostering in Hampshire or Kent and you land on a Scottish page explaining that continuing care runs to twenty-one, that is why it does not match anything your social worker has said. The English equivalent of that arrangement is Staying Put, and we have set out what happens if a young person wants to stay with you after they turn 18.

Who decides, and why the paperwork names a body that no longer exists

The framework puts the decision with the NHS. In its own words, the commissioning body “is responsible for leading the process of identifying if a child or young person for whom it has commissioning responsibility … has a continuing care need.”

Here is the wrinkle. The 2016 framework says that body is the clinical commissioning group, or CCG, and it uses that term throughout. Clinical commissioning groups no longer exist. NHS England’s own account is that “on 1 July 2022, integrated care systems (ICSs) became legally established through the Health and Care Act 2022, and CCGs were closed down.” The job passed to integrated care boards.

So if you are reading the national framework and wondering who to ask, the answer is your local integrated care board, and the children’s continuing care team within it. Most publish a page about it. Do not be thrown by the old wording; the process it describes is still the one in use, the name on the door has simply changed.

How the assessment works

A referral can come from a wide range of people, which matters, because carers often assume only a consultant can start this off. The framework says the commissioning body “should ensure that referrals can be made by a variety of professionals, and this should include professionals working in primary, secondary and tertiary care, Child and Adolescent Mental Health Services, community nursing teams, local authority-commissioned public health, school nursing and also education and social care.”

Read the end of that list again. Social care is on it. A child’s social worker can ask for an assessment, and for a child in care that is often the most realistic route.

The assessment itself is health-led but broader than health. It draws together the views of the child and the people close to them, a rounded picture of the child’s needs, reports from the professionals already involved, and a Decision Support Tool that pulls it all into one place.

There is a timescale, and it is not vague. The framework says the process “should aim for a decision to be given to the child or young person and their family within 6 weeks”, and repeats elsewhere that “a decision should ideally be made within 6 weeks of the commencement of assessment”. It also says the child’s and the family’s “views should be documented and taken into account”. If you are the person who knows what a night is actually like in that house, say so, and ask for it to be written down.

The ten areas the assessment looks at

The Decision Support Tool exists to “bring assessment information together in a concise, consistent way”. It works through ten areas of a child’s life:

• breathing
• eating and drinking
• mobility
• continence and elimination
• skin and tissue viability
• communication
• drug therapies and medicines
• psychological and emotional needs
• seizures
• challenging behaviour

That last heading is the document’s wording, not ours, and it dates the tool. We would say distressed behaviour, because a child who is overwhelmed is communicating something rather than being difficult, and the language you use about a child shapes how everyone in the room thinks about them. If you want the longer version of that argument, we have written about what trauma and attachment actually mean in foster care.

The practical point is that behaviour and emotional needs are scored alongside breathing and seizures. Carers sometimes assume continuing care is only for children who need machines. It is not scored that way.

The budget almost nobody mentions

This is the part of the framework that is least known and most useful.

Where a child is eligible for continuing care, the framework states that the family has a “right to have” a personal health budget, covering the part of the package the NHS would provide. That phrase is doing real work. It is not a suggestion that one might be offered. The framework goes on: where a personal health budget is requested, the commissioning body “must arrange for the provision of the care by means of a personal health budget”, and must “publicise and promote the availability” of them.

A personal health budget lets the money be spent in the way that actually suits the child, rather than only on whatever the standard contract happens to cover. For a child living in a foster family, that flexibility can be the difference between a package that fits the household and one that does not.

Whether and how a foster carer can hold or direct such a budget is a question for the child’s social worker and the integrated care board together, because the child’s local authority holds parental responsibility alongside the parents. Ask early, and ask both of them in the same conversation rather than separately.

It gets reviewed, and you can ask for a review

A package is not settled forever. The framework says a child’s continuing care needs “should be reviewed three months after the package of care has commenced, and then annually thereafter, or when a child or young person’s health or function is known to have changed.”

And then a short sentence that is easy to miss: “The child or young person and their family should be able to request a review.”

Children change quickly. A child who needed two nights of nursing support in March may need more by September, or less. The annual review sets the minimum, and a request does not have to wait for it. This is one of the clearest reasons to keep good daily records, and we have set out what foster carers have to write down and why it matters later.

Where the foster carer actually fits

The National Minimum Standards never use the phrase, but they do give you things to hold the fostering service to. Four of them are worth knowing by heart.

On getting a child seen, Standard 6.4 says children “have prompt access to doctors and other health professionals, including specialist services (in conjunction with the responsible authority), when they need these services.”

On your own preparation, Standard 6.8 is a single sentence and it is a promise: “Foster carers receive guidance and training to provide appropriate care if looking after children with complex health needs.” If a child is arriving with a condition you have never encountered, training on that condition is not a favour. Ask for it before the child arrives if there is time, and afterwards if there is not.

On equipment, Standard 6.12 is blunt: “Any physical adaptations or equipment needed for the appropriate care of the children are provided to foster carers.” You are not expected to buy a hoist or a specialist bed out of your weekly payment.

On the house itself, Standard 10.1 says the foster home “can comfortably accommodate all who live there including where appropriate any suitable aids and adaptations provided and fitted by suitably trained staff when caring for a disabled child.” Note who does the fitting there: suitably trained staff, which is a useful line to point at if somebody suggests you sort it out yourself. We have covered the wider picture in how you get your home ready for fostering.

Standard 4.6 adds that for carers who offer homes to disabled children, preparation “includes training specifically on issues affecting disabled children”. And Standard 13 expects a fostering service to plan for short breaks for disabled children, which is its own subject; we have explained what short break fostering is and the limits that define it in law.

What you should be told, and when

The Department for Education’s health guidance is clearer than the fostering standards on this, and it puts the duty on the child’s social worker rather than on you.

It says social workers should support foster carers “to promote the child’s physical and emotional health on a day-to-day basis”, and that this “should include providing them with information on the child’s state of health, including a copy of the child’s latest health plan.”

A copy of the health plan, not a summary over the phone. If you have not been given one, that is a reasonable thing to chase.

The same guidance says social workers should ensure “that information about any health needs or behaviours which could pose a risk of harm to the child, the carer or members of his or her family or household is passed to the carer … at the time of the placement”, meaning at the point the child moves in. In practice a great deal arrives late, which is one of the things we looked at in what happens in the first two weeks after a child arrives.

If the child comes from another area

This one catches people out, and it is worth understanding before you need it.

A child placed with a carer in Dorset may be the responsibility of a council and an NHS body a hundred miles away. The DfE guidance sets out the rule: where a child is accommodated in the area of another commissioner, “the ‘originating’ CCG remains the responsible CCG”, and that originating body “is responsible for commissioning the child’s statutory health assessment(s)”. Read “integrated care board” for “CCG”, as above.

So the NHS body that pays is usually the one where the child came from, not the one where you live. That is why a referral can stall while two organisations work out which of them is holding it. Knowing the rule lets you ask the right question, which is not “who should I chase” but “which integrated care board is the originating one here, and who is the named contact there”.

How this sits alongside an EHC plan

Most children who need continuing care also have an Education, Health and Care plan, or are heading towards one, and the two processes ask for a great deal of the same information.

The framework is explicit that they should be joined up. Where a child has a special educational need or disability, commissioners and councils “should endeavour to coordinate the assessment and agreement of the package of continuing care, as part of the process to develop the child’s Education, Health and Care plan”. It notes that “the information needed to make a decision on the continuing care package will be very similar to that needed for the health element of the EHC plan”, and that the two should be brought together “to articulate a single set of needs and outcomes”.

The Department for Education’s guidance makes the same point from the other direction, saying a child’s EHC plan “works in harmony with their care plan”.

How common is this? More common than most people expect. Of children who had been in care for at least twelve months at 31 March 2025, the Department for Education reports that 61.2% received additional support at school, the category the statistics call special educational needs provision, against 19.2% of pupils generally, and 33.9% had an EHC plan, against 5.3% of pupils generally. Those figures were published in April 2026. A third of children who have been in care a year have a plan of their own, so if this lands on your doorstep, you are not an unusual case.

What happens when the young person turns 18

Children’s continuing care stops at the eighteenth birthday. Adult NHS Continuing Healthcare has a different and generally harder test, so this is a real cliff edge, and the framework builds in a long run-up to it.

• At 14, children’s services should identify young people likely to need adult NHS Continuing Healthcare and notify whichever body will be responsible for them as adults.
• At 16, there should be a formal referral for screening to the adult NHS Continuing Healthcare team.
• In their seventeenth year, eligibility “should be determined in principle … so that, wherever applicable, effective packages of care can be commissioned in time for the individual’s 18th birthday”.
• At 18, the move to adult services or to ordinary health services “should have been made”.

If the young person is fourteen or older and nobody has mentioned any of this, raise it. Four years sounds like plenty of time until it is eighteen months and nothing has been booked. This is also the moment when the two meanings of continuing care finally meet, because the question of where a young person will live from eighteen and the question of who funds their health care have to be answered together.

Questions worth asking

If a child with complex health needs is coming to live with you, or is already with you, these are the ones that tend to unlock things:

• Has a continuing care assessment ever been done for this child? If so, when, and can I see the outcome?
• Which integrated care board is the originating one, and who is the named children’s continuing care contact there?
• Can I have a copy of the child’s current health plan?
• What training will I get on this child’s specific condition, and when?
• What equipment or adaptations has anyone agreed to provide, and who is fitting them?
• Has a personal health budget been discussed with anyone, and who would hold it?
• When is the next review due, and how do I ask for an earlier one?
• Who do I ring at two in the morning if something about the child’s health frightens me?

That last question is not really about continuing care. It is the one carers most often wish they had asked first.

You won’t have to do this alone

Caring for a child with complex health needs asks a lot of a household, and nobody expects you to arrive knowing how any of this works. What you should expect is that somebody helps you navigate it.

At South Coast Fostering every carer has a named supervising social worker who visits regularly, and experienced out-of-hours support is available around the clock. Our training is meant to follow the children you actually care for rather than a fixed syllabus, so if a child arrives with a condition that is new to you, start the learning and development conversation early. There is more on what the first year looks like in what support you get in your first year of fostering, and on the everyday health side in promoting the health of fostered children.

None of this requires you to become a nurse. It requires you to notice, to write things down, and to keep asking until somebody answers. A child isn’t just given a home, they’re given a chance, and for a child with complex health needs that chance often rests on an adult who was willing to be persistent on their behalf.

More from our guides for carers: Promoting health

Frequently asked questions

Is continuing care the same as NHS Continuing Healthcare?

No. NHS Continuing Healthcare is the adult system and the National Framework says it applies only to people aged 18 or over. Children and young people have their own framework, with its own assessment and its own Decision Support Tool, up to the eighteenth birthday.

Who pays for a continuing care package?

The NHS does, through the integrated care board responsible for the child. Where a child lives outside that area, the originating board usually keeps responsibility rather than the board covering the area the child has moved to.

Can a foster carer ask for a continuing care assessment?

Referrals come from professionals, and the national framework specifically includes social care among them. In practice that means raising it with the child’s social worker and your supervising social worker, who can take it forward. You can also ask for a review of an existing package at any time, because the framework says the child and their family should be able to request one.

How long should a decision take?

The national framework says the process should aim to give a decision to the child and their family within six weeks of the assessment starting.

Do you need medical experience to foster a child with complex health needs?

No. The National Minimum Standards require the fostering service to give carers guidance and training for children with complex health needs, and to provide any equipment or adaptations needed. What matters far more than a medical background is being observant, organised and willing to ask questions.