The Care Package Only Covers the Hours I Don't Do

When you die, the local authority has to look at your son's care package again, because his circumstances will have changed in the most fundamental way — the person doing the half of his care that nobody was paying for has gone. That review is a legal duty, not a favour, and it usually means his funded hours go up. What it almost never means is that the new package quietly replaces everything you did.

The reason is buried in how the package was built in the first place. The hours the council commissions were assessed around you. Every task you do unpaid — the morning prompt, the appointments, the cooking, the sitting with him when he is overwhelmed — is care the assessment recorded as already met, and so did not fund. Remove yourself from that picture and the council has to meet needs it previously left to you, but it meets them its own way, at a cost it is willing to carry, which is rarely the whole of what you gave.

This page explains what the Care Act reassessment after a carer's death actually delivers, how those commissioned hours are set, and what families find themselves topping up when the funded package falls short of the life the disabled person had while their parent was alive.

The short answer: the package is reviewed, and it usually grows

Adult social care in England runs on the Care Act 2014. Under it, a person with care and support needs is entitled to a needs assessment, and where their needs are eligible the council must meet them. That duty does not depend on a parent being present — but the size of the package very much does, because an assessment records what needs are already being met and by whom.

When the carer who was meeting a large share of those needs dies, the factual basis of the assessment has changed, and the council has to carry out a review. A review can be requested urgently, and it should be, because the gap opens the day you die rather than the day a social worker gets round to it. In the normal course, the reassessment recognises that needs previously met by you are now unmet, and the funded hours increase to cover them.

So the headline is reassuring as far as it goes: he does not lose his existing support, and he usually gains more. The difficulty is in the word "needs", and in who decides how they are met.

How the commissioned hours were set around you

A care package is not a measure of everything a disabled person requires to live well. It is a measure of the needs the council has assessed as eligible and agreed to meet, minus whatever is already being met by other means — and the largest of those other means, in most families, is an unpaid parent.

When the original assessment was done, the social worker will have seen a young man who was managed, fed, prompted, calmed and driven to appointments, and much of that was invisible to the funded plan precisely because you were doing it. The commissioned hours were built to sit on top of your input, filling the parts you could not cover — respite, perhaps, or specialist support, or the hours you were at work. The plan was, in effect, a top-up to you.

That is why the number that matters is not the size of the current package but the size of the part you provide for nothing. When you go, that is the void the system has to respond to, and the response is governed by rules about what the council must fund, not by a wish to reproduce a parent.

What the reassessment actually delivers — and what it doesn't

The reassessment looks at his eligible needs afresh, now without you in the room as a resource. Where a need is eligible and no longer met, the council must meet it. But two features of the law shape how far the new package reaches.

First, the council decides how a need is met, not the family. If a need can be met by a support worker for two hours where you gave four, or by a group activity rather than one-to-one time, the council may choose the option that meets the assessed need at lower cost. Meeting a need and recreating your presence are not the same thing, and the law only requires the first.

Second, cost is a legitimate consideration when the council chooses between options that would each meet the need. This is lawful and long-established: the duty is to meet eligible needs, and where two routes both do that, the authority may prefer the cheaper one. At its sharpest, that can mean a proposal to meet his needs through a move to supported living or residential care rather than a large home-care package in the family home — a cheaper way to meet the same assessed needs, but a very different life.

Where the home itself is the thing at stake, the same tension runs through other family situations, and it is worth reading alongside whether a dependant can carry on living in the family home after a parent dies. If your son rents, or lives in supported accommodation where you stood as guarantor, that arrangement needs looking at too — we cover the specific problem in what happens to a tenancy guarantee when the guarantor dies first.

What families end up topping up

The gap that opens is the distance between "his assessed needs are met" and "his life is roughly as it was". Those are not the same, and the difference is what families quietly pay for. In practice it tends to be some mix of the following:

• Extra hours beyond the funded package — the difference between the support the council will pay for and the support he is used to having.
• A preferred provider or a specific worker, where continuity matters to him but the council would fund a cheaper agency.
• Activities, clubs and the things that give a week its shape, which are frequently treated as beyond eligible need.
• Transport, so he can keep getting to the places and people that were part of his settled life.
• A better room, or a chosen home, where residential care is the route and the council's rate would only fund a basic placement — the "top-up" that a family or a third party pays to bridge the gap to the preferred setting.

The single most useful thing you can do while you are here is to turn that list into a weekly figure. Sit down and cost the paid version of what you provide unpaid: the hours, the driving, the standing-in when a worker is off sick. That number, multiplied out over the years he may outlive you, is the thing a policy has to be able to produce. It is uncomfortable arithmetic, but it converts a vague dread into a target you can actually plan against.

Why the type of cover matters here

This is a need that does not have an end date, and that changes what protects it. A term policy — cover that runs to 70 or 75 and then stops — is built for a debt that shrinks and disappears, like a mortgage. Your son's need for support does not shrink and disappear; if anything it is most acute if you die late, at 80 or 85, when he is himself older and you are no longer there to fight his corner.

A policy that has expired pays nothing at exactly the moment the problem is worst. That is why families in this position tend to end up with whole-of-life cover, which pays out whenever death comes rather than only if it comes before a birthday, and why they often write it into a discretionary trust so the money can be released for his benefit without landing in his own name and disturbing his means-tested benefits. If you want to see what that kind of cover would look like against your own age and health, you can get life insurance quotes and have an FCA-authorised broker price it properly.

The trust point sits at the centre of a cluster of related questions about providing for a disabled dependant, all gathered in our guide to dependants and unusual family shapes. If your son is under eighteen, the ownership rules add another layer, because a minor cannot hold legal title to property — set out in who owns the house when a child under 18 inherits it — and the way a lump sum reaches a young person is governed by rules we cover in why children inherit at eighteen and who pays for them until then.

Get the assessment on record now

One practical step outweighs almost everything else: make sure the council already knows him. Many disabled adults who are supported by a parent have a thin file or none, because the parent has been quietly absorbing the need for years and never asked for a formal assessment. A crisis review triggered by a death, with no history to build on, starts from a standing position.

Request a needs assessment now, while you can attend it and describe honestly everything you do. Write it all down as well — a plain account of his day, what triggers a bad one, who he trusts, what he cannot manage alone — and keep it with your will and your policy documents. A social worker meeting him for the first time in the worst week of his life will lean heavily on that account. It is not a legal document; it is the closest thing to handing over what is in your head.

Scotland, Wales and Northern Ireland

The Care Act 2014 is an England-only law, so the specific duties above apply in England. The underlying shape — an assessment of needs, a duty to meet eligible ones, and a review when circumstances change — exists across the UK, but under different statutes and with real differences.

In Scotland, adult social care runs under the Social Work (Scotland) Act 1968 and the self-directed support legislation, and Scotland provides free personal care for those assessed as needing it, which changes what a family is asked to fund. In Wales, the Social Services and Well-being (Wales) Act 2014 governs assessment and eligibility. In Northern Ireland, care is arranged through Health and Social Care Trusts under separate legislation again. In every part of the UK, though, the central truth is the same: a parent's death triggers a review, the review meets assessed needs rather than reproducing a parent, and the difference is what the family plans for.

Frequently asked questions

What happens to my son's care package if I die?

The local authority must review it, because his circumstances have changed. The reassessment considers his eligible needs without your input, so the hours usually increase — but they are set against what the council must meet rather than everything you did. A review takes time and can, and should, be requested urgently so the gap is not left open.

Can the council refuse to fund more hours?

It must meet his eligible needs, but it decides how, and cost is a legitimate factor when choosing between options that would each meet the need. A cheaper option that still meets the assessed need can be preferred, including a move to supported living or residential care. Decisions can be challenged through the council's complaints process and then the Local Government and Social Care Ombudsman.

What do families end up paying for themselves?

The extras the assessment does not fund: additional hours, a preferred provider, activities, transport, or a bigger room in a chosen home. Those are met by top-ups or from savings. Working out that weekly figure now tells you what a policy would need to produce once you have gone, and for how many years.