Caring at home for a child with complex needs is a different job from caring for an adult, and it is one our family has done. Before True Care 247 existed we spent twenty years caring at home for our son, who has complex needs, is non-verbal, uses a wheelchair and is PEG-fed.
That is why this article exists, and it is why we take children’s packages seriously enough to turn some of them down.
The three funding routes
Almost every children’s package is funded through one of these, and families are rarely told all three exist.
- Children’s continuing care, through the ICB, where needs arise from a health condition.
- Social care short breaks, through the local authority children with disabilities team.
- Direct payments or a personal health budget, where the family employs or commissions the support themselves.
They are not mutually exclusive, and a package is often stitched together from more than one. If you have only been offered one route, ask about the others in writing.
Training has to be on your child, not on a syllabus
This is the point families should be most demanding about. Generic training does not qualify anyone to PEG-feed your child. What is required is training on your child’s regime, delivered or signed off by a clinician who knows them, with a documented competency assessment for each carer.
Ask any provider: who trains your staff on my child specifically, who signs it off, and how often is competency reassessed? If the answer is vague, keep looking.
Continuity matters more here than anywhere
A child who is non-verbal communicates through people who know them. A new face every fortnight does not just feel unsettling — it genuinely removes the child’s ability to be understood.
A small named team, trained together, is worth more than a larger provider with more staff. Ask how many different people would come in a month, and hold them to the answer.
Short breaks are for the whole family
Short breaks are not childcare. They exist so that parents sleep, siblings get an afternoon that is about them, and the family survives as a family rather than a care rota.
Siblings are the people most often left out of the plan. If the support you are offered does not create any time for them, say so at the review — it is a legitimate part of the assessment.
The transition to adult services
Transition starts at 14 in law and far too often starts at 17 in practice. It is the point at which families lose services they had relied on for a decade.
Start asking at 14. Ask who the transition worker is, what the adult equivalent of each current service is, and what the timetable looks like. Put it in writing and keep the replies.
What we would insist on, if it were our child
- A named small team, and the right to meet them before they start.
- Clinician-led training on your child, with written competency sign-off.
- A care plan you helped write and can change.
- One person to ring who knows the case.
- An honest answer when a provider cannot staff something safely.
We hold ourselves to that list, and we would rather lose the work than fail it.
Want to talk it through?
Ring us on 0161 531 3233. Plenty of people call once for advice and never become clients, and that is a fine outcome.
