Continuing Care for Children

[Kanga59]

My son is currently being assessed for an EHCP and the draft has been to panel. Our case worked has informed me that my son should be referred for a continuing care assessment. I have googled it and found some information, but I don't fully understand what continuing care is.

We are already under 6 specialist consultants across 2 hospitals. I receive a direct payment to employ a carer in the home. My son has 1-1 at pre-school funded by the LA. We have community services of OT, SALT and physio. My son receives the highest rates of both DLA components.

What I have found about continuing care is:

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.

I am getting nervous about the CC package. I feel I have control over my son and his care at the moment and I coordinate his appointments and it all works fine.

Does anyone have CC? What exactly does it mean in practice? Is it good or bad? Is it just another professional to add to the list, who will talk about my child as if they know them inside out, at meetings?

We have continuing healthcare for DD1, as a young adult.

All it means is that instead of DC's social care and support being funded by Social Services, it's funded by the NHS (the CCG in practice). As a child, it does not make any difference financially, because children under 18 do not undergo a financial assessment, and do not have to contribute to the cost of their care.

However, it does make a difference to adults. Say a disabled adult enters a residential care placement, the LA will take all their benefits off them apart from DLA mobility, and leave them about £26 per week for toiletries, clothes, gifts, holidays, etc. If anybody leaves them a substantial amount of money, the LA will take it for their care. If the disabled adult gets CHC funding for the residential placement, they won't get the DLA care component, but they get to keep all the rest of their benefits (like ESA and DLA mobility) and any money left to them - because the NHS is free at point of use, where LA social care is not!

You can still have a personal budget under CHC funding. The difference is you deal with the CCG's continuing care team for it, rather than Social Services!

Actually, you really don't have a choice - if Social Services decide to refer DC for an assessment for continuing care funding, and you refuse to let it go ahead, you may not get any more social care from Social Services either, if my understanding of the guidance is correct?

The CCG is not concerned with DC's hospital appointments, community services like speech therapy, etc as a child. They would have to fund speech therapy, OT, etc if that were needed by adult DC from a residential care home's own onsite team - residents or their family cannot be required to pay for these through "top up fees"!

Yes, what I was thinking of about what LAs do not have to pay for

www.gov.uk/government/publications/children-and-young-peoples-continuing-care-national-framework

S 26:

"In line with the Haringey judgement (see Annex C), there are clear limits to what care should be funded by the local authority, which should not be a substitute for additional NHS care for children. In this case, the High Court determined that the duty under section 17 of the Children Act 1989 did not extent to meeting essential medical needs."

Thank you that's really helpful

So I think what it's saying is that the NHS (or under CC) should pay for my sons direct payment/carers. Rather than via current social worker arrangement.

Yes, its an advantage financially for adults, whereas for children I can't see any difference? Both organisations are pretty much the same to deal with!

I used to do cc assessments for children a few years ago. Basically instead of social care paying for your respite the NHS and social services will each pay. CC was generally offered to children who needed more than the maximum direct payments available. These children would require care every weekend and also on weekdays and maybe overnight care as well. They had to have medical needs in order to qualify for any funding so it was generally used for severely disabled children, severe epilepsy, tracheostomy, home ventilation, severe autism, severe adhd and various syndromes.

That is joint funding and it sounds more like a local policy. Afaik, there is nothing in The National Framework about children have to have reached maximum direct payments to meet the criteria, and as all assessed needs have to be met, there won't be a maximum, although the only parents, I knew with children needing 2:1 care at home were asking for residential schools, because they could not cope, which they got through statements (now EHC plans).

The social worker told me the RAS did not really apply to DD1, as her needs were beyond it. They also told me they did not do joint funding with the CCG. I only know of one child with CC funding here, and they are fully funded by the CCG for all social care, as is DD1 now she gets CHC funding. She could have 2:1 care in her waking hours and care at night, if we wanted, while we wait for her to start in a specialist residential placement.