Has anyone adopted a child with complex needs / disabilities

[BellaCat123]

Hi All,

Long time lurker here. As title says I was wondering if anyone has adopted a child with multiple complex needs e.g. developmental delay, physical disability, sensory impairment, complex medical needs?

If so do you have any advice for us? Not new to caring but first time adopters and would really welcome any advice regarding post-adoption support and what to request in terms of respite etc.

Thank you!

I would think that most of your needs won't come under the remit of post adoption support as they are medical or educational.

I think you would need to ask for a disability social worker to be allocated. Is it an in county placement? If not ask for help with getting registered to the services in your area.
You should be looking for a hefty adoption allowance as that level of need will impact on your earning capacity. Get an agreement in writing - we have our until my son is 18 or 21, depending on when he leaves full time education. Does your house need any adaptations, what about a bigger car - ask what they will find.
How old is the child? If they are at an age when they qualify for DLA make sure an application goes in. I don't know if you can apply on the child's behalf before you have the adoption order - if you can't make sure the SW does it. If you can do it, SW will probably need to provide you with a lot of the info you will need. Similarly with EHC plans.
I don't know about respite- again it will probably come from disability/ health services not adoption services.
I think it will be important that everyone is clear what is adoption, disability or health services so you aren't chasing the wrong people.
Good luck

Thank you that is really helpful!

It is an out of county adoption so a little confusion re who has to pay for what at the moment!

LO will get high rate DLA care and we will be entitled to carers allowance. Only diddly so no mobility yet but will also be entitled to high rate mobility once three.

Getting the adoption allowance written down is a very good point. Verbally they have committed to the first two years and then to he reviewed and means tested. Our LO will have life long needs and will always be dependent on us for everything.

Anticipating a lot of chasing and knowing who to chase for what may be a bit of a minefield I think but all fab advice thank you!

the placing authority is responsible for post adoption support for three years after the adoption order but with such medical needs you will obviously need to access services closer to home. I don't know the mechanics but your SWs should be able to sort it.
Don't be fobbed off with a two year commitment re the Adoption Allowance - its ridiculous, those needs aren't going to go away, you need it in writing, you don't want to be going into battle over it every few years. Also, if you needed to make a new application for AA after the 3 years you would be applying to your LA and it could be more difficult. I wouldn't worry too much about the means testing - mine is reviewed every year and as there is never any change in my circumstances it never changes.

I have. My son has v complex needs and needs medical care around the clock. He relies on us for everything. He is 5 now and came to us at 11 months.
We have a guaranteed adoption allowance to be paid each week until he turns 18. We got it written into the court papers when the adoption order was granted so there was no wriggle room. Don't commit without it is my advice because as you say these kiddies will need long term care 24 / 7. And working outside the home is impossible.
As for respite we are able to access the local hospice so we get a little bit of support there and we have been given 2 nights a week with a waking carer as we get little sleep most of the time . We were actually given that 18 months ago but it took a year and a half to get carers in place and that is a good point, sometimes even when you are given support there is no one to deliver it.
You will get good support from medical professionals and we have a large teams of professionals around us which is both a good and bad thing.
Anyway I would be happy to keep in touch if you would like that and you can pm me any time if it helps.

We have just adopted a little boy with quite severe cerebral palsy and our adoption agency have basically said an adoption allowance no longer exists. I don’t know what else we can do to push it further.

The problem with AA is that its discretionary and with LA budgets being under so much pressure they are harder to get. I would have thought with cerebral palsy you should have been able to get one - your SW really should have challenged that. I'd go back to then and ask to be assessed, particularly if you can show reduced earnings. Don't be afraid to push- you are saving them thousands of pounds a year on foster care fees alone

We have adopted 2 with complex health needs and we did get an adoption allowance but as 2dads247 said an adoption allowance is no longer guaranteed. Our 2 do get Continuing Health Care which is a help in regards to equipment etc.
One thing I would like to say (nervously) not to put you off we have had 3 LOs placed with us 2 had short life expectancy and died before they were 2 we were devastated but sadly not surprised. Number 3 did the dirty on us and died at thirteen years. However they brought us all such love and joy we would not have missed a single second.
Just felt I needed to say these complex needs children are very vulnerable. Good luck and we are all here for support

From what I understand, the key is not to apply for an adoption order until you have all support agreed in writing and are happy with it.

Other things to thing about are around schools, education provision and transportation. It might be the case that your LO might need weekly or term time boarding at some point in the future.

Yes exactly @ Ifchocolatewerecelery .
Once an adoption order is given it is much harder to secure support. But children with these level of needs require expensive foster care or residential placements so it is about making the case for what you will be saving the authority over the course of their childhood.
It is horrible dealing with the financial aspect but it is important to make sure your future is financially as stable as possible because expensive clothing , nappies, wheelchair rain covers etc etc end up costing a lot of money over time. Not everything is provided by specialist services and those that are have to be fought for sadly and that is one of the hardest aspects of parenting a child with complex needs. It can be exhausting to constantly advocate and fight for what your child needs and it is only getting harder with ever tighter budgets.

yes get as much in place before you apply for the Adoption order, particularly if its an out of county placement. We had ASF funding for therapy just as the three years were up, and that was a nightmare to sort out

Have Two with multiple problems have Aquired Brain Injury , Have too fight but start early, With putting in place pathway plan, sharing support with nursery or school, use every one GP , Paediatrician, SEND community disability team. All will come together and may attract further funding pre school. Example our nursery were allocated level 2 funding for additional support. See www.first4adoption.org.uk for details of after adoption support available. Good luck.

Hi OP, my answer is yes and no, in that I adopted a “straightforward, easy, no health concerns and meeting-all-milestones” baby. That child is now 11 and in the last few weeks has been registered blind, following a very sudden and significant deterioration in her sight. All linked to her in utero experiences.

My advice to you would be to research the long-term effects of the health issues with which your young person presents; you will be actively parenting a disabled child (with non-life limiting conditions) much longer than the traditional fly-the-nest at 18 milestone. It’s possible that your child will need enhanced care for a very long time after you’re gone - this is something that the parents of NT ‘normal’ (for want of a much better word) children don’t really have to worry about as the assumption is that most parents will die when their children are mature and fully functioning (sorry to be so morbid). I agree with @Ted27 that you need to have a cast-iron (none of this stressful will-they-wont they renewing every year nonsense) adoption allowance agreed and confirmed, and post the age of 18, possibly even until 25, which is the upper age of the support limits for all LAC on the care leavers’ pathway.

You’ve been given brilliant advice above but please do think about your household economics in the short/medium and long term, as it may be that you will have to give up any work outside the home in order to accommodate the needs of your little one (and don’t under estimate the sheer quantity of hospital and clinic appointments).

Moominmammaatsea has put it beautifully, we have 5 with SN, 2 with complex needs. We are now at an age when we are thinking about the future and we are tearing our hair out......who will care and love them like we do? We are due to speak to a legal team but feel so disloyal, just love them so much. Not quite what you asked but needs thought, sorry.