Respite

alisa2525

hi everyone I’m obviously a new member here and Im hoping everyone is ok
I have a 13 year little lady who has severe learning disabilities and a wheelchair user. I’m a single parent trying to make the best life for us

I do have a sw and have lawfully been recognised I need support and was awarded 4 hrs pw p/a and 2 overnights with a carer

To date this has only ever been 1 night and now none

For the last 5 years I’ve been saying the best place to commit to overnights would be residential

As we all know how long waiting lists are I wanted Ella on these.

As the foster carer cannot provide any support anymore I’m back to square one

I was taken back with a comment or conversation with Sw who said they don’t like placing a child in an institutional setting ??
this to me was a very harsh word and I still can’t get my head around it

Is it even legal to say institution ?
I’ve been awarded 2 overnights it’s clear there isn’t anyone with the facilities Ella needs so a residential 2 nights pm is the minimum

I don’t know where or who legally to speak to

I want to be the best mother to my daughter but without respite I’m eventually going to burn out,

I have no family or friends who can accommodate her needs

Please advise if you can

Mary_Scope

Hi @alisa2525 and a warm welcome to the community😀

Thank you for sharing your situation, it sounds like you are doing everything possible to advocate for your daughter!

If your daughter has been assessed and awarded 2 overnight respite stays per month then the local authority is legally required to deliver that provision under the Children Act 1989. If they fail to do this, (specially over a prolonged period,) it is a serious concern and can be formally challenged.

I believe the term “institutional” used by the social worker is not appropriate as residential respite is a standard, lawful and sometimes necessary form of support for children with complex needs.

As no foster or community based carer is currently available, it does sound like requesting residential respite is both reasonable and in yours and your daughters best interest.

I really recommend that you chat to the social worker and request an urgent review of your daughters care plan in writing and ask for a clear timeline for the delivery of overnight care.

If the social worker doesn't agree or it goes unresolved, escalate this via your local authority’s formal complaints procedure. This may till be worthwhile doing anyway especially as you should have been getting more support for years!

There is also the Child Law Advice Service who have a helpline and email service providing legal advice to parents of disabled children around issues like you have described so it may be worth contacting them too

I hope this was helpful, please reach out if you would like more information, support or have additional questions😊

alisa2525

thank you so so much this is so helpful and may help the situation

I’m not asking for fulltime care respite that is already awarded xx

I will keep you updated with any updates