Hi, my name is mum002! Child's respite stopped suddenly with no alternative given

mum002
mum002 Online Community Member Posts: 2 Listener
edited October 1 in Families and carers

Hi, I've just found this forum.

And looks like a wealth of information.

I have 2 sons with high needs. 1 funded by council and 1 funded by chc.

Such a minefield.

My son who is funded by chc has just had his 1 night a week respite stopped with immediate effect with no thought to the detrimental effect it will have on him but also on the whole family. He has severe autism and change of routine is detrimental to him. Just stopping it after that long is just not justifiable.

They said after 1 and a half years of funding the care and accommodation that they wont/dont fund for the accommodation which is leaving us in a vulnerable position. We have asked them for alternatives and after 2 weeks they have not come with anything.

It has all been done in quite an unprofessional manner.

I'm a single mum and unpaid carer to both my sons with high needs.

Comments

  • Emilee
    Emilee Online Community Member Posts: 235 Empowering

    Are you able to ask for a review of the decision? I would imagine you have the right to ask for a meeting to discuss your son’s needs and the impact of this sudden change.

  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services

    hi @mum002

    Welcome to the community. I am sorry to hear that you and your family have been treated this way.

    Have they given you a full written account as to why they have stopped the provision? It would be worth emailing them and asking for this so that you have it in writing and therefore a paper trail.

    As @Emilee said, you could also ask for a review of the provision and a meeting. Your son is a vulnerable child and you have every right to question why this decision as been made.

    If you have a social worker I would also go back to them.

    @Doris_Scope

  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services

    @mum002

    You also might want to try contacting the Disability Law Service for advice.

    They offer free legal telephone advice for community care issues.

    I hope that this helps,

    @Doris_Scope

  • mum002
    mum002 Online Community Member Posts: 2 Listener

    Thank you, my son is an adult, he's 26, sorry I should have made that clear in my 1st post.

    Thank you all for your advice.

    Very much appreciated and will make a start on them.

  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services

    No problem @mum002

    Even if he is 26 years old, he is still a vulnerable adult and you should still be given the information as to why the respite has stopped.

    Good luck.

    @Doris_Scope

  • LJ2704
    LJ2704 Online Community Member Posts: 2 Listener

    We are in a similar situation in West Wales and were told the only respite now available would be monthly visits to Aberystwyth over 90 miles away. We have been waiting over a year for a local respite provision to be restarted locally closer to home with no signs of any progress.

    We are contemplating writing to our MP. Any advice welcome.