I care for my autistic adult daughter, Hannah, who also has severe learning disabilities & epilepsy. Until lock-down, she attended a privately run Day Centre where she was well looked after & happy. (Three years prior to this, I had to take her out of a council run Centre as she wasn’t being looked after properly. She was left alone to walk alongside a busy road & had numerous falls and ended up in A & E on one occasion. The Social Worker I had at the time felt that there had been a ‘catalogue of errors’ and helped me to secure funding to send her elsewhere.)
Unfortunately, Hannah was appointed a new Social Worker last February. I received a phone call from this Social Worker last week & I was dismayed when she started making other suggestions for Hannah’s future services. One of the suggestions was that Centre I fought to get her out of and the other suggestion was another council run centre which I have seen twice in the past and didn’t feel it was suitable for my daughter’s needs. She actually put every obstacle in the way of Hannah returning to the Centre she was so happy in. I phoned that Centre on the off-chance & spoke with the manager there. She told me that she or anyone else she knew had any idea what was happening in the future. I do believe that’s the situation across the board. I left it with the Social Worker that I didn’t want Hannah attending anywhere else, apart from the Centre she attended until lock-down. Sadly, I think any parent/carer could be fooled into a situation where they would agree to anything to get any kind of service. So many are struggling, as I am also, for Social Workers to pile on this kind of pressure.
Hannah has been home for three months now and every morning, she still gets out her Centre bag and watches out of the window in the hope that her transport will arrive. I’m lucky if I can engage her in anything for 15 minutes a day. All the things she used to play with, she no longer does since her services ceased. She won’t come out with me for a walk & a run in the car just makes her worse. Hannah cannot talk & has all the needs of a baby. My mother passed away on the day of lock-down, which has made it all the harder. Basically, I’m exhausted and really can do without worrying whether Hannah will have any services in the future.
Sue
This is a stressful situation to be in. My eldest son is autistic and I know what a struggle it is to get the correct placement.
Does your daughter have a support plan with the direct payment amount on it (if you get a direct payment you should be able to choose what support your dsughter has)
If you do not have a direct payment you can request one.
When the day centre that worked well says they don’t know what is happening…do they mean they just don’t know when people can go back or that they may close?
If it is going to re-open at some point it would make more sense for your daughter to go back there.
The place that failed I agree is a total no no. There are clearly safeguarding issues.
The other place that the social worker is suggesting… why is she suggesting it…is it cheaper than the option that has worked?
,Cost should not be the sole consideration. A place has to be able to meet the need
Also, another thought…is it now time to consider your daughters long-term needs.
Either supported housing or a small care home?
You having to cope with this is unsustainable long-term.
Both of my kids have disabilities. I feel the exhsustion and never ending to do lists daily.
Placements not working out is a big stressor. Hope you find the right snswer.
Be very firm with the social worker.
Thank you for replying so promptly. The Centre my daughter was attending has a Respite Care facility which she used; at the moment all respite care is cancelled. It also has a Residential facility which I was looking towards when I became too old to care for my daughter.
Up until about a year ago, I was receiving Direct Payments, but then the Council took it over because the service was very lax in sending their bills. However, I wish that I had kept the Direct Payments; as it would have given me more independence paying for her services. I’m going to ask Hannah’s Social Worker whether I can get them reinstated. Do you think I have any chance of that happening?
I do believe cost has everything to do with it; just offering a cheapskate service.
The Social Worker did ask whether I was going to keep my daughter home all of the time. I was rather annoyed at this question/more suggestion. I asked her why she thought parents/carers were given services in the first place. I had no answer to that one.
She went on to say that this Coronavirus was going to come back in the winter. To be honest, I’m not really worried about that. My daughter is physically healthy & robust. I think she was just trying to frighten me into a corner.
As for Hannah’s Centre, from what the manager told me, they’re not closing. They’re just waiting to hear what is going to happen.
Besides Hannah, I have three adult children with schizophrenia. One daughter living at home & two sons living independently. Fortunately their mental health hasn’t been too bad, but my sons keep an eye on each other.
Many thanks again for your kind reply, I’ll let you know if I hear anything.
Take care.
So there is no real reason not to wait for the centre to open up again…your daughter was obviously well looked after there, and she is clearly missing it.
If you do get the direct payment again, its worth asking for a managed service, then they will sort all the paperwork.
The cost of having a company do this for you means it saves you all the bother. The cost of doing this should also be met by by the council too.
If the social worker won’t play ball; I would personally just go higher. That’s what I often do!
Some day centres round here I note have opened up, but i guesse they will vary depending how easy it is to social distance.
Let us know how you get on.