I need advice about Social Services relating to an Autistic child

[RyanLondon]

I am hoping people who have children with mental health issues and have been dealing with Social Services can advise. BTW, sorry this is a bit long.

I have been receiving contradictory information and advice about Social Services to the point where I am incredibly frustrated - and sometimes feel like screaming. Most of the advice I have been getting is from so-called "professionals". 

Just to give you guys some background info and context, I started the thread in the link below, which discusses my daughter, who is diagnosed with ASD, her multiple suicide attempts and hospitalisation, etc. I felt it best to start a separate thread about Social Services. Otherwise, it might confuse some people. 

https://www.mumsnet.com/talk/child_adolescent_mental_health/4995362-autistic-teenager-multiple-suicide-attempts-what-to-do

We don't have a Social Services person or case worker. Still, everyone keeps telling me, including CAMHS, NHS staff, ADS advocates and mental health teams supporting parents with kids with autism and mental health issues, that we should get Social Services involved. However, when I speak to Social Services, they keep telling me they can do nothing for us. 

I first became aware of Social Services through an incident - to give you some background information. We got a CAMHS case worker who, at best, was disorganised, and I felt her mind wasn't on the job. Anyway, soon after my daughter was "officially" diagnosed, she had suicidal ideations following incidents at school and made her first attempts. 

At home, she made threats to kill herself all the time whenever we wouldn't give in to her whim. In one heated argument, I said the wrong thing to her; I said something like, "If you are going to kill yourself, you will do it no matter what..." - this argument happened because I confiscated her iPhone as she was going to dangerous websites. CAMHS knew I had confiscated her iPhone as I had consulted them. She did not do anything to harm herself following my words, and she didn't make much of it, but she wrote that sentence in her journal, which I ASKED her to keep. 

I fully accept I should have been more composed, and I should not have responded like that, and I should know better. I accepted my fault, and I told CAMHS that. However, it's not always easy to stay composed when you are dealing with mental health issues every single day. 

The CAMHS case worker saw that entry and referred it to Social Services without talking to me and asking about context etc. The Social Services person assigned was unhappy with the referral; the Social Services did a thorough investigation which stressed us out, and my daughter was furious with the CAMHS case worker for doing this referral as it made her feel insecure that she could be taken away - which killed the relationship between my daughter and CAMHS case-worker. The Social Services wrote an official report saying this case should never have been reported to Social Services and it should been dealt with by CAMHS. They felt CAMHS was trying to offload the case onto Social Services. They even went to great lengths to point out the lengths we (parents) were going to go to safeguard our child. 

Following that incident, the person assigned to us was dealing with child safety concerns. That makes sense. They were just doing their job. However, I have had several attempts by my new CAMHS case worker and the team that I had the CETR meeting (as my daughter is now in a residential mental health unit), who all tell me that we need a Social Services case worker. The Social Services case worker can get us help and financial support for our child. 

However, every time CAMHS escalates to Social Services, it gets to the desk of the person who did the initial investigation. And I can see he is genuinely a nice guy and means well, and he is saying that we won't be eligible for any help or support and Social Services would means test us. 

It gets even more complicated; I had a CETR meeting last week, and two people who were present at the meeting were in an advisory capacity, and they also had kids with ASD. We had a lengthy conversation about it. They asked me if we had Social Services involved, and I said no. They stressed how important it is to have Social Services involved. 

I told them the advice I was getting from Social Services, and they said it was incorrect because they both had a good income and some assets; however, their child is being assessed in their own right. To make matters worse, my child will be legally an adult in just over a year. So, she needs to be assessed in her own right.

I am now completely stuck and very frustrated and angry. I feel like screaming when it comes to the subject of social services. To make matters worse, the people advising me can't speak to Social Services as it can only happen in an official capacity. 

The Social Services person said that since they can do nothing, I should contact the Multi-Agency Safeguarding Hub (MASH) team to see if they can help.

I am curious to know if Social Services is like a post-code lottery, but what I hear from people in other areas is very different regarding how much Social Services does for them. I no longer know what is true and what is false when it comes to Social Services!

If you know anything about this, please let me know.

Thank you.

[Springcat]

I read your first thread and replied at the time under a different name
We had similar with my son
The only time we got a social worker was when he became an adult under a scheme called ...moving on to adulthood...that's from 18 to 25 ..
Under that scheme we had a care package of carers coming in to the home .
They sent a different man every time a carer was due ,often an hour late ,2 hours early,the wrong day ..and it didn't work not being able to meet the carer first ,so we never knew who was coming each time .
So that was an utter disaster.
We had social services pay for a taxi to college twice a week ,but it was means tested and we had to provide a lot of personal information to get that .
The other thing we were offered was a day center for drug addiction and alcoholic addiction...even though he has neither ,just autistic...
That was it ,sum total of help ...

[RyanLondon]

@Springcat Thank you. I appreciate you sharing your experience. From what I can see, you had a disastrous experience. If you have read some of the replies from other people in this community, some people had very positive experiences. The guy who was in the CETR meeting seemed genuine; he had two sons who were autistic, and he was saying how great they were and all the things they have been able to do for his sons.

So, either people like you and me, don't know "how to use the system", or something isn't right. In one sense, I have almost given up on the system - I'll comment on that another time - but I wanted to give it one more try. Just in case maybe I missed something.

[Gatorpickle]

Autism is not a mental health condition. It is a neurological one.

[Ted27]

@RyanLondon

I have several friends battling with social services at the moment, one with a daughter not a million miles away from where yours is at. I also have an adopted son with ASD. So I do get where you are coming from
I'm a bit confused though about what you might be expecting from social services as you have mentioned your friends income and assets and their child being assessed in their own right - assessed for what?
Is it the financial support? How old is she? If over 18 you should be looking at what benefits she can claim. Does she get PIP for example.

[DaftyLass]

It's a neurological condition, that can create situations that cause mental health issues.
Stress management, self esteem, depression, anxiety, self harming, eating issues, and more can all come with it.

[RyanLondon]

@Ted27 Thanks for your comments. My daughter is 16, will be 17 soon. So, she is not far from being "legally an adult." Now, the reality she has been in a mixture of day patient residential patients at the Coborn Centre for Adolescent Mental Health. We don't live in the same borough. From what I have seen, the Coborn has patients from all over London.

Anyway, my daughter got so bad that we were not even sure if we could keep her safe at home. She has been under suicide watch for almost 3 months now. However, in the end we decided that there was no way we could put her in an institution because a) we couldn't live with ourselves b) some of those places have some good people working there as well as attracting the worst of the worst. It's a magnet for sadists and would be pedo's - that's just my opinion.

So, if we were going to try and live with her in the community, we were told we might get:

1. Some carers or caring time to give us a break so that she could be kept safe
   
2. Activities that could facilitate her recovery could be funded or people could be provided to her do those things.
   
3. I know she was always academic (past) it was always important to her, so if she wanted to get back into it, then support, funding etc could be provided.
   
   The truth is I don't know how much they can do. But every professional I meet tells me Social Services needs to be involved, but when it comes to reality, they can't tell me how I can get that help. That's why I am here.
   
   If I say I must have had at least 20 plus meetings with various organisations over the last 2-3 months, who all at the beginning seemed like they could help me, but in the end I have almost always walked away like I wasted my time and felt even more disillusioned because I got my hopes up. I don't know if they are all doing a tick box exercise or something, or they have a pitch because of their roles - but if any parent was starting out now, I would probably tell them, save your time and energy, and if you can find a way of making money and funding it yourself then do that.

[RyanLondon]

@Gatorpickle I am not an expert in any way. However, almost every professional from NHS to the local council teams seems to be saying she has mental health issues on top of autism. She also suffers from depression and gets signals from God (she doesn't like the word voices). Now, you could say it's all related, but it may also not be. None of us know. We live in an environment/society where we have to go with what the professionals say. So, that's what I am doing. Thanks.

[RyanLondon]

@Ted27 We have not claimed PIP yet. I need to do that. Its on my list.

[Ted27]

@RyanLondon

That all sounds a bit of a pickle, ( not minimising at all)
From what you have said, yes I would agree there are mental health issues and yes she needs a social worker.
I think you may be coming up against thr same issue my friend did with her daughter last year. At 17 children's services were not happy to take her, but neither where adult services.
My friends daughter had a psychotic breakdown. Might be worth you looking at that to see if it fits what she is experiencing.
I'll have a chat with my friend to see what she suggests - her daughter does have an SW but it was a fight to get

[DodgeDoggie]

"If you are going to kill yourself, you will do it no matter what..." 

it was wrong for them to refer this on, instead they should have advised you on what sort of things to say and what approach to take. Yes you shouldn’t have said it BUT you’re clearly an overwhelmed parent trying to do their best and saying the wrong thing without thinking .

[Neveralonewithaclone]

We explored the social services route and i felt that the increased pressure of potential exposure to new people and ideas would be detrimental. I felt that we were in the dreaded middle. My friend whose child's situation was so so dangerous found ss to be utterly crucial.

What I'm saying is that I think you should take a very dispassionate look at what specific thing you are requesting and what service provides that thing.

I'm not trying to be dismissive at all, i know it's hell. However, as loving parents we are desperate for "help". But what help, and from who?

No one knows your daughter better than you and your wife. Have a good and calm think and break everything down into tiny chunks for you to process.

For instance:

Spend the next few months in a rural rental or not, this is your choice and don't stress yourself with checking what cahms or ss or the nhs think. You know best.

Take back your power as a parent and advocate. Personally, in your position, I'd decide to spend the next 6-12 months in the country being super super low key and babying your daughter. Leave all the noise of 'services' behind, at least temporarily.

Even thinking about them is so stressful.

But, i don't know your daughter. What does she think about the idea of the three of you taking a total reset for a good period of time and just watching Bambi, stroking dogs and baking bread?

Truly I'm not trying to be dismissive. Just thinking 'stop the world i want to get off' could be an option you could take.

[Neveralonewithaclone]

With regard to PIP the claim will be backdated to when you make a phone call requesting the forms. So you can take your time and just work on the form for a few minutes at a time.

[MiltonNorthern]

I'm a social work manager so I may be able to shed light. We get a LOT of referrals from CAMHS and other agencies for families with autistic children who are struggling for various reasons. However there is little (beyond facilitating professional network meetings) that a social worker can do. Many other agencies think that a social worker is necessary 'in case' something bad happens or that having a social work plan by definition makes a child safer, which is not the case when the parent is not causing harm to the child. In relation to what you are hoping for;

1. Some carers or caring time to give us a break so that she could be kept safe - unless she meets the threshold for the children with disabilities team (unlikely if you aren't already open to them) there is no funding available for respite or carers from social services
2. Activities that could facilitate her recovery could be funded or people could be provided to her do those things. - there are services that can provide support to autistic kids and families but these have a cost. They can be funded by social services under certain circumstances but only where there is a social work plan for safeguarding reasons. We get requests to fund autism services regularly and it's just not possible to do for all families within budgets.
3. I know she was always academic (past) it was always important to her, so if she wanted to get back into it, then support, funding etc could be provided. - this is for education to provide not social services.

it sounds like you need to apply for PIP and then you will have a pot of money to use to fund the support you need. Social services cannot just meet funding gaps for autistic children sadly. They have a clear remit for their funding and I don't think you meet it.

[Bubbleswithsqueak]

Does your daughter have an EHCP? It is supposed to cover education health and care, and a social care assessment should be done as part of the process.
You would probably be looking for something called a step down placement if she's coming off inpatient. But EOTAS (education other than at school) might also be a possibility, and could include all sorts of therapeutic activities and care

[hiredandsqueak]

We haven't had social services involved largely because in our LA autism isn't seen as a qualifying disability for the children with disabilities team unless it is paired with what they consider a disability so Downs Syndrome or Cerebral Palsy for instance.
Dd does however get ten hours PA support per week from the Autism Services that social care use. I secured this through her EHCP though.
There are advantages to doing it this way. I have no social workers coming into the home to judge my parenting. We would not get anywhere near ten hours through social care even if we qualified either. I am considered the PA's employer so I decide what they and dd do and the education department pay not only the autism services (£35ph) but they also fund the cost of any activities as well and neither dd nor myself have to make any contribution which, as an adult, dd would be assessed and need to make a contribution from her benefits.

[RyanLondon]

Sorry everyone. As some of you will know, I have been away. I am replying without reading recent comments, but I will get to them. Just commented on my other thread.

I have a simple question to anyone who has had Social Services being involved (in a positive way) with your teen/child due to ASD and or mental health reasons:

1. What is the best way social services has helped you or your kid and or your family?
2. Secondly, what is that you would like them to do for you? By that I mean how can they help you in a practical way, that you know is within their jurisdiction. A service or something that they do, but they may not have done for you.

I hope I am making sense. There is a good reason for my question. I will explain.