Being Let Down by 1-2-1 Support

[Orange45]

Hi, I haven't been on for a while just wanting some advice. My son whose autistic and non verbal was having 1-2-1 support through an organisation who so I thought specialized in Autism - one of the support workers my son has been a little agitated and starts to push and prod moving forwards and backwards there isn't an obvious trigger but there is something which the support worker has not picked up on. On Tuesday he became agitated while they were out and the support worker ended up ringing me to collect him as he couldn't stop my son from pushing and prodding him. He came home and seemed fine Thursday he went out with his newest support worker and the support worker said my son didn't seem his himself not really interested in doing any activities. The support worker said at one point he started to become agitated and started pushing and prodding but the support worker managed to diffuse the situation. I mentioned this whilst chatting to the support last night (Thursday) worker who was coming to support my son today (Friday) as she used to be a teaching assistant when he was in full time education which is a few years ago now. So this morning (Friday) I got a phone call saying that there was not going to be any support today due to the incident that happened on Tuesday and also what had happened on yesterday (Thursday) which I realise now was an oversight on my part for being too honest. So now I have no support for my son and feel very annoyed of how my son and I have been treated. Moving forward I think my son might not be enjoying the 1-2-1 support as much as he did probably when it all started towards the end of last year. The support has increased from 1 day upto 3 hours a day to 3 days upto 3 hours a day. I don't know what to do and how best to help my son as he is only 22 years of age and he needs some independence and to have other people in his life to help support him with activities he enjoys other than his dad and I. I have thought maybe if he went to a small group that might be better for him rather than having 1-2-1. I would really appreciate some advice on the matter. Thank you

[Iolo]

Hello.

I would expect the agency to be exploring why this might be happening and putting in a plan to help overcome it. Have they developed a Positive Behaviour Support plan for your son and are they reviewing this?

I guess what springs to mind for me is did anything particular happen on Tuesday that triggers the moment when he started pushing and prodding, that sounds like he was either getting upset or mischievous/boisterous? Did not being able to address whatever was going on for him then set off the series of events that has slightly disrupted his relations with the support workers, such as confidence, trust, need for predictability? Is it reflective of a wider issue, like is going out 3 times a week too much for your son as I must admit having stayed home a lot in the last year I can find public social situations a little overwhelming at the moment and I don’t have autism.

Sounds like the support worker who could diffuse the situation has some helpful hints and tips for their colleagues that could help your son overcome and regain confidence with them. I hope as an agency they would get curious about what’s happened and wish to work through it rather than just withdrawing so I would speak with whoever is the Team Leader or Manager.

Bottom line is we can all have off days, both your son and his support worker, it’s about moving forward constructively.

I hope something in that slight ramble is helpful. Good luck.

[Orange45 in reply to Iolo]

Hi lolo, thank you for your feedback much appreciated! It was the Manager who rang me and said they were removing the support worker from the Tuesday support but she also said that the support worker who was supposed to come Friday morning was not going to come either and the manager said we need to look at 2:1 support which is not going to helpful for my son as generally he is ok. The support worker for Tuesday had been off for 2 weeks on leave and this occurred. But what really annoyed me was the manager pulling Fridays support on the assumptions that my son might behave in the same way. This has left me disheartened with the organisation who are supposed to be in tune with autism as they offer support to those families and undergo training specifically for autism. I appreciate your concerns with the 3 day support but they are all up to 3 hours a day Tuesday, Thursday and Fridays. I did wonder whether the Tuesday support worker wasn’t really suitable for my son in the past but as my son was on the whole accepting and going out I just put it at the back of my mind as it’s not about me it’s how my son is but with the incident happening on Tuesday proves my son isn’t happy with the support and maybe as he’s non verbal that was his way of showing it as I know there must have been a trigger that set him off.

Now it’s me who has probably rambled on way to much in response to your reply 😊

[Rupertthebear]

Really sorry to hear you are going through a difficult time. I think it’s really important the support workers build a relationship with your son before taking him out 1-1 by themselves . You too need to see if they are suitable for your son especially as he’s not that verbal. He’s clearly got anxiety and perhaps confused messages . I will be hopefully applying for a support worker but it’s going to take months before he will go by himself with them . You need to monitor your sons diet/ sleep / anxiety very carefully , I am sure you probably are but they can affect them . Did the support worker say something that triggered thoughts , anxieties hence start to prod and behave in this way ? Has the home situation changed ? It’s a minefield but you just have to explore the different things but most of all they are very vulnerable .

Perhaps reduce the hours to 1 a day and slowly build up over time .

[Orange45 in reply to Rupertthebear]

Hi Ruperthebear, thank you for reading and responding to my message much appreciated! Yes I have done all what you have mentioned in your reply. I said to the manager she wasn’t there and only has the support workers account and he obviously didn’t pick up on my son’s mood response to what they were doing. Like you said they are vulnerable and we put our trust in people who have their best interests at heart - everyone can have an off day that’s just life but it’s how best to handle the situation to be honest I don’t think the support worker has that ability. Once again thank you for your feedback. Good luck with finding 1:1 support for your son

[Rupertthebear]

Was it his social worker who got him this 1-1 support or mencap?

[Orange45 in reply to Rupertthebear]

It was me who mentioned the organisation to his social worker and both myself and the social worker went to visit them and had a meeting where I fully informed them about my son and the bad experience he had previously from the day care centre the previous social worker made him go to.

[Michele1965 in reply to Orange45]

If there is a change in usual behaviour the organisation supplying the support do need to be reflexive in their practice. However crisis response is typical with the organisation withdrawing the resource. A very similar scenario happened with an autism organisation receiving my son's PBSP in advance but then failing to follow it. His complexity required support staff who were experienced and qualified. The carers who came were enthusiastic but lack of experience and changing the routine resulted in my son becoming agitated and anxious culminating in an incident where the organisation was withdrawn and my son was deemed too great a risk to continue using leisure centre swimming pools. A real loss for him as this was his preferred activity and he had been going swimming for several years before the crisis that wasn't his fault. The calibre skill and experience of support staff must always be the right fit for the client or it will be the client who loses out on future support. Please communicate with the service to further understand the events details and sequence to get a conclusion that is enlightening and allows learning and understanding to help your son continue to grow in independence and social development.

[Orange45 in reply to Michele1965]

Hi Michele, Thank you for your feedback much appreciated!

I take on board what you are saying the change I guess in my son’s behaviour was while he was out with the support worker and reacted to what the support worker was telling him of what they were doing next. With my son being non verbal I have said that he would benefit from using pecs to explain what’s happening next and that way my son would understand and be in a position to either say yes or no. Obviously this hasn’t been happening as the support worker thinks as he has been supporting my son for the last 9 months deemed it not necessary.

I have thought maybe my son doesn’t want to be supported by him as there have been other little issues since he started and this being the 2nd physical one. The manager said there is no triggers but I believe there is but the support worker is not in tune enough to pick it up as there is always a trigger no matter how big or small.

I emailed the manager yesterday and copied in his social worker and will see what response I get from the manager. The social worker doesn’t work Mondays so I will be contacting her tomorrow to discuss what happens next.

Once again thanks for your reply and any thoughts you have are most welcome!

[Sarah_Mencap]

Hello

Thanks for post about this. Just to let you know that Mencap's helpline has advisors who may be able to help with this sort of thing. You can call them on 0808 808 1111, or email [e-mail].

NAS (National Autistic Society) also have a lot of help and information here - autism.org.uk/advice-and-gu...

Best wishes

Sarah

[Orange45 in reply to Sarah_Mencap]

Hi Sarah,

Thank you for reading and your reply. I will look at the link you sent

[Kieran_Mencap]

hellothank you for getting in touch. There is great information suggested already. It might be an idea to look here ambitiousaboutautism.org.uk/.

All the very best

Kieran

[Orange45 in reply to Kieran_Mencap]

Hi Kieran, Thank you for reading and your reply I will have a look at the link!