Needing Advice

[Kittybac47]

I recently relocated to the UK from Australia with my daughter & her 18yr old twin sons , the boys have an extremely rare chromosome deletion as well as multiple complex issues , no medications or therapies have been effective , they are either pointless and do nothing or have severe adverse reactions. The boys are developmentally 2 and need assistance with all aspects of daily living , both require 1:1 care 24/7 . As we do not understand how things work in the UK we asked our local council for advice they then assigned a Social Worker to help us , unfortunately she has been of little or no use and is not listening to anything we tell her , she insists the boys need transition into respite , they don’t, she is suggesting overnight respite in totally inappropriate places , and is not a good fit for our family , we have asked that she either listen to what would actually help us as a family or no longer work with us . Now she is requesting a meeting at our home with herself , her manager and a third person who is supposed to entertain one of the boys who will be at home the other one will be out with a respite worker . She has been here before and is well aware the boys do not allow us to talk to anyone and will become anxious and possibly violent if they insist on talking, this is also inappropriate to be talking about the boys when they are present, one has severe anxiety and will tell these people in no uncertain manner to get out of his house . Can we ask to no longer have Social services involved with our family as we were not referred but rather requested help or do we now have to put up with them , they are providing no help and are actively making our lives harder .

[Jofisher]

hi my advice would be get deputyships asap for property and finance and health and well-being and apply online on the gov.u.k. Website and I would contact the carers association and register with them ask for a carers assessment for your daughter the mum of the boys. I would also consider getting an independent consultant social worker I’ve used one and she’s been amazing. If the boys don’t get benefits make sure you apply for them there are many things that could help you all as a family it’s just knowing where to get the help. Mencap helpline might also be useful. The local council have information regarding what’s out there for those with a learning disability . Good luck please ask anything that you are struggling with and I’m sure someone on here will know what to advise you. You can get cheaper theatre tickets and a CEA card for the pictures. Disabled bus passes cheaper train tickets all sorts of things every little helps as they say. Do you need a blue badge to make parking easier speak to your county council or you can complete the form online but if it’s the first one their GP may have to fill in something as well but check the form as I can’t remember sorry.

[SpeedyH]

Hi there. You and your daughter do not have to have social care help in your role as carers, however the twins are now adults and in the UK they are now autonomous adults. Social care will take into consideration your input but it has no more weight than that. Soc care have to act in what they consider to be the twins 'best interests' and they will probably remain in the twins lives because of this. There are wider issues like contingency if you and your daughter suddenly become unable to care etc.

You can request that the meeting takes place online or in a venue to suit you.

As Jo says, you might want to apply to the court of protection for deputyship which will give you more say in the boys lives. You can apply yourself but given the huge learning curve you now find yourself in the middle of, you might prefer to get a solicitor to apply for you.

Also, be aware that social care is chargeable in the UK and is means tested on the boys income and capital.

If the twins have very complex issues they might be eligible for CHC (continuing health care) funding instead of social care support and this might suit you better. Perhaps ask the social worker to refer you for this.

[lqrt43]

My heart goes out to you. I totally understand. When our children/grandchildren are little, so many professionals seem to cause them distress and bring no benefits to their daily lives. It can become a mindset to feel we have to protect them from unhelpful interference... and I completely understand how upsetting it can be for the boys to have strangers in their home and how difficult and disruptive this feels.

There is so much that may seem odd or shocking for you in the UK system – and the technical legal background (mental capacity) is complex. It will take some time to get on top of that. But, for now, in your position I would see the next visit as my priority.

It sounds as though your relationship with the social worker may have got off to a rocky start. As SpeedyH says, the social services team will have a key role in making decisions about your grandsons for the future (it makes no difference that you made the initial contact, as they have legal and professional duties to your boys - and they would have been in touch at some point).

So I would try to see the next meeting as a really important opportunity for you and your daughter to show you are keen to build a positive and collaborative relationship with the social services team. I would try to make sure that the next home visit was as welcoming to them as possible (however hard that might be). It is important to be seen to be open and helpful. Most social workers are highly skilled and extremely caring and will treat the visit as informal – but be aware that they may need to visit the home environment. They will be assessing how your boys are cared for and how things are going.

My advice would be to try to focus on the positives in this system. We all spend our lives trying not to worry about what will happen to our children as we age – the benefit of this system is that it is designed to help our young people. If you can build a good relationship, social workers will appreciate (more than anyone else) what a wonderful job you are doing for your boys and they will want your input and involvement in the decisions they make. Although they currently lack knowledge of your boys’ needs, remember that the team will have come across many other young adults with the types of daily needs your boys may have - and they will be familiar with the settings and resources available locally and know how to access these.

For example, in offering respite they have shown that they are willing to offer resource/funding to help your boys. While it may seem threatening and worrying (particularly if the settings are inappropriate), try to show that you appreciate the positive benefits they are trying to offer your boys. As SpeedyH suggests, they will be focusing on trying to help your boys have rich and fulfilling lives and on ensuring there is a contingency if you and your daughter were to become ill. I would try to show the social workers that you appreciate how these aims could help the boys and that you are keen to be helpful. Before the meeting, I would also plan my thoughts on these settings, so that I could give all the detailed reasons why they aren’t right – these will be obvious to you and helpful to their assessments. (For example, are there physical dangers? If so, what are they and what would a safer environment look like? Have the boys been somewhere similar in the past and become upset? How did this affect their wellbeing and behaviour?) I would try to approach the visit with the mindset that the social workers want to help your boys to have the best care and the best opportunities in life.

Good luck - I really hope it goes well for you all.

[Kittybac47 in reply to lqrt43]

thankyou everyone for your helpful advice it is very much appreciated, we will definitely apply for Deputyship asap as our boys are vulnerable and at risk without it , their condition is so extremely rare that no one gets it , they are literally the only people registered in the World with it , once again thank you , hopefully we can find a way to move closer to friends & family, they are currently 3 hrs away , we couldn’t afford to buy anywhere nearer & can’t rent because of their behaviour, but all this is proving we desperately need their help & support as we have never felt so utterly alone , misunderstood and in danger from people who are supposed to be helping our family , it feels as though the walls are closing in and there is nowhere to run .