Disabled DC and professionals in the home

[CompletelyOverwhelmedAgain]

I have 2 severely disabled DC. One in particular is particularly struggling and so is currently unable to go to school.

There are many (many many) professionals involved who all want to "support" our family. This is great in theory but much of this "support" consists of just coming round to our house for endless meetings and saying how hard it must be for us. We get so little actual practical help or respite.

My house no longer feels like a home, just a therapy centre and I'm expected to drop everything for hours and hours of meetings every week (even though I work full time).

AIBU to tell them to back off with the meetings and support? I feel like I'm drowning.

No, I wouldn't want endless visits to our house either. Do you have written minutes of the meetings? Can you request that there has to be a plan and aim for the meetings? What I'm trying to say is that you start to limit the meetings to ones which produce actions. There's absolutely no point re-hashing the difficulties your DC face time and time again without bringing any new ideas for help to the table. And if there are ideas of actual support or respite, they need to agree on a timescale within which it will be offered.

It wouldn't hurt to point out, in writing, that you have a full time job, time is precious and you need to keep your job for the benefit of the DC. So often it's expected that one parent is always there, and will give up work to facilitate their work.

Can you arrange for the meetings to be held elsewhere?

I would be very careful turning down support as in the long term that could make things even harder.

No written minutes, but that's not a bad idea.

They totally expect me to give up my job, I don't think they're used to two parents working and this was a lot easier as a SAHM in terms of the meetings.

I also find the home visits really invasive. They keep assuring me that we've done nothing "wrong" but even disabled children's social workers insist on seeing DC's bedroom for example. I feel like I'm on show all the time.

@Sirzy sometimes they can be held elsewhere but if I'm working from home there is less time commitment if they come to me.

If your DC are school age then are therapies usually delivered through school? If so, can you liaise with the SENCO to arrange an MDT where you can set out the ground rules and everyone's role going forward? Meetings at your house are not needed unless they are doing direct work. I suspect they are talking to avoid doing, if they don't actually know what to do.

I’d limit meetings to those that actually result in practical help. They could very easily arrange one multi-agency meeting to gather information etc rather than each organisation doing that separately. If it’s various health professionals it can be helpful to have community paediatrics on board because they can coordinate the various health specialties- they were a life saver for me in pulling together various disciplines together for my DD.

The reality is though that even cutting meetings to a minimum, there are still loads especially if regular therapy or treatment is needed. Many parents of disabled children don’t manage to work full time, so we’ll done on that front, you may find though that there comes a time when it’s simply not sustainable.

I know how you feel. As well as my son's educational and health needs I had carers and district nurses coming in for my dad who lived with us. It was bedlam and we lost our sense of home being our sanctuary. Ultimately we had to just get on with it but I found the daily violation into my private space caused a lot of stress. Didn't do my son much good either.
Can you push some of these meetings online?

We were in a similar situation with our oldest till eventually I said to hubby I can't stand them coming around anymore. All they do is say try this,that and the other and what a great job we are doing every time stuff we already know. So we stopped it all and the stress has gone. They still call once in a while offering help but it's same help as above just visits so I say thankyoy but no thankyou we are doing fine.

I also have 2 disabled DC and reached rhe point all the professionals were causing more harm than good. It was too much talking, visiting and not really doing anything. I sacked the vast majority off and am so much more relaxed for it.

I know what you mean I have one severely disabled child ,I feel.like I'm being judged constantly and even though we have been accepted for respite d it hasn't actually materialised yet ,so we don't get much in terms of actual practical help.

I think sometimes you have to be clear what YOU want from these sessions. What DC NEED from these professionals.

My DD is not a severely disabled as yours sound and I got very fed up with it all when she was small. I ended up with a list of what I wanted. And when a meeting was concluding I asked for agreed action points. If none of the action points were on my list - (or were useful new suggestions!) I'd decline a futher meeting. It was also useful to 'check in' with professionals wanting to book another session as to whether the agreed actions had indeed been actioned - focused their efforts a bit as I wouldn't agree to a session until something had progressed. Sadly still playing the game with a teen DD.

Dp's dd is severely disabled, getting a meeting with her social worker more than once a year is impossible, ditto her nurse specialist who coordinates her care. I'm jealous of these professionals!!! Once they hit 28 they get ignored

Are there regular multi agency meetings where they can all share information and make sure they are not duplicating? If not then there should be, esp if you're under a Child in Need plan which I assume you are if you have a social worker. This is where I would kick up a stink, when you have them all together, and ask for it to be minuted.

You need to make absolutely clear that these frequent, uncoordinated visits are having a negative impact on you and your family - and if they don't take that on board then request a formal carers assessment which they have a legal obligation to complete - this should look specifically at your needs and at how professionals can best support you as a working carer ie: by coordinating visits, doing school visits, limiting home visits to after work where possible etc.

I say this both as a person with some caring responsibilities and former children with disabilities social worker.

You need to take control of these meetings instead of letting them control you.

I was in the same situation for the first 2 years of DDs life. Working 2 days a week, travelling the county hospitals to see Consultants in different places to avoid appointments on my work days and juggling numerous healthcare/education/social care professionals who wanted to do home visits. I found it was getting to the point where I couldn't get out of the house in between feeding DD (who was a very slow feeder). In the end I ruled one morning a week out of my calendar for them to visit and told them this was the time I was available. It seemed to work as I also had them in one hour slots and sometimes they passed each other on the doorstep and I introduced them to each other - often they were unaware of each others existence so it was an education for them too.

I was just coming back to suggest this In the end I ruled one morning a week out of my calendar for them to visit but @ohtowinthelottery got there first.

Do the DC have a similar condition (as in do the people visiting deal with questions concerning both DC in one visit)? If not, maybe setting aside time for one DC and another block of time for the other would be easier for you.

So many of you sound like you're in the same position (or have been)! Especially the awarded respite in theory but it apparently not being possible to arrange.

I am going to take all these suggestions on board.

I am so stressed, each professional wants to be the hero and has the best new flashy ideas, all we need in reality is a break!

Unless they are direct therapy or assessments of the dc, the meetings can be done online.

Due to dh's illness we currently have carers in for most of ds's waking hours and I hate it. Our house doesn't feel like our home especially since those overseeing the care package and some of the carers think they can override my decisions regarding ds.

Lots of MDT meetings, apparently the DC get discussed almost constantly.

The DC have similar conditions but different (severe) presentations.

So sad that nothing has changed since my experiences over 30 years ago.
Have you had a carers assessment? You have a right to support for you rather the focus always being on DC needs.

I remember having this problem when my older 2 dc were little. Dc2 was failure to thrive and development delay so we had professionals round every day sometimes. Dc1 is autistic and hated them coming round, he used to have meltdowns all the time.

This has been my experience too - with both my own complex health issues and my sons (I have lupus and multiple disabilities and my son has severe autism and learning difficulties). I got so fed up with it all. I think the reality of it is that a lot of people just want to talk to people, they want the opportunity to offload and chat - and there’s nothing wrong with that- but for me I want practical help, I don’t need or want the sort of “aw poor you…” type conversations we seemed to keep having and nothing coming of it. I prefer to just muddle on by myself if that’s the case.

No carer’s assessment for us yet, I asked in the past and got completely ignored.

Eldest DC not in school at the moment and LA just won't respond to me about alternative education.

Does she have an ehcp in place?

I had to give up work to juggle the endless appointments and therapies for my disabled DC. I didn't find most of the professional involvement helpful in itself either, but found it was useful to have them at hand to gather reports and evidence - for EHCP, tribunal, grant applications and DLA application. After a while my DS went to weekly residential school and all therapies were delivered in house so I had much less to deal with. I understand the frustration but I'd caution against just stopping certain involvement as it can be handy to have all that evidence on paper.

It was nice having the week to myself once he was in the right school though! I never did go back to work and got to catch up on all the things on my big to-do list.

Is DC1 compulsory school age? If so email the Director of Children’s Services requesting provision under s19 of the Education Act 1996 (and if she has an EHCP any provision specified and quantified in F under s.42 CAFA 2014). If you have already done that or they ignore or refuse email again threatening judicial review. Then if that fails contact SOSSEN for a pre-action letter. If DC has an EHCP you also need to request an early review.

Contact have a formal letter you can use to request a carer’s assessment. If you are ignored or refused they also have help challenging the decision.

Rather than many, many individual meeting I insisted fewer multi agency meetings are held. Not only does it take less time overall I have found they are more productive.