Core Assesment & Direct Payements, long post

[Violet5]

Hi all, i wondered if any of you might have relevant experience of core assesments ?

At the moment i have a daughter who is 12 and has quad CP and extensive global brain damage. She doesn't attend school (one in our are is awful !) so i home educate her and have done since the age of 4 with the LEA's agreement.
I also have a son who is 8 and has ASD, global developmental delay and hypertonia who goes to mainstream with 1:1 support.
I have 3 other children too who are thankfully all well.

My daughter who is disabled has recently suffered a decline in her condition due to an operation having not gone well. Also her body isn't coping as well with her condition due to a recent growth spurt.

I recieve direct payments which works out to afford me 8 hours of help a week.
So i employ my Mum to come in (she worked for the nhs as a carer for years so is fully trained in manual handeling etc) to come in for an hour and a half each morning, Monday to Friday. She gets my daughter up,washed and gives her breakfast while i see to the others and get them to school (my husband leaves for work at 7am).

My social worker visited recently and asked if i thought the money i got was enough to cover the help i needed. I said honestly no, my daughter has an impacted bowel so often requires suppositries and lots of toilet time, she has pressure sores from toe separators, foot splint etc etc that need careful care. She requires physio each day and lots more. I have to do the school run in the afternoons with a wheelchair and a two year old (i can't drive) and some days my daughter can hardly sit in a wheelchair to take her out due to displaced hips thanks to a failed op. So i said it would be nice to have a little more to maybe have help with the school run or tea time (she requires feeding) or the toileting/bedtime routine with her. It is not deemed apropraite for my husband to help with any of the personal care as my daughter is 12.

So basically my daugher is home full time, the size of an adult really now, and is severly disabled and with the exception of 8 hours a week i recieve no help with caring for her. My husband works fulltime,sometimes away and one of my sons as mentioned has problems too. I thought it wasn't unreasonable to ask for a few more hours a week ? Maybe it was ?

I was told a core assesment would be carried out over 35 days and we'd be interviwed at length,especially my husband as he is the childrens step father not biological (bio father left years ago and has never contacted since,have no idea where he is and csa couldn't find him either,was suffering depression). Anyway obv ss are curious as to why my husband would have taken on me and my family and how he feels about having disabled step children.
He is genuinely the loveliest person i have met though so i am not worried.

For years all proffessionals involved have wanted to get my daughter into a school and of to clubs for the disabled to socialize.
We have a large family though and she loves that we all get together and do things on a weekend and doesn't actually want to attend weekend clubs (she has mental age of around 4yrs due to brain damage)as she would be missing out on family time and fun with her siblings. SS think this is keping her in a bubble though .
And i am worried they will use the core assesment against me to insist she spends more time in the community (i'd have no problem with that if thats what she wanted but it isn't !). She' s so tired a lot of the time due to her illness that being carted of in buses to this and that would be awful for her) and she's in bed by 6pm and sound asleep by 7pm every night. What works for one child doesn't for another and i think as Mums we know our children best and can judge that for ourselves what would and wouldn't suit them.

I'm just wondering if the core assesment will be really worth it ? If i should withdraw my request for extra help ? If i even have the right to say no to an assesment ?

Any advice from anyone on this board would be greatly appreciated as i don't feel anyone outside of 'this world' would really understand. Thanks for reading.

I'm sorry your dd isn't doing so well.

I would go ahead with the core assessment but get a friend to sit in on some of the interviews with you if poss to back you up and to make sure you don't forget things?

Have you thought about what sort of help you need? Taxi for the other children for school? Laundry service? Homecare service? Siblings support group? Respite?

Remember the socialising for your dd may also be for your benefit, to give you space to breathe.

Thanks for reading and replying and your advice. Think i am going to spend some time drawing up a list/plan of the type of help i would like if possible.
I wasn't sure if i could have a friend present so thats good to know too.

My daughter does often go to a relatives for a few hours without me on a Saturday to play so i do get some breathing space from her and she from me. My daughter is a very sociable person but i don't wnat to have to exclude her from our weekend family activities so she can go to a club when she'd rather be doing what we are. Also clubs in the evening are out because she's in bed so early, not my choice but out of her need. She sleeps a lot (sometimes in the afternoon too and then all night !) due to her illness.

When she becomes an adult i guess there will be day centres that i would take her to and if she likes i'd be happy for her to go to.

Its just difficult at the moment to find the right/appropraite socialization for her at her age in our area. As i believe socializing is good for everyone and would never deny her that.

Its hard work looking after a severely disabled child - and I only do it weekends and holidays.

The SS line on it should be to provide help enable you all to have as normal a family life as possible in the circumstances.

Take care of yourself.

It is full on, and i was hoping that without having to have masses of interviews that they would understand why i might need help when i've got my daughter on the commode and can't leave her and at the same time my son is needing help with something (due to his ASD,GDD) that a bit of help at those times would be really useful.

I try so hard to ensure that we as a family have as normal a life as possible and i hoped they would appreciate thats why i was asking for some help now. My daughter is the size of a disabled adult and has complex health needs and it is hard to give her all the care she requires with just 8 hours help a week because it is physically hard work and tiring. I get up at night to turn her, change her nappy etc and i do get a bit worn out. They do offer to send her to respite but it's just daily help i would find more helpful for me as when she comes home i still have it all to get on with.

Thanks so much for replying though and your advice

As far as social Services are concerned, home help is cheaper than a respite placement, so you might be in luck. Sounds like you need Homecare.

Thanks, yeah my daughter picks up every illness going too and then it very easily becomes very serious
Theres nothing round here that doesn't either run on a night (when she's in bed) or on a weekend when we're of on days out as a family or visiting family etc.
In a few years time she will be old enough to access some day time centers etc though.
Reason i didn't send her to our local special school was that it really is grim, and other mums have taken their children out too because they've been left sat in wet bibs all day, and just not cared for with enough thought or kindness.

Good to hear you don't think asking for more than 8 hours is unreasonable of me, i was worried people might think i'm being greedy.

It is sad that ss and people in general wonder why my husband married me because i have disabled children, but i guess thats part of the society we live in these days.
I feel a bit guilty that ss are going to be grilling him and putting every aspect of our lives under the spotlight just because i've asked for a few more than 8 hours help a week but he said he thinks i deserve it so is happy to take time of work for a series of interviews, thankfully.

Thanks for replying.

I wonder if SS are suspicious about his motives? (Sorry if this is inappropriate but) I know that, statistically, children are more likely to be abused by someone known to them, but who isn't a blood relative. And abusers often target vulnerable people like the disabled. Maybe they've got a computer program where they've put in this information and it's come up as a huge red flag.

(I'm a single mum who has met someone willing to 'take on' me with my SN child, so I do know there are good guys out there!)

I've had a core assessment and I found it very stressful and ultimately unhelpful...but I would still encourage you to continue with it, as they have a duty to provide that help.

No information has been flagged up and they are not interviewing him with that in mind.

The only reason he is being interviewed at all is because i have dared to ask for more than 8 hours help a week and it is protocol to interview us both.
I have had to ask for help because he works fulltime and sometimes away at business confrences, and he wouldn't want to help with personal care/commode anyway. Which i think is fair enough as i wouldn't expect or ask him to, she's 13.

He is a very good person as are the rest of his family and we have been married for a good few years now.

He wants me to have the assesment done in the hope i will get more help, i'm just gutterd he has to take yet more time of for appointmmnets. Almost all his holiday entitlement is used up as it is taking us to and from appointments (i don't drive).
Guess i will have to have it or either stay as i am with little help.

Sounds like yours was stressful, i'll just have to keep my fingers crossed i guess, could do without extra stress really.

I've tried and failed 4 times, i'm a numpty. Wish i could have passed . Can't afford any more lessons atm either

I saw on another thread that DLA and carers are now classed as income by FF and as husband works fulltime i don't think we'd be eligable anymore.
Plus they helped me out with driving lessons about 5 or 6 years ago now so couldn't really ask again .

Also as i only get 8 hours help a week (that i have to use to cover school run) i'd have to have all my lessons post 7pm when husband gets in from work or at weekends.

I do intend to try again at some point though as i hate not being able to drive.

Thanks. I am going to look into as many avenues as possible because it would benefit us all if i could drive.