Disability Assessment

[Kanga59]

I requested a disability assessment for my son who is disabled by definition (Eq Act 2010). My local MASH team agreed to do the assessment and I chased it up last week, we still haven't been allocated to someone for the assessment.

I'm wondering if there's any merit in having it done now. What's the benefit/disadvantage of having an assessment and your child is then presumably labelled as officially disabled?

I initially applied for the assessment with the hope of getting some £ for direct payments so I could afford to pay for someone to help me with the care. As it happens, I'm coping much better now. Although of course I wouldn't say no to paid help.

[Coffeemachine]

what is it and who does it?

we get DLA, have a dx of autism and other things but we never had a 'disability assessment'. never even heard of it.

[Kanga59]

Thanks both. It's definitely a disability assessment...

[Coffeemachine]

what does MASH stand for?

[madwomanbackintheattic]

Never heard of it. Got a link?
Usually dx of whatever-it-is via whatever the diagnostic authority is and then referral to social and ed leads to services.
It's a little unclear what your diagnostic authority has been, and which services you are seeking to get improved - respite care? Direct payments you can use for respite care or other provision?
I don't know what a MASH team is. Our LA had the CWD (children with disabilities) team that did these sorts of assessments. We weren't entitled to anything as she has two parents, neither of which were drug or alcohol dependent. It was little to do with the actual disability, and more to do whether or not the parent/ had fallen off the deep end trying to cope. So, in that case, you are more likely to get support if you are a single parent struggling to cope with your disabled child due to alcohol dependency or whatever.
For us, we used her DLA to pay for respite-type care. There was no way we were going to be entitled to anything else.
Do you get DLA for your son? This would be the first channel for covering additional costs associated with disability.

[madwomanbackintheattic]

Thanks Polter.

[Coffeemachine]

would they allocate respite? think OP rather needs a Carer's assessment.

[Coffeemachine]

agree with madwoman, I would apply for DLA.

respite (in my LA at least) is only available once you are beyond breaking point - family breakdown, homelessness, drug/alcohol problem etc but you won't get it if you are coping (even if just).

[madwomanbackintheattic]

www.gov.uk/government/news/working-together-to-safeguard-children-multi-agency-safeguarding-hubs
I don't understand why a safeguarding hub set up to help prevent vulnerable children and adults who are at risk of abuse slipping through the net would be carrying out disability assessments?

Do Children With Disabilities teams not exist now? I can understand that children with disabilities are more vulnerable/ at risk of abuse, but I don't understand why MASH are involved with routine assessments for direct payments? Are these services now combined in some areas?

[madwomanbackintheattic]

Just kidding. I assume the lack of resources for respite is the same across the country. Although Hants did pull the notorious stunt of halving everyone's respite care for six months, so that when the govt announced a stunning new amount of money for respite, they could put the respite that had been cut back in place, and cheer about how fantastic they were with all the 'additional' care they were providing. The fact that no one at all had any additional respite and had been suffering for the previous six months escaped them totally. Bastards.

[Coffeemachine]

no, very very far from it, we cannot get any respite at all and our circumstances are really dire

[Kanga59]

Thanks all.

In receipt of higher rate care DLA now, approved in December. It barely touches the sides though as I have given up a very well paid job to look after my son, and my husband was made redundant in Novemnrr last year. So finances not great ATM.

I don't know why the disability assessment has to go through mash either. I didnt really want to have to get involved with "social workers" as it stinks to me of at risk families, drug and alcohol abuse etc. And it's a stigma I didn't want to have to deal with.

However in our county, if you are awarded direct payments, then you are automatically allocated a social worker so that the council has an overview on what you are spending their money on.

Yes it's for respite. Tried our local hospice in January and its not for me. At the moment.

[Kanga59]

There's no sibling risk Polter, in fact no one has even asked if I have any other children yet.

In our county, all direct paymets queries go through the mash team. You request direct payments....they decide if they will do an assessment based on your circumstances....if they decide they will do a disability assessment then they allocate you a person from the disability assessment team to carry out that assessment....and this is where I have been sat for 3 months....and if they decide you do get direct payments then you are allocated a social worker so that they can have an overview on what you are spending their money on.

[Kanga59]

For others in receipt of direct payments for respite, how did you get direct payments?

[madwomanbackintheattic]

The only recipients I know are either single parent families or have some other reason (addiction or mh issues, or adult disability that prevents both work and caring responsibilities for a disabled child) tbh. I suspect that you will not be a high priority as your dh can be looking after ds as he is out of work, and you would both be expected to job search. Whoever doesn't get a job gets to keep caring... It's monumentally depressing, but if there are two healthy adults (whatever their job status) at home, I have never seen respite payments awarded. Not until they divorce because they can't cope with the strain. Particularly once ds is school-age, as they will consider this time off for you.
Actually, I lie. I do know a couple that pretended to split up to qualify not just for respite, but some additional housing benefits. That was a while ago now and we aren't in touch any more.

In reality, there is usually a readjustment of circumstances once one parent has to give up work - so downsizing (or look at local authority support if ds needs an adaptive environment, hoists and whatnot). For us, we managed because I worked weekends and dh worked in the week. Crap for our relationship, but someone always at home, and at least some money coming in. Just working weekends put me over the limit for carer's allowance.
Do have a good look around at what local charities and groups are offering as well - not sure what ds's needs are, but there may be groups for pre-schoolers and parents, as well as clubs offering out of school activities for older kids (both evenings, weekends and school holidays). If you are in one of the places that is lucky enough to have a summer play-scheme, this can be useful too. Mencap often have great weekend activities that are pan-disability friendly. Also join skinuk - they used to have an active local scene that gave lots of ideas about respite-type opportunities run by local organisations. They may also know what the current wait is for an assessment locally as there are usually a few families at least on the wait list...

Keep pushing for the assessment though. They do come with a free social worker but dd2 wasn't 'disabled enough' to get one, despite the HR DLA lol. They can open the doors to a lot of local support - but generally it is available if you can find it in any case...

[madwomanbackintheattic]

If you do have other children, do look out for siblings groups and activities as well. Sometimes hanging out with other kids who understand can be helpful for kids - we had a siblings gaming club at one point...

[Coffeemachine]

agree. with 2 healthy adults at home you won't have a chance. I am the main carer for a severely autistic DD, have a 6 year old NT DC. I am a carer for a very unwell DH as well and I work all school hours. I don't get respite because I am 'coping'. that is pretty standard.

how old is your DS? is he at school yet?

[GlitteryShoes]

Our LA does fund short breaks for level 2 children - day trips, a youth club and occasional residentials. Level 2 is low need - support services but no SW. The trips and clubs are free to us, but expensive if you have direct payments, so we have not applied for them

I would definitely speak to local parents as provision varies so much between authorities.

[Kanga59]

I think we've got a bit off topic because we diverted into an explanation of why the mash team is involved.

So going back to original question

I'm wondering if there's any merit in having it done now. What's the benefit/disadvantage of having an assessment and your child is then presumably labelled as officially disabled?

FWIW hubs working again so it's not a case of two healthy adults sitting at home being layabouts looking for as much help as possible

As states in OP, I looked into DP last year when I needed help but am now coping much better. FWIW, there's no doubt that we will get DP - I'm not looking for opinions on this aspect nor are they relevant when you don't have any details whatsoever of my child's health

[GlitteryShoes]

I was replying - the assessment often determines direct payment which you can use for respite, but in our LA it works better not to claim it, as the respite is free then. It really depends on your locality and what you want to achieve.

[Coffeemachine]

the disability assessment will not determine if your DC is disabled. it is as Per said and if he gets HRC DLA he must have very severe needs. I suppose he also has a dx of some sort and would fall under the Equality Act.

I guess that disability assessment is just what the assessment for respite care is called where you are but it doesn't actually have any impact on his disability status.

[Coffeemachine]

polter said