Reason for a Social Care Needs Assessment

[Hmmph]

Parent with Alzheimer's being looked after by other parent (although struggling)

Savings of more than £24,000, do would be self funding. Council and therefore currently saying they won't do an assessment.

Do we need to fight the council to get a social care needs assessment? What will it do/show? Will it help? Is there a drawback to not getting one?

Thank you to anyone who can give me some help advice. I don't have the energy to fight if there isn't a good reason to.

I would push for an assessment. Councils can also still arrange care packages for self finders but are entitled to charge for that. You are right that there's no support. We felt adrift for a very long time but once DM had a hospital admission and discharged with a package we ended up with a social worker doing an assessment and then a specialist nurse. It made such a difference. I'm aware of CHC funding but never thought it would apply for us but the nurse said she would put that forward as she felt it met the criteria and it did.

I know finances are not your concern right now and getting help/ advice/ support is but along the line you may want to get some proper financial advice. Are your parents finances separate or joint? If joint maybe separate out so the parents receiving care has their share which may or may. It fall below the threshold at some point. How do they own their home? Home is not taken into consideration for home care. Nor for residential or nursing care if a spouse is still in it. Wish you all the best.

@Tiani4

Whilst Beacon is Ltd Company the free service element is funded by the NHS and is incredibly helpful.

My aim is not to derail anything but to arm the OP with as much as information as she may need going forward. Which is what I wish other people would have done for my family. We had no clue what CHC was until my Mum was discharged from the hospital with a CHC fast-track package and we had a very steep learning curve to get the right package in place and to keep it.

OP may have only asked about a Social Care assessment but many people, in my experience, are not even aware of CHC, so may even not know to ask about it.

If someone with Dementia is not safe to be left alone or is unable to get themselves food, get a drink and/or take their medication those are primary healthcare needs which is the foundation of the CHC Framework. Just because these are being met by the OP's mother, a well-met need is still a need.

He may not at this stage require CHC but it does families no harm to understand the differences between Social Care and CHC so that they ensure they get the right care package from the right organisation and the right stage in his care.

@Hmmph My apologies, that your thread has turned into this. It is a lot to take but I feel so strongly about this. I see too many families and we have been one of them not being given the right level of support because of being spoon-fed information rather than it all being laid out on the table so you can make informed decisions. We felt like we were scrambling around in the dark but we have much more experience now to know how to deal with this as my father's dementia progresses.

I really wish you all well.

Please no one apologize. You are all being very helpful and information from all angles is welcomed.

@BetterCare
If someone with Dementia is not safe to be left alone or is unable to get themselves food, get a drink and/or take their medication those are primary healthcare needs which is the foundation of the CHC Framework.
They are not
This is not helpful

Mum was discharged from the hospital with a CHC fast-track package

@bettercare you said your mum was awarded fast track CHC (which is not not CHC via DST) . She did not need social care assessment to get that.

It's really not relevant to OPs relative's situation

(I don't understand why pile on this level of additional complexity -and cause anxiety- to a simple request by OP about social care assessment)

Fast track CHC is straight forward, a doctor signs form to sign that they are fast track (at very end stage of End Of Life and rapidly deteriorating) And ICB set up the care. That fast track CHC process entirely misses out social care assessment. And is also not relevant nor appropriate to situation in this thread which has been the "please don't don't erroneously talk about CHC here" response several times.

@Hmmph

Do you and your parents feel you know what support Dad needs?
Did the LA tell your parents to look at their website and signpost you? Have you read it yet or looked around that?

Do you know how to set up care support you feel Dad needs? which you can do for Dad as he would be self funding, has the choice and resources to- id mum / you can legally access his funds.
As other PPs like @MrsWobble3 said, you'll find care agencies usually helpful in detailing out a care package plans!

If you've none of that above, and are stuck, then contact social care again and request they screen dad under care act eligibility and put dad forward for social care assessment under the Care Act 2014 . You can ask that your other relative (mum?) has carer assessment too

Don't forget to look on HM gov website (again don't go on private websites as they may charge) to look at claiming AA and perhaps even Carers allowance

www.gov.uk/attendance-allowance

www.gov.uk/carers-allowance

@Tiani4

I am not sure whether you work in it, have been through it or both. But I have been through it to a very intense level.

As I have said in many of my responses many people are not aware of Continuing Health Care There is no erroneous talk about It. My Mum was discharged from the hospital on a fast-track package of palliative care because she was only expected to live for a couple of weeks. My Mum lived for over a year and the package she had was on was completely inadequate for her needs.

Therefore, we had to go back around the assessment route. So I have had social workers in my house, I have had CHC nurse assessors in my house, I have sat through very long MDTs and had to await a decision that went to the highest level.

On top of having to deal with the stress and grief of my Mum dying and looking after my Father with Dementia at the same time. I also had to deal with the unbelievable stress that dealing with CHC puts on you.

I am not sure why you think you think you get to decide what is or is not helpful and what the OP will or will not find complex. For me the more informed we were as a family with regard to these organisations the more helpful it was and we are now armed with this knowledge and experience when we go through it with my Father.

The incompetence and lack of information we had to deal with across the board just adds to the incredible stress that people are already under. The OP is already going through this with SS not being prepared to do an assessment. Therefore, please stop responding to my posts telling me I am not being helpful. I am not writing these responses to be a pain in anyone's arse or confuse anyone. I am writing them because I wish someone had told me.

I really don't understand PPs randomly suggest everyone approaches these private organisations to pursue unnecessary CHC applications. MDTs in the community are busy enough.

Are you a social worker? DD had 7 social workers in as many years. Whenever I occasionally brought up a CHC assessment for her (after someone on an Internet forum told me to apply for it for her) with her social worker, they told me, she wouldn’t get!

Actually, once we filled in the application form, we got it no problem at all! She’s been fully funded by the CCG, now Integrated Care Board, ever since.

My cousin, who works for a firm of solicitors in the field, got CHC funding for his mother with dementia - she didn’t have any other medical problems!

Everyone is entitled to a needs assessment, as per the Care Act 2014. They are probably stretched and understaffed, so trying to cut the number they have to do, but you can insist.

If someone with Dementia is not safe to be left alone or is unable to get themselves food, get a drink and/or take their medication those are primary healthcare needs They are not, they are social needs. Misinformation like this raises hopes unnecessarily and leads people to spend hours on a CHC application that has no chance of success.

Fast track CHC is for when there isn’t time to do an assessment.

CHC is for when medical needs are unpredictable, thus requiring lots of nursing decisions.

@MereDintofPandiculation

Whilst my Mother was released on fast-track funding, the standard four care visits a day. Because she survived a lot longer than was predicted and required a much greater level of care than she was originally awarded she had to go through the full assessment again.

CHC is not funded just based on medical needs becoming unpredictable. It is funded based on primary health needs. So from the DST and the 12 domains, which include Food and Drink and Medication. My Mum was awarded a full 24 x 7 care package because of her Dementia symptoms, not because of why she was on palliative care. So her cognition meant she was not safe, she did not have the cognition to get herself food and drink and to take her required medication, she also scored high with regard to the continence domain.

Just because CHC is underfunded and because from my vast experience they seem to make it their lives work to not give funding, including something incredibly appalling said to us by a CHC Director about the costs, it does not mean people are not entitled to it.

Our family went to hell and back because of our CHC experience so it has nothing to do with raising people's hopes, it has a lot to do with sharing experiences poor or otherwise so that other people don't have to go through it and they know their rights.

*They are not, they are social needs. Misinformation like this raises hopes unnecessarily and leads people to spend hours on a CHC application that has no chance of success.

Fast track CHC is for when there isn’t time to do an assessment.

CHC is for when medical needs are unpredictable, thus requiring lots of nursing decisions.*

As a pp has said, this is not true. If the social care needs arise from a primary medical condition, then it falls under CHC funding.

DD has the most severe epilepsy and practically anterior grade amnesia. As the epilepsy is the cause of all her care needs, she gets CHC funding. She does not require lots of nursing care.

She can dress/undress, bath herself, go to the toilet independently, feed herself, etc. What she does need is to be under 1:1 supervision by a care worker all her waking hours, because she has on average 5 - 6 seizures a day, although it could be over 100 on a bad day. (She has continuous video, audio and mattress monitors at night, although there are waking staff 1:4) She needs people to cook for her (heat is dangerous for her), run a bath for her (risk of scalding, then drowning), keep her occupied (because she can’t self direct in activities) and give her the meds, because she can’t remember what she takes, and if it were left to her, she wouldn’t take them anyway. Most of the time, if she goes into status epilepticus, the care workers can give the emergency meds.

The main time, they call the nurse, is to check her over, if she has hurt herself falling, to see if she needs to go to A & E - probably once a week?

People need to read the NHS guidance and the key law cases; not rely on misinformation from social workers or CCGs (now ICBs) about how social care needs always fall under Social Services.

DD qualified automatically as she was priority for seizures; but that apart, she would still qualify for the amnesia, complex learning disabilities and challenging behaviour, under the headings of cognition, communication, etc.

Are you a social worker? DD had 7 social workers in as many years. Whenever I occasionally brought up a CHC assessment for her (after someone on an Internet forum told me to apply for it for her) with her social worker, they told me, she wouldn’t get it

Yes . A manager
I do CHC appeals regularly
It's my one of my specialism and I'm highly experienced
I can spot when worth applying for CHC!!

And have personal experience too. (We all have families and my sister had a degenerative condition)

Although as most people I also understand anecdotal stories of " I got it" hold little relevance to others as is based on complicated long assessments (30+ pages plus usually 100+ pages or submitted MDT evidence for incredibly high need people , for those that aren't fast track CHc (ie dying rapidly deteriorating which is much simpler CHC process ) is what it often involves.

I don't know why one pP keeps haranguing about this 🙃 as this (CHC) is not a relevant issue for OP and a total derail !!!

Social care assessments and whether to wait a while for one - when you could go ahead as a self funder to set up your own arrangements, is plenty enough to discuss at this stage for OP's relatives situation

The over all answer is for OP to ask for a social care assessment if OP is adking for funding (as eligible under threshold) or if they don't know what is needed to arrange and if signposted LA websites don't tell you enough that you feel you can go ahead and set it up privately yourself. Or if any difficult legal complexities (capacity issues, safeguarding, high risk needs

But please folks don't get derailed by CHC anecdotal stories that just aren't helpful at this stage

There just a time and a place. I've probably proven why good SWs are useful as we can answer those things very quickly & guide!

It's too much too confusing and CHC Criteria is incredibly high

I think your situation is different though as unmanageable ASC (altered states of consciousness) domain on CHC assessment carries a huge weighting when considering the four holistic overall measures

This is anyway far too technical a discussion for OPs relatives' situation!

For OPs sake so that PPs don't get carried away in making her original question far too complicated unnecessarily so, it'd be more helpful to refocus this thread and comments back to OPs relatives' situation and what they asked about.

I'm not only a SW manager I'm also a carer. And disabled myself. (So I have plenty of empathy and understanding and want to fight worthy fights!)

All said with kindness. Bc it doesn't become a kindness to overly complicate and confuse things when inappropriate to the askers situation at that time

As the person who apparently is haranguing and derailing this thread. I will continue to mention CHC because I know of too many people who are in the same situation as we were and are not even aware of CHC funding because agencies that you believe are set up to help you do not.

I also believe that other people don’t get to decide what is and isn’t helpful and what is and isn’t too complex for you to understand.

My little “anecdotal story” or as other people would probably phrase it “our incredible devastating experience” has show me the more information I could have had at the beginning the better it would have been for everyone. As you have already experienced, all of the agencies you will have to deal with are very underfunded and therefore, not very helpful. You often have to fight just to get a phone call returned. But underfunded or not your father should be entitled to a level
of care and support.

He may or may not be entitled to a social care package or a CHC package at this stage based on the information you have given.

Therefore, you can choose to ignore my posts and other responders who have put forward their own “anecdotal stories” but as your parent’s Dementia progresses and you have to navigate through these incredibly stressful processes you do have this post to full back on.

What helped us was to find other people who have and are going through it. Because it’s the little “anecdotal stories” where you will pick up tips and learn who to speak and find out properly what they are actually entitled to.

I really wish you best of luck because as you can see it is very contentious and unbelievably stressful. I am more than happy to share my experience of dealing with all of these agencies and everything else’s that comes along with it. Not only did I have to deal with it with my Mum I am also dealing it with my Dad who has Dementia. So if you what to PM me, at any time, I would be more than happy to go through everything with you the good the bad and the ugly.

I stopped replying earlier (as at work and also) as this thread and question could have been so useful but it got derailed into end stage dementia CHC level and repetitive posts, which is so far above the question OP asked
I hope OP feels listened to

I will try once again to see if we can help OP positively without scaring her off!

OP of course can decide what is helpful to your relatives' situation

There's so much that MNers can share about what is useful in early stages of caring for someone with dementia at home in the earlier stages such as community resources, national ones, day services, use of PAs versus care agencies, how to recruit PAs or find/ choose a care agency, what dementia telecare equipment tried .

Many peoples with dementia can live long positive lives in the community with support as they need it, living independently for 10-15+ years for some people, it all depends on how each individual persons' dementia affects them and how it progresses, it varies so incredibly much

OP 1 if your parents decide to wait for social care assessment, the care manager/ SW will discuss. But if your parents decide to make their own self funded arrangements, if you can say a little bit more about specific difficulties on here in then maybe the wealth of experience on MN can make suggestions of what helped them ..

I always start with saying is it worth looking up good telecare service options - not just pendant alarms- but equipment (GPS trackers, door sensors, temperature alarms/for the person that fiddles with thermastat, telecare linked smoke alarms, etc..) - If you look up a national telecare company like Argenti - they do private fund as well as LA funded - you'll see a range of the most clever equipment they loan out and charge a small monthly fee for (even for self funders).

Also for eg in early days equipment like Speaking dementia clocks (date time, recordable voice alarms- often on Amazon) are good too. As can be Alexa based equipment. technology is developing all the time and can work well for some people

Ime a good dementia day service (self funded or LA funded) in early days can also provide support to the person as well as a regular break for the carer.

But without knowing how your Dad's dementia is affecting him as an individual at this point, it's difficult for MNers to help bc we won't be able to pitch it right

It's always my view social care assessments are worth their weight in gold! But there can be a wait for those in less urgent situations.. so by all means gather info and also please look at your LA website of useful services you can arrange or you won't want to do through them and have resources to, if they signposted your parents to it. (I cannot imagine they didn't .. ) to help you decide if you want to ask for / wait for social care assessment . You can go back to the LA to ask again if you feel they sent you off as "self funders " without offering to send your parent (to wait) for an assessment

If it helps in our LA

Carers assessment offered even if the carer for person is self funding and has self funded care services (so is a carer referral under the Care Act 2014 if we can establish the cards for person ie client has Care Act 2014 eligible for care and support - as that's the legislative criteria!- but is being cared for informally or self funded for their own chargeable care services) because we have some (limited with criteria) non chargeable carer support services- in recognition that it's tough being a carer to someone.

So maybe your relative that's a carer can ask for a carers assessment in their own right in their own new adult social care file?

Just another aside - now your relative has a dementia diagnosis- you can Contact the local borough council tax sept to ask them if they do a disregard for his share of council tax for someone diagnosed with a significant cognitive impairment (if he is otherwise not disregarded through low income) as if they do and you fill out their form with date of dementia diagnosis (if diagnosed through OPMH older personal mental health team, hospital or GP into his medical notes) then that may save a bit of money. I think this might be discretionary as I don't know the housing CT legislation well..

*sorry, I kept typing Cared for Person (ie client/ your dad with dementia) and my phone changed it to 'carer for person' and 'card for person'