disability related expenses

All about money
I'm about to start a campaign about this there is so much that disabled people can claim, but they do not know about it or not told properly by social work.
pipsy wrote:
Fri May 10, 2019 10:34 pm
Does anyone claim these as part of their financial assessment with direct payments? Apparently councils and social workers are ignoring the care act 2013 because they expect your DLA or PIP to pay for expenses for your disability.
pipsy wrote:
Sat May 18, 2019 10:40 pm
I'm about to start a campaign about this there is so much that disabled people can claim, but they do not know about it or not told properly by social work.
Its disgusting really, the futility of fighting to have legislation put in place which in itself lacks the means to be properly enforced..

Anyone else bear witness to the infamous rolling of the eyes by council employees and the like, when you even utter the care (or similar) acts? I have seen toilet paper in a curry house treated with less prejudice.

Down here it is honestly a brick wall, lord knows I've tried (still am)

So with my example of some expenses, main focus on one caree, though things like additional energy are more to do with multiple caree's having multiple heavy-duty appliances (which must remain on constant to retain a charge)

As I've covered before, main caree is CHC funded, and gets no assistance from social services/local authority whatsoever as they steadfastly refuse to collaborate with the NHS here in any way shape or form, they have no social worker, they don't do my carer assessments (complaint in progress ongoing). Sweet bugger all from them.

Some items off the top of my head but not representative of expenditure in its entirety (theres always more), but maybe it can help you with your campaign.

  • Additional energy to maintain all aid-related appliances (stairlift, hoists, mechanical beds, air mattress, etc), as well as maintaining room temperature in winter/summer
  • Heavy duty/extra cleaning products for home decontamination and sterilisation of some appliances (suction devices etc)
  • Additional waste output - incontinent pads go out with black/general waste due to no collection service
    I have to buy heavy duty black sacks (only kind which don't rip, even when under-utilised).
    Council don't provide bins, bought my own once, they were stolen! Only private flats seem to get a dumpster for waste.
  • Additional laundry - see above, self explanatory, only gets worse when you have multiple's using pads
  • Special Nutrition (nutrient rich pureed diet) - you can puree your own meals, but a caree needs a specific type ordered in to ensure they are to maintain dietary balance
  • Dysphagia friendly accessories (i.e. adapted drinking cups)
  • Extra fire safety measures - several sets of extinguisher/blanket/mask through out the house (I was a designated Fire Marshall/First Aider in previous job) - oxygen is the tip of the iceberg of things that could "go up"
  • Additional Pharmaceuticals not supplied or under-prescribed by health services (bandages/dressings/first aid stuff), rehydration kits, various creams, accessories for provision of personal care in bed (special hygiene products, not just standard stuff for showers)
    Always having to pick up bottles of liquid paracetamol when I can, the GP prescribed generics make a caree physically sick when taken orally, they need to have the orange/paediatric one to keep it down
    Oral syringes are a big one here, they don't get properly provided, I bulk buy them (significantly cheaper), also stuff like wet wipes, disposable gloves
  • One thing I think we overlook is general costs associated with the home itself.
    Simply stuff breaks more, and it can't be "left" till later, it has to be sorted immediately.
    This is especially true of the white goods appliances, or even the simple kettle(s) in constant use
    Visitors (i.e. agency) often don't respect your property, doors are slammed unnecessarily, they'll damage/wear down front door locks letting themselves in because they only know one way to open a door, walking frames/wheelchairs wear floors (and sometimes door ways) down, you won't realize a item is about to break down/die till it does because nobody said nowt about it.
    You have to keep things like a landline because some services still require them, and because you can't 100% rely on a mobile with so much going on (also what if it went missing/got pinched)
Couple other random expenditures ;

This didn't bother me personally but I had to rip out the circuit breaker and get a more modern/simple one put in, so that the caree's that can still self-mobilise somewhat have half a chance of being able to put the power back on safely if we get cut off and for some reason I'm not home (i.e. in hospital with another caree)

And thats without the qualifications I hold.. if I wanted to actually work in care for a living I would be set :P
In a nutshell this is what DLA is for. My son’s DLA money is used to fund his wheelchair and pay for therapy sessions as well. Part of the money goes towards expenses for our family car. DLA should be used to cover all disability expenses. I also pay a childcare provider to work for me. I recently ordered a new piece of adaptive equipment for our home with it.
Examples of DRE

DRE can include the following but not only: 
extra washing or special washing powder/conditioner for delicate skin 
community alarms (pendant or wrist) 
special diet 
special clothing or footwear (or extra wear and tear) 
additional bedding 
extra heating costs 
household maintenance (if you would normally have done it yourself) 
any cleaning (if not part of your care plan) 
internet access 
any care that social services do not meet 
buying and maintaining disability-related equipment 
any transport costs (both for essential visits to the doctor or hospital, but also to keep up social contacts).
chairlift insurance
life cover insurance if premium is higher due to illness/disability

Other costs may also be accepted. The courts have confirmed that local authorities should not be inflexible but should always consider individual circumstances. For example, an authority should not adopt a blanket policy of refusing to acknowledge payments made to close relatives, as there may be exceptional reasons for a particular arrangement.

Assessment of disability-related costs can be carried out in your own home with a personal interview. Staff should be appropriately trained in a range of benefits and be able to give advice about entitlement, help with completing forms and any follow-up action if you want this. If you prefer independent benefits advice, you should be offered this choice.

Ensuring all DRE is included: useful tips

Some local authorities set standard amounts of disability-related expenditure. If your actual expenditure significantly differs from these amounts, asked to be reassessed. The local authority should take your individual circumstances into account and consider all reasonable expenditure. When being assessed to see how much you can pay, consider everything you have to buy or pay for because of your disability. Be clear and specific as you can about what you need to spend from your disability benefit to ensure your needs are met. It may help to draw up a list of your expenditure ahead of your financial assessment or to keep a diary to ensure everything is included. Check whether you have records, such as receipts and bills, to help you work out how much you spend on your disability-related needs. It may be difficult to prove you have extra costs if you do not actually incur the expenses. For example, you may not put the heating on for fear of large bills, or are not following a special diet because of cost. Local authorities should work out an amount considered to be normal expenditure for your area and type of housing to assist their response or what you would spend if not avoiding it due to fear of high costs. You can ask for the cost of one-off items, for example a stair lift, to be included as DRE. The local authority may work out one-off expenditure by spreading the cost over the period the item is expected to last.

For example, if the item costs £1,000 and is expected to last ten years, your weekly expenditure may be worked out as £1.92. If the local authority takes this approach, it must take into account your individual circumstances and fairly reflect the cost you have incurred. If you feel that the authority has not accurately reflected your individual DRE, raise a formal complaint to challenge this.

Disability related expenses.pdf
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It's getting terrible the amount of abuse I have had as a carer trying to put proper services into place. I have not dealt with a worse service than the social work office.

You have to go through an MP or an agency/advocacy as they quote legislation and send out formal letters to chief officers to get them to act.

If your looking for support be sure to have copies of the care act with you and give one to them and highlight where it says its allowed and insist they show their own managers the legislation will hopefully get you somewhere, which I have experienced.

They don't believe what you say, but what you show.
leah_1902 wrote:
Sun May 19, 2019 7:55 pm
In a nutshell this is what DLA is for. My son’s DLA money is used to fund his wheelchair and pay for therapy sessions as well. Part of the money goes towards expenses for our family car. DLA should be used to cover all disability expenses. I also pay a childcare provider to work for me. I recently ordered a new piece of adaptive equipment for our home with it.
And DLA/PIP care component is factored in as income for the purposes of financial contribution for a care assessment.

I agree also with Honey, the extra cost of breaking things above normal wear and tear, my brother who's hemiplegic, is consequently heavy handed and always breaking things such as control knobs and switches as an example. His kitchen tap was broken twice in as many months due to excessive
handing not only by him but by carers
Its only the care component of DLA/PIP that is taken as income the rest is not i understand like mobility and support group of ESA.

Also, some people I heard stop their benefits before an assessment from the LA for support so they gain more budget and hours to help them with everyday needs as you can gain upto £40-45K per year depending on needs required not income.