Bearing Disability: My view on The Care Component

This is the one of two posts about U.K disability benefits DLA (Disability Living Allowance) and PIP (Personal Independent Plan). It is an article explaining what the PIP Care Component of the benefit is, the changes with PIP and what the benefit means to me.

Before PIP – My experience

The Care Component of Daily Living Alowance Component (DLA)

The PIP care component is supposed to help someone who has their independence limited. Limitations can be anything from not being able to cook a meal, get dressed or any other daily activities, to independence outside and in the workplace.

This component is split into two or three rates: Low rate (now obsolete with PIP), Middle rate and Higher rate. As you can imagine, the more your disability impacts on your daily life the more you receive on a weekly basis. This can be from £22 to £88.

Buying Equipment

The money is used so that the individual can have some independence in things that they probably wouldn’t have without it. An example is my sologrip one-hand jar opener.  Without that jar opener, I cannot open many things that have lids, whether that’s pill bottles, cooking sauces, pop (soda) bottles or cartons of milk.

But it’s not just the equipment we are paying for. Yes we use it for the equipment, but the equipment is expensive in several ways.

• The item itself
• Import costs
• Trial and Error

My Sologrip One-Hand Jar Opener cost $40. The shipping cost was another $50. Actually, I had a friend in America who saw me post about this equipment and sent me the sologrip as a present, but otherwise I would have spent $90 just to be able to open jars.

I was lucky that the sologrip works most of the time, but often it is trial and error. I cannot tell you how many one-handed tin openers have gone in the bin because they are too dangerous, they jam too much or they break after a few uses. All of which had equalled around £20-30.

Most equipment we cannot try before we buy it; either because it’s overseas or because they don’t have it in a disability centre. A lot of it depends on trial and error.

Steps to independence

The money offers me the ability to research equipment so that one day I don’t have to rely on family members or friends to do everyday things. While I don’t mind being helped if I need help, I also don’t want to be a burden – not to mention there will be times when my family and friends are not there, physically, for various reasons. Additionally, one day I want children and I don’t want them to become young carers. I want to be the mom.

So I rely on that money to become as independent as possible.

Will I ever be able to live fully by myself? I don’t know, I hope so. Currently, I am content with the many things I can do thorough research, but there are many things I cannot do. And it’s a slow process learning ways around them:

• Instead of filling a hot water bottle (not a good idea, last time it exploded), I use microwavable wheat bags
• I have liquid medicine or crush tablets to take medicine.
• I buy elasticated shoelaces as I cannot tie my shoes.
• getting that ticket out of those stupid car-park barriers is still tricky

All of those take me either an exceedingly long time or I need someone to help me do it if I do not have the right adaption. My family and friends are really supportive.

Eventually, I’ll have a job, I’ll be earning a wage and I’ll be paying back into the system. But thanks to PIP, I now need to battle my case—next battle in 2028.

PIP Care Component — System change

This doesn’t differ too much in terms of money from the DLA component — the “major” change of the component is that the lower rate has disappeared. Why did I quote major? Because it is only the major change of the component, not the system.

How did they do it?

Before PIP, people with permanent disabilities were given Lifetime Awards. That meant they did not have to be reassessed, presumably for life. In fact, if the system stayed as DLA, people would have lifetime awards.

But The Government wanted to get rid of Lifetime Awards. They had for a while. Little clips of them discussing it in secret were leaked. No one thought it’d happen.

They couldn’t do that with DLA around. EU made them aware it would be against human rights—this was pre-2012 by the way, the Brexit poll was 2016… makes me afraid for human rights once we leave.

And I’m not the only one, the blog below is also concerned for human rights.

In 2017, the United Nations declared that the conditions for disabled people in Britain were tantamount to a ‘human catastrophe’ and things haven’t …

Unlocking Words

So after the EU told them it was a breach to change DLA, they decided to create a new system in 2013 known as PIP.

First, they made sure that it only affected those that were existing DLA claimants aged 16-64. Anyone under 16 who had DLA would not be affected by PIP until a later date, and anyone 65 or over would keep DLA. There is a lot of people born between these ages. Most of the claimants I would expect. And any new claimant, even if they were under 16 or over 65, would be given PIP. Those under 16s would also one day turn 16.

Dreading the letter

Everyone, whether they wanted to or not, would eventually be moved to this new system. It was a loop around in human rights! You can see why I am afraid of Post-Brexit if this is the Government’s cunning Pre-Brexit vote.

For years, I dreaded my letter because of horror stories. People who updated their address, or any other “change of circumstance” mentioned that they got their letter soon after.

I hoped our landlord renewed our contract for fear of getting a letter sooner than they planned for my area. I knew I couldn’t avoid it forever, but I planned to for as long as possible. In 2018, I got my first reassessment letter from them.

And the horror stories are true!

The assessments are inhumane. The assessor asks you questions in a specific way to confuse you. They ask the same question multiple times until you give them the answer they want, and they prevent you from expanding on your answer. Disabled people are treated as if we are not worth the ground we stand on.

Maybe they don’t do this to your face, but they will on the report. My report was full of lies! as was silveryew’s husband—someone whose blog I followed on here.

PIP Care Component Eligibility

Whereas before, they determined your eligibility by how severe your disability diagnosis was, now they determined it by whether you ticked a box. #IAMNOTABOX. There is a self-test you can take to see what I mean.

The statements are vague:

• Can you cook a simple meal?
  • There is nothing to tell you that it means for one person on the form, nor what they deem simple. I found this out as I went through the tribunal process.
• Can you read and understand complex information?
  • Through the tribunal process, I learned this means: can you read two consecutive sentences.

To receive anything on the care component, you must have 8 points. You need 12 to get the higher rate component. However, the vagueness makes this hard to answer the questions correctly. I compiled a file to help with this.

After reading the costs of equipment for me, someone who is able to use a shower cubicle, who can walk around, imagine the cost of someone who needs a specific shower, or a specific kitchen with the oven and hobs at certain heights.

It isn’t cheap and we don’t want free money, we want independence so we can get a job and pay back into the system.

Remeber, #iamnotabox