Assessment

Assessment is part of life as a disabled person. Whether it be for equipement or monitary assistance. Assessments are the gateway to both.

Interview with Sam from PHB Hunters

Sam-Stickland

About Sam

Sam resides in North Wales and lives with a disability called Limb Girdle 2e Muscular Dystrophy which is a progressive condition, meaning her needs have increased/grown more complex over time. Sam is now forty and has been employing her own PA’s since she was twenty.

To begin with, she did this with the help of The Independent Living Fund, a benefit that unfortunately no longer exists. When the Independent Living Fund was scraped her local authority funded her entire care package, continuing to provide funds through her Direct Payment.

Agency workers

This worked well until Sam’s Social Worker persuaded her to use an agency to carry out her care rather than employ PA’s herself. At this point, her Social Worker applied for her to have half of her 24-hour care package funded by CHC. Sam agreed due to pressure, lack of support and her continued struggle to have a working contingency plan in place should any of her PA’s be unable to work. However, as soon as this decision was made Sam lost all autonomy and had very little or no say in how she lived her life.

Back with the Direct Payments Scheme

After a lot of battling with her local authority, Sam now employs PA’s once again through a Direct Payment, enabling her to live her life the way she wants to. She has this option as she is jointly funded by BOTH the local authority and CHC. This option is not available to those like Rhys who’s care isn’t jointly funded.

Sam campaigns with Rhys to try and ensure that all citizens in Wales, not least Rhys himself has the same freedom that she enjoys regardless of how they are funded. Below are the questions I sent to Sam after I saw their campaign on the BBC website and later on Facebook, Welsh PHB Hunters (Every human being has the right to be free.) The questions were sent before I knew she had won the right to have her Direct Payment again, which just goes to show you should always fight for your rights.

1. How long have you had your current care package?

I’d say from March, as I’ve been able to hire my own PAs since then, through a jointly funded package. However, I now believe I had a jointly funded package for almost 3 years, but I was falsely told by social services that it was CHC funded and therefore I was unable to use direct payments to employ my own staff. I now distrust my social worker and the people who are supposedly there to help us.

2. Are the agencies that are assisting you currently person-centred in your opinion? I.e. do they listen to you?

I no longer use a care agency, but can say that when I did they all said they were person-centred, but that only went so far, my views and opinions weren’t listened to when it really mattered, and they were just a business trying to fill their contract requirements any way they could.

3. Do you have any say in how your care calls are structured?

Yes, I have complete control now. I do the rotas, ok holiday, and I am in charge of all employment matters. Although I am checked in on a lot by nurses and social worker, (pre covid.)

4. What reason have you been given for the discrepancy between the assessment carried out by Social Services and the one by NHS? Needs are needs surely?

This is a Rhys question but from my perspective. My social care team really wanted the monies to come from health to save them money, they did not support me at all, and it was the health side that agreed my needs weren’t nursing as the social care team were trying to suggest.

5. How did you meet Rhys?

I was talking with Rhys and we can’t remember exactly how we found each other! It was through our fight for care and somehow we started chatting over Facebook. Since then we have spoken every day and started a long-distance romance!

6. In August, you wrote a letter to the Welsh government. Why now?

I think we both wrote letters prior to this, mine began in February, but at that time I was unaware of Rhys’ campaign. Once I connected with Rhys, I upped the ante and began to fight for PHBs as well as for the framework on legislature changes for joint funding to be made clearer. We have since written to charities, disabled organisations, magazines, MP’s and AM’s. Basically, anyone who will listen and support us.

7. Why do you think the push to use agencies is so high, are they more cost-effective? In England, agencies are more expensive than hiring your own PA’s/carers.

They generally are not cost-effective, but I believe that the social care team see them as an easy solution to them, less paperwork and less face to face work. They leave any issues to be dealt with by the agency involved, which leads to more problems for us. CHC funded care must currently use agencies in wales, hence the fight for PHBs, I believe this is to pass over any accountability to the agency instead of the NHS, and due to the work needed to change the current framework. It isn’t about what is best for us.

8. I read on your Facebook page that Direct Payments are unlawful when using CHC do you know why? Has anybody explained this?

It’s just not allowed because of the current CHC legislation. If you are jointly funded it is lawful, but it is not well known, as I found out during my fight. It needs to be clearer for users and the organisations involved.

9. How is a second lockdown affecting you?

The lockdown is hard, I miss seeing my family and my niece who’s grown so much since this all began. It obviously makes a long-distance relationship harder as we can’t travel as much. I had plans to travel this year! 😂 I worry about covid obviously but my PAs are all taking precautions to safeguard me and I appreciate that immensely. 2020 has been a hard year for everyone.

10. What does a typical day look like to you?

This is probably more Rhys, as I have a PA 24/7. I can get up at a time of my choosing; toilet, eat etc when I want. My only constraint is being in bed by midnight, as I have a sleeping night and PAs have to have 8 hrs sleep. Breaks for PAs are quite flexible depending on our plans for the day.

11. What do you do to relax?

Photoshop, and artwork. I can spend hours doing this on my computer, as it clears my mind. I love a bit of Netflix, music and days out with family or friends (pre covid). I try to study something new as often as I can, but Rhys’ campaign has kept me busy since August, so I’m only doing short courses at the moment.

12. Have you been given a reason why individual cases can’t be heard but group cases can?

I think this is just policy for the heads of departments, such as Vaughan Gething and Julie Morgan. We are encouraged to contact our local ministers.

13. Can you explain a bit more about Independent User Trusts? Why are they not suitable for your needs?

We have had difficulties with this ourselves so I’m just going to use what we currently have.

The Welsh government are proposing Independent Users Trusts (IUTs). An Independent User Trust is described ‘as a commitment on the part of trustees to manage an agreed sum of NHS money (or other resources) in a way that puts the individual at the heart of decision-making and gives them choice and control in their life’. Confused? I know I am? I ask is this clear? Because we have struggled to get a clearer definition so bear with us a little.

IUTs are in fact one of the ‘methods’ that an individual can now use to manage a personal health budget when a direct payment is not possible, AS IN WALES Right? But we are not being given the option of utilising the other methods, just an IUT.

So it’s our understanding:

• You have a team of 6 trustees almost like a syndicate.

• You get to choose who those 6 people are “how generous”.

• You speak to them, and they then speak to the NHS.

• They make a decision for you over how your care is provided, “bearing in mind it’s your care”.

• And they control the purse. “So we never, in fact, see the money ourselves.”

So, they are making us answer to a group of individuals, which granted, we can choose, but they decide and then purchase that care for us!

Is this not completely obscuring the idea of independence?

We are accountable adults, who have self-control over our own life’s, and finances! So why are they suggesting we are incapable of taking care of our care finances? The notion is completely condescending! The only thing that makes us different from everyone else, is a physical disability?

In our eyes, this means that IUTs fail to put individuals at the heart of the decision-making process, and instead take away our choice and our control over our care. Which surely we deserve? It merely mimics the same system currently in place, just given a new name… In line with the Social Model of Disability, the Welsh Government says it is committed to disabled people fulfilling their potential and achieving their ambitions and dreams, by removing barriers that get in the way of such ambitions. The Welsh governments current IUT plans are building these barriers up, rather than demolishing them, are they not?

We truly can’t understand how our own Welsh government thought it was okay, to put people who needed 24-hour care in a situation, where they don’t have any choice in who provides their care for them.

My thanks to Sam for answering my questions.

Having had several written conversations over social media with her, I have to say I completely agree that the proposed solution, Independent Users Trust’s, (IUT’s) does not give disabled people the freedom and autonomy that they are requesting. I can’t understand why a Direct Payment is available in one instance and not another! Judging from the campaign, I’m not the only one.

If you want to find out more visit the Welsh PHB Hunters Facebook page. They welcome any support, wherever you live and are currently looking for people who have experienced agency care to participate in an article they are writing. If you’re interested send them a message here.

Can I afford to work?

Thank you for all the comments on my last post. It’s comforting and encouraging to know that I’m not the only one experiencing what I’m going through. The accessible rooms post is coming, keep a lookout! Somehow when I sat down to write it, this happened instead.

Smiley thumbs up
Smiley face, thumbs up!

Severe Disability Premium benefit – What is it?

Wanting to work I contacted a support service. They told me that I’m better off on benefits and that I should apply for the Severe Disability Premium benefit. This is an extra £66.95 a week on top of my other benefits if I qualify. This was the first time I’d heard of this benefit and the top-up would make life easier. An individual is only eligible if they already receive certain benefits usually income-related like Income Support Allowance together with a disability benefit like Personal Independence Payment.

confused
Woman with hands up, looking confused.

Is Severe Disability Premium benefit means-tested?

Yes, it is. I’m not entitled because I have savings of over £6,000 and I live with my parent’s who aren’t on any benefits. If I had savings less than £1500 I would’ve been sent a form to fill in that asks me to declare my income.

Am I too disabled to work?

Advised by my support service that because of my needs, working would probably impact negatively on my benefits. This means I could be expected to pay for the entirety of my care package which I can’t afford! My care package still hasn’t been agreed on and no progress has been made since December!

I want to pay for myself, I don’t want to be a burden on society. My plan was and still is, to work but how can I when society seems designed to have me sitting at home, wilting from boredom? I know people with care needs do work and have care packages that give them choice and freedom. What I can’t work out is how? I’m on a roundabout that has been going around the same issues continuously for five years! I’m just not getting anywhere!

Roundabout
Black and white roundabout.

Volunteering is monitored even if it is unpaid work

I’m helping to create an access map of the Jewellery Quarter in Birmingham. This will improve access to the many museums and heritage sites of this area. Currently, I’m just collecting information on the access that’s already available. We are encouraging museums to get involved in improving their access. consequently, these interesting places are accessible to more people. When I volunteer DWP have said I have to fill in a form whenever I start any work paid or unpaid.

Rainbow hands
Many rainbow hands forming a white circle.

I appreciate any thoughts/comments that you have. My post on accessible rooms will hopefully be up next week.

Should I continue writing about my life or just stick to my ideas and reviews? Let me know here.

What Independence Means To Me

Happy New Year to you all.

Still fighting for independence – Nothing’s changed

The OT assessment in December 2019 has changed nothing! Since publishing my last post my PA had to leave her job due to health reasons. Two days later my Social Worker emailed me to say the Direct Payments Team were enquiring whether my payments should be suspended as I no longer have any carers! This response upset me and demonstrates perfectly what is wrong with the current system. Instead of being offered support to find a PA and therefore continue my independence, my needs were being questioned! I explained that I needed the money available to be able to employ replacements, not to mention to pay HMRC. Thankfully, after a few more emails back and forth Social Services decided things could be left as they are.

Do I expect too much in thinking that that should’ve been obvious without me pointing it out?

Direct Payment budgets are hard-won and everyone I know would gladly give up the money for care in exchange for not actually needing it in the first place.

This struggle is what inspired me to start this blog as I know I’m not the only one. I’ve been fighting for my independence for the last ten years and the fight is wearing thin and taking its toll!

Independence

Being independent means being able to live without the assistance of my parents. The dream of being able to do everything without outside help is not realistic or feasible. My plan was to get around the need for care assistants by installing ceiling track hoists all over my flat and hoisting myself everywhere. A good plan, in theory, brought on by my determination to have choice and control. In my determination, I pushed myself too far.

Pushing my limits

I have permanently hurt my back and my neck struggling as I did but I’m glad I tried. Without trying I would never have discovered my limits, even if those limits have been increased by my actions. I’m not advocating that people push themselves to the limit but for me, at the time, it was the right choice.

Exhausted without the correct support!

Without the correct support, I was exhausted by the time I was out of bed in the morning and even if I had the energy to go out I could only leave my flat for a couple of hours as my toilet was the only one I could use without help. By the time I moved back in with my parents, fourteen months later, I could barely sit up in my wheelchair and had to undergo over six months of physiotherapy to get me somewhere close to my normal functionality.

I still find the idea of needing someone with me to assist restrictive and would rather do things myself. When going through care assessments I always find the process demeaning.

Lazy not disabled

The OT who visited seemed convinced that she could teach me to transfer independently given enough time. Trying to keep calm, I commented that if she could do that then I’d buy her a box of chocolates and happily live my life. Why do people look and see more ability than is there? I had enough motivation growing up to become self-sufficient if it were possible. People think I’ve just missed a trick, that I actually can do things, I just don’t know-how. Am I alone in this? Stating I’m more able just delays the evitable which may save money in the short term but it may cost more longterm if I and my parents get ill!

Upset figure

Disability equipment concepts to increase independence

There are many concepts and products that have been developed to increase the independence of ‘disabled’ people. Go onto any disability shop and you will see countless aids designed for increasing independence that range from button hooks to bum wipers!

Wheelchairs focus on lack of leg and feet functionality but assume the rest works as it should. A good example is the video below that’s been appearing on Facebook for a number of years.

Video of a Wheelchair Concept

Thinking positively, it’s great that people are thinking about access and recognise that barriers exist. The height of things, travelling and steps are very real obstacles that wheelchair users face daily.

Can you spot the first problem with this concept?

…How many of you go to bed fully dressed and ready for the day?

…How many of you can roll, either at all or whilst keeping your body in a perfectly straight line?

I don’t go to bed with my clothes on! When I roll over my head sometimes ends up on one side and my legs in another direction entirely! Never symmetrical!

Ok, so I’m nitpicking and personal care isn’t really addressed in these types of concepts but, if the chair was made, how would the owner get up, go to the bathroom and get ready for the day? A unique selling point for this product is that it lays flat for easy transfers but how are seated transfers catered for? While some practicalities have been thought about others have been ignored.

Questions figure

Current equipment

Hoists, (the current go-to for moving from A to B,) are great pieces of technology and mean that people can be transferred safely if they can’t move. However, even portable hoists aren’t very portable and certainly not designed for the user to use independently. Individuals who rely on a hoist are stuck if there isn’t one available.

I hope to help create a solution that is portable and can be operated solely by the user.

I’m nowhere near creating anything yet but I have ideas and I’m hoping that people reading this will want to get involved and bounce ideas around. Every wheelchair started off as a concept and we now have chairs that can climb stairs, albeit in a very wobbly way! Wheelchairs can now stand people up so why not a chair that can transfer someone from A to B?

These are my ideas of independence, what are yours?

Update: Nine Months on…

You don’t have to be a rocket scientist to work out that my first post was written in March and it is now December! I didn’t have a baby but life did get in the way so this is my way overdue update!

Naidex update

My original plan was to update this blog in time to write up my impressions of Naidex. Naidex is one of, if not the biggest disability show of the year. It showcases products, services, advice and a healthy dose of inspiration for disabled people. The main reason I haven’t updated is that I had to learn how to fix WordPress before I could use it. I also requested an increase in my Direct Payments from Social Services. Many of you know how relaxing that is! The photo below is of myself and Lee Rigby after his latest show in Birmingham, just one of the events I’ve been to this year.

Photo of Me and Lee Rigby after his show in Solihull

Equipment updated and dumb becomes smart

I contacted Remap to help me adapt my standing chair so that I could transfer into it more easily. If you can’t find a product that meets your needs then there is help out there. Remap will adapt what you already have or in some circumstances, create a new solution for you. Also, on the subject of access, I had smart lighting and heating installed along with a Gerberit wash and dry toilet in my flat. These things will help me be more comfortable and independent in my own home.

Cars and Wheelchairs

This year was also the year that my Motability car lease was up so I was kept busy researching car models that would fit me and my life in it for the next three years. I eventually chose a Fiat Doblo, passenger upfront conversion, a significant update on my previous car!

I now have two working power chairs, a month ago I didn’t have any as my privately brought, Powerchair, decided it needed repairing. Receiving my new TDX SP2 wheelchair from Birmingham Wheelchair Services means I now have a backup. In my experience support and equipment are like buses in that you wait for ages hoping for an appointment and or a piece of equipment and then everything happens at once! I’m not complaining, it feels great to know I now have a backup chair should things go pear-shaped. I’d love to hear about your own experiences.

Theatre fun

I visit my local theatre, Birmingham Hippodrome, at least twice a month. I love going to the theatre, it’s accessible and fun. Look out for more posts about my theatre adventures 🙂 I’ve seen a lot of productions in the past nine months including Kinky Boots and Hamilton.

So…

As you see it’s been a busy time. I’m planning on posting an update regularly from now on. I have my OT assessment on the 10th of December in connection with my Direct Payment budget request. Wish me luck!

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