Disability

All about my life, living with Cerebral Palsy. This will encompass anything and everything. From services I have used to my everyday experiences and everything in between. There will sometimes be a crossover between this and the reviews category but posts written under reviews will cover a specific place, event or piece of equipment. This disability section is where I will write about everything else and hope to have discussions with my readers along the way.

Shopping through others

Protecting your money when others are shopping

Hi All,

How is January treating you? I can’t believe we’re nearly at the end of the first month of the year already! This post was originally going to be about two new accessible products this year. However, while researching them, I became aware of many questions about shopping, money and what to do if others need to physically shop for you. So I thought I’d write a post about the solution I’ve found for this. Handing over your card and pin isn’t advisable even if you trust the person implicitly.

People who shop for me

My PAs used to shop for me. Due to waiting for social services, I’m without formal support and relying on my parents. They do everything for me including the shopping for which I’m grateful. The question of protecting money mainly comes up when people are referring to formal care. Unfortunately giving your PIN number to a family member can also be seen as aiding fraud.

Banks won’t cover multiple people shopping for you!

Banks/financial institutions don’t cover you if your card is used by ANYONE not named on the account. I found this out when I went into my local branch a few years ago. When I explained my situation I was told I could nominate two people. This might be useful for some but is no good to me as my care requires more than a team of two. The advisor then went on to say if I gave my information to anyone then any money that was taken would not be covered by the Financial Services Compensation Scheme (FSCS) or the bank. If someone decided to take money from my account I wouldn’t see it again!

Credit and Debit Cards

Shopping for a solution.

Now that I knew bank accounts were out I started thinking about alternatives. The obvious one is cash but I feel vulnerable using cash points. I take ages getting the money out. I’ve always felt that someone could walk past, reach above my head and steal my money without breaking a sweat. There’s cashback from supermarkets although that’s not so widely available since COVID-19.

The only option left was top-up cards or Prepaid cards. These allow you to load your own money onto the card but once the amount is spent you cannot spend anymore. I’m a big user of the MoneySavingExpert website and highly recommend it if you want advice on how to make your money go further. When I searched all of the prepaid cards had fees. As I wanted a fee-free card I very cleverly searched the internet for a ‘free prepaid card’ Scoff all you like but it worked, I found Tesco’s ClubcardPay+. Their card is completely free to use.

This post isn’t sponsored by Tesco they aren’t even aware I’m writing this. I’m just pleased to find a product that works. If someone from Tesco is reading this and wants to get in touch feel free 🙂

Registering and using the card to shop

Registering is easy if you can perform basic computing tasks, you’ll do this with no problem. Click here and you get the screen below to register.

Register for Clubcard Pay+

The only requirements are that you live in the UK, have a Tesco Clubcard, and have access to a smartphone to enable you to use their app. If you don’t have a Clubcard it’s free and you will have the option to sign up for one further down on the registration page, see below.

Join Tesco's Clubcard Scheme

The application process took me about ten minutes and was straightforward. You will get your card and PIN within seven working days. They will arrive separately for security. In the meantime, you can download the app, Tesco Bank.

Tesco Bank App

When you’ve received your card, and PIN and logged onto the app you will be greeted with the screen below.

Tesco Bank Home Screen

Next you will need to top up which will lead you to the screen below where you choose to connect your current account, this is what I have done or manually top up the card.

Adding money to your account

After selecting your bank you will be asked how much you want to transfer.

Top up your account

After choosing your top up amount you will be connected to your bank to authorise the transfer. For me this is really easy as I have my banking app also on my phone and both are authenticated by FaceID. All I have to do is stare at my phone.

Off to the shops

Once topped up I can give the card and PIN to anyone and they’ll be limited to the amount on the card. The card is handed over and a PIN is requested for a first time purchase. Contactless payments up to £100 are also possible with this card but as you can see from my screenshots I have less than £100 available to be spent. Once transactions have taken place the amounts spent and where also appear in the app. Great for peace of mind and for keeping track of your spending.

I hope this has been helpful, any questions please get in touch. How do you handle shopping when you can’t physically be there for whatever reason? Were you aware that your bank or building society wouldn’t refund you if people were to take advantage of your trust when shopping for you?

Panorama photo of the conservatory

A Christmas Post

The decorations are up! Happy Christmas Everyone.

This is just a quick post to say Happy Christmas. I hope everyone enjoys themselves however you celebrate. The Christmas tree photo below is not mine but the tree at my local park. The toddler is also unknown to me and she decided to photobomb my first Christmas tree photo.

Cannon-Hill-Park-tree

Christmas Decorations

I’m back with my parents as I currently have no care and as this is a Christmas post I won’t say anymore this side of Christmas but the bright side is my Mom and Dad’s decorations are superior to mine. I love the house when it’s all decorated, even if we’re not having a real tree this year.

Family and Friends

I’m very lucky to have a family to share Christmas with and I’m aware not everyone does. Appreciate family and friends, and never take them for granted. Celebrate in a way that makes you happy and I’ll see you on the other side.

Migraines and one long moan

Hello All! A lot has happened since March. At the end of April, I started having horrific migraines which meant that until recently I haven’t been able to do anything but curl up and pray for the pain to stop. Very dramatic, but unfortunately true as many of the disability community will agree. This post is basically one long moan, a title attributed to Sarah DP at Ability Today and one of the people supporting me on my journalism journey with the ADJ. It may also become a podcast soon if everything goes to plan but more on that later.

Medication moan

The medical profession’s attitude towards medication, in general, has shocked me! I don’t like taking more medication than I need but I couldn’t stand the agony of my migraines! I take some tablets regularly, Baclofen being the main one since I hurt my back. Ringing my GP as I couldn’t cope with the pain. I was told I could take Naproxen, Codine, Paracetamol, Baclofen and Diazepam together if need be! This was a big difference from the cautionary tale I usually got. They only seemed bothered about the Diazepam long-term and are happy for me to take the others. Thankfully I have now come off all non-daily tablets but am still waiting for the pain clinic, physio and orthotics referrals to be written. I find it crazy that society would rather I pill pop rather than get the treatment I need.

Medication

Substandard Care

My posts have complained about the care system since I started this blog. People who actually care and who want to do the job are few and far between. I had four PAs in March, now I’m down to one. Why do people apply for jobs and then just disappear without saying anything? I’ve had it with interviews too, people say they’ll turn up and then don’t. I don’t understand why people don’t do what they say they will. This is an almost daily moan for me. I’m starting to wonder if I will find a team of people that I’m comfortable with but am trying to stay positive and not take it personally. I’d be interested to hear from anyone who has to rely on care and how you organise it.

Agency Moan

After two years my care agency are concerned about my shower chair and saying I may need two people as the chair moves. My solution is to get someone in to fix the brakes! My needs have not changed. I never want to put anyone at risk. Their solution involves two people seeing me in a vulnerable position and more money to pay for the second person.

They suggested that my father transfer me into the shower seat! Where is my choice, privacy and dignity in that? Not to mention my father may want to do something other than hang around to transfer me. The idea that it’s ok for my father to struggle upset me massively and inspired this moan. Informal carers are expected to just do everything regardless of their own health!

Updates moan

If I didn’t have to chase people for updates I don’t know what my life would look like! At the moment I’m chasing referrals, Wheelchair Services, Social Services and a private wheelchair company about fixing a second-hand wheelchair I’ve just acquired. I’m writing this paragraph two weeks after the first one as I’ve been struggling with tiredness but I still haven’t heard anything about any of my referrals. Receiving a wheelchair from wheelchair services, which, to date, is sitting unused inside my parents’ porch as it is unusable. I cannot transfer into it. Covid is being blamed for the delay and while that may be true I still wouldn’t have a chair if I hadn’t brought one myself. This is pretty ridiculous considering my chair is my legs and I cannot move around without one!

TDX wheelchair stored in the porch

Waste of resources and money

The amount of items I’ve had delivered to me over the last three years is ridiculous. I’d never look a gift horse in the mouth and I’m very grateful for the help I receive however I hate waste.

I have had eight wheelchair cushions delivered to me since the first lockdown in 2020 and non of them are suitable! The care sector and the wheelchair service keep mentioning budget cuts, yet they have the money to waste ordering cushions for me to try. I appreciate the thought but half of them were unsuitable just looking at them because they were too high. Having specified to anyone at Wheelchair Services who would listen that I need a two-inch cushion it seems daft that I would receive a three-inch, sometimes four inches through the post. Returning the cushions is not an option. Instead of being repurposed for someone else, they would be destroyed. I donated six of them to a local day centre near my house.

I’ve not even mentioned the ‘OT cupboard’ that my Mom happily got rid of some years ago. You know the one, that space in your house where all the equipment goes that a helpful OT or physio has given you that you never use. It’s all meant to help but is such a waste and takes up a lot of room. Allocating resources sensibly reduces costs. I now use the top of my chest of drawers as my ‘OT cupboard.’

One long moan podcast

This post has been very cathartic for me but have you enjoyed it? As part of my journalism course, I have to create a podcast. It’s been suggested to me that my moans are well thought out and amusing, thanks, Sarah. Obviously, most of you haven’t had the pleasure of hearing my voice but I’m considering doing as suggested and turning mine and other people’s moans into a podcast. My hope is that others in the community will suggest solutions and people will feel connected and not that they are the only ones experiencing a particular issue. What do you think?

10 things affecting my wellbeing right now!

I’m back with an update that explains what has been affecting my wellbeing since July 2021 and contributing to my online absence.

Mental wellbeing

My mental wellbeing has suffered a lot since I last posted. I’ve had a lot of ups and downs mostly due to the stress of having to recruit Personal Assistants and contemplating moving out of my parent’s house for what will be the 3rd time. My wellbeing improved when I received my budget but the stress of moving creates its own anxieties and challenges.

I’m receiving help from my local mental health centre and attend sessions once a week. I also signed up for an online mental health platform called SpokzPeople. I wanted to write a post for mental health awareness day but was too overwhelmed to post anything. Mental health is important and not just one day a year. Wellbeing is becoming more prominently talked about since the Ukraine crisis. While that situation is terrible, poor mental health can be triggered and improved by small events too. Talk to someone if you are feeling low or struggling no matter what the reason.

Physical wellbeing

At the start of the first lockdown in 2020, I had so many plans for the upkeep of my wellbeing, so many tours and shows to watch online and accessible fitness classes for disabled people were being launched. Then I caught COVID-19 and it all went to hell.

One of the main things I realised after venturing outside again was how weak I was. It wasn’t all to do with being ill. I’d spent the best part of a year in a home where everything was adapted to my needs. This meant I wasn’t struggling to transfer. This was great at the time and a boast to my mental and physical health that most of my pain disappeared but without the daily struggle my body got lazy and I’m still not back to how I was.

In August 2020, I applied for and was given some resistance bands. The scheme run by Wheelpower is now open again. If successful they will post the bands to your home and their website has lots of videos with classes and ideas of how to use them.

Resistance-bands

I have now signed up for both the yoga and exercise classes starting next week. I’m hoping to get myself in shape. Wish me luck.

Dancing with Motionhouse

As I type this it’s our first performance this evening of Wondrous Stories on Thursday 17th March. If you’re in or near Birmingham we are performing in Centenary Square till Sunday 20th March as part of the Birmingham 2022 Festival. Our 8.30 pm performance is being live-streamed on Friday 18th for those who cannot make it in person. Dance and more importantly my teammates in Freewheelin’ Dance have an enormous, positive impact on my wellbeing.

Watch the Wondrous Stories from Friday 18th here: https://www.youtube.com/watch?v=SGTukQOMTkI

Wheelchairs and Wellbeing

Without my wheelchair, my wellbeing would suffer. My wheelchair is my legs and my independence, which is why I’m still searching for a suitable backup chair for when my Powerchair goes wrong. More on this when I have more time, with pictures I promise.

Recruiting PA’s for future wellbeing

Ever since I received my care package in June 2021. I’ve been trying to recruit people to assist me. I’m now having some success but writing and posting ads, conducting video interviews with the help of an advocate and then meeting people face to face has taken over my life. I’m hopeful I now have a good team and will write about my recruitment process in a future post.

Contingencies for my wellbeing

Contingencies, plans for what happens if my PAs are off work, are doing my head in at the moment. I’ve been looking at agency cover but the average cost of an agency in my area is £23 per hour and my council pays just under £16 agency rate. Next month my team will be on minimum wage pay as the council rate for Direct Payments hasn’t gone up for a least ten years. I know there are many people asking for a pay rate increase on the Direct Payment scheme across many different councils.

Journalism

I’m still studying for my certificate in journalism under the ADJ but due to the above, I haven’t managed to progress much. I’m really enjoying the course so far and thankful that the tutors and organisers are understanding when life gets in the way. I hope to complete this qualification before Christmas. Excuse me for mentioning that holiday before November!

Assistance Dog

I’ve always loved dogs. They make me smile from ear to ear! It’s always been a goal of mine to have a four-legged PA and thanks to Canine Partners it’ll happen. Canine Partners train assistance dogs for disabled people. The main tasks for me will be opening/closing doors, picking up anything I drop and assisting me with my coat. I’m hopeful this will mean I can leave the house independently. This will help my wellbeing massively both mentally and physically if I can do things on my own without asking for human help. If only dogs had opposable thumbs… 😂

Volunteering with Disability Horizons

I’m still part of the amazingly supportive Disability Horizons, I’ve just been doing less, mainly due to the time and energy recruitment was taking. I have several stories to edit and a few reviews planned so I hope you’ll keep your eyes peeled. Working with like-minded people gives me a boost and lessens the feeling that I’m struggling alone.

Disability Horizons

Collective voices create change and better wellbeing for all.

Lastly, I’m a member of several survey and disability groups that ask my opinion on different things. Disability Horizons has just started asking people to sign up to assist with market research. Another well-known company is Open Inclusion. There is also The Diversity Standards Collective which pays £10 per survey they send you. I’m not being paid to mention these and they may be others. These are just the companies I am part of and I find it interesting to share my views and hear of others’ experiences as well. The more disabled people provide feedback about products and services the more inclusive the world will be.

A period of adjustments

A lot has happened since I last posted. I stayed in, got somewhat comfortable on zoom and start to accept the way things are. Then the world starts to open up again. I’m not complaining far from it! A lot of little and not so little adjustments are needed to get used to going out again. The whole world is in the same boat. This post is all about the changes that are happening and the adjustments I’m making to get used to my new normal.

Adjusting to wearing a mask

Unless you’re exempt for medical reasons we’ve all had to get used to wearing masks. It’s only now that I’m actually leaving the house that I’m using one. As I also wear glasses. This is extra tricky as the steam meant I could barely see where I was going and sometimes had to remove my glasses for safety. Not very practical as my glasses are as necessary as a mask and thankfully a lot more comfortable!

I received a tip from one of the carers belonging to the agency that assists me. Cross the straps that go behind your ears. This was said very matter of factly. The person assisting me to shower was wearing a mask, gloves and apron in a steamed-up bathroom but her glasses were clear! Having tried various methods suggested by the internet, the next time I ventured out I tried it and to my surprise, it actually works!

Do you like my fashionable life jacket?

Reintroducing myself to eating out

My first meal outside my house since February 2020 happened on the 19th of May 2021. As eating out was an activity my friends and I did at least once a month, it was weird to feel so nervous and not know what to expect, especially as I booked a place we used to visit all the time.

Armed with masks and sensitiser we all turned up. I was twenty minutes late as I realised ten minutes after leaving home that I’d left my handbag behind! Prior to this, the only outings I’d been on were walks to the park or around the block. I hadn’t picked up my handbag in over a year! Madness in itself! Successfully checked into the pub via the track and trace app I cautiously removed my mask. It felt lovely and strange to sit close to people who weren’t my immediate family. I felt like I hadn’t seen my friends in years and also as if I saw them last week and COVID-19 was just a bad dream. Regardless, it felt amazing to catch up!

Menu adjustment perk

Restaurants, pubs cafes etc now have their menus accessible via apps on smartphones. This is so that staff and customers can have less contact and to discourage people from moving around. The pub we were at was offering table service as well but they also had an app which could be used to place your order. I hope this survives after the COVID-19 precautions. It was nice to be able to see what options were available to me rather than having to ask other people. It’s very convenient to be able to place your own order yourself and would be more inclusive for people with hearing and speech difficulties too.

Pub-app

Anxiety adjustment

I don’t know whether I’ve mentioned on this blog that I suffer with anxiety. I’ve mentioned how weird but nice it felt to be out. Last year I felt anxious to be stuck in. It’s like my brain has been reprogrammed. As horrible as COVID-19 has been, the lockdown was freeing in a way because I wasn’t worried about getting anywhere or whether a certain place was accessible. Everywhere was shut and suddenly courses/tours and entertainment were online! Living with my family, surrounded by my belongings and my bedroom and bathroom adapted to my needs I no longer had to physically struggle.

Now that I’ve started going out again my old worries are coming back. The flip side to this is that seeing people and being proactive is healing the parts of me that really struggled being in lockdown. I’m a people person, even with anxiety. No situation is without its positives and negatives. I try to be as positive as possible and to organise myself so that my reasons for anxiety are as minimal as possible. Are you feeling anxious about entering the world or even just your street again? I know plenty of people are, even google thinks so…

How do you feel about adjusting to the outside world?

Adapting to study again

At the end of April 2021, I was accepted onto the Academy For Disabled Journalists course. This course started last year and is run by Ability Today. I would have never been able to do this course if it wasn’t for the pandemic as Ability Today is based in London. Moving the course online, the organisers have decided that it will continue to be delivered this way after restrictions have lifted. Another example of keeping things as inclusive as possible. I hope places that have offered online resources continue to do so. I have loved being able to go on virtual tours and experiences. While I miss face-to face-interactions, studying online is also easier in lots of ways. I’m really enjoying the course and I have a press pass. Look out world, (when restrictions are over, obviously!) At the end of the ADJ, I receive a Certificate in Foundation Journalism.

Press Photo

I’m going to be learning skills and knowledge to get me closer to my dream of being a travel writer. Although I’m really looking forward to the video unit. If you suddenly notice a change in my content then this course is probably why. Writing is still my go-to though I don’t think that will ever change.

Since I started writing this post I’ve received confirmation that I have my care package fully funded! I’ll write more details about it later on but it didn’t seem right not to mention it as I’ve used this blog as my catharsis surrounding my care struggles. The only way is up says Yazz and I happen to agree. Until next time.

Happy New Lockdown

Happy New Lockdown! This was how my brother greeted me on his first day back at work after the Christmas Holidays and I found it so equally amusing and depressing that I just had to use it for this post. I hope everyone had the best Christmas they could and that New Year was a happy occasion for all my readers.

New years eve Fireworks
New Year’s Eve Fireworks

Recruitment

So new year same…activities! Literally! Last year I wrote about how I had lost a PA due to health problems and this year, thanks to COVID-19 I will be recruiting again. I have no idea what this will look like during lockdown but as my Mom helpfully pointed out, I have to find people to interview first! If I seem disillusioned and bitter about the process then, unfortunately, that’s an accurate picture. If any of you have any tips on how to make the recruiting process less stressful please let me know. I’m thinking of starting a support group for people who have lost carers/PA’s this year.

hands clasping
Hands clasping in support

My lockdown plan

On a more positive note, whilst I feel pretty negative about the recruitment process and Social Care in general, I’m determined that this year is the year that I get my ducks in a row! (Runaway Bride reference.) I’ve contacted The Disability Union, to assist me with getting my care package. I’ve signed up for the Lifebook Course to try and get a handle on how I want to actually live as all the assessments and stress has made it hard to see the wood for the trees. It may help or it may be new-age hype but I’m hoping for the latter. I’ll also be more active with Disability Horizons this year, writing and editing content. Check out my piece on free online courses available to stave off boredom and improve skills and knowledge during this latest lockdown.

I don’t know whether this new year equals a new me but I’m optimistic that it’s a year for change. What are your plans for this year? How are you feeling about the lockdown and the fact that there are now vaccines available?

I’d be interested to hear from you if you’ve had the COVID vaccine already. My disability whilst sometimes frustrating thankfully does not affect my health so I’m pretty far down on the list. A fact that I’m both incredibly grateful for and at the same time, I’m impatient for the world to be vaccinated so we can get back to whatever normal there is for us all. Who’s with me!?

Screenshot zoom Dance

International Inclusion Day For People with Disabilities

Yesterday was International Inclusion Day For People with Disabilities. I hope everyone has had a great day. Apart from more disability-related posts on social media today has been the same as many others for me. Awareness of the need for inclusion and its benefits is growing. This is a good thing for breaking down barriers that disabled people experience. Barriers still exist.

Inclusive Dance World Vision Festival

On Tuesday, 1st December 2020, my dance group were part of an inclusive dance festival in Moscow. Britain, along with many other countries celebrated the inclusivity of dance. The festival showed how everyone can be included and have fun. The Inclusive Dance World Vision festival apparently happens every year with amazing dancers travelling to Moscow to compete. Due to Covid-19, videos were submitted this year and the whole event was live-streamed on the day.

Inclusion in dance

I did plan on posting our competition entry but that will be revealed at our Freewheelin’ Christmas show on December 18th. Instead here is our first competition dance from a couple of years ago.

Inclusion for everyone

The disabled community continues to advise and raise awareness so access and acceptance will continue to increase. Everyone should be included no matter what their disability, race or religion. The barriers I face as a disabled person are mostly caused by society. Days like the International Day For People With Disabilities, Purple Tuesday and the Inclusive Dance World Vision festival show that attitudes towards disability are changing. Change is happening, this is proven in the thought that now goes into designing buildings so that they are inclusive.

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.

Stuck In A Rut!

I’m stuck in a rut and have been struggling with what to write for nearly three weeks. In short, I’m having a self-esteem crisis and a bit of writer’s block. The ideas are there I just haven’t been able to do much with no mobility aids. I hate feeling useless and thankfully, with the return of my chair last week I’m beginning to climb out of the rut my mind has dug for itself. It has got me thinking though about the pressure that is put upon us to be productive. This post would’ve probably been more topical on World Mental Health Day but better late than never!

Being productive improves my mood

I’m the type of person that’s happiest when I have things to do and I feel useful and I think most people are the same. I’d love to know what you do when you’re stuck in a rut, bogged down by monotony, what helps you breakthrough and feel more like you?

Wheel out of that rut!

The first thing I did when I got my wheelchair back was head out for a short walk/wheel around the streets close to my house…I’ve just read that back, maybe around the neighbourhood sounds better? Anyway, it helped. Being able to be somewhere, by myself, helped and that’s what I’d been missing for three months, alone time.

I realise this post is a bit rambling but I just wanted to share my thoughts here. Writing is cathartic for me.

Rhys update

I have heard from Rhys Bowler but he’s been busy writing a speech for the Disability Cross-Party group of The Senedd, (Welsh Government.) The meeting was a week ago so I’m hoping to find out how it went soon. In the meantime, I have sent Rhys and his friend Sam my interview questions and Sam has very kindly shared her story with me. I’ll post it here next week, giving her a chance to see my write up first.

Blog post requests?

Please get in touch with what you would like to read from me. Any and all questions are welcome. I’d love to write a series about how I’m travelling the world but unfortunately, that’s just a pipe dream at the moment, as it is for many others in this COVID-19 environment.

The importance of choice and control

Firstly, thank you to all my readers and followers who have read my blog so far. I’m sorry there have been no new posts for a while but the last month or so, since I posted has been very hectic. This post is about the steps I’m taking to try and gain more choice and control in my life.

Staff equals choice

I mentioned in a previous post that my PA’s were starting soon and that I would share details with you lovely readers about my journey. My two PA’s started the week of the 17th August 2020, both seem lovely and employing them is my first step back to choice and control since COVID-19. What I didn’t count on is that the agency that I’d contracted back in March 2020 to assist me would also want to start on the 17th of August! I employed the agency while I was waiting for the paperwork on my PA’s to be processed and completed. The DBS checks took forever even before COVID-19!

People are like buses!

The week starting 17th August 2020, I had seven different people come to my house! Worse they were invited! I was putting myself through meeting these people in the hope that I’d gain freedom and control in the long run. There’s a well-known expression about buses and them all coming along at once. After eight months of having no formal care suddenly people were everywhere!

Buses

This is very positive in one way as it gets things moving. It was obvious to me at age eleven and is now even more obvious at thirty-four that I can’t rely on my family forever. They deserve choice and control as well! I’ve moved out of my family home three times in my life so far but it has never stuck permanently because of my lack of choice, control and the barriers in my way!

Money facilitates choice and control

I’m still fighting for a bigger direct payments budget. Having the money to pay people for what I actually need would go a long way to removing barriers and afford me more choice. Money does that for everyone, disabled or not. Money makes the world go round!

My petition for more money to meet my needs isn’t going anywhere. Just recently my social worker applied for the emergency COVID-19 fund as CHC, (Continuing Health Care,) isn’t currently assessing people. My social worker was told I’m not eligible and advised her to tell me to use a Shewee!

What is a Shewee?

A Shewee is a plastic device to enable women to pee standing up. Never fear lovely readers this isn’t going to become an in-depth account of my personal habits. Now I could do a whole separate post ranting about how if I could stand up I could probably transfer and not need the device in the first place! Let me know if you’re interested in reading that, but my current thinking is that I’ll bore you to death, so let me just say, in fairness, that some disabled people have apparently found it helpful.

I’ve tried it and many variations thereof and am unable to use them sadly. Not to mention that this device, if useful, would only solve one of the things I need assistance with. My Social worker has advised me to put in an official complaint and I’m still waiting for the payroll paperwork to be completed in order for my PA’s to be on my payroll and have payslips every month. This is despite the fact that they have now been working for me for almost three weeks! #DirectPaymentHeadache.

Inclusive access gives choice and control

In other, more exciting news. I’ve started writing for Access Rating as a content writer. The company is run by disabled people and they aim to improve disability access by offering businesses access audits and encouraging people to record the accessibility of the places they visit. They have created an app that enables anyone to rate venues based on how accessible they are. It’s an idea that’s been done before via review websites but this is the first app that I know of. The rating system is really easy and takes less than 30 seconds unless you really want to add detail.

I’m really excited to be working with them as it helps me influence greater change and choice for a more inclusive society. The app gives everyone the chance to have their say and is free to download. Check it out and rate your corner of the world. 🙂

Personal Health Budgets give choice and control

If you’ve checked out my Facebook page recently you’ll see that I shared a link to BBC news which tells the struggle of a man in Wales to be allowed to manage his care package through a Personal Health Budget. You can probably tell that I am not a big fan of the way Social Care is run but I was genuinely shocked to learn that Personal Health Budgets aren’t an option in Wales! They may be a headache but they do offer the most choice and control for a lot of people.

What is a Personal Health Budget?

A Personal Health Budget is different from what I currently receive as I receive Direct Payments through Social Services. As I’m asking for a bigger care package my Social Worker is trying to get me funding via CHC. If this happens my needs will be fully funded at least partially by the NHS. I could still receive my money as a Direct Payment. As things stand at the moment Rhys and others like him can’t. The NHS decides what he receives and who provides that. I’ve since reached out to Rhys and been given permission to send him some questions.

I’m curious as to how he manages in a system that, according to everything I’ve read, takes away most, if not all, of his choice and control and I’m hoping I can assist in some way. I may be in limbo in many ways but at least I can choose who assists me.

I’m so grateful for the choice and control that I do have and having that inspires me to improve things for us all. This keeps me going, especially as for the last month both my electric wheelchairs require repairs! My private Power Chair has an as yet undiagnosed technical fault and the wheelchair given me by wheelchair services has unsuitable footplates and armrests meaning I can’t leave the house in either one! I have two chairs and I only need one to be working. When I next post hopefully they will both be in working order. What was that about buses?

pig-laughter

Until next time.

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