Cerebral Palsy

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.

Shop safely and protect your money when others are assisting you.

Shop safely and protect your money when others are assisting you

How to shop safely and protect your money when others are assisting you is something I never thought about until I started relying on formal care. There are many reasons why assistance may be needed. For me, my disability means that I cannot access many things without help. So I thought I’d write a post about the solution I’ve found for this.

I started inclusivelivingconcepts as I wanted to share my lived experience of disability, the struggle for access and inclusion and any useful tips I’ve picked up whilst living with Cerebral Palsy.

Handing over your card and pin isn’t advisable even if you trust the person implicitly.

Protecting your money when others are shopping

My PAs used to shop for me. Due to waiting for social services, I’m relying on my parents for the bulk of my care at the moment. Unfortunately giving your PIN number to anyone, even a family member, is seen as aiding fraud as you are giving them access to your money. What this means is that you are giving them permission. Regardless of what disabilities you have this means you won’t be covered should anyone spend your money.

Banks won’t cover multiple people shopping for you!

This is why it is vital you protect your money when others are assisting 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 I have a disability and need help to access the community I was told I could nominate two people on my account. 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 enable you to shop safely and protect your money.

Shopping safely

Now that I knew bank accounts were out I started thinking about alternatives. The obvious one is cash but I feel vulnerable accessing 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. 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 give me a commission for recommending their product, 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 will 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. This is where you connect your current account, this is what I have done. Adding money manually is possible but if your bank is listed the automation process is easier.

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 FaceID authenticates both. All I have to do is stare at my phone.

Using Tesco’s Clubcard Scheme to shop safely and protect your money when others are assisting you by not giving access to your main accounts.

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 inclusivelivingconcepts post has been helpful. please get in touch with any questions or comments.

I’m interested to know how you handle shopping if you need assistance in accessing what you need. 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?

Financial institutions need to think about how people with disabilities can access their money with choice, control and independence. Three inclusivelivingconcepts we should all have!

Are migraines a disability?

Are migraines a disability? In my experience yes!

inclusivelivingconcepts was abandoned because, 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. Whether it is classed as a disability or not officially is down to how affected you are. In my case, pain like that is temporary. I couldn’t do anything sometimes as I couldn’t see from my left eye.

Are migraines disabling?

Professor Peter Goadsby at Kings College London and the trustee of the migraine trust describes a migraine as,

“an inherited tendency to have headaches with sensory disturbance. It’s an instability in the way the brain deals with incoming sensory information, and that instability can become influenced by physiological changes like sleep, exercise and hunger.”

Taking this definition, the answer to the question, are migraines a disability is also a resounding yes as it is described as an instability in the brain.

An individual cannot help the fact that they are prone to migraines, but if specific triggers are realised, they may be avoided. An example is watching too much TV or reading without glasses if needed. Some people do not have triggers but a big one for me is stress and overexertion.

Substandard Care causes massive stress!

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. 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. 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. This stress causes my muscles to tense up even more than usual. This is the double whammy of my Cerebral Palsy increasing the chance that I will experience a debilitating migraine.

Are migraines a disability that qualifies a person for benefits?

Yes, if your migraines are likely to last over twelve months and they prevent you from working. It all depends on how a migraine affects an individual and whether treatments are effective.

Medication for migraines

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 due to my Cerebral Palsy. Baclofen is the main one since I hurt my back trying to live independently, (carer free,) without having access to the right help.

I rang my GP as I couldn’t cope with the pain. I find getting access to a doctor really difficult since the pandemic.

When I did get to speak to a doctor 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. Diazepam is the only drug doctors didn’t want me taking long-term. Thankfully I have now come off all non-daily tablets. I find it crazy that society would rather I pill pop rather than get the treatment I need.

It is now July 2023 and I have just got to the top of the physiotherapy waiting list, received an appointment for my local pain clinic and have an OT that I can contact. I first wrote this post in October 2022. Maybe this is why pills are prescribed, doctors know that it takes ages to gain access to the appointments needed. It’s taken two years for me to get these appointments.

Migraine Medication

Different types of migraines

According to the NHS, there are three categories of migraines. To date, I have always had a migraine with aura. Aura in this context means symptoms. The three main types of migraine are:

  • Migraine without aura which has no warning signs at all.
  • Migraine with aura. This has warning signs like feeling numb and tingly, seeing lines in your vision, feeling dizzy or having difficulty speaking.
  • Migraine aura without headache, aka the silent migraine. This is where you get the symptoms above but without the headache.

Treatments for Migraines

Apart from painkillers, there are medicines called triptans which affect the serotonin in the brain to relieve the symptoms of a migraine. There are different types of these medicines sumatriptan is often recommended, according to NICE and works to narrow the blood vessels in the brain. This is based on the theory that migraines are caused when the blood vessels become too wide.

Medicines like cyclizine are used to help stop an individual from feeling or being sick. Not only can the effects of a migraine cause sickness but triptans can cause this effect too. Changes to lifestyle are recommended, depending on what triggers an individual. Relaxation techniques and acupuncture may also be an option.

For more information and help with migraines visit The Migraine Trust.

How does my disability affect health and wellbeing?

Mental wellbeing

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 6th time. My wellbeing has improved as I now have a solicitor to assist me in fighting for my rights.

Mental health therapy has been really hard to access for me. I don’t know if this is because of my disability, many private services I’ve asked about don’t have wheelchair access. Waiting times within the NHS are horribly long for anyone at the moment, even if there are no additional needs to worry about.

Needing someone to assist me with virtually every task negatively impacts my mental health but I’m hopeful that with the right support in place, my mental wellbeing will be boosted.

I started inclusivelivingconcepts to help me work through what is going on in my life. Thinking that writing about my experiences would not only help others but also improve my own mental health as well.

I also attend 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. Poor mental health can be triggered by both big and small situations.

Talk to someone if you are feeling low or struggling no matter what the reason. See the list of helplines below.

This picture shows a black telephone handset with a black circle around it. The background between the phone and circle is white

Helplines:

There are accessible options if you find using a phone inaccessible due to a disability. The info below was taken from the Mind website:

Samaritans

To talk about anything that is upsetting you, you can contact Samaritans 24 hours a day, 365 days a year. You can call 116 123 (free from any phone), email jo@samaritans.org or visit some branches in person. You can also call the Samaritans Welsh Language Line on 0808 164 0123 (7 pm–11 pm every day).

SANEline

If you’re experiencing a mental health problem or supporting someone else, you can call SANEline on 0300 304 7000 (4.30 pm–10.30 pm every day).

National Suicide Prevention Helpline UK

Offers a supportive listening service to anyone with thoughts of suicide. You can call the National Suicide Prevention Helpline UK on 0800 689 5652 (6 pm to midnight every day).

Campaign Against Living Miserably (CALM)

You can call the CALM on 0800 58 58 58 (5 pm–midnight every day) if you are struggling and need to talk. Or if you prefer not to speak on the phone, you could try the CALM webchat service.

Shout 

If you would prefer not to talk but want some mental health support, you could text SHOUT to 85258. Shout offers a confidential 24/7 text service providing support if you are in crisis and need immediate help.

The Mix

If you’re under 25, you can call The Mix on 0808 808 4994 (3 pm–midnight every day), request support by email using this form on The Mix website or use their crisis text messenger service.

Papyrus HOPELINEUK

If you’re under 35 and struggling with suicidal feelings, or concerned about a young person who might be struggling, you can call Papyrus HOPELINEUK on 0800 068 4141 (24 hours, 7 days a week), email pat@papyrus-uk.org or text 07786 209 697.

Nightline

If you’re a student, you can look on the Nightline website to see if your university or college offers a night-time listening service. Nightline phone operators are all students too.

Switchboard

If you identify as gay, lesbian, bisexual or transgender, you can call Switchboard on 0300 330 0630 (10 am–10 pm every day), email chris@switchboard.lgbt or use their webchat service. Phone operators all identify as LGBT+.

C.A.L.L.

If you live in Wales, you can call the Community Advice and Listening Line (C.A.L.L.) on 0800 132 737 (open 24/7) or you can text ‘help’ followed by a question to 81066.

Helplines Partnership

For more options, visit the Helplines Partnership website for a directory of UK helplines. Mind’s Infoline can also help you find services that can support you. If you’re outside the UK, the Befrienders Worldwide website has a tool to search by country for emotional support helplines around the world.

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. Not needing to access anywhere but my home was great at the time and a boost to my mental and physical health. 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. I still don’t use them regularly but that’s down to my willpower, I am using them more now.

Wellbeing resistance-bands

I’m now attending physio sessions so hopefully this will help me physically. Those of you who follow me will know I already have some fetching new boots and I’ve tried a very expensive wheelchair that holds me in a great position and eliminates my back pain.

Dancing with Motionhouse

Our first performance of Wondrous Stories was on Thursday 17th March, as part of the Birmingham 2022 Festival. Dance and more importantly my teammates in Freewheelin’ Dance have an enormous, positive impact on my wellbeing.

Watch the Wondrous Stories performance 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 second chair. The Q700UP I trialled at my physio session would be amazing but it is very expensive! More on this when I have more time, with pictures I promise.

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… 😂

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, including access and disability. A 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 there 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 people, both those with and without a disability provide feedback about products and services the more inclusive the world will be.

If you have any questions or comments about inclusivelivingconcepts please get in touch. I would love to hear from you.

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 visiting had the best Christmas possible and that New Year was a happy occasion for all my inclusivelivingconcepts readers.

New years eve Fireworks
New Year’s Eve Fireworks

Recruitment

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! The joys of living with a disability!

If I seem disillusioned and bitter about the process then, unfortunately, that’s an accurate picture. Getting access to the right support was horrid before, It is almost impossible at the moment! 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/PAs this year!

hands clasping
Hands clasping in support

My lockdown plan

On a more positive note, whilst I feel pretty pessimistic about the recruitment process and Social Care in general, I’m determined that this year is when 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 people who have had the COVID-19 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 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

Hello, inclusivelivingconcepts readers. Yesterday was International Inclusion Day For People with Disabilities. Did you all have a great day?

Today has been the same as many others for me, although disability-related content has increased. Generally, the awareness of the need for inclusion and its benefits is growing. Understanding breaks down barriers disabled people experience, e.g. accessing facilities and work. However, despite this, society is headed in the right direction.

Inclusive Dance World Vision Festival

On Tuesday, December 1st 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 organisers illustrated how to be inclusive and have fun.

The Inclusive Dance World Vision festival happens every year. Amazing dancers travel to Moscow to compete. Due to COVID-19, the event was livestreamed rather than in person. Everyone participated through video submissions, which shows how, with adjustments, events can be accessible.

Inclusion in dance

We will reveal our competition entry at our Freewheelin’ Christmas show on December 18th to show it would spoil the surprise. Two years ago, we competed for the first time. See the video below.

Inclusion for everyone

Access and acceptance are increasing as the disability community raises awareness. No matter what disability, race, or religion people have, we all should be included. The barriers I face as a disabled person are caused mainly 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!

Interview with Sam from PHB Hunters

My first interview on inclusivelivingconcepts was with Sam. I hope to interview many people from the disability community. If you’d like to be interviewed please get in touch.

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 PAs 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 PAs 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. The lack of access to support, and her continued struggle to have a working contingency plan in place should any of her PAs 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 PAs once again through the Direct Payment scheme, 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. Rights should always be fought for!

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:

• There is a team of 6 trustees almost like a syndicate.

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

• After you speak to them, they then speak to the NHS.

• Decisions are made for you over how your care is provided, “bearing in mind it’s your care”.

• 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?

ITU’s Fail

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.

The importance of choice and control

One of the main reasons I started inclusivelivingconcepts was to talk about the importance of choice and control. Having access to different choices and control over how you live your life is a basic human right. However, people don’t always have choice and control. This is especially true when disability makes you reliant on other for basic needs.

Staff equals choice

I mentioned in a previous post that my PAs were starting soon and that I would share details with you lovely readers about my journey. My two PAs started the week of the 17th August 2020. Both of them 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 PAs 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 aceess to 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 so there is no accessing funding from them! Despite this 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. 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!

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 the Direct Payment I receive 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. My interview with his partner Sam is now published.

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?

Until next time.

Changing Places Awareness Day 2020

Today, 19/07/2020, is Changing Places Awareness Day in the UK, and the government has announced that Changing Places toilets will be mandatory in big public buildings in England and that 37 motorway stations will have Changing Places toilets installed.

What are Changing Places toilets?

Changing Places toilets enable people who are hoisted or who cannot use standard disabled toilets to be able to relieve themselves in dignity and comfort with enough space for the equipment they need and also the people needed to assist them. Fitting a disabled person and the people assisting them into a bathroom with the door shut is a squeeze at best and impossible at worst. Changing places have plenty of space.

Changing Places Equipment Explained

Changing Places Bathroom
A picture of a Changing Places bathroom with all the different components/adaptions labelled.

The hoist means that the facilities in this toilet can be used by people who otherwise can’t transfer. The height-adjustable bed provides a safe and clean surface for people who cannot use a toilet to lie down. The fact that it is height adjustable means the person/s assisting does not have to bend into awkward or painful positions to assist with toileting or changing the person they are with. There is even a shower so that an individual can get clean if needed, complete with a privacy screen. The floor is designed to be waterproof and easy to clean. This is a great step forward in inclusivity, but it is not wholly inclusive.

I’m really pleased about the decisions made by the government today in regard to this, as it means access and freedom to so many people with disabilities. However, I cannot use these toilets as there isn’t a static bar on a wall next to the toilet. Different adaptions suit different people, and that is why it’s important to be conscious of inclusive design.

Why is the toilet in the middle of the floor?

With the toilet in the middle of the floor, there is plenty of room on either side of the toilet for a carer to be on each side of it. If someone is being hoisted, two people can often be needed. This is also the reason there is plenty of space between all the equipment in the room. I’m not sure what the answer is to make Changing Places inclusive for all. My one idea is to make the grab bars on either side of the toilet longer. With assistance, I could then use the grab bar. I’ve yet to see any longer grab bars that fold up, though. If they exist, please let me know. Also, I would like to know your experiences with Changing Places toilets and if you’ve found the shower in them useful.

My COVID-19 experience post is coming this week, so keep your eyes peeled. If you are enjoying this blog, please consider following me. Simply scroll down to the bottom of this post or click on the appropriate icon to the right. I’m now on Twitter!

Accessible Rooms: How To Make Them More Accessible

Due to a certain well-known virus, most of us aren’t going anywhere at the moment, but I said I’d write an accessible rooms post on inclusivelivingconcepts before the COVID-19 madness started, and it occurred to me that the house arrest many are experiencing at the moment is a good opportunity to get organised for our next accessible getaway.

Questions to ask before you book your accessible accommodation.

I’ve found the best approach is to think about what would make your stay IMPOSSIBLE and then structure your questions around making sure the impossible can’t happen. The obvious access needed for a wheelchair user is steps. I always specify the exact thing I need or don’t need to make sure I can access everything.

Using the example of steps, the question I would ask is, does your accommodation have any steps? The keyword here is any. If they say no, I follow up with none once inside. The reason for this is I have often been told that the entrance has no steps but that the bathroom is split level. People tend to think about entrances when you ask any access question but not beyond that!

Blue door
Blue Door Entrance

My Top 10 Accessibility Questions:

1) Does your accommodation have any steps?

This is a deal-breaker for me unless there are lifts. Hotels often have alternative access, but If I want to book a holiday cottage, for example, it has to be wheelchair accessible. Steps may not be a barrier for you. Your insurmountable barrier may be that you need your accommodation to have hearing loops etc. Personalise this top ten to your circumstances.

2) If there are steps, are there lifts/ramps available to get to where I want to go?

I ask this because some people see in black and white, and it might not occur to them that there are steps at the front but step-free access at another entrance. Finding this out means I may have more choices about where to stay.

3) What is the width of your doorways?

This question is one I don’t have to ask as I’m lucky enough that my biggest piece of equipment (My PowerChair) fits through standard doorways, but it is a close thing sometimes! To be safe, measure your chair from the widest point to the widest point. Then you can say I need doorways to be no narrower than XYZ. Please note: If you have a piece of equipment bigger than a wheelchair, e.g. a hoist, measure that instead. Bit obvious but still worth pointing out, you want the doorway/s to admit you and anything else you might need.

4) Is there an accessible bathroom with a wet room?

I need a wet room, as I can’t access a bath or any bathing setup that isn’t flat. Obviously, you could change this to whatever setup you prefer.

5) Are there grab bars next to the toilet, fixed to the wall?

Again, this is very specific to me. I cannot transfer without static bars that are fixed to the wall. Fold-up ones lift up as I stand, I’d be there all day! You might need fold-up bars or no bars at all so that a side transfer is possible or enough space around the toilet to use a hoist. If you’re able enough that a toilet is a toilet, then leave this out.

6) Is there a shower seat fixed to the wall?

A fixed shower seat is the set-up I find most accessible. Hiring a shower chair is an expense, and they are often too high for me to transfer into. There are companies that will lend you equipment, and many deliver to your accommodation, for a fee of course.

You may be wondering why this question didn’t follow the wet room question. The reason is if there isn’t a wet room I can’t stay there, ditto if I can’t access a toilet. Given that, the specifics of the shower are saved until I’ve ascertained the bathroom and toilet space are accessible for me.

7) How high is the bed?

My biggest issue isn’t that I use a wheelchair. It’s my height, together with my disability. I’m 4.8ft, just short enough to make an already challenging transfer that much more difficult! I, therefore, need a low bed. You may need a high bed to make it easier to get out of it in the morning. It’s also worth asking if there is space under the bed itself. If you travel with a hoist or hire one, the last thing you want to discover is that the hoist cannot get close enough to the bed!

8) Are the light switches near the bed?

If you’re like me, you might need assistance in the night, sometimes, however, I just want to roll over and check the time without disturbing people. If the light switch isn’t reachable from the bed, this isn’t possible. It may sound trivial, but I’m no good at routing around in the dark! It also makes things easier and safer when I do need assistance.

9) Do you have adjoining rooms?

This question is more about hotel rooms and is related to the fact that I need assistance. If this doesn’t apply, leave it out, but if I need anything at stupid o’clock, my family or my PAs have the luxury of coming straight to me and not having the honour of traipsing a public area in their PJs! If you are renting a property, then this isn’t needed.

10) Can you email me photos of the property/room type that I’m looking at booking, please?

I will never go anywhere again without first seeing pictures of where I’m staying and the layout. Even after asking all these questions, things can be topsy-turvy upon arrival. Even with the best will in the world, people misunderstand and, in some cases, give completely the wrong information!

Access gone wrong!

Prior to my stay in London, I asked everything I’ve outlined here and received satisfactory answers. Upon arrival, the shower seat was a portable seat that hung over a static grab bar and was VERY shallow. I eventually got my money back as I had one shower over three days, which nearly ended with me and my PA on the floor as the seat wasn’t stable! I did, on this occasion, request pictures, but they weren’t clear, and I took a chance. Businesses should be happy to provide clear images of either where you are staying or a comparable room/building. If they are not, find somewhere more helpful that will accommodate you.

Camera clipart
Clip Art of A Camera

Products to help make your accommodation more accessible

Having found somewhere accessible to stay and phoned the business to ask about access requirements, it’s quite likely that the place you want to stay isn’t perfect and not as straightforward as it would be if you were in your own home. Instead of not going anywhere and staying home (sound familiar?), there are products out there designed to make accessible rooms more accessible to you.

Portable hoist

Everybody is unique, and because we are all unique, our version of accessible is different. What works for one person may not work for another. Some people cannot manage without a hoist to transfer from A to B. This doesn’t have to mean that travel is out of the question. If you are hoisted, chances are, to save space and for convenience, you have a ceiling track in your home. Unfortunately, this isn’t portable. There are, however, portable hoists available for purchase or hire. See the image below. If hiring a hoist, always check the dimensions with the company to be sure that it will fit through doorways.

Hoist
Picture Of A Portable Hoist

No hoist is small by any means, but you can see that the one pictured above does fold and can be moved about. For the purposes of this blog post, all images are taken from mobility websites. I’m not endorsing any particular product, just giving some idea of what’s available. If you use something that I haven’t included in this post. Please get in touch and tell me about it.

Patient transfer aids

If you don’t need a hoist but need some help transferring, there are many disability aids available. You do need to be able to weight bear to use these.

Patient Turner
Patient Turner

A patient turner, like the picture above, is a device that assists you in transferring without putting a strain on the person assisting you. To use; stand on the disc with knees against the pads, holding onto the bar at the top. The bar can also be used to pull yourself up into a standing position, and the patient turner can be wheeled short distances by your PA/carer. I’m not sure how portable they are in practice, but the top bar can be unscrewed for transport on most models.

Patient turntable

Patient turntable
Turntable

The image above is of a patient turntable, a more portable device than the patient turner. The disc turns around, enabling an individual to be assisted from A to B without having to struggle to move their feet and turn their body. To use; stand on the disc, and, with the help of someone else, the movement to turn around is initiated, and the disc turns. This is what I use to get from my wheelchair to bed. By positioning my wheelchair next to the bed, disc on the floor, under my feet, I can stand (with the help of my PA.) The disc turns, and my legs go from being in front of my wheelchair to in front of the bed or vice versa, A 90-degree turn has been achieved, and all I have to do is stand, very portable.

Transfer/Bath Step

I use a bath step because it is very rare that furniture like beds and chairs are low enough for me to transfer onto. Steps like this are sturdy and non-slip and add height for those of us who need a bit of help in that department. I use it together with the turntable above. The step I use is made up of different blocks so that you can add or take away layers as required. It is very useful and, in my case, means I can stay in places where otherwise I would need a specialist bed that is height adjustable.

Transfer/Bath Step
Transfer/Bath Step

Furniture blocks

These blocks come in different heights and in rectangle, square or round shapes. They can be used to make furniture higher, either for transfers or so a hoist can be slid underneath, e.g. a bed. Hotel staff, if asked, will position the feet for you, but the bed, chair, etc., will have to have feet of their own that can be encompassed by the blocks. Again, it is something simple that turns the inaccessible accessible. Many are also stackable for storage.

Portable Ramps

Depending on what steps and access are available, a portable ramp may be a good investment. These can be expensive, but if you’re patient, some good bargains can be found online. I bought a 3ft ramp off eBay last year for £15. It lives in my car boot, so I have it with me when I need it.

Picture Of A Portable Ramp
Picture Of A Portable Ramp

Grab bars

If grab bars have to be in a certain place to be accessible, suction grab bars can make the difference between not being able to stay somewhere and managing. They need to be fixed to the wall by someone with a lot of strength, and having done so, weight should be put through the bar by someone who can cope if the bar falls off the wall. Only then should the person requiring the bar start to use it. Prices start from under £10 to over £100. Some are better at sticking to walls than others. The ones I use are called Mobeli, expensive but worth it.

Grab bar
Grab Bar

Shower seats

If you need something to sit on whilst in the shower, there are plenty of portable seat options, like the one below. However, you do need a degree of balance, which I don’t possess. That’s why I always ask if a shower has a seat attached to the wall. This means I can lean back on the wall for balance and affix a portable grab bar next to me to hold onto. I use a wheeled shower chair at home, but it’s definitely not portable. There are also stools, some of which can be folded. These take up less room in luggage but have no back.

Portable shower seat
Portable Shower Seat

I hope you have enjoyed reading this post and are inspired to begin planning your trips away, ready for when this crisis is over. For now, take care of yourselves. Stay home and stay safe!

Look out for my post: Self-isolation Activities.

Access to work?

Access to work as a person with a disability can be tricky, to say the least. For those with an invisible disability, there is the dilemma of what to disclose. Being a full-time wheelchair user and dependent on others for care it’s obvious I have additional requirements.

Support with accessing work

I contacted a support service to help me find a job. I was told I’m better off on benefits and that I should apply for the Severe Disability Premium benefit. I’d heard of this benefit and the top-up would make life easier. People are only eligible if they already receive certain benefits. I received qualifying benefits at the time so I filled in the forms and applied.

confused
Woman with hands up, looking confused.

Is Severe Disability Premium benefit means-tested?

Having applied for the benefit I found out I don’t qualify for the Severe Disability Premium because I have savings of over £6,000 and I also live with my parents. If I had savings less than £1500 I would’ve been sent a form to fill in that asks me to declare my income.

Too disabled to work?

As I have high care needs working could affect my benefits making me worse off financially. If employed I would have to pay for my Direct Payment. I can’t afford this! My care package doesn’t enable me to work or currently meet my needs. Although I have 24/7 care, the hourly rate I can afford to pay is £11 an hour! This is barely above minimum wage and too low to attract competent staff that will enable me to live not just exist! Accessing work right now isn’t possible sadly.

Society seems designed to have me sitting at home, wilting from boredom? People with care needs do work and have care packages that give them choice and freedom. They often have some form of NHS funding known as CHC which provides care free. This is because they have health needs that require specialist care.

The access to work government scheme

The Access to Work scheme helps with grants for equipment and or support if you have a disability or mental health condition. To be eligible for the scheme you need to:

  • have a physical or mental health condition or disability that means you need support to do your job or get to and from work
  • be 16 or over
  • be in paid work (or be about to start or return to paid work in the next 12 weeks)
  • live and work (or be about to start or return to work) in England, Scotland or Wales. Northern Ireland have a different scheme. Unfortunately the Access to Work isn’t available in the Channel Islands or the Isle of Man.

I will be applying when I am in a position to have a job and I’ll write a separate post about how to apply. For now I’m focusing on my journalism studies with Ability Today and am seeking advice on how to get the right support from my local council.

What do you think about the barriers surrounding accessing work with a disability or health condition? Let me know. Let’s make employment be more inclusive. Share your stories here.

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