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!
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Changing Places Awareness Day 2020 Government legislation to increase the number of Changing Places toilets: What they are and why they are important....
Independence with Disability Independence, my struggle for the correct assistance. The way Social Services is structured creates barriers for independent living!...
Interview with Sam from PHB Hunters Sam is campaigning for equality. Read my interview with her where she explains how Welsh disabled people have their choices taken away!...
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.
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.
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This took longer to write than I thought it would. I wanted to post it on inclusivelivingconcepts, in addition to it being published to give my readers could have a chance to ask me questions. The idea was proposed to me by Disability Horizons magazine, I hope people find it interesting. It was pointed out to me when I submitted this to the magazine that I never actually received a positive diagnosis of Coronavirus. There was no access to testing as it was not widely available then. I’ll never know for sure.
Contracting Coronavirus
I live with my parents and brother. Back in April, I believe we all caught Covid-19, but our experiences of being ill were different.
Thankfully, none of us had it seriously enough to need hospital attention, but the road to recovery has been slow, particularly for me.
I don’t think my disability makes me no more vulnerable to the virus than an able-bodied person. I’m probably as fit as any other 34-year-old who doesn’t exercise regularly.
Having watched my brother and mother become ill first, I knew it was only a matter of time before I caught it, as my parents are my main caregivers at the moment.
My brother’s and parents’ symptoms
My brother and dad had what can only be described as ‘typical’ symptoms of Coronavirus – a high temperature and cough. How they felt matched closely with what we were being told in the news, so we assumed they had the virus.
At the time, tests weren’t even widely available for NHS staff, so there was little chance of us being able to get tested. I would like to get an anti-body test once they become available to be sure that’s what we had. But I’m pretty convinced as it is.
Coronavirus recovery time
The quickest to recover was my brother, who felt ill for about three weeks. Friends with family members who have had confirmed Coronavirus tests have said they experienced a horrible week, perhaps ten days.
For me, it was two months from catching the virus before I started feeling close to normal again.
Back in April, the information available about how long we might all be ill suggested that we should’ve begun feeling normal towards the end of my second week. As time went on, more details came out, and the recovery seemed to vary. One article I read described someone having what he called prolonged COVID-19. They were ill for three months.
Pain
My first symptom of possible Coronavirus was pain. I assumed it would be sweating because there was so much talk of a high temperature.
It initially made me question whether I actually had the virus. The symptoms of my brother and dad had seemed so like Coronavirus. Surely it couldn’t have been anything else?
I had what I can only assume was nerve pain. I say this because every muscle and joint in my body ached to the point where I couldn’t cope with sitting up as my hip joints were the worst. It was unbearable.
Painkillers didn’t touch it, but there would be random moments where suddenly all pain and discomfort would disappear, only to reappear again sometime later.
Temperature and cough
I didn’t really have a temperature, as has been talked about so much. I woke up sweating a few times in the night, but my temperature was stable.
A feeling of being generally off-balance and cold was my experience which wasn’t fun. I also didn’t have any breathing difficulties or indeed a cough.
Confusion and rambling
Being confused and disorientated is not something I have experienced before, so this was new territory.
One second I would be convinced I had to do something, but the next I couldn’t remember what it was at all.
I tend to ramble anyway – why use one word when you can use Ten? When I was ill my ramblings made less sense than usual!
I was also aware that I wasn’t thinking as fast or as clearly as I normally do. Thankfully, I now feel like myself again now.
Tiredness
Together with the other symptoms, I didn’t know what was going on half the time, and despite sleeping a lot, I was constantly exhausted.
I have so much sympathy for people who suffer from fatigue after experiencing what I did.
I’d be sitting or lying down, either watching TV or listening to an audiobook, when my body and brain would suddenly want to sleep. Even worse, if I didn’t get my head down straight away, I would go dizzy and experience headaches.
The tiredness lasted the longest, about 15 weeks in total. Even when all the other symptoms had disappeared, I couldn’t actually concentrate on reading or doing anything without needing to go to bed soon after. I couldn’t look at my phone or laptop without getting an instant headache.
Lack of taste and smell
Not being able to taste or smell anything is now a recognised symptom of Coronavirus, but it wasn’t at the time my family was ill, so that threw another curveball.
For me, the virus caused the weirdest sensation. It wasn’t like when you have a cold, and you can’t taste anything or only taste the catarrh in your throat.
Everything tasted like dust. There was no texture to food either. Everything I put in my mouth could have been the same food.
I suppose at least it didn’t taste horrible, but trying to eat with no sensory feedback was hard. The lack of smell was easier to cope with as I’d experienced that before. It was also weird when these senses suddenly came back. I was actually overwhelmed for the first two or three days afterwards as everything was suddenly different.
Nausea
This was the worst symptom. I suffer from nausea anyway, but the virus took it to a new level. Nothing relieved the nausea in any way until I recovered!
As mentioned earlier, I had no breathing difficulties, and I didn’t really have a cough. But I do believe that this virus, assuming it was Coronavirus, attacked my digestive system.
I felt like somebody had turned me inside out. If I didn’t eat, I felt ill, and if I eat more than a few mouthfuls, I was sick. It was a delicate balance that I’d mostly figured out by the beginning of week two.
The rest of my family stopped eating altogether for around two days and then felt better. My nausea lasted about six weeks.
I’ll probably never know if my theory is correct, but it was disconcerting to have an atypical experience when the news and NHS were discussing what to expect every day. My mum’s symptoms also echoed mine more closely, so it wasn’t just me.
I hope reading this has been interesting and useful in some way. I’m so grateful that none of my family had to go to the hospital.
With the lockdown relaxing, I just hope people will be sensible so that everyone can get back to ‘normal’ and leave their homes without worrying about catching this awful virus.
I’ve been very lucky, but I never want to feel like that again. Stay safe, Everyone.
My next post will be about the importance of choice and control and how I’m still having to fight to achieve this! So much in fact that I’ve started a new Twitter hashtag, #DirectPaymentHeadache. If you or someone you know is having issues with the support you receive, DP or not, please get in touch. Together we can effect change for a more inclusive world. 🙂
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Interview with Sam from PHB Hunters Sam is campaigning for equality. Read my interview with her where she explains how Welsh disabled people have their choices taken away!...
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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
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!
Cerebral Palsy My experiences living with a disability and being a wheelchair user. The physical barriers I come across and the attitudes I encounter....
Interview with Sam from PHB Hunters Sam is campaigning for equality. Read my interview with her where she explains how Welsh disabled people have their choices taken away!...
In this category. I will write about my experiences, sharing what living with the disability known as Cerebral Palsy is like for me.
What is Cerebral Palsy?
Cerebral Palsy is a neurological condition where parts of the brain don’t develop properly. It can be caused by infection or abnormal brain development. In my case, I was born three months early so the part of my brain that controls movement never developed properly. The reason for my premature birth was never discovered.
How does your disability affect you?
My disability affects my arms and legs which means I have poor dexterity and I cannot stand or walk unaided. My need for equipment to assist me in life is a must as is my need for care support. I have to access services to get this assistance. As a result, my opinions have become well-formed over the years!
I rely on my wheelchair to move around and grab bars to transfer. In order to be able to transfer all of my equipment needs to be at the correct height and in the right place. Because of this, I have a wet room with grab bars surrounding the toilet, a shower chair, a slide sheet to assist me to transfer in and out of my shower chair, a custom-made manual wheelchair and a profiling bed.
Without the above products, which I will review, I would be reliant on a hoist, as many people with a disability do! While there is nothing wrong with this, hoists are large and therefore take up space. It is also healthier for me to use my muscles and move my body as much as possible.
Me with an umbrella attachmentMy dog sunbathing in the garden
Changing Places Awareness Day 2020 Government legislation to increase the number of Changing Places toilets: What they are and why they are important....
Independence with Disability Independence, my struggle for the correct assistance. The way Social Services is structured creates barriers for independent living!...
My Suspected Coronavirus Experience Coronavirus: From contracting the virus, to the symptoms I experienced. This is what Coronavirus felt like to me....
