Disability

Trabasack Curve with Instructions

Trabasack Curve Review

I have been given a Trabasack Curve to review. Whilst this product was sent to me free I have been using these products for many years and have brought several. This review contains my honest opinions and experiences of the product. This was originally written for Disability Horizons but I have been given permission to post it on inclusivelivingconcepts.

What is a Trabasack?

A Trabasack is a bag and a lap tray all in one. It is a versatile product that has many uses. My main use is as a removable tray but it can also be used as a bag and for storage. My spasms are just one aspect of my disability. Therefore I needed a tray that I could have food on without my spasms chucking the food all over the place.

The Trabasack was invented by Clare as a lap tray for her son Joe who uses a wheelchair. The tray had to be safe and practical to use. There are now three main models of the Trabasack. The Max, Mini and Curve. The Mini and Curve Trabasack models come with or without a ‘connect’ surface. The Connect models are made with soft Velcro material on the tray portion of the Trabasack Curve. This is useful if you want to Velcro items so that they stay put on the tray. For this review, I was given the option to receive a Curve model with or without this feature.

Curve Connect or Curve?

I chose the Curve model without the Connect feature for the purpose of this review. I’ve learnt from experience that the ability to wipe the product clean is important to me, not because I’m particularly messy but everything sticks to Velcro. My main use for this product is to eat and drink and having owned a Curve Connect for seven years prior to receiving this review unit. I know that crumbs in particular stick to this tray like glue! Connect is a lovely feature that is doing what it is designed to do but it is not particularly convenient with food I find.

The Connect versions are great for anything and everything you want to stay in place. Check out my review for more information.

Trabasack Curve with Instructions

Using the Trabasack Curve

The Curve comes with an instruction leaflet and two straps, one short one long. Which strap/s you use depends on how you want to use the product.

As I’m always in my wheelchair I prefer to use one strap around my waist. This keeps the curve as close to me as possible and is the most stable. Due to my disability, I cannot reach around my back so if I’m by myself I connect the two straps together and wrap them around my armrests at the front. This position isn’t as good but at least I can secure it independently. The Trabasack can also be worn like a standard rucksack and slung over one shoulder. It may have been created for disabled people but it makes a really great laptop or tablet bag whether you have a disability or not.

Trabasack Curve on Lap

D-Rings and ring pull zips

The Trabasack has six D-Rings to which the straps attach. These are strong and sturdy as well as being easy and simple to use. Instead of fiddling about opening the hook and then struggling to attach it to the ring, simply press the hook end of a strap against a D-Ring. The hook will be pushed open and snap onto the D-Ring.

Curve strap hook and D-Ring

The zip runs all the way around the product and the zips are fitted with ring pulls so that the zips are easier to use if you find using zips hard due to disability. Instead of having to grip a tiny object, simply place a finger or thumb in the ring and move your hand to the side to open or close the zip. Much easier to access if you have strength or dexterity issues like me. I keep the zips together as I like the way it looks and I have no trouble gripping them but if you want to make it easier to open and close always have one zip at the front of the curve. That way you only have to pull one zip instead of two to open or close the bag.

Trabasack Ring Pull Zips

Trabasack Curve Tray

The tray portion of the product is not only wipe-clean but also non slip. If, like me, you want the wipe-clean Curve the company does sell a non-slip mat, cut to the same shape as the Curve. This can be very useful and can be kept inside the Curve when it is not needed. I have used one before and keep it handy but for day to day, I find the original non-slip surface good enough for my needs.

The tray portion also has quite a high lip/edge on it to stop items from sliding off. I have to say this is why I brought a Trabasack Curve in the first place. I saw a photo of somebody in a wheelchair, using a Trabasack Curve to carry a plate that contained an English breakfast. This may not sound impressive but the plate included baked beans, the person’s lap wasn’t level and the plate and more importantly ALL the food was on the tray!

english-breakfast

Curve Tray Bean Bag

The reason the breakfast didn’t end up on the floor wasn’t just due to the built-in edge around the tray and the straps. The Curve also has a removable bean bag inside it to help keep it level. If you spend a few seconds setting it up on your lap then it really is very stable. My spasms and startle reflex have tested this so this isn’t just empty praise. Before I came across the Trabasack Curve I couldn’t use a tray at all as food simply slid off my lap!

Curve Beanbag

Eating with the Trabasack Curve

Eating outside and using unsuitable tables when out is possible with a Trabasack Curve. Unless I have a lunch box I do prefer to rest the front edge of my Trabasack on a table as then I don’t have to bend to my lap to eat, (my knees make it very low!) Prior to having the Trabasack Curve when eating out, I had to lean forward as my wheelchair wouldn’t fit underneath restaurant tables. In fact, when we went out for a family meal two weeks ago I forgot that my Curve had been taken off the back of my wheelchair. I then had no choice but to lean forward. Doable but a lot less comfortable.

Dinner Plate on Trabasack

Trabasack Curve and iPad

Weather permitting, I like to sit outside and write, watch films etc so I love my iPad. I love my iPad on my Trabasack Curve even more as I’m not restricted to sitting where tables are.

Another big plus is when I have finished using my iPad I can place my iPad inside my Curve. It is nice and safe on my lap. I am now hands-free and don’t have to worry about people possibly stealing my property from my wheelchair. With my original Curve Connect, I put velcro on my iPad case and stuck my iPad to the tray, giving me even more peace of mind. I actually ruined an iPad case doing this. Trust me when I tell you a little goes a long way! I put plenty of Velcro on the case and it worked too well! I had to remove the iPad from the case to get it off my Trabasack!

Storing items inside Trabasack Curve

I wish this bag had been around when I was at school. A laptop up to 14” can fit inside the Trabasack. It wouldn’t have replaced my school bag, too many books, but I could’ve kept my personal belongings on my lap. This is what I do now. I find my laptop too heavy on my legs to use with the Curve but many people do. The Trabasack Curve is a fantastic bag for electronics whether you have a disability or not. The padded inside ensures devices are protected.

Price and conclusion

The Trabasack Curve costs £39.95. The Connect version is slightly more, £44.95. I thought this was expensive for a tray and expensive for a bag. I brought my first one telling myself I was ridiculous for spending so much money. This review Curve is my 5th Trabasack. This isn’t because they are not long-lasting. My oldest one has just broken after seven years. The thread holding one of the D-Rings together has broken and years of using it outside mean it’s sun-bleached. It is still perfectly usable. I wanted to have more so I could keep one in the car and one on the back of my wheelchair.

If you have or know a child that needs toys etc within easy reach this will facilitate that. A big plus for me is that it’s also more portable and aesthetically pleasing than the trays that Wheelchair Services provide to their clients.

If you struggle to access food whilst eating at unsuitable tables, perhaps you need a flat surface to lean on to read. Maybe, like me, you want a portable table for your electronics. You won’t be disappointed. Please send all comments and questions to inclusivelivingconcepts.

Trabasack Curve Review Read More »

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!

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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.

Interview with Sam from PHB Hunters Read More »

My Suspected Coronavirus Experience

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. 🙂

My Suspected Coronavirus Experience Read More »

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!

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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.

Accessible Rooms: How To Make Them More Accessible Read More »

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.

Access to work? Read More »

Independence with Disability

Independence means choice and control. It means access to the support that is needed to live. According to the Cambridge dictionary independence is: the state of wanting or being able to do things for yourself and make your own decisions without help or influence from other people. I’m not able to physically manage without help from another person but I can still make all my decisons. To be independent I need people there to support me.

Fighting for independence

The OT assessment in December 2019 has changed nothing! Since publishing my last post, my PA had to leave her job due to health reasons. Two days later my Social Worker emailed me to say the Direct Payments Team were enquiring whether my payments should be suspended as I no longer have any carers! This response upset me and demonstrates perfectly what is wrong with the current system. Instead of being offered support to find a PA and therefore, continue my independence, my needs were being questioned!

I explained that I needed the money available to be able to employ replacements, not to mention to pay HMRC. Thankfully, after a few more emails back and forth Social Services decided things could be left as they are.

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

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

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

Independence

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

Pushing my limits

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

Exhausted without the correct support!

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

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

Lazy not disabled

The OT who visited recently seemed convinced that she could teach me to transfer independently, given enough time. Trying to keep calm, I commented that if she could do that, I’d buy her a box of chocolates and happily live my life.

Why do people look and see more ability than is there? Do they see ability or do they just see a care budget they have been told to cut?! I had enough motivation growing up to become self-sufficient if it were possible. People think I’ve just missed a trick, that I actually can do things, I just don’t know-how. Am I alone in this? Stating I’m more able just delays the evitable which may save money in the short term but it may cost more longterm as I cannot function alone.

Upset figure

Disability equipment concepts to increase independence

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

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

Video of a Wheelchair Concept

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

Can you spot the first problem with this concept?

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

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

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

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

Questions figure

Current equipment

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

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

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

These are my ideas of independence, what are yours?

Independence with Disability Read More »

Cerebral Palsy and me

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 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 in transferring 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 take up space. It is also healthier for me to use my muscles and move my body as much as possible.

Cerebral Palsy and me Read More »

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