Every disabled person knows having a disability comes with its challenges; accessing public transport, accessing shops and restaurants, receiving education support, securing employment, making friendships and relationships plus much more.
For me, the most frustrating thing is relying on other people for assistance. I require 24-hour care which supports me with personal care, housekeeping duties, admin support and support attending social events.
My two favourite things to do in the world are visiting friends and attending live music events. Without these activities, I feel isolated, lonely and trapped. But to be able to enjoy these things, I need someone to accompany me. I cannot drive a car, I struggle to control my wheelchair independently in public places and need help with other tasks including taking my coat off, cutting up food and holding drinks.
However, being able to enjoy these events has become more difficult due to the lack of carers willing to accompany me. Over the last 18 months, I’ve gone through numerous carers and several care companies. Some carers don’t have a driving license, some have no experience driving a manual vehicle and some just aren’t happy driving long distances or in cities. I understand some people can be nervous drivers or have not had much experience driving in unfamiliar locations. But I feel my life is being put on hold because nobody is available to take me. I feel embarrassed and let friends down when I have to cancel an event all because I don’t have a carer willing to take me.
Personally, I feel I’m quite flexible with my carers. I give them breaks, time to themselves, free food and accommodation and plenty of time to rest. All I ask in return is they accompany me to social events. I’m not expecting them to do this every day but on a fortnightly or monthly basis.
I do try and use trains when available but many journeys have several changes and may take longer than driving. Also if I’m attending an evening event, there is no guarantee I could get the last train home. Plus I have been given a Motability vehicle so I can travel freely and not just admire the vehicle in the driveway.
Moreover, many of my friends are also disabled, some with life-limiting conditions. Therefore I want to make every day count and spend as much time with them as possible.
I have raised concerns with my current care company that the carer they have currently provided me is refusing to support me with social events even though I made it clear at my assessment I attend gigs and festivals. I’ve asked them to start searching for somebody willing to support me in all aspects of my life.
If you, or someone you know, would be interested in supporting me and have a keen interest in travelling and live music, please feel free to get in contact with me.
Have you got a disability and experienced similar issues with carers. I would love to hear your stories.
Yes literally done all that but either the ones I do hire don’t work out or I offer them the job and they turn it down. I went back to agency because I don’t like having the full responsibility of being an employer. I’m a journalism graduate, not a care manager! Lol 🙂
Do you have Direct Payments/Self-Directed Support? I employ my own people (or they are self-employed, I don’t mind) I know how frustrating agency assistance is, there’s another way. Contact social work or an independent living centre,
I do have DP and used both agency and private but its the quality of the care that’s difficult. They arrive giving me false hope that they are willing to support me only to discover they’re unsafe drivers, lazy and/or selfish!
What’s your interview like for the private workers? Do you have a job description and does someone sit in on interviews to help you weed out the assholes? You can specify the need for a driver, agency or not. If it’s an agency, complain until they send you a human being.