Talk to me about having a disability and gaining independence

[Independenceplease]

NC because I don’t want this to be outing.

I’m posting hoping for some MN wisdom and advice.

I have a life long physical disability(wheelchair user) and I’m an anxious person (CBT helped) I’m in my thirties and still live at home. I have a WFH job that I love and I’m studying for a masters. Until recently I’ve been happy with how my life is but I’ve been yearning for some independence. I guess when I was younger I liked being in my comfort zone. I tend to have these thoughts when I’m not busy.

Living with my parents means I often go along with what they want to do like today they don’t feel like going out so we’re staying in. Whereas being on annual leave I’d like to wake up and do what I fancied. I’d like children one day too but that’s another story.

I have a brother who I do things with but he’s got his wife and his own life. I have a couple of friends but they live around 5 hours away so meet ups have to be planned in advance.

If you have a disability how did you build your independence?

Do I need to employ a carer/PA, start driving lessons? I’ve not had support from occupational services since I was 18.

What works for you?

I have a mix of disabilities frorm birth and some from later age.

I did attempt to get help from social services but they refused to work with me as there was no understanding of my needs.

I moved out and struggled for a few years. I now get help from my mum for a few hours a week. Just things like attending appointments (I have communication and memory difficulties. It's normal for me to walk out of an appointment and not remember what was discussed) and help with housework.

Occupational services might be able to help you with any equipment / adaptations to your house. (mine was already adapted )

Hi there,

I don't know if you are still checking this, but please phone adult social care, ask for a care needs assessment.

The decision on support is made by comparing your care needs with a set of nationally agreed criteria, which all local councils must use.

You will qualify for care and support if:

you have a mental or physical need or you have an illness
you’re unable to achieve two or more of the everyday tasks (or ‘eligibility outcomes’), Google them. These are things like preparing and consuming food and drink, or getting yourself washed and dressed, studying, getting out of the house, studying, being a parent etc.
there’s a significant impact on your wellbeing because you’re not getting the help you need.
If the local council agrees in principle that you qualify for local council care services and support, they’ll usually carry out a financial assessment to see if you have to pay some or all the cost yourself.

Don't feel ASC is just about providing carers for those needing lots of help, their is a spectrum & various routes this support can be provided, like direct payments.

Fight for your independence, it's important, no one should have to be dependent on family if they don't want to. As you've found out, there are limits people's availability. I admit unless you receive 24hour support like me you are still limited in ways a none disabled person is, but it's a start & who knows, you may find you can gain skills & confidence meaning you only need support short term.

Good luck