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WDYT? Disability in these times
14 replies to this topic
Posted 10 April 2020 - 08:13 PM
I see lots of posts here saying that COVID 19 is a matter of life and death so stay at home.
But what about the needs of people with other chronic illnesses and disabilities during this time?
Should they suck it up and deal with lack of support during this time because it's not a matter of life or death? What if it's just a matter of their condition deteriorating?
I have a disability. My condition means that in order for me to avoid significant deterioration to the point where I can't stand, my brain doesn't function properly, my gut doesn't function properly etc. and therefore am no longer able to parent, I need to be able to rest. I need to have respite from my children. In regular life, that means I have a support system where family, friends and school are able to give me that respite. Those have now all gone. None of the legal guidelines available to me (VIC) are viable options because I'm not leaving the house. And I'm not allowed to leave the house.
Posted 10 April 2020 - 08:23 PM
Could family and friends give you respite by coming to you and caring in home or by collecting the kids and going to their house? I know VIC are strict but in NSW caring is allowed, even in your own (not the kids') home. Not because of you being essential worker but caring for you by caring for them? Is there a social worker or support person who could approach the police on your behalf and check?
Posted 10 April 2020 - 08:26 PM
Wouldn't someone coming to you to provide 'care and support' to you by minding the kids be a reasonable excuse for them to be out of their home?
If you scroll you can pick up and drop off kids in a respite situation. Surely with your disability friends and family can do this and this would be the reasonable excuse for then to be out?
Assuming of course you have available and willing friends and family.
Edited by Mollyksy, 10 April 2020 - 08:32 PM.
Posted 10 April 2020 - 08:28 PM
I'm sorry to hear how much negative impact this situation has had on you.
I've been wondering how people with in home supports where coping.
No you shouldn't suck it up. Not at all.
I'm in Vic, I think that maybe you are a parent who needs to send their children to school, starting from next Wednesday.
A friend or family member can visit to help with caring, babysitting, child minding. It's it's allowed afaik.
Do you feel confident to be assertive with the school and communicate your needs?
If you don't feel up to talking to the school, can someone help you?
I work in a hospital, I want people to stay home in general but there are exemptions, there has to be and I'd encourage you to seek support from the school.
I think you need special consideration. x
Posted 10 April 2020 - 08:47 PM
Disability is an essential service, so those service providers still need to be doing something!
Posted 10 April 2020 - 09:06 PM
Thanks for your responses.
I guess I'm just feeling like I should suck it up? I don't have access to disability services because I have a husband and he earns enough to support us.
I feel like because he has a job and is in the home that that should be enough. But it's not. Because it's the kids being in the home that makes it impossible to rest appropriately.
We've already spoken to the school. While they're usually supportive, it's not a viable option. The school has clearly said they will not provide any assistance to the students, they will be maintaining 1.5m and they need to learn independently. My youngest is 5 in FYOS. He can't do that.
Family in the state are only grandparents (not allowed). Friends are a possibility but I feel really uncomfortable asking because again, I don't feel like I'm deserving enough or that my friends should have to potentially risk themselves for me.
Posted 10 April 2020 - 09:21 PM
You can access school for your children, they would be deemed at risk due to your health concerns/disability. We have friends with health conditions which necessitate rest (MS and RA) and they are able to access school. If your school have denied this contact your local MP ASAP.
Another option is a respite carer, do you have NDIS? Perhaps you could seek funding, again, you would most likely be approved. Claims are being approved at record speed at the moment.
Hope you can find a solution. Do you have a friend or family member who can help advocate? I know sometimes in these stressful times it can be hard to find the energy to fight for that which we are entitled, someone may be able to help lessen that burden for you.
Posted 10 April 2020 - 09:26 PM
Chicken bits, I’m finding it hard too. I hadn’t quite realised how carefully balanced my life was - I can cope thanks to the time I get from school and daycare to rest/do things at my own pace. I can’t really send the kids to school/daycare as I’m at greater risk of severe disease if I contract it thanks to my medication. So I’m sucking it up, which sucks. I’m just extremely lucky that a medication adjustment 6 weeks ago has massively reduced my pain.
No help, just understanding.
Posted 10 April 2020 - 10:13 PM
In NDIS speak, your informal supports (unpaid ones) are no longer viable. NDIS is not means tested. DH income not relevant.
You clearly need paid supports. Ie a carer to get kids out of your hair. NDIS needs to fund that. As ‘assistance with daily activities of living’, for you. They won’t fund ‘childcare’ (*that I know of). They will fund a carer for you that helps you do daily mum stuff. That person helps you get kids breakfast and off to school etc etc on paper. In the real world, they mostly just do it and you do kid cuddles.
You are absolutely legal to have a carer at your house, paid or unpaid (but I agree not to risk grandparents too). Would you feel better about the situation with a letter from your Dr stating you need in home assistance with ‘activities of daily living’ that you (or the person caring) could show police if queried? Even a letter by you, for the carer to carry, would likely be enough if queried by police during Stage 3.
School needs to suck it up too. Is it possible school is pushing the line that they are ‘just supervision’ to prevent people sending kids because they’ll learn better in school?
And if they really won’t be supervised with online work, what are they doing with the Drs and nurses kids? It’s very clear in Vic you should be able to access what the essential workers can access with respect to schools. The question there is, if you were a medical professional rather than having a chronic condition, would DH stay at home to do online with kids, or still go to work (or be trying to work from home)?
I’m in Vic and my kids have additional needs. Our carer is still coming in for usual times.
Edit silly autocorrect 😛
Edited by Chaotic Pogo, 10 April 2020 - 10:31 PM.
Posted 10 April 2020 - 10:19 PM
Would someone taking your kids out for a walk, to kick a ball, to run around, for a couple of hours every day or two help you to get a rest? Can someone do this for you? They wouldn't have to come into the house, although I guess it's more difficult if the weather isn't good. Or could you have someone in to supervise them doing school work for a couple of hours while you rested? Or is that not sufficient, and you really need them out for a bit? School should take them at least some days a week, they have to take FYOS children, they can't say everyone has to be independent. I'm sure there are health workers with children in Prep.
Posted 10 April 2020 - 10:39 PM
The NDIS is not means tested so as long as your condition is considered to be a disability and not medical, then as your informal supports can no longer support you, it's worth applying to see what support you can get.
Posted 11 April 2020 - 03:26 AM
If you and the kids have been strictly isolated and the grandparents have been isolating couldn't they still go to the grandparents (unless there's a different rule because of different locations).
One of my friends is a part time nurse. She attempted keeping her child home the days she was home but ended up sending her daughter to school each day because she couldn't physically cope without any downtime.
Posted 11 April 2020 - 05:36 AM
My son has autism and I’m a single mum. I’m not coping and he’s not coping. Next week he’s going back to his special needs school.
Edited by bubskitkat, 11 April 2020 - 05:36 AM.
Posted 11 April 2020 - 06:43 AM
Chicken_bits, I am sorry you are suffering and that widely published guidelines don't seem to take you into account.
Your health does matter, so if you can come up with a solution it will be acceptable in the eyes of the law, because you are a vulnerable person with care needs
NDIS is one option, but if you are not already a participant, it will take time. Local councils or sometimes state governments have services to provide some home help at subsidized or free rates for people with illnesses or disability who don't qualify for NDIS. If your household can afford it you could pay someone a couple of hours a day to come to your home (there are lots of unemployed childcare workers). Or it may be fine to call on friends and family. If you feel stuck I would contact a local disability organization to see if they can help you find a solution.
Posted 11 April 2020 - 04:35 PM
Thinking of you chicken_bits, I hope you get the help you need during this horrendous thing.
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