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What does "support" look like to you? (warning, mildly rambly)

(6 Posts)
BeeMom Tue 05-Feb-13 00:00:12

Fan I am sorry you are having such a rough time - honks to you.

You mention waiting lists - that is one of my biggest frustrations. For respite, Bee's funding has been increased 3 times over the last 5 years, to the point that she is entitled to the max amount. However... this is only on paper - despite that increases, we cannot access these funds for her, as the money is "wait listed". 70% of her funding is inaccessible. We cannot use any of the respite homes in the city as they do not employ nurses, and when Bee is not in our care, she requires nursing supervision. So much for that :/

If you ask the "service providers", they will rattle off a massive list of available services - the reality, however, is that the wait lists are growing ever longer, and the damage done while waiting is irreparable.

On a happy note, I decided to try and find Bee something she wanted to do, so on Wednesday, she will be going to her first Special Olympics gymnastics practice grin

FanFuckingTastic Mon 04-Feb-13 18:58:08

I am just back from the emergency doctors as I am pretty close to the edge with coping right now. Because of my own disability I am aware of the process to get help, so I do have in place a carer of my own already.

I am just about to try to initiate the same support for DD individually to lighten the load, as I need it right now, we are due to become homeless, DS's dad has mentioned thinking I am not fit to care for for him, my chronic pain is bad right now and things are just generally a bit of a nightmare at home.

I did a self referral to the Educational Entitlement Service, which Social Services recommended, awaiting to see if there is any assistance there, and obviously the Paediatrician referral is in progress. I have a CAF running through the school, a Child Action Framework, which takes the whole family's needs and then all the people involved (who actually turn up) can discuss potential solutions and we all leave with ideas of things to do. Hence my DS being on a waiting list with Young Carers and such.

porridgeLover Mon 04-Feb-13 11:36:10

BeeMom it's an excellent question and I have to think hard about what I would snatch from your hands if there was a basket of support going around.
I'd copy some of FFT's suggestions especially

Support is someone here every day to help with the usual meltdowns and let me get washed/dressed/prep a meal/do housework/take a phonecall/visit a friend/have friends visit me.

Support would be some the transition to bedtime which only one of my children can do alone (and she is the youngest)

Support would be another adult to help at homework which is exhausting with 3

Support would be clubs I could take him to without any judgement of behaviour. This X100. (looking at you Scout Group who cant 'manage his behaviour')

Support would be family counselling to help us all deal with the level of disruption we experience and to help us to all understand each other better.

Support would be being believed and not having to explain and defend him all the time .... especially to friends, family, school who should know

Support would be people being accepting of disability and not considering us odd or inferior.

BeeMom Sun 03-Feb-13 21:29:25

We are a "multiply abled" family as well - I can relate to the intertwining of needs among us all (DD is developmentally and physically disabled, ASD and medically fragile, DS has less significant medical issues and ASD, have a spoinal cord imjury, and a milder form of the same disease the children have).

It seems like you have really thought about specifically what supports you could use. Do you have anyone creative in a service provision mode that could help you find a way to fulfill any of these needs?

I can also relate to the "another assessment" fatigue. This week, because of another recent physical regression, Bee's PT decided she needs a walker again, and her OT wants her in a 5 point harness car seat. Lovely declarations, but neither of these are covered - so like so many other of the "recommendations" it may well have to take a back shelf.

FanFuckingTastic Sun 03-Feb-13 21:12:27

Support is someone here every day to help with the usual meltdowns and let me get washed/dressed/sleep. Usually around 4 hours each day, in the morning and evening, I take the overnight shift.

Support would be some respite from the overnight shift so I could go do some normal stuff and actually sleep at night time.

Support would be transport to school.

Support would be a one to one worker to encourage her at school and help her to keep her behaviour from escalating into meltdown.

Support would be ensuring the work she does is relative to her level of learning.

Support would be clubs I could take her without any judgement of behaviour.

Support would be family counselling to help us all deal with the level of disruption we experience and to help us to all understand each other better.

Support would be a budget to spend to enable us to manage all the extra costs.

Support would be being able to access the correct equipment for her well being and safety.

Support would be being believed and not having to explain and defend her all the time.

Support would be a holiday for the family.

Support would be a suitable permanent home we can call our own.

Support would be people being accepting of disability and not considering us odd or inferior.

We are a twice (perhaps thrice) differently abled family as I too have health conditions which I do get a budget towards support for from the council, I am using it mostly to care for my daughter, so am contacting paediatric OT tomorrow to start another assessment this time based on my daughter's abilities, not mine.

BeeMom Sun 03-Feb-13 20:50:27

It seems recently that the issue of adequate support has been rattling through a ton of threads - adequate provision, feeling isolated due to the lack of support, wanting more or different support both in school and home/community...

Because I suspect this question is going to figure massively in the meeting we have regarding Bee in Thursday morning, I have been thinking hard about instead of the "Bee needs more support" or "If you insist on demitting her from this school, adequate support has to be in place at the other school..." I might have more success with objective requests, since "adequate support" is SO subjective.

A friend of mine told me that she could not handle Bee at home and how do I do it with so little support - I feel quite the opposite, and am looking forward to reducing her nursing services, which just underscores how subjective it all is...

So... here is my question. In an ideal world, where money and administrators were not going to be a barrier, based upon your child's needs - what does "support" look like to you?

Is it individualized instruction in a MS classroom?
5 hours assistance at home after school and on the weekends so you can take care of yourself and your other DCs?
Special equipment?
Extra money? What would you do with the extra funds?
Out of home respite?

Let's wave the magic wand and go wild - not only might this help me be more specific with what we need for Bee, I have a feeling it might help up understand each other here.

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