Our care package after many years is finally what I would call “fairly robust”. We have a personal budget for Nate and can use this to fund respite at a local provider and overnight care in the home. It is flexible which in real terms means we can ( in theory) alter the quantities of each type of support as required. Unfortunately the care company has lost staff and currently can’t fill all of his overnights. It had got to the stage where I was feeling a little bit guilty that we have all of this in place and that things were ticking along as smoothly as they can with a complex young man. So the fact our care package hit what can best be described as a snag seemed somewhat fair.
How did we get here?
Accessing any version of support involves assessment. Shitloads of assesment. Carers assessment, core assessment, continuing care assessment. Repeatly answering the same depressing questions with the same depressing answers. The process began when Nate was very small, turned blue a lot, and had many many rides in ambulances. He wasn’t expected to live very long and the constant trips to hospital had us as a family hanging on by the tiniest of threads. Much of that time is a blur. The hospital welfare advisor suggested we call the children with disabilities team at social services and ask to be assessed. After much tactical avoidance ( by not calling me back) a lady arrived at my house, put her cigarette out outside my door, and came in to “assess” us. This lady informed us we couldn’t have any respite or help ( not that I knew the name for it back then) as this could only be provided when he turned 7 or 8. She shrugged when I told her he hasn’t expected to live that long and I was torn between a desire to poke her eyes out and having a good cry. The crying won.
I cried and cried. I cried because I couldn’t cope with constantly monitoring all of his equipment. I cried because I loved him so much. I cried because I felt helpless as I watched his oxygen requirements edge upwards and him struggle to breathe on a regular basis. Eventually I cried at the right people. We were fortunate to have a fantastic local service led by portage which involved play groups, sensory play and Physio led sessions. All of this was just about keeping me sane and it was here I first heard that it was pretty obvious Nate met the criteria to access the local hospice. It was this that marked the first step in getting us the support we needed. Respite at the hospice was a lifeline. Getting to where we are now support wise is long, complicated and fairly novel-esque so this is probably enough information.
Over the last 2 weeks I have read with despair critical comments made by parents of young people and adults both with and without disabilities. The comments were mainly linked to the recent Panorama documentary “Fighting for my child” found here:
https://www.bbc.co.uk/iplayer/episode/b0bc2ch6/panorama-fighting-for-my-child
The comments included “well I’ve never have respite and I’ve managed” or “I wouldn’t let anyone else look after my child” and “it’s the parents’ responsibility why do they think someone else should help them out?” “ why should the grandmother be paid?” Now I know many parents who do a fantastic job looking after their young people who have disabilities without additional support, however they don’t use their personal situation as a way to bash other families. Every child is different. Family dynamics vary hugely. If you don’t need respite that’s great, if you don’t want it that’s fine too. If you’ve been knocked back because of the assessment process or decision making toolkit saying you don’t meet the criteria, technicalities, panel, or a lack of support by professionals doing the assessments I am enraged for you. If your care providers are shit let’s sort the bastards out and stick together 💪🏻 supporting each other on the way.
If you are on your knees with your caring role you will need to muster up the energy to say the right things to the right people to ( hopefully) access anything at all.
One thread on Facebook spiralled into a commentary that families get enough money handed to them and they should fund these things themselves. I’d like to point out DLA is for everyday living expenses and it doesn’t go as far as you think. To put this in perspective Nate’s whole monthly DLA would fund one night and part of a day in his current respite. Panorama went on to show a mother who lost her direct payments she had been using to employ her son’s grandmother. This triggered horror and indignation amongst the masses which demonstrated that the general public has no comprehension of the demands of caring for a complex child and that they seem to think this lady wouldn’t have her own bills to pay and life to fund, instead of horror that a vulnerable family had lost access to their only means of practical support.
Some of these commentators- mainly people unfamiliar with caring for children and young people with complex needs ( and even some that are) went on to pass judgment on the situation below where a sibling has the full responsibility of an adult carer.
*pulls on ranty pants*
You don’t get to dismiss the need for respite and support in one breath then get to criticise families who put huge expectations on siblings in the next. In an ideal world siblings and young carers shouldn’t have that level of caring expected of them ( the article details the extreme end of young caring and I was horrified ). However the reality in this climate of cuts is massively different from the ideal and families survive and function whichever way they can. It’s easy for me to say I wouldn’t put that level of responsibility on my daughter when we have a support package in place. Equally you don’t get to cry over the poor children and their families and then support cuts to local services. Vital respite provision is being cut around the country and many families will suffer as a result.
To come full circle this morning Nate is best described as “pure radge” having not slept a wink last night. He is very dystonic and sweating profusely. IF he does go to sleep today he will need his ventilator and oxygen, if not we can expect gelastic seizures and tonic episodes tonight. “Luckily” the care company sent their senior carer over as a stand in until they have recruited and trained new staff and can actually fulfil the package. Them being in last night is the only reason I can function today. The best way I can describe our caring role is for you to imagine a newborn’s demands, add in loads of meds and equipment, and then them never ever grow out of it.
So yes I let other people look after my child.
Rested Natie
No sleep Natie
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