Most countries have respite care services, whether you’re caring for the elderly or for a sick child.
Some are run by the government, others through charity organisations.
After 2 applications and a meeting Jennifer has been granted respite care in Bergen. We didn’t get a place in an institution as we would have liked, the council will have to find a private carer.
Despite the fact we were told again “Jennifer needs no more care than a normal child of her age”, and despite the fact that others we know have struggled, we were granted one weekend a month, and a yearly review.
There were 2 ladies who came home to meet us and Jennifer, they had, and let it not be under estimated, positively pre-determined how Jennifer was.
They were nice people, but their agenda seemed more to be about downgrading the level of care Jennifer needs than finding a solution to our problem.
When you apply for these services, you have to state everything negative about your child, everything that’s wrong. This despite the fact they had Jennifer’s almost 300 page medical journal with them.
You also need to explain it in a way that everyone can understand….that everyone can relate to.
There’s only one way we know how to do that, and I think that’s what eventually tipped the scales in our favour.
They asked questions, they commended us on moving our family to Bergen, they thought it was fantastic both of us were still working, and they layed down in no uncertain terms how much help we were already getting and the cost of that help.
They stated very clearly “You have the right to an individual plan”, something we were denied in Stord. But they also stated that respite care is not covered by law, like it was a gesture of good will.
They pulled out a checklist, 5 or so questions comparing a “normal” child to Jennifer.
The questions were rated from 1-5 based on the development of the child at a similar age, as I remember they were;
1.Toilet, can the child use the toilet
2.Eating, can the child eat and does he/she do it by themselves
3. Sleep, how is the childs sleep pattern
4. Movement, can the child move inside or outside by themselves
5. Clothing, can the child cloth themselves
There were 2 more questions relating to eye sight and hearing, where obviously Jennifer scored poorly on the eye sight, and top on the hearing. All the others were given middle of the range scores, because compared to a “normal” child of the same age Jennifer was possibly not so bad, after all a “normal” child of 21 months may not eat, walk or at least help cloth themselves….
If this was my “normal” child at 21 months I’d be pretty fucking worried!!!
It wasn’t looking too good at that stage, and the most frustrating thing about having a severely disabled child is that hardly anyone understands you, what you’re going through everyday and just how much care is involved.
We’d had a week to prepare for this meeting, the parents we went on the “Learning to cope” course with have made a FB group, where we catch up, share thoughts and advice etc….
The advice was varying, some had easy meetings, others not so, some had to complain about the initial decision and so on. Most of the children of the parents in that group are very similar, different diagnosis’, but similar levels of care.
“Be honest” they said, “good luck”
I thought about it all week, Odrun and I discussed it, it is after all a game, cat and mouse……
I’d like to think it was our trump card, the one we held until everyone else had put their’s on the table;
“Jennifer maybe almost 2, but in all reality she is a 6 month old baby, and will be in for a long time. She is sick everyday……….
She has a chronic sickness that will only get worse, and she has more problems than me, you and all of our family members have put together….”
The tone changed, the looks became sympathetic and we briefly discussed a private home as possibility for respite care. They left saying we would have an answer within a week, they would sit and discuss with their colleagues if we were to receive respite care.
10 days later the answer came in the mail, the checklist with the ratings of 1-5 had been changed…….
The system has become two-faced, on the one side the government provides Jennifer with therapists, special educators, financial assistance and equipment.
On the other side they provide a power struggle between families trying only to do their best for themselves and their families.
It’s completely unnecessary, if it’s a service you provide, provide it!
Why are services like respite care, financial assistance and equipment grants open to interpretation?
Why is there so much difference between the services granted for these children and their families?
Where are the charity organisations with people like Jennifer’s assistants and therapists who want to help, who thrive on making other people’s lives a little bit easier and have no intention what so ever of making the applicants or receivers of these services feel guilty for just that….?
It’s not surprising that only 40-50 years ago children like Jennifer were taken from their parents and institutionalised.
There was no system in place back then, they had no-one helping them, they had no equipment and they certainly didn’t have any financial assistance.
Those parents fought for what Jennifer and ourselves are getting today, they fought for the right to have their children at home, in schools and kindergartens….. where they should be, where children belong, where they’re loved and where they’re cared for.
In all reality, they built the system we are benefiting from today.
And their advice;
Fight, bitch and complain until they listen……because you need to look after yourselves, not them!