I therefore responded extremely favourably to hearing the short break funding / respite care news but getting my hands on it proved far more trying than I had anticipated. I left numerous messages over a 4 month period with various Council offices to find out who my Inclusion Officer is but received no call-back or help. And every professional I asked (unrelated to inclusion work) all gave me the numbers I’d been trying. I then attended a play session for families with children with additional needs of any kind and who should turn up, but my local Inclusion Officer, Pam, to talk about Short Break Funding! She had been off long-term sick with some hideously debilitating bug she couldn’t shift, was completely unimpressed that nobody had responded to my phone-calls and emails, but was now back up and running and got straight down to business.
A week later Pam, Dee (Portage Home Visitor) and I met to discuss mine and Sophia’s needs. The Inclusion Officer works closely with the Portage Team when the child involved is pre-school age. Pam contacted the appropriate support professionals who were able to back up Sophia’s history, filled in the forms, sent them off and within a month of our first meeting I found out I was eligible for the funding. I was awarded the maximum amount for 16 sessions at 4 hours per session. Fantastic stuff. But then the real difficulties arose – who to get to look after Sophia?
There seems to be only one agency in our area that deals with specialist hourly care for disabled children so they were the obvious choice. A couple of weeks after hearing about my eligibility for the funding, I met with one of the managers of the agency, Hands That Help, to discuss Sophia’s requirements for care. It was absolutely essential to me that the person / people responsible for her care should continue with her play exercises and thus enhance her development. I did not want someone who would simply take her for a walk in her pram and feed and change her at the appropriate times. They would have to do messy play with her in her standing frame, physio exercises, visual stimulation, crawl track work etc. etc.. This would mean that I would need to be with them for a couple of sessions to ensure that they were fully trained as to what to do. Obviously I appreciate the care itself isn’t rocket science, but picking up on Sophia’s nuances can be difficult when not used to dealing with her. The lady manager seemed very in-tune with these requirements and promised to find the most appropriate person possible who could also fit in with Sophia’s limited timeslot of availability due to therapy appointments and play sessions.
I was delighted when she rang just a few days later to organise the first meeting with the prospective carer, until, after a few minutes of speaking I realised we weren’t on the same wave-length. She asked me if I wanted to start the respite as soon as possible, to which of course I replied “Yes”. She then told me that I’d meet one person and then in a couple of weeks another who would then become the main carer with the first person I met as back-up. Now I’d already said that I’d want two sessions to train the person so that they knew exactly what to do with Sophia during the time I’m out so that no moment is wasted for her. Plus, I want to be sure that it’s the right person for her, etc.. So meeting one person and then another two weeks later who was then going to be the main carer didn’t make any sense to me. If this ‘other’ person was going to be Sophia’s main carer, and due to the fact that I only had enough money for 16 sessions, I wasn’t concerned if they were ill and we had to cancel a week or two, we could simply tag these cancelled sessions onto the end and therefore have one single carer doing everything in order not to confuse or upset Sophia. Surely, therefore, it was a better use of resources to wait until the main carer was available otherwise I’d be paying for 4 sessions for training alone, which was a ¼ of my funding (and this could be the only funding I’m entitled to as there was no guarantee I’d receive another tranche or that the funding itself would be offered to anyone in the future with increased financial cuts etc. due to the economic climate).
The manager did not understand where I was coming from and insisted I had a back-up Carer but agreed to me meeting the first Carer the following week on our allotted day/weekly time slot and then maybe meet the other Carer the week after and that I could see the two of them together then. Hmm, that would still result in 3 lots of training but I would eventually get to have respite and beggars can’t be choosers.
Of course there was a hold up meeting with the first (back-up) Carer as Sophia wasn’t well, then the Carer herself was poorly so we ended up meeting with the Carer who was to be Sophia’s main Carer first, after-all. She was absolutely lovely, a mum herself to twins, totally understanding of my expectations and supportive as to why I deemed the constant stimulation necessary. I felt incredibly positive about leaving Sophia with her. We did the home stimulation stuff on the first session and I booked the sensory room at our local Children’s Centre for the second session as I thought that would be a lovely thing for her and Sophia to do together with their time.
Through all the waits over the past few months I had kept holding onto the thoughts of regular mental time out – I hadn’t realised just how desperate I was for it. I adore Sophia but my head wants to burst some days and the only thing that really works as a mental release for me is exercise, particularly cycling. I can enjoy a momentary mental break reading a book in the bath late at night or when I go to choir practice etc. but real release and rejuvenation is my bike or a swim if the cycling’s not an option. And I couldn’t wait to get out. Plus the physiotherapist I saw post Sophia’s birth had instructed me to cycle or swim as therapy for my hips, neither of which had happened yet.
Then a week later the woman from the care agency rang to say that they had decided that the Carer I met with couldn’t continue as Sophia’s care provider for a variety of reasons, all of which were totally feasible, but incredibly annoying as they were reasons that were in place before her original visit so they should have realised that she wasn’t the appropriate person to provide the care in the first place and not wasted our time. They had found another excellent person for me to meet but she couldn’t come for another couple of weeks, which meant that, with that person’s two weeks training now leading into the Christmas period whereupon we had too many plans to have any actual respite sessions during the holidays, it would then be a further 3 weeks before Sophia saw that person again and we’d have to reintroduce them to her to ensure she wasn’t upset at being left as she was deeply uncomfortable being left with strangers and couldn’t remember people from one week to the next if not on an ongoing basis. This would then involve more training sessions of sorts, or at least Sophia acclimatisation sessions with the new person, therefore it would be best that I delay the introduction sessions with this new person until after Christmas which would now mean I wouldn’t get my time out until towards the end of January. It was incredibly exasperating having the carrot dangled and the stick pulled constantly.
Additionally, which I was disgusted about, my funding still had to pay for the first session of training, even though it was with the wrong person. Uh? If a company makes a mistake that the client isn’t responsible for, why on earth should the client be charged? What was that all about? To say I wasn’t happy was an understatement but I wanted the respite so voiced my complaint very calmly and kept my real annoyance to myself.
Then, when I was supporting the Early Years Parents Workshop as the Parent Helper, one of the Portage Home Visitors running the crèche said that Portage workers have also acted as Carers in the past and maybe my portage worker could. Eureka!!! Dee could be Sophia’s carer. What a fabulous idea. Dee knows all Sophia’s therapy targets (having set half of them herself and worked on the others with her Physio and OT), she’s fantastic with her, incredibly experienced having been both a paediatric nurse and a teacher in her previous jobs and is a truly lovely person to boot. There couldn’t be a better solution. I just had to convince Dee…
Me: “Dee, would you like to be Sophia’s Care Worker?”
Done deal. Or so we thought.
I then had to contact my Inclusion Officer to notify her that I didn’t want to use the Agency and give her my reasons. Gulp, not a telephone conversation I was looking forward to. Thankfully I was able to leave a rather garbled message on her answerphone as she was out on a family visit, and then emailed her exactly what the situation was.
A couple of days later I was concerned that I still hadn’t heard from her and didn’t want there to be any bad feeling and so rang her again and left another apologetic message. Just as I hung up the phone, the manager from the agency rang to apologise for messing me around. I did say I was extremely disappointed and mentioned again that I thought it wrong that I should be expected to pay for the initial introductory session. She said she’d spoken to her colleague and agreed I wouldn’t be charged for the time used to date – so that’s good. I think she was hoping that would sweeten the situation and she didn’t sound at all pleased when I then went on to explain about finding out that our Portage Home Visitor could take on the roll and that I felt that that was the most appropriate way forward for Sophia etc. and that I’d like to explore that avenue further before committing to using the agency. I then tried to sweeten the blow leaving it that I would contact her immediately should there be a problem with this arrangement as I had complete faith in her company and its Carers. I very much wanted to leave our dealings on an upbeat, positive note as I might need Hands That Help in the future. What is it they say? Be careful not to tread on people’s toes on the way up, you never know when you might need to do some serious feet kissing on the way down.
Sophia’s Inclusion Officer, bless her, broke into her weekend to meet with me to give me the latest update on the funding situation. Infuriatingly, we could not pay Dee direct through the Council, even though she is a council employee, because her contract is not as a Support Worker and it’s too difficult for an addendum to be included on her current contract as Portage Home Visitor to state that she can also work as a Support Worker, because she isn’t trained as a Support Worker. (She has far more qualifications and experience than a Support Worker, how infuriating.) We therefore had to find another way to pay her. Pam initially thought it could go through Barnados, the children’s charity, as many carers come through them, but the Council have changed their policy on this just recently so it looked like Dee would have to register as a Support Worker herself, pay for the various insurances she requires etc. etc. which all sounds very time consuming and expensive for 4 hours a week for just 16 weeks and I very much didn’t want to put her off working with Sophia so didn’t want to make any extra demands on her time or finances. We had to come up with another plan.
It is ridiculous to me that the Council are prepared to pay a private setting (nursery etc.) with little to no hands on experience of a child like Sophia, or a Support Worker who could be an 18 year old, just out of college, with little or no experience of a child like Sophia, or pay exorbitant agency fees (which are more than twice the amount received by the care giver), but aren’t prepared to pay a highly skilled and incredibly willing individual, direct. Crackpots! I absolutely want the best professional care for my child and her Portage Home Visitor is the best care she can get. She understands her developmental needs and can tailor all her activities towards meeting her physio, OT, Sensory and Portage targets.
Thankfully I left Hands That Help on an amicable note as it transpires that the only way Dee can be employed as Sophia’s respite carer is through an agency. They agreed to take her onto their books to work solely as Sophia’s carer. It took a ridiculous amount of paperwork and officialdom to organise, some at Dee’s expense as they made her pay for her own CRB check, and it bugs the living daylights out of me that the agency still take their whacking 50% cut when I brought Dee to them. But finally, on January 5th, 9 months after first hearing about Short Break Funding, I got my break. Dee and Sophia had a great time and I went on a bike ride in the rain, grinning away like an errant child, then had coffee with a friend – 2 very simple things, but things I could happily get used to this year. The cleaning will have to wait for another time!