Two steps forward..one step back..

Before 1970 there was barely any recognition of the rights of disabled people and more often than not they were institutionalised.  In 1970 the Chronically Sick and Disabled Persons Act was passed, whereby further provision had to be made with respect to the welfare of disabled people. Over the years more acts have been passed and more recently the Equality Act was passed in 2010, to protect disabled people and prevent disability discrimination. I feel fortunate that we are living in the present where such laws have been passed. Having said that even though these laws have been passed they are certainly not being fulfilled as they should be. I have mentioned in numerous posts about how we have to fight and battle to get what Isabella needs and we are not alone in this.

Provisions are made for disabled people and children and specialist equipment is available but the process of receiving provision or equipment is a lengthy and tiring one. Information is not readily available and the service we receive is generally poor.

On the advise of Isabella’s Physio I wrote an article expressing my view of the system from a Parent’s perspective see <life-on-the-other-side>. This has since been handed out to all the professionals that deal with Isabella and surprisingly was received very well. So much so that a TAC (Team Around the Child) meeting was called by Isabella’s Physio. This was something I had never heard of and had never been offered previously needless to say a date was set and information on the TAC was posted it to me.

On reading the literature that was sent to me it became apparent that the professionals had realised that they were not doing their jobs aswell as they could be, as a TAC meeting is where the professionals that work with your child and parents meet to look at ways in which the agencies can better support your child.

Isabella’s physio chaired the meeting as she is the CAF  co-ordinator. She opened the meeting by apologising that this hadn’t been done sooner, as she had the role of co-ordinator for sometime. This shocked me, as I had thought it was a new concept and that it was a coincidence that it had emerged around the time of my article being submitted. To be fair to her though she had printed a copy of my article off and highlighted the areas she thought were important and wanted me to expand on.

To begin with I felt slightly awkward with the situation, the fact I had four professionals (Speech and Language Therapist, occupational Therapist, Physio and Advisory Teacher )all staring at me waiting for me to begin. So I did. Using the print out I talked about the issues I felt needed addressing. I was tactful and didn’t point the finger directly at any professional, but I wasn’t going to waste this opportunity in making myself heard.

I started on the topic of equipment and stressed how the wait time for equipment is unacceptable. Isabella’s occupational Therapist acknowledged the wait was a long one but went onto explain the process. In short she explained that they start on the lowest level of equipment and if it is not suitable they then have to justify why they need to move up to the next level and so it goes until the suitable option is decided. She said on occasion her boss will look at the equipment she has decided on and if she feels it is not suitable she needs to explain the reasoning and justifications again to her boss in a meeting. All the while that these justifications are being made our children are waiting around for the equipment they so desperately need. It then isn’t as simple as going to the company direct for the equipment they have a specialist company they order from and this is where the wait can be extremely long. She then went onto to mention that the Wheelchair Service worked the same way. It shocked and frustrated me to think that once again it all came down to money, but then it did explain why initially at Isabella’s Wheelchair Assessment we were told to buy a regular buggy from the high street! See <So tell me what is it you do?>

I went on to talk about the lack of information that was available to me when Isabella first was diagnosed with probable Cerebral Palsy, such as suitable baby slings and specialist bike seats. They pointed out that equipment is always changing and there is always something new coming out and that they can’t keep up – yet they weren’t able to give me any advice at all.  I do think there is a huge gap in the market for equipment outside of the home, as well as inside and I certainly don’t think that the market is changing constantly that you cannot keep up. I suggested to them that it might be useful for them to keep a folder – ‘Resource Directory’, where they can add recommendations made by parents to pass onto other parents. For example we struggled when feeding Isabella, as she couldn’t sit unaided and regular high chairs couldn’t do the job. We found the Safety First Booster Seat and Rainforest High chair real lifesavers and still today make feeding Isabella a breeze. Having this information in the early days would have made life much easier.

As the meeting went on it became apparent that neither professional knew what the other did with respect to Isabella’s therapy, yet all of their input with Isabella overlaps in some way. I sat there listening to what they had to say, but was still in total disbelief that this hadn’t been done before. I bought this up as a topic of conversation and Isabella’s Physio said that she would now liaise with the other 3 on a regular basis and write a report that would be forwarded to Isabella’s pediatrician.

Since the meeting I have received Isabella’s HIEP (Home Individual Education Plan) from Isabella’s Advisory Teacher, that details all her targets set by all the professionals she sees. As a bonus tucked inside the envelope I also received a link to a website that carries out searches for special products and trials new items for parents. So may be, just may be I am being listened to? But then I received an e-mail from Isabella’s Physio to say that I won’t be receiving the paper work detailing the notes of the meeting since she had no time to do it! Why doesn’t that surprise me?

I think that the system has a long way to go and currently for every two steps taken forward the system is always taking one step back…here’s hoping that one day the system and the professionals within it will get it right first time….

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4 thoughts on “Two steps forward..one step back..

  1. An excellent blog and highlights the problems not only with Isabella but a lot of children and families. It is a sad state of affairs that both the funding and time for the professionals to do their job is so limited. Sometimes I think there are professionals who genuinely do want to do more for families but they lack the support and funding to do so.
    I agree things are slowly getting better but it does seem at times that things go one step forward and two steps back.
    I do hope that you are getting somewhere and Isabella benefits from having the meeting.

    • Thanks x

      Yeah it can be so difficult and frustrating but we are getting there slowly – usually have to adopt the ‘Do it Yourself approach’ mind. Still onwards and upwards.

  2. Well done babe! You obviously hit a nerv and got some people listening and responding!!! I know that it will be a long and sometimes hard road you be travelling on,but I have all the confidence in you,that you will do your best!!! So please keep on writting and fighting for your geogeous girl our granddaughter Isabella!!! Big hugs and kisses xxxx

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