Managing everything on the NDIS can be hard. This is why we opted to use a support coordinator. A support coordinator looks at the plan and over sees how it is all running. They help organise different supports depending on the plan and can provide you with different options to help meet goals.
In 2017 I was given a nice support coordinator through the benevolent society. She was a lovely lady but not very organised. I feel they have to many clients at times and she just left it to mum and my coordinator at lifeskills who is great but she can’t controll everything.
After a year she left and they did not replace her for about 11 months. My plan was over seen by my Northcott EAP and Life skills coordinator with mum. Luckily we didn’t have any problems other than a few budget questions which the Northcott team sorted easily. A few weeks before my last review we got a call from a new lady who we met on the day of my meeting. This poor lady was thrown into the team like 2 hours before and had to learn everything in a short time. She was asked by the NDIA why she had just turned up and she said the company never told her she was needed and we hadn’t chased them up.
This lady left after a few months and last week we got an email from a new lady who seems much better. In a week she has already spoken to my plan manager, Northcott and AFFORD where I work. She wants to follow closely and I am hoping she will help with the house and my new chair.
To me a support coordinator needs to be able to keep in contact with the client and follow the service agreement. It is also up to client , their family or carers to follow things up if they feel they aren’t getting what they signed up for. Even if the worker has left the company would have a manager you can contact to ask where the new person is. Sometimes we need to keep on top of people so we don’t get forgotten about.
When you use multiple services as I and many of my friends do it helps to have someonre there. While for example my Life skills managers can see how much I have with her she doesn’t know about the rest of my plan. So the coordinator is good for that.
It is time to start looking at getting a new wheelchair as this one is falling apart. I use a chair because i have no sence of balance and get tired easily walking.
I got my first chair at about 6 years old before that I had a stroller. my first chair was bright fluro yellow and i had this till i was 11. Then i got a red chair that worked very well untill I was qbout 23. I then got a chair that broke after 3 months. After this I got my chair I have now. It is purple and green.
I use a walker more now i used to have an old standard blue one wich became hard to use. I then got a bulky silver one which was no good at all. So now i have a small black one that is much lighter and easier to use. To get my walker I had a physiotherapist assessment For my chair I will need an OT report.
We are hoping to get a smart drive which will make it easier for me and others to push me. The drive can attach to the chair but can be easily removed when not needed. I want a blue chair this time and will need a removable headreast as Northcott requires one when travelling in the van.
Hopefully my new chair will give me more independence and I wont have to rely on people to push as much. My vision can make it hard to see where I am going and I get tired when pushing.
This week is feeding tube awareness week. A feeding tube is a tube insterted into the gastrointestinal area for feeding. Most people with CHARGE have a tube for at least the first few years while others like me will have it all their life.
People usualy get a tube because they can not tollerate food orally for some reason. There are different types of tubes. I have a gastrostomy which I think is the most common. I had my tube inserted at 8 weeks and at 2, I got a jejunostomy where the tube is placed in the jejunal track. I had a bag with it to protect my skin from leakages and the gastrostomy drained. I was fed like this up untill I was 12 and then things stopped working and they had to put in a central line and give me IV nutrition. At 17 they were able to have me feed through gastrostomy and when I was 20 they were able to surgically close the jejunostomy site.
Some people also use nasal gastric tubes as a baby wich is the same thing but the tube goes into the nostril. A tube can also go in via the mouth which is not as common.
There are many different types of tubes. Some need to be surgically inserted and changed, while others are quite simple. Most people will get a tube that looks like a small button and this is easy to change. I have a tube that is clear and hangs out. I connect my feeding line to this and have my formula for up to 12 hours a day.
There are two ways people are fed. They can be fed via gravity using a syringe or through a feeding pump at a set rate. I am fed through the pump because I can’t handle too much volume too fast.
There are also many different formulas and I think I have tried most out there. There are three main companies I know of that supply the feeds and each one packages it differently. It can come in a can, bottles or a bag. I have nutrison which comes in a litre bag. Some people even make their own blends using every day foodstuffs like veggies and meat. Some companies even pre-make the blends so you don’t have to make it.
I am grateful for my tube. Without it, I would not be here today, but some days I wish I could get rid of it. That is not possible though as I have many food intolerances and other issues. But one day there might be something out there that will help. That is my wish.
February is heart awareness month. Some people associate it with Valentines day but people with CHARGE syndrome and some other disabilities it relates to congenital heart defects.
I am lucky my heart is normal but many CHARGERS have heart problems. I did have a murmur when I was little and when i am unwell or haven’t had anything to eat my blood pressure drops but will come back up quickly.
Heart defects can vary from a hole to big problems with arteries or veins also some can even have bits missing. My veins are bad just because I’ve had so many lines and needles over the years.
When i was about 14 or 15 doctors had to insert a line directly into my heart where I received IV nutrition until I was 17. When I was 17 I got a fungal infection in the line and needed massive antibiotics to make sure my heart was ok. They removed the line and everything was back to normal.
I am lucky but many are not so lucky and require many surgeries and some even die. It can be hard for these families but I love seeing how they come through all their problems. They are very inspiting
I follow many CHD families on facebook and Instagram. Most of them have CHARGE. I love all of my CHARGE community. Everyone is so supportive no matter what. Everyone shares the same emotions and feelings and there is so much love. Last years conference theme was deep in the heart of CHARGE and to me that was fitting because deep in the heart you will find your community of people that get it. I love how people come together even when you have never met face to face and it is like an instant family reunion of people from all walks of life and places.
So this month like always I will keep my CHARGE families in my heart.