What is CHARGE syndrome.

I thought I would share about what my syndrome is. CHARGE syndrome is an acronym each letter standing for the part effected. It is a genetic syndrome but is very tricky to get into so I won’t get into that.

C is colabomas of the eye. I have bilateral colabomas of the optic nerves. My vision is 6over 60. I have little depth perception.

H is for heart my heart is ok.

A is artresia I didn’t have this but many have blocked nasal passages and they also have artresia of the oesophegas.

R is retardation of growth development. We use restricted. I have no growth hormones and was on HRT. I am also socially behind those my age but over the years I have improved.

G is genital abnormalities I’m prety good but have no reproductive organs.

E is ears I am profoundly deaf and wear hearing aids.

People with CHARGE have a strong fighting spirit, wicked sence of humour and love the most.

I have friends all over the world and we are a close family.

Life on the NDIS

In 2016 the Australian government announced it would roll out something called the National Disability Insurance Scheme. The NDIS as it is known was meant to help all with a disability access all their needs. It has been very tricky. I went on in September 2017. I had trouble getting started as we had to work out how to spend the money and where. First we had a plan manager contact us. The plan manager organises all of the funds and bills the NDIA. Next we found a support coordinator. Then we had to look at what I use and sort out my supports and services. I attend a lifeskills programme at Northcott 3 days a week, and have since 2006. We also knew I wanted respite there, so my Northcott case manager worked out a budget for that. She also factored in an OT for a wheelchair assessment, outings with a support worker and other things. Once this was done we signed a service agreement. Next we looked at my other respite’s service agreement. We signed that, then we had to work out why I had money for finding a job. We worked out AFFORD, where I work two days a week, require that so we signed their agreement.

It all went ok until we worked out my plan manager was only billing my core supports and not the other sections. We then found out only $12,000 of the $150,000 was being used. After sorting that out we also had problems getting me an afternoon carer and finding a Saturday support worker. Luckily my Roselands lifeskills coordinator helped with the Saturday support. She booked a support worker who has worked with me for 10 years. This was a great help. Mum hired a carer from dad’s nursing home for weekdays to help me with personal care. This worked until the carer stopped showing up.

This funding only lasts for a year at a time so in September this year we had to have another planning meeting. This meeting was canceled 2 times. I was lucky I still had money left, so my Northcott case manager was able to do a temporary agreement. She also made some reports to ensure I got all my services back. The next meeting went well. The planner had worked in the disability sector and knew what she was doing. She worked out the first planner hadn’t worded my disabilities correctly so I was deafblind before CHARGE syndrome. She fixed it by saying that I am deafblind because of my syndrome. She also put a note to indicate I needed a new plan manager.

This funding took a month to come in. I got much less, but mum, working with my case manager and my support coordinator believe I have enough. My lifeskills and respite coordinator has worked hard to make sure not only my needs, but the needs of all my friends at Roselands are met. It can be tricky to juggle, but with the right people on my team I believe I have a great service.

This year I will be swimming one day a week, with an outing on Fridays, and Tuesdays I’m at day program. Monday and Wednesday I’m at AFFORD. I will have respite every second month. I am planning to attend the 2019 CHQRGE syndrome confrence in Dallas, Texas!

I couldn’t of made it this far without my amazing support team. They include my wonderful mum, my coordinator and all her staff at Roselands, other Northcott workers, as well as AFFORD and Estia my other respite service. I’m also thankful to all my friends who have supported and helped me.

Lastly, is the NDIS worth it? Yes, providing you know what you want, what to ask for and how to ask. Often people don’t get what they need because they don’t know how to ask or know they could. There is always room for improvement and I hope to see everyone benefit one day soon.