NDIS has contacted me again. The plan is due for renewal. They left messages about a week ago asking me to make appointments to meet in their office in Gosford. Gosford is a big trip for me and it is unlikely I will be clear-headed after making such a trip. I sent them an email explaining the situation and asking for some change. They sent a return offering to come here. They asked Accuro to be present but as I told them in the return email Accuro doesn’t have support coordination. I wait for their reply. It will be good if they come here and we can nut out a plan.
The twelve months were difficult. When I was told the plan had to be renewed I went about trying to get some idea of what was available. Nobody was helping me although any of the carer organizations would sign my contract up if I committed the whole budget and the support management to them.
After a month of searching I wasn’t getting anywhere. The anxiety mixed with physical limitations was making it impossible to move forward so I contacted the company I had used previously to sign up. Their boss told me they didn’t want to sign me. They didn’t give a reason. They never do here. You would think the book on professional behaviour just passes by anyone who thinks their client is beneath proper protocol and respect.
The second group I actually looked at signing was one from Erina. There were a number of local companies who all sounded excellent but I wasn’t getting the feedback I could use to decide so I went with the company with the biggest brochure. Their reps. A man and a woman came over and spent some time here talking to me. I couldn’t put my finger on it but I was hearing a lot of warning bells. They walked out the door with the plan so they could write up a contact. Once they had left I felt even more uncomfortable. A lot of the things I heard hidden among their pitch seemed to tell me they thought they knew what I needed and would do what they wanted. The alarm bells were clanging and I imagined a whole year stuck with people who would tell me what I needed while I tried to get them to give me what I wanted. I called and asked them to send the contract back.
After a couple days I rang their support coordinator boss type guy to see where the copy of the plan was. He told me he had driven along the fence of the apartments and just stuck it in the first mailbox he found. At some point he realized he would get in trouble so he tried to blame it on office staff but they refused to back him up. I didn’t care too much. I have been dealing with resentful assholes most of my life. I called NDIS and asked for a copy. They wanted me to make a full report but I didn’t. It was probably a mistake. It is one I keep making. Some part of where I come from revolves around respect and stuff and you don’t tattle.
The guy rang me back a day or so later. Like a lot of bullies he had not expected me to go to NDIS. When he found out I had he told me it had all been mistaken and he still had the plan. He expected me to do the kind of spiteful tattling he would have done and was really worried but I didn’t have the conversation. I just told him to f*** off.
I was quite a few months into the twelve months of the plan. I needed to see my doctor, visit a neuropsychiatrist (or something like that) and psychologist as well as actually talk to another human. The anxiety means I stay alone most of the time and part of the service is to socialize with me so I am not so crazy lonely. I also needed that chair and I wanted to cut the part of the package including support coordination and get the budget signed to me personally.
My next mistake was to remember Aged Disability Support Services. They had looked after me prior to NDIS being born. They had talked to me over months and slowly worked a complete picture of where I needed assistance. It was their doing allowing me to build myself back to being an exhibiting artist and photographer despite being so ill I teetered on dying. They discovered I was in pain when I sat or lay down and found me soft chairs and a bed frame while my nephew transported a mattress all the way from the country. All this was necessary because the chemicals in most new things add another level of illness for me and we hadn’t been able to find a mattress without it.
The new support coordinator from ADSSI was a lovely woman but her role was much diminished from what I had experienced with ADSSI case managers and carers when it was an NGO. I spoke to her of a few things and I think I asked to sign up with her. I sent her an email asking about things. After I hadn’t heard from her for a month I rang and she had done nothing. She was the slackest person I have yet experienced among carers. I sacked her.
There appeared to be no way I could even get information on how to access services everyone was building as many contracts as possible and protecting their jobs by keeping it all to themselves. At that level it is not about caring it is a corporate dogfight much like banking or finance. I needed carers.
Accuro had been another organization I found gave excellent service back in the days of ADSSI case management so I rang them. They took over my contract without support coordination as they don’t have it. They transported me and they had workers socialize with me. At least I had some help and Accuro are outstanding withing their limited functions. I sent a request for the chair to assist my damaged spine to NDIS main office as well as a request to formally change the plan. That was six months ago. I just heard from them last week.
I would be lying if I was to suggest I am not deeply concerned. If the NDIS go following all the leads of the people I tried to get support from I will be painted as some kind of bad guy. It has happened ever since I came up the coast. Always some malicious back story allowing people to justify sabotaging everything but it never gets told to me so I flounder about blind. Anyway the story is unfinished. They have not replied with an appointment time. To date their staff have been really kind and compassionate when they have been around
NDIS have been back in contact. They have only three days over the next month or so where they can have an appointment and then I guess I lose my support plan. They have also demanded I have someone to assist me through the review process. After reading the rest of the post is it likely there is anyone who has a clue what is going on with my plan? I wonder if access to future services revolves around me having some person. I have tried for two years now and have no one who even has a basic idea and I am certainly not allowing those support coordinators to talk on my behalf.
I thought I was able to manage this myself. I might be about to lose all my support because I cannot find a person I can trust. Gee.