My name is Kathryn Gilbert

I am 32 years old and live in Cranebrook, NSW. (Western sydney) I have 3 children with autism who have been receiving plans for quite some time now. This year I also applied for the ndis for psychosocial disability as I have PTSD, Bi polar, depression and anxiety. I am also the creator of the group. I was the main carer for my 3 boys as my partner worked. I had one informal support a friend that could watch a child in an emergency. All of my family lives in qld and due to my mental illnesses I had little contact with people outside Facebook.

I called the NDIS in September 2015 and I was told that access request forms would be sent out and I was to get them filled out to my regular gp and then back to your local office as soon as possible.

While I waited for the forms to come out I started to research the NDIS to try and find out as much as I can. I obviously went straight for the NDIS website and tried to navigate it all. To this day the only good thing that the website has been good for is the updated price guide. I did a lot of my research on social media and reading other people’s experiences.

I made an appointment with my local gp when i received the letters not long after the phone call. I can’t remember the wait time but I know I didn’t start to get impatient so it must of been within a reasonable time. The forms where filled out correctly by our family gp. 2 days later I was on the way to the Penrith NDIS office and I actually received a phone call from someone who worked there. She said that she was able to take my application for the boys over the phone if I had time to answer a series of questions. I was then told that the boys would be eligible for services under the NDIS. They said that someone would be in contact with me in the future to organise the planning meeting.

At the time I applied for the NDIS our family had access to a key worker from Lapstone Early Intervention Preschool who stayed up to date on the process with me.

I had a meeting with my support worker from Lapstone once we knew that the next step was the plan, we sat down to go over the boys goals and doing discuss them and what I would say at the meeting. Dude to my mental health illnesses I feel I struggle at times to completely understand something and also I struggle with the right words to say what I want to say. I was quite open and honest with our family support worker about my issues from the beginning so that way she knew exactly what she needed to do in the future and that she knows that I struggle and helps me where needed with extensive support. Discussing the goals we wanted for the boys was a very in depth conversation and I only found out through my key worker from Lapstone how crucial the goals were to the plan making process. To me, and I do understand that I have some learning difficulties but I am an everyday internet user and I have several fb groups I own and admin. No where when I first researched about the NDIS did I read that goal making was a crucial part of the process.

I then received a phone call a week or two after I was told to expect a phone call and the planning meeting was booked for both my boys. Tx this stage I still felt extremely confused because so much was so unknown. There was no clear direct path to the answers for the questions I had. Because it was such a new system and everyone knew so little it actually caused a lot of stress. The more time I spent trying to find answers the more confused I got. The main group that I went to at the beginning I had seen it advertised on a local service providers Facebook page. I would spend ages reading everyone’s posts. Witch didn’t help either because the posts where not monitored by admin at all witch I felt extremely uncomfortable about because in all the groups I was apart of previously that was the admins main role to monitor each post closely to make sure respect and support is the only thing going on. There was a lot of confusion going on in the group. Obviously specific people knew more than all of us because on ones they did choose to comment on it was very official what they wrote. I didn’t like the confusion that the group brought. There was also some abuse that was allowed to happen because the posts would not be removed and there would be all these unnecessary comments. I didn’t like that admin picked and chose who they helped either. I also noticed a lot of important questions going completely unanswered obviously by people who need the help.

I was concerned that there was people without informal support only having the group and their questions getting answered. That Facebook group got shared by almost every disability page I liked on Facebook so it was the place we were told to go looking for answers. I think it was poorly managed given the fact that it would be a resource that many would use on their NDIS journey.

The day of the planning meeting I went into our local Penrith office. My key worker from Lapstone came with me. We are asked to go into details about our home details, our personal situation, I was asked to go into details about what a day in the life of that child looked like. I had worked out the boys goals with the key worker prior to the meeting so it was easy to relay that to the planner. I also wanted to make sure that was able to continue to access the vacation care program that was specifically for children with disabilities, he had been there since the beginning of kindy and it was important that he had the stability. I remember asking some questions but can’t remember exactly what they where but I do know that the planer was happy to answer them.

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It was only a week later that I received a phone call stating that the boys plans where completed. I was given access to information on how to link up the NDS to my mygov account so that we could access the participant portal. The boys where given what I told a standard early intervention package. At the time I just continued to use the supports I was linked in with already. I was lucky that I was already linked up with my main services because I would have had no idea where to look for service providers and I wasn’t told where I would find this information if in fact it was available at all to find online. I found that part confusing I remember having to get back in contact with the planner and ask her where I order the nappies from that got in his plan. Luckily she was able to tell me the name of a well known distributor on the spot. Because I was agency managed the rest of the year was smooth sailing. The boys got to regular attend their required therapies.

The next step for me was in April the following year my youngest also got a diagnosis of Autism. Lapstone Early Intervention was an access partner and we where able to do plan with them. Witch I felt so much better about as they actually know my family and situation and I know they have experiences with children with disabilities whereas with the NDIS planners we have no idea of their history with disabilities if any at all. I met with my support worker from Lapstone to submit the claim for the plan. It was just a matter of answering a serious of questions on the computer. That whole process was much better for me doing that plan. Because of my mental health I get anxious meeting new people and I can stuff up what I’m trying to say because of my anxiety. I was worried at the first meeting with the NDIS planner about my ability to competently advocate for my children. Where as with the key worker we have built a relationship I’ve been able to go to her when problems arise with the kids and she has always been there. It was so much easier answering the questions off to computer talking to my key worker because it was like we where normally just chatting. It was also an extremely fast turn around time for the plan, it only took 2 days and it was a great plan for him. I now had to put into speech and ot now so he could start his crucial Early Intervention and because of how fast the process time was for doing plan was done so fast I was able to get him in quite quickly after diagnosis to start. It was difficult managing having to go out of the house a at least 6 times a week now. Despite how my mental illness made me feel I had to get them to their appointments because what happens in their younger years is what builds the foundation for how well they will be in their adult life. I had a bit of a freak out because I had no idea how I was going to take them to their appointments. At some point the youngest to may of needed to of been watched by someone so I could attend the appointment for the therapy. Once I calmed down a little I remembered that the NDIS can fund for these kind of things I just didn’t know how to go about it. I contacted the planner who I originally had for my boys and explained the situation to her. Because got a diagnosis we where able to do a change of circumstances and both (my youngest two) got funding for community support. Once you go over your first plan it’s not so scary.

However the year review was coming up quickly for my boys and I was slowly starting to worry because I hadn’t heard from anyone. Their plans run out on the Wednesday, someone rang me the Monday. I was told I would be getting a phone call Friday and to allow 4 hours for the conversation. I had heard through social media that plans where being done over the phone so I was expecting that.

-I got the phone call Friday and the planner introduced herself. She sounded nice and friendly enough. The phone conversation didn’t go how I thought it would. It went for a maximum 45 minutes and it was just me telling her what I thought she should know.

I told her how difficult it is having 3 boys with autism is and how the dynamics can get crazy. absolutely loved going to Barnardos. He started attending a group every second Saturday where he actually got to go out into the community and go places. I wasn’t able to take my boys anywhere myself so it was the only chance got to go out. He also was his most calmest there. He struggled at school, his struggling with home life constantly competing with his brothers but at Barnardos I got told how polite he was and how he wants to be involved in helping other disabled children feel welcome. I remember saying it’s the only place really gets to be himself. I also mentioned he just had an added diagnosis of ADHD. The planner says she is waiting for some emailed reports from the boys therapists she hadn’t had a chance to read it yet but she said she would mostly go off that. At this stage the boys therapies had ceased as they had no active plan. A week later I hadn’t heard anything so I rang to see what was going on as the boys were missing their weekly appointments. I asked her if it looked like there would be many changes and she said not likely, she just said she was still working on it. A week later she rang me back and said that she didn’t even look at the extensive report that the therapist had done because at the time they were at the Gabriel Centre for Children and they where known for over asking for services.

I don’t know why the NDIS made us pay for the report from the NDIS funds if they weren’t going to use it. I again asked if it was likely there would be much changes to the boys plans and she said no she has been leaving most what they had the previous year. 2 days later she rand and said the plan was in. Even though we had used the funds successfully from the last plan. This plan was very different and not what I expected.$3500 was taken off of his therapy funding in the second year, over $2000 less for nappies for the second year, and more then half of community support had been cut from the plan.

I rang to speak to the planner once i plucked up the courage to and I asked her why so much funds where cut. She could not give me a direct answer. I actually broke down to this lady because she had taken away crucial therapy funding and the key worker support that I’ve needed to help me implement strategies at home. She asked me why I felt I needed so much support and I explained again about my mental health illnesses and that I have 3 children with a disability and no informal supports. The ndis planner asked me why I felt like I needed so much support and she said that as time passes we should be using less services. The planner then asked me if there was any child protection issues currently in place obviously I said no. The planner then said that perhaps if I am not able to cope on my own without the supports that maybe there is a concern for my ability to parent my children and should she question a child protection investigation and she left it at that.

I was not happy with how from the very first phone call the planner did not take into account nor get to know our situation. I decided to put in for a review of the plan despite being told that it could make the situation worse. I was my Children’s voice I may have may not be the best of mums at times but i knew what needed and his therapies were crucial, so was Barnardos considering I made sure I mentioned Barnardos is the only place gets to be himself instead of just giving us what we had from the very beginning since before the NDIS started, she took half of it away. She listened to nothing, not the therapist that the NDIS funded to do an extensive report, and not his primary caregiver either.

I was really angry with how the planner had made me feel and I didn’t think it was okay that she put me down when my whole family has complex needs. So I made an official

• complaint about the planner.

I done that via the online form. That planner and what she said and how she made me feel could have quite easily put me in a really bad headspace. She had absolutely no right making me feel that way.

About after a week I put the complaint in I got a phone call from a lady saying she was going to be the one dealing with my review and asked when I had time for a possible 3-4 hour conversation. We made a time for the following Tuesday at 10am. I was extremely anxious about the review and I was worried my communication difficulties would make me seem even more incompetent if I had trouble getting out what I wanted to say. She called exactly at 10am. She explains who she is, her role, and exactly how long the process would take. She then gave me a brief rundown of how she goes through things. I decided that I’m going to be completely honest to this lady that no matter how hard it is to talk about certain things she is going to know the ins and outs of every single one of us despite how bad it may look on paper. I apologise in advance for the difficulty that I am going to have trying to communicate what i want to get across. I said that I may fumble my words and sound completely crazy. I explained everything that happened from start to finish with the other planner, the review lady listened, stopped and asked me questions if she needed clarification I was really passionate about the child protection services comment the other planner had made and I decided to explain why.

                                                           The

planner was absolutely lovely with me sharing my experience with her, I wasn’t sure if I was going to but I wanted her to get the full effect of the damage done. She said she really appreciated my honesty and said it helped me better understand my situation. She said she would call me Friday regardless of having an outcome or not and keep me up to date. She only has 14 days to complete the process. She rang the Friday saying she was definitely approving the review just wasn’t sure what she was going to do yet.

The complaint phone call i received the next day in regards to the complaint id lodged was a totally different conversation. She was cold and heartless and even though she said she had to stay mutual I could tell she wasn’t on my side. It was about an hour long conversation and I cried about half of it. Not once did she comfort me, or show any compassion. I was asking and trying to get her to explain to me how being made feel how we where felt was okay and that in our circumstances we should of been offered more support not less (this year i was diagnosed with bi polar, youngest with Autism and oldest with ADHD) but apparently I definitely don’t deserve any more support even

• though its a complex arrangement.

• The supports is there. I’ve seen it in the price list. I told her I felt like she didn’t care. She said she was going to investigate and that something will definitely happen but I didn’t feel hopeful. I don’t recall another conversation happening. I do have ptsd but I have my whole ndis process to date on a public Facebook page and there was nothing more about that on there.

• I will always be baffled at why the planner cut funding. I was extremely shocked that someone liked that worked in disability. If you know someone has complex mental health issues, and is the primary caregiver to three special needs children then generally you don’t try and ad to their stress.? I thought that given that I have bugger all informal support, and every single one of us had some sort of problem. That a program made for people with disabilities would be their to best support the person with the disability, and also to have their parent or carer armed with the best support and tools to successfully manage 3 children with disabilities. I didn’t ask for my ptsd issues. But I lost certain life skills, I lost so much of me. I know that the NDIS has extra supports for parents and carers to better help them deal with what’s going on but I was never offered more. Someone who works for the NDIS should be trying to empower parents of children with disabilities not question their ability to parent.

• The review lady rang Friday to say she was still going over everything and that she would get back to me as soon as she could and reminded me she had a deadline of 3 weeks. She rang towards the end of the 3 weeks. She said that the NDIS have a complaints process for a reason because sometimes they do get it wrong. And in my circumstances she agreed that a mistake was made. The proper therapy funding and key worker support where put in the plan she had placed, enough key worker support for the visits to be regular, all of his nappy funding was put back to what it originally was and he got his Saturday program every second fortnight for the next year and vacation care each holiday. She was the only one that made me feel okay about being apart of the NDIS the way the planner had made me feel and the complaints process lady made me feel was honestly one of the worst experiences I have had as a parent. I was doing the best I can for my kids, I know I wasn’t perfect but I was doing everything for those kids despite the fact I had no desire or want to do anything at all especially leave the house. It really bothers me that a program for people with disabilities doesn’t put the important people first. I thought that the NDIS was going to change our lives for the better. The only part of my whole experience that has been okay was the first year. It just went from bad to worse.

• The paper The Australian contacted me as I was sharing my story publicly on Facebook and they seen my plan had been slashed and asked if they can get a photo of the boys and I had an interview. The NDIS did so wrong by me and my children and there was no consequences for how I had been made feel so I certainly had no loyalties to the NDIS and wasn’t going to pretend it was anything it wasn’t.

• I applied for a review for because he needed more behaviour support and to get started regularly with a psychologist. At first the planner I spoke to was hitting a lot of road blocks but after a meeting with my key worker, Barnardos (community support)

-and myself, and a report from the psychologist the planner implemented a 9 month plan

to review in February.

My middle child’s community support had run out and a couple of weeks ago I rang the same planner that dealt with . The next day she organised a meeting for the following Wednesday, my key worker came as well. The following week she had the plan approved. All of my 3 children have been allocated to the one planner and she has put it in place now that all the plans finish in February next year instead of all 3 kids plans finishing all over the place.

I am still not happy with the ndis, so many false promises in making our lives better where in fact for a huge chunk they got it very wrong. I’ve only felt like things are starting to look up for us now that we have been allocated the one planner for all 3 boys. I have a complex family and it should have been about the family dynamics from the beginning. But there was far too much focus on wanting to get it right for the individual. With a family of complex needs including one with more than one special needs child it’s better to look at the family as well as the individual. What you do or don’t do with one may effect the other one, what you do for one might set the other one off. And all 3 can set each other off and you can have em3 children melting down at once not knowing who to calm down first.

I know the plan is about the person with the disability but the parent or carer is responsible for that persons safety and well being. It is extremely important that you try and support the parents and carers as much as possible. The more you help them the more they are able to help the person with a disability. It’s really important that during that planning meeting if the potential participants don’t rattle off their whole story on their own accord that they do ask questions and that they have a full understanding of what goes on in that persons lives. I don’t know how you train your planners but they should at least take into consideration the report that the NDIS makes us pay our therapist for actually get utilised. I would hate to think that any therapist is going to add unnecessary products or services to the report so they get more funding from the ndis. These therapists go to uni they choose to work with children with disabilities. If you have any service providers that you have registered under the ndis that care more about money than their clients then you need to remove them. That therapist spent 4 hours on that report. Went into extensive detail why she recommended what she recommended. If the NDIS is not trusting our therapist then why should we. Everyone should have the best interest of the person with disability in their best interest. There should be no distrust in the reports that your asking for. If the planners aren’t going to use them don’t make it mandatory. That was two to three weekly sessions that we could of had.

I especially think that the NDIS needs to get some knowledge on mental health. Especially complex mental healrh and parenting. You have absolutely no idea how hard it is to try and re teach myself life skills I never got taught in the first place because I have no choice to try myself because I have no services for myself in place and I never have. I have faced more than one traumatic event in my life, trauma changes people. I didn’t ask for what happened to me to happen to me. I didn’t ever expect that I would

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be raising 3 children with special needs. Some days I don’t know how I do it. But prior to the NDIS process I thought i was doing the best I can with the cards I have been dealt. I don’t know why the NDIS hasn’t listened when I repeatedly say I’m not well and I am trying every day to just get by. I honestly believe that there has to be extra assistance that’s covered under NDIS for complex circumstances.

I would have liked to of gone through the whole NDIS process without any problems. It has greatly effected my mental health both because of how the planner made me feel and also because I don’t ask for anything extravagant and extraordinary and over the top. With from the very beginning I’ve only wanted what he had in place with the NDIS prior to the NDIS, except for the added psychologist because of the new diagnosis. It’s stressful enough raising children with special needs let alone having to fight for what your children deserve. My children’s peadiatrician has said from the very beginning that with autism early intervention is the key. That regular speech, OT and psychologist if needed is what gives our children the best chance of their brain getting rewired the correct way and them having the best possible chance at a close to normal life as they can. I don’t know why that planner took away funding but in doing that you where taking away what the person who diagnosed him said was necessary. While it may be pricey for the first couple of years with children with autism if they grow into independent adult who are able to live independently in their own homes then you did it they got that chance. You need to think about what taking away funding can mean to a person. To me that meant that the NDIS didn’t care about what was in best interest. That for whatever reason he didn’t deserve the best opportunity available to ease his disability. That his future was not cared about. Did the planner think that was beyond repair and didn’t deserve the same opportunity as others who have autism? I shouldn’t have to fight for what the professionals say is there best chance. There clearly needs to be a lot of work done. I can assure you I will never be telling my children about this planning process I don’t want them to feel any less. We face enough outside grief outside in the real world we don’t need it from a program that us supposed to be for people with disabilities.

I honestly have no idea how the program is able to make so many mistakes. It’s people’s lives that you are dealing with and I really don’t think that the NDIS has any clue as to how deeply effected so many of us are by the way that we have been treated by the very scheme that promised to change our lives forever

Kathryn Gilbert