Episode 5 – Skills for Life
Hosts Dr Lisa Interligi and Kristine Christopoulos welcome guest Nicola Millar, Occupational Therapist, to talk about helping young people with disabilities develop skills for life.
The recently elected Australian Government campaigned on a collaboration with people with a disability to review effectiveness of the National Disability Insurance Scheme. This forum discusses the views on NDIS from the special position of parents and their role as first line carers.
Speaker 1: Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters, Dr. Lisa Interligi and Kristine Christopoulos and their guests in sharing experiences, information and support ideas to help children with disabilities flourish. Loop Me In is brought to you weekly on platforms like Apple podcast, Spotify, and Stitcher. To name a few, you can learn more connect to the Loop Me In community and listen to more episodes on our website loop-me-in.com.au.
Kristine Christ…: Hi everyone, and welcome to Loop Me In’s first ever forum. So Loop Me In started about 12 months ago and we’re already in production for our third series of podcasts. We’ve had great feedback from most families and service providers and have learned so much ourselves and we’re keen to learn more thus why we love the parent community and all your feedback that comes with having these podcasts and forums. So I think we’ll begin by introducing ourselves. So the people that don’t know us, I’m Kristine, I’m a mum of three, and I have a son Matthew with an intellectual disability and autism and Lisa.
Lisa Interligi: Yes, I’m Lisa Interligi. And I also have a 22 year old son with an intellectual disability and autism. And just so happens that Matthew and my son Louis are best friends. So that makes for some interesting photos and videos and family times. And I have another son who’s an older brother to Louis. So I guess that it’s nice on a cold winters night just to be sitting and chatting about something that we have a shared interest in, and really that’s the wellbeing of our children. And what we’ve found out in our journey that is that parents and particularly moms are great at sharing their shared interest and their tips on how to make the experience and the wellbeing of their children who have disabilities better. And so we wanted to talk tonight about the NDIS review that the ALP government had promised through their election campaigning.
And we also tipped in at the last minute, the National Autism Strategy, because I think the two, a little bit linked, and it’s good for those people who have an interest in autism perhaps to get your perspectives as well. So I guess what, we just should start with NDIS, and kind of reflect on where we are. And it was introduced as you recall, by the ALP government under Julia Gillard in 2013, so it seems like a long time ago. To enable people with disabilities to have more control and choice in the pursuit of their goals. And our proposition is that parents have a special first line care for children with disabilities. And while we acknowledge their human rights, obviously we’re often in the position of exercising control on their behalf until they have the ability to do so. So just where we’re kind of at, with the NDIS plot, we’ve got a new government as you well know, after a long election campaign.
And we have a new minister who was sworn in Bill Shorten. The previous government had warned that the NDIS is financially unsustainable with the predictions that the cost could grow to about 40 billion by 2024, ’25. And that’s about 8.8 billion above their estimates, their annual estimates. In 2021, you’ll probably remember, and I think we’re all pretty shocked that the government had said that they were introducing independent assessments and their argument was that was going to make it a more equitable system. That was abandoned obviously there was a lot of pressure from disability advocates. But there was between 2020 and ’21, a reported cuts to funding of an average of 4% per plan. So for somebody who was getting about $71,000 in their NDIS plan, that meant that their funding dropped in 12 months to about 68,000. In a six month period we’ve seen an increase in disputes and that’s increased by 400%.
I think there’s about 1400 people seeking reviews under the Administrative Appeals Tribunal in that six months from July to January this year. The costs that the government is spending, I think it’s about $21 million off the top of my head, but the cost that the government is spending on lawyers in those review processes has ballooned out.
Zoe: Lisa, I’m always curious to know where I know clearly we can find out the cost of the tribunal things have always been around. But the information about reduction to plans, I’m curious to know where that information comes from. Does anyone know, like I hear it bandied around, but I’m never sure. Yeah. What that means.
Lisa Interligi: Yeah. I think it’s not something that the NDIS necessarily report. I think it’s more on external reporting to the NDIS, and it certainly has been reported by the ABC and some media.
Zoe: It has, I guess I just wondered.
Lisa Interligi: Yeah. Zoe, I don’t know but [inaudible 00:05:44] I’m looking to find out.
Zoe: That one I’m curious about, I know about the other ones, but I am curious about that one. That’s all.
Lisa Interligi: So the ALP campaigned on a review of the NDIS program, and one of the things that they said that they wanted to co-design it with people with a disability, which seems really sensible to me. But on behalf of children, it’s a bit hard and so our proposition is that parents should have a voice in that process as well, and that should be co-designed with parents. This is why we called this chat, we thought let’s get your views and your insights. We want it to be sort of a productive or constructive conversation and see whether we can start to try and feed a parent voice into that review. So the government has also said that they’re going to implement expert reviews so that if plans are cut, but cut for by more than 20%, so that’s a significant cut. There’s a fifth of your funding.
They will implement external reviews, expert reviews to make sure that it’s not arbitrary, that they are going to lift their staffing levels at their NDIA, so that’s good. That’s a good thing. They’re going to crack down on unregistered providers who are accessing NDIS funds. They’re going to review the NDIS pricing markets and compliance and develop a comprehensive workforce strategy. And I think that’s one of the things that Kris and I have been talking about for 12 months is the pricing issue, like how to… there seems to be wild bit wild variation in pricing, and how has that been controlled? And they’re going to try and fix the pathway for appeals and to make it simpler and more efficient. And I guess, try and reduce what they see as wastage in funding, through lawyers having to go to the tribunal.
James: I know who did the research in relation to plans being cut.
Lisa Interligi: Oh, good.
James: Oh, so it’s a guy called Billy King. He’s the director and owner of Peak Plan Management. So they’re one of the biggest plan management organizations in the world. I actually went to a presentation earlier this year where the whole presentation was based on three years of data that he’d pulled together around plan… Because they’re a plan manager they see people’s plans and he was basically mapping politics, in theory verse people’s plans verse promises verse COVID. There was a lot of COVID stuff in there as well. And then also plotted, if you didn’t finish your plan, like you didn’t use all the funds, how much, if there was a drop, if there was an increase and the social demographics around that. So it’s a guy called Billy King and he’s the-
Lisa Interligi: That is interesting.
Lisa Interligi: Yeah. I mean that he’d be worthwhile tapping into, I think because-
Kristine Christ…: Absolutely.
Lisa Interligi: … those issues are important, because I know that if it’s a bit like in business, right? If you don’t spend your budget in a financial year, you lose part of that budget for the next year. So you kind of don’t want to shoot yourself in the foot and not get the right support for your child, do you?
Kristine Christ…: There was a great article, Dr. Annie Banbury, who talked about the rural areas of Australia and how yes, they got their plans, but there aren’t any service providers in those areas. And she’s trying to encourage Telehealth Zoom so that at least these families get something. Because what happens is they get X amount of money, they haven’t used it because they’re on a wait list and then they lose that money the next year. So it’s just trying to find different ways these families can use the providers. What we’re looking at is how confident are you guys in understanding your NDIS process? Like where do you get your information for changes that might be happening?
Speaker 6: I source my information from you, amazing ladies, otherwise I’d be fairly clueless.
Kristine Christ…: Yeah. So community.
Speaker 6: Absolutely. And look also, we’ve just always luckily jagged at quite a good local area coordinator I guess, and have really placed a lot of trust in them. But, but you know, we’ve been lucky in that regard and I know not everyone is.
Lisa Interligi: Do you have the same person every year or you experience turnover? Because that’s one of the things that I experience is that it seems to be a different person every year and they’re all lovely, but you kind of have to start from scratch again the next year.
Speaker 6: Lisa, we have never had the same one ever. Never. So yeah, it’s just been sort of luck of the draw and look our funding has dropped every single year that we’ve received funding. And I think because of COVID last year we actually ran out of funding because we had to use so much. But yeah, it’s all a bit haphazard, but yeah thank goodness for community.
Kristine Christ…: And I think that’s the thing with the coordinator. I’ve been lucky to have the same one for two plans now and I’m able to communicate with her during the year. And I think that’s been great because she does communicate with me and say, “Hey, I think Matthew would really like this or you’re not really using your money there and this is how you’ve got to use it.” I think I have been lucky because she’s almost knows Matthew now, even though she’s only met him twice and I think that’s really important, especially for young families who are going to be doing this for a very long time.
Zoe: Kris, is that through the NDIA directly or is it…
Kristine Christ…: Yeah, just the NDIA directly, I’ve just been not-
Zoe: Not ALAC?
Kristine Christ…: No.
Zoe: ALAC, fascinating. Yeah.
Kristine Christ…: So I have just been lucky.
Zoe: That’s great.
Kristine Christ…: I’ve had her two years in a row. She’s not very resourceful, but she kind of just knows, “Okay, you are doing this now, so you probably need to go that way.” She’s been good. And I think it’s important, like Madeline said, it’s very hard to go. I’ve done a couple of years where I’ve had to explain Matthew and nothing really changes. So it is a bit tedious.
Lisa Interligi: So just keeping up with the news on what’s about to change or when they were talking about independent assessments and stuff like that, do get any correspondence or messaging or anything or do you go onto the NDIS website? Because sometimes I’m on there. I happen to be puddling around for doing Louis’s fund acquittal, and I puddle onto some news, but is there any kind of proactive communication?
Zoe: Not directly from the NDIS I get things from Association for Children with a Disability, which is sometimes things show up in that email link.
Lisa Interligi: Yeah.
Zoe: And you know, the NDIS would say that they have things on their website and they have to be plain English and things like that. But I can’t say I’ve looked there very much.
Lisa Interligi: Mm-hmm.
Zoe: I should say that I also work in the sector and I do audits of ECI plans so that our organization creates, so I actually do have an insight into their website, their internal website. So sometimes I’ll get my information that way. So I have an advantage in terms of getting information, I guess. Doesn’t make it easier to get a plan.
Lisa Interligi: Yeah, no, that’s true. That’s true. How do you think that can be improved though? I guess that my proposition is the more informed and capable we enable parents the better-
Zoe: They’ve got everyone’s emails, they’ve everyone’s information it certainly would be interesting to have emails once a month even, once a month newsletter from the NDIS, what’s changed, what’s new.
Kristine Christ…: If anyone not self-fund on at the moment, self-managed sorry.
Speaker 6: We self-manage Kris.
Kristine Christ…: Yeah. Because I feel like that’s the senses I’m getting a lot of families are, which then is difficult if you can’t find information, isn’t it. I wonder whether having someone consult and giving you that information is a better option or whether self-managing is.
James: I know, personally I work in the sector and I get my most update information from people I know who work in plan management, because they have to know the information to tell you the truth. Support coordinators quite often don’t know the information, but plan managers because they have to financially acquit it, in theory, they always seem to be most up to date. And if I’ve ever got a question about something that’s happening, that’s the first person I’d call as a colleague that’s in plan management, normally in like a relationship role and go, “Hey, what does this mean in real talk?” But I also follow a guy called Carl, he’s got a disability himself is Victorian base. He used to work at the NDIS there’s quite a few people like him that have worked for the NDIS and now they do a lot of posting solely around changes to the NDIS from the perspective of someone with a disability.
So not so much from the parental perspective. And he’s got, I don’t… he’s in a wheelchair. That’s I know about, he’s very well spoken and he knows what he’s talking about. So I quite often see his stuff in social media and stuff like that.
Kristine Christ…: So I guess looking at the application process, and I think most of us here have had a plan for a few years now. How did you know whether your child would be eligible for NDIS funding? Was it through your school community?
Speaker 6: Kris I think that we, I probably even learned from maybe even you, someone like that, but I think once pretty much anyone who qualified to be in a specialist school setting was going to qualify for NDIS funding was sort of going around. Do you think that’s about right?
Speaker 7: Yeah. I agree with you (beep) that time when we all came in when it started. And so information, we were just kind of automatically transitioned in if we were in a special school. So we got called, but again, I work with staff who are battling to support, but we’ve got a special team that’s not funded by the NDIS that works with vulnerable families to try and help them with the application process now, because it is so hard. And if you don’t have therapists and things like that, helping you, it’s a real challenge. So I think we’re kind those of us who got in 2013 or whenever it was, we’re kind of very lucky.
Lisa Interligi: Yeah. And it’s costly too, then isn’t it really? Because if you don’t have your team of therapists and it’s complex because if you don’t actually have a team of therapists, because that’s hard to find and the right therapists, then that can make it even more difficult.
Kristine Christ…: I think also, and I don’t know how you guys feel about how it, isn’t very easy to understand, is it? You kind of like I’ve met young families that sort of have no idea where to start or what to be asking for, especially if their kids are just still in school or in early learning. Is that how you guys felt with that?
Speaker 6: Yeah, look, no question. And I still meet (beep) classes made up of some kids that are quite a bit younger than her. And I was speaking to a mom on the weekend who’s sort of got this funding package, like we all have that. She has absolutely no idea how to spend it. And she said to me that she hadn’t even realized that she was allowed to spend some of that money on a carer to do things with her daughter. So it just goes to show you, there are people who even well resourced people who don’t know what to do with their funding or don’t really understand the system.
Kristine Christ…: Yeah. I agree with you. And I mean, Lisa and I are still learning, like there’s so many things out there that we, I mean, I wouldn’t know about (beep) and lived ability. Like there’s so much out there that we don’t know about. And especially we’re going into, a lot of us here, are going into another phase of our adulthood for our children, so that’s a completely different area. But looking at the younger kids I would imagine some families from backgrounds that are non English is not their first language. They probably don’t even know what a speech or an OT does.
Lisa Interligi: Well, we’ve had lots of examples of that too, Kris, in the process of doing this podcast, haven’t we? I was at having my nails done a couple weeks ago and my nail technician said to me, “Oh, could I put my girlfriend on, she’s got a child and they’re struggling at school and they’re not getting funding.” And as a Vietnamese family and they had no idea where to go. And it’s just that kind of informal accidental contact that helps try and win their way through what is a very complex process.
Zoe: I agree. And I think when we moved into the system, we already had respite through council. So we kind of went and we’re already using an OT. So we kind of went along knowing what supports we wanted to replicate in the NDIS system. But if you’re coming in from nothing, it’s really… I imagine there’s kind of not a handout and I got the price guide and kind of read through it that sort of said, “Oh yes, we need that or we need that,” but not everyone has those skills and there’s not an easy resource about what sort of things are available and how those things can support your family or your child. So yeah, I guess that’s what the plan is supposed to do.
And certainly I look at the plans that work with us and that they have an idea of what could be funded. And so they encourage the families. You know, I never knew that you could get funding for picture communication. The comic pictures and to make up picture books and things like that. But who knew you could throw $500 into a plan for that and get a speech therapist to do an assessment of what you need. So it is a bit of a luck of the draw, I guess, of what you plan recommends that you do.
Kristine Christ…: So how do you think it needs to be improved? I guess what I’m hearing is that the planner that we get almost needs to be someone that we’re committed to for a longer period than one year, and then they can help us on that journey.
Speaker 8: I think I agree with a lot of what (beep) just said, Kris, and I think that you definitely need continuity with people who get to know your child. I think you are, you are one of the lucky ones who’ve had straight to the NDIA and have had some continuity with people who’ve helped you with your plan. But I also think that one of the first things that went out the window for many people was support coordination. And I was really privy to seeing what that was all about (beep) when first got her plan. We had quite a lot of money in there for support coordination. And I was self-managing. We got support coordination, I think two, maybe three years in a row. And I went through 1, 2, 3, I went through four support coordinators and I kept sacking one to get another who I thought might be able to actually give me more information than I was giving them.
And one after the other, they were just drawing down on this money and literally drawing down, I would have a telephone conversation and then I’d log onto my plan. And they would’ve charged maybe $500 for that telephone conversation. What I witnessed was an absolute rort. And I ended up saying, “I’m begging you to take it out because it is just completely wasted money in our case.”
Zoe: I agree with you. I mean, the thing is it’s not our money that’s been wasted, it’s the NDIS money, but it is actually our time. Like that was what frustrated me about that whole process that you’d spend the time with them and you wouldn’t get anything out of it.
Speaker 8: Right. But I also just think for the people who don’t understand English for people who aren’t as articulate, who can’t read and write the same level to there are so many people out there. And for a very long time, I kept getting phone calls from friends, from family who knew someone with a disability. “Oh, (beep) would you mind just chatting to this person to help them?” People were going, “You should start a business.” And I just couldn’t do it because I just wanted to help these really these poor people navigate this system, which seems like it was so much easier when we joined. I do think we were lucky being sort of one of the first. But it has to start with more explanation to people about what they can and can’t spend it on. Equally as (beep) saying she realized what she could spend it on.
You know, I’ve had conversations with people who’ve gone I’ve just gone out and bought this for my child. And I’m like, “What, there is no way that falls under… How is your plan worded that you can manipulate that to be in your plan.” And so I think people have a real lack of education about what it can be spent on (beep).
Zoe: Didn’t you go to a seminar thing that you found very helpful, right early on.
Speaker 8: Yeah. I went to so many seminars to try and educate myself and also to learn, I can’t even remember the name of… I went to like a week long course on how to write a plan. But a lot of those people aren’t running them anymore and most people don’t have time to go to stuff like that for day after day to learn how to write or what to ask for and how to ask for it. And you’re so right, we were connected already with therapists and specialists, so we weren’t starting from a raw base.
Lisa Interligi: Mm-hmm. That’s right. And I wonder how (beep) how educated the therapists are as well, because it’s great to say, “I could have a shopping list of things and I could throw that in,” because you either coming from a knowledge base of what your child needs, or you just think it’s a good idea at the time. To what extent are the therapists helping you articulate what the child’s needs are and therefore in helping you navigate your plan and what to ask for.
Zoe: I will say that the therapist recommendations I’ve seen in the ECIS space are pretty good. And I guess that’s the thing now. I mean, we went to, Noah’s Arc we’re that age, but now they probably are hopefully booking in earlier and getting someone to help them with those goals.
Kristine Christ…: Looking at the annual reviews, ladies and gentleman, how do you prepare for your annual review? What’s something, do you consult with someone? Do you do it yourself? How do you go about that?
Speaker 8: I know that each… Well, the last plan I actually begged for a two year plan because I get so stressed every year about the amount of work that has to go into preparing for a plan. And it was always immediately after my summer holiday. And I spent all summer holiday sitting on a beach with a pad and a pen and I was just like, I have to change this up. So I went for a different plan and actually had to end up going for a review last time, because it was so significantly cut that I just knew that I had to try and get them to review it and they did review it. And that worked out really well. Because now I’m in the middle of the year and I got a two year plan. So I can actually relax for a little bit and not have to think about preparing for it.
But I think the whole process of preparation, I mean having to get reports from everybody is what happens if you take at the moment we are taking a bit of a sabbatical from speech therapy, just because I’ve got such a resistance from my child to go to speech at the minute. So I’m like, “Look, she talks fairly well. I’m going to give it a break and let her do other things.” But you know, I’m sitting here in the back of my head going, “Gosh, how long do I leave this for?” Because I’ve got to get her back on board before we have to submit for the next plan. And you know, that’s almost the wrong reasons. You know what I mean?
Zoe: And that for me is the problem with the use or lose it. Because if you say at this point I don’t need it and you even leave it out for a whole two year plan, you should feel confident that in three years you can go back and go, you know what we need a boost try this and that it will be accepted and yeah.
Speaker 8: But you know, it won’t, you actually know that if you don’t use it. And that was the problem in COVID, there was so much funding that we didn’t use, which is why it was cut so much. And then you go back into semi-normal living and you’re like, “Look, there’s no way, I get [inaudible 00:27:22].”
Zoe: I guess if there’s a review at the moment and they’re wanting to hear things, that’s what they need to hear. That if we can be honest with them, we won’t feel a need to use money just for the sake of using it.
Speaker 8: That’s right. And I think that’s a really valid point, but I also who started and came up with the price list. What person, I think it started all those years ago at $42 an hour midweek for an unskilled person who’s very skilled in terms of relating to your kid or getting to know your kid and what they have to do. But you don’t have to do a university degree to be a support worker who started at $42 and where are we sitting at now? $60 an hour for midweek. And then it goes up to almost 100 on the weekend. I mean, of course it’s not sustainable if-
Zoe: That’s right.
Speaker 8: … you are paying those rates. And then you’ve got the problem of when these support workers, they know what they can be paid. And so many people won’t work for under what the top rate is and other people so it’s so fraught with-
Zoe: The thing (beep) is that with organizations, there are overheads that do scoop up that money. So that’s a tricky thing. I know what you are dealing with because you’re dealing with people who take the whole amount for themselves because that’s all that there is. But sometimes organizations can take up to 30% of that for their overheads. So it’s tricky.
Kristine Christ…: I think you’re right. The costings need to be re-looked at, because I think as much as it benefits our kids to have this package. It is definitely benefiting the service providers.
Zoe: A lot of service providers are saying they can’t make ends meet.
Kristine Christ…: Mm-hmm.
Zoe: So, I don’t know.
Speaker 8: That’s what’s really interesting is since the model changed a lot of service providers, like (beep) just said are just, there’s so many who’ve gone under because they can’t make ends meet.
James: I think when it comes to that, there’s a difference between block funding and NDIS funding. And I know coming from a block funded model and doing a transition for a rather large organization to an NDIS model, the way organizations made block funding work was if you had, if you had a day service and you had 20 participants accessing it, they didn’t have to access it every day to have 20 participants there. So you are being paid to have 20 participants five days a week, but you might only have 18 there that day. The next day you got 15. Where now, because they’re having to bill individually, it’s making the service providers more accountable for the hours and the service they’re actually offering the participant. So, a lot of the organizations I’ve seen that have gone under probably might have not dealt with the accountability around the hours as much because there was actually more money in NDIS per hour than there was in block funding. But in block funding, you didn’t have to justify every minute. You just had to justify it every year.
Zoe: I don’t know, we run a support coordination team in (beep), I was just speaking with manager today and he’s not got the best interest and we’re talking about whether we could provide behavior support. And he said, “I think it charges more.” And he said, “We need to do something. We’re certainly not breaking even with support coordination.” So these people I trust, they’re not taking the money off. So I think there are differences between organizations and individuals.
Speaker 8: Also we’ve given so much choice. I mean, it’s all about choice and control. And so we, as parents feel quite empowered that from literally one month to the next or one day to the next, even say I’m changing my mind. I don’t want my kid doing that anymore and pulling them out. So like (beep) was saying, the accountability is so much more for the providers now. And we have flexibility, which must be awfully hard to manage with in terms of trying to budget. And then you might budget for 20 students every day and then all of a sudden five of them pull out or they go on holidays, we’re going on holidays. I just put in a note to say my child won’t be there for two weeks and they don’t get that funding.
Zoe: Just increased the ratio for us Bindy.
Speaker 8: Sorry about that.
Zoe: It’s fine.
Kristine Christ…: So when you are doing your review, are you getting external people to help you or you just managing that review yourself?
Speaker 6: I’m just muddling through all my own Kris, apart from what advice I get from you people really?
Kristine Christ…: Mm-hmm.
Zoe: I do my own Kris. I keep spreadsheets and then work how much reviews of each bit and go in and try and forecast what we need going forward in each of those areas. But what that doesn’t do is kind of help me think about what I don’t know about. So I’m aware of that. So sometimes I might pick something up from someone and think, “Oh, I wonder if I could include that.” But I think that is good. I’ve often thought it’d be good to have that support coordination just for one session before a plan review, to sort of pick their brains about what else could go in.
Lisa Interligi: Also means that you have to have foresight about the development of your child and the milestones that they’re going to go through and they’re changing needs as they move forward. And so you’re not always predicting that. So for example, Louis had a three year plan and which has been great, but you know, now he really needs some extra care and carer support, and he needs to start to build in some respite. And because he’s been on a long plan, it’s been a bit hard unless I go back and review the plan, which I’m not necessarily wanting to do. So you do have to be able to plan ahead and know, to your point (beep) sometimes you don’t know what you don’t know. So you kind of get yourself locked in a bit of a corner.
Zoe: Yeah. I mean, I know they talk about, you can call for a review in the middle of a plan, but as you say that can be kind of a pain in the neck too. If we’re talking about recommendations, it would almost be good to have like a top up request option that you could go in and just put in a specific item for a specific thing that just goes to a planner or an approver because the person who plans, isn’t the person who actually approves the funding. And yeah, that would be an interesting process.
Lisa Interligi: Yeah, I think so.
James: I think there is a thing like that. It’s called a light touch review.
Kristine Christ…: Okay.
Zoe: Oh, you’re right. You are right. Yeah.
James: But you have to know how to use it, to-
Zoe: Know how to ask for it.
James: … get it in theory. But yeah.
Kristine Christ…: So in terms of management, are we all self-managed here?
Lisa Interligi: Yeah, think we are.
Zoe: We are. But I must say we went to a career’s exposing at (beep) school and talked to a plan manager and it did sound a little bit interesting just to give them… Oh, hang on, with our plan, what’s the difference in the person who pays the bills, that’s not a plan manager, is it? Or is it?
Kristine Christ…: Pretty much does what we were just talking about assesses what your child needs and takes it there for you and gets a fee, I think an annual fee from you.
Speaker 8: That’s what a plan manager does.
Lisa Interligi: They’re doing the administration aren’t they, they’re doing the payment.
Zoe: I think, no I think isn’t there… So I should know this. Isn’t there a financial management and there’s plan management.
James: So plan manager deals with the financial side of it. So they get paid a yearly fee to basically pay the bills.
Zoe: That’s what I thought. Yeah.
James: Yeah. And then you’ve got a support’s coordinator and they do the paperwork planning side of it. So a plan manager, I think participant gets about $1,700 a year. So there’s a volume business, but they also know a lot about the industry and they have to build their businesses to the size they have. They have to know all the ins and out because they have to make sure that it’s going to… They’ve got an accountability, I guess. But yeah, they, they do the financial side of it.
Zoe: But they don’t have a role really in the plan review. They’re just as you payers.
James: Yeah. They just they’re just paying it. But also normally with a plan manager, they are prolific emailers, to tell you the truth, around changes to things and stuff like that. They’re prolific at it to tell you… You’d probably want to stop getting emails from them a lot of the time, but yeah. So they do share information. They don’t implement it for-
Zoe: I feel like there’s another role in the system. That’s not the plan manager who pays the bills and it’s not the support coordinator. There’s another role. Can’t remember what it is right now. But yeah, I guess the support coordinators are the ones that theoretically should also help you prepare for a plan.
James: In theory, below a support coordinator, there is a so support coordinator has three levels. There is a lower level. So you’ve got level two, which is what most people get in their plans. And the lowest level is called support connection. It’s a model where it’s the support coordinator’s job is in theory to teach you how to self-manage yourself.
Lisa Interligi: Okay.
James: So you that’s you want [inaudible 00:37:16]
Zoe: Because the NDIS want you to move to self management.
Zoe: Because it’s cheaper. But it’s I don’t know for those of us who do it, I don’t know how sustainable is in the long term.
James: I think it’s cheaper. And they also look at it as they get to tick boxes around choice and control. Because in theory, if you are doing it, they can tick the box and you’ve got full choice and control over, over how the funds being spent. It makes them look good to spare you the truth.
Lisa Interligi: Exactly. And that money that you pay comes off your child’s funding?
Zoe: No, it’s additional for a plan manager? No, that’s over and above. So when they build the budget, that’s a separate item. It doesn’t come out of your funding.
James: It comes out on a separate item line.
Lisa Interligi: Yeah. Okay. But it’s costing the government?
Zoe: Yeah, sure.
Zoe: Which is why the encouragements are self-managed but some of the people that are asked to self-manage or allowed to self-manage it’s criminal, really.
James: I can tell I’ve seen plan managers when I’ve worked, go to a service provider and say you cannot bill that. And like the provider has done things outside of the scope and they’ve said, “You can’t bill for that.” And they’ve really stood up for the participant and supported them from a financial perspective. For some participants they’re really, really good if they’re trying to manage themselves, but don’t have a full knowledge or to have the team around them, their family members. The plan manager I’ve seen them go to service providers and go, “We’re not going to pay that invoice because you weren’t supposed to do that. You’re not supposed to bill that. That’s not within your service agreement with that person.” Because they also see the service agreements. So if you got a service agreement and it says you don’t have public holidays and the service agreement says that the support provider will contact you 10 days before your public holiday and offer you another day and they don’t.
And then the support worker turns up on the public holiday and then you go, “Well, I’m not supposed to have public holidays and they go, we can bill you for two hours.” And then they bill it, the plan manager hands around and goes what wasn’t in service agreement. So you can’t bill that.
Zoe: That’s the drawback also people who are self-managing and there is a lot more flexibility in the way you choose to spend those funds. You can kind move things from one category to another and take a bit from one from the other. So I guess that’s the payback.
Kristine Christ…: Moving onto support now. How easy has it been for you to find service providers in your area?
Speaker 9: Can I talk about that? Hi guys. We haven’t said much, but (beep) are both here listening and very interested. We’ve had a lot of trouble accessing therapists. Before COVID we did have our son (beep) seeing therapists at home as they do, they come and visit. But with both of us working and the therapists, having hours, that it was really difficult for us to accommodate. So a lot of them were part-time and they wanted to finish by four o’clock. I mean, that made it very, very hard and we can’t be the only parents experiencing that. So we ended up having to just say, “We can’t sustain this because one or both of us had to be missing work on a regular basis to see to be here for a speechy or be here for a physio, an OT, whatever the therapists were.
So we tried to find therapists who had different hours and still speaking pre COVID. We went onto a wait list and it was we (beep), and I’m going to name them because it was ridiculous what happened with them. We were on a wait list for over a year and they kept on saying, “Oh yes, you know, it’s just a few more weeks.” And then they’d say, “Oh, that person resigned or this or that,” they just strung us along. And eventually they just said, after stringing us along for. I think over a year, they said, “Oh, we can’t find anyone for you. So see you later.” Anyway, then fortunately, I suppose COVID happened. We had to put everything on hold because that time was crazy as I’m sure it was for everybody and (beep) was never going to engage with anybody online.
So yeah, since then, since COVID we are now dealing with different issues and so speech and OT and so on are down the list of priorities. And we’re having to look at psychology and anxiety and behavioral things that have been going wrong for him. So they’re our focus at the moment. And we’ve actually been really fortunate and think we have found a, she called a positive behavior psychologist.
Kristine Christ…: Positive behavior support specialist.
Speaker 9: Yeah. And actually I have said it to a number of people, “This is the first person I think who’s ever actually helped us.” She seems to have just understood all the things that we’ve been trying to explain to people about (beep) for years, she got it. So we’ve been really happy with her. And then we are just accessing a counselor through (beep). So at the moment, therapy is fantastic, but we’ve had a lot of trouble with it in the past. I just wanted to say something about therapists too. And it’s a little bit off this topic, but just while we are speaking about them. So I work in a primary school and I am on the (beep), so I deal with all of the external therapists and the families of children with disability in school.
And what I have seen coming from a different perspective. And it’s really been quite upsetting when we’ve all got children who have very high needs. I work in a mainstream school and a lot of people are accessing NDIS funding. And I mean, I know their children, I work with them and I find that a lot of funding is being unnecessarily used by people. And for instance, one mother might say to me, “Oh, her child needs some speech therapy,” or we might even recommend that they get speech therapy. And then there’s a particular organization quite locally here who will have the parent engages a speechy. And the next minute the organization is recommending an OT and a psychologist as well. And because the kids are under eight or whatever the cutoff age is it all, they don’t need a diagnosis, seven yeah.
So these therapists are just kind of creating jobs and it’s so expensive, isn’t it? Is it $198 an hour or something now, it’s just insane. So that’s something that really needs to be addressed. You know, there are a lot of families who desperately need the funding. When I hear about families having funding cut. And some of the genuine cases that I know have had funding cut and all of this ripoff is happening.
Zoe: I want to tell you something interesting. In the ECIS side of things, they have to be assessed at a certain level to get funding. And I feel in my bones that means they have to be able to show that they need kind of two different therapists. Like if they just had OT or just had speech, they probably wouldn’t be eligible for the ECIS funding.
Speaker 9: What’s ECIS funding?
Zoe: That’s the funding that they get before-
Speaker 9: The early intervention and stuff.
Zoe: Early childhood. Yeah. So it’s a slightly different model and they they would never get the sort of community participation or other support. The core supports that we get. It really is focused very much on therapy, therapy, therapy at that age.
Speaker 9: Mm-hmm. And I mean, I wouldn’t begrudge that to any child or family who genuinely needs it. Of course, I wouldn’t. I mean, I live it and that’s where I work. It’s something I’m really passionate about, but I do see it being missused.
Zoe: Yeah. You do wonder if the organization’s gouging a bit too.
Speaker 9: Oh, absolutely. Also I know of one family who, they actually went to a psychologist and swapped psychologist until they got a diagnosis for their son. And it ended up only being provisional anyway, because they wanted funding. It’s outrageous actually just the sorts of things that happen. There’s genuine need and that’s something that absolutely I would support that, of course. But when I see these sorts of things happening, I think, well, there’s a lot of families who are missing out who genuinely need it. And we are all going to miss out in the end if this sort of practice happens. And that’s just in a very small school, one tiny little, if it’s happening across the board, then there’s a lot of funding being wasted and we’ll pay the price in the end.
Lisa Interligi: Yeah. No, I think that absolutely. That’s absolutely true. Because we, again, Kris, and I’ve heard stories of people who’ve got like enormous amounts of money and people who don’t, who actually need it get very small amounts of funding allocated. And it doesn’t seem to be equitable that there’s some working in the system somewhere. Do you kind of feel like you have a voice, if you have concerns or that you’re concerned about something, but not wanting to go to a tribunal hearing, do you feel like you have a voice anywhere?
Speaker 9: Yeah, I haven’t looked and I guess that’s just another thing to add to the list of jobs to do, isn’t it. Just to try and find who to complain to or who to point it out to.
Zoe: Correct. And I feel like you have to be a pretty strong advocate.
Speaker 9: [inaudible 00:47:46] that way.
Zoe: And that’s not everyone. And I feel like I am a strong advocate, but I wasn’t able to correct the stupid mistake in a plan the planner made. So I was able to get something, I can’t remember what, something changed. But there was a stupid plan and I explained it to them and showed why it was a mistake. So you do have to be in for the fight, I think, and people don’t have that energy.
Kristine Christ…: I also think people who are on their own out there kind of don’t even know what a good plan or a bad plan is. Like in terms of financial. I’ve met people that get five hours of carer hours a week and think that’s fantastic and their child needs a lot more than that. So I think that’s also an area that it needs a bit more focus on and there’s no way families of non-speaking families are going to be going to a tribunal when they can hardly understand English themselves, they’ll be too scared.
Speaker 8: But I think you don’t know what you don’t know.
Kristine Christ…: Yeah, that’s right.
Speaker 8: Unless we are back to the topic of community, unless you are spending the time talking to other people who have similar maybe abilities or disabilities to your children in terms of sort of needs. And you just don’t know, you don’t know what you don’t know. And it’s really hard, I think, to get information on things you don’t know about.
Speaker 9: So I think schools and organizations like (beep) do have, again they’ve got time and staffing issues and so on as well, but I think they do have a big responsibility to be helping families. They’re the ones who have the most contact, know the most about.
Speaker 8: I always found, sorry, the Association for Children with a Disability to be amazing. And even though (beep) is no longer considered a child, I still pay a very small membership, I think they charge a year and they send through newsletters and updates. And this whole election, they were fantastic at really just showing you right down to really specifics about what government was supporting what. And these are things that there is no way that I’ve got time to sift through all this information that they’re putting out and understand and know what’s behind it. But they had a really great synopsis and I will continue to be part of that just because they do. And they’re there, if you are a member I think it’s something like $20 a year or something. And they’ll talk to you know, and I remember when (beep) was in the education system and I needed some assistance with how something was treated and they were just wonderful. Really fantastic.
Zoe: Yeah, that was what I was going to say. They’ve got a really good parent support line. And those parent support workers know a lot about the NDIS as well.
Speaker 8: They do, they’ve got a great knowledge base.
Kristine Christ…: So if you’ve had a plan and then the budget of your plan’s gone down, what were the reasons for that? What are they telling you the reasons are for that decrease? Is it because you just haven’t used the money? And so the next year they’ve just taken away from you?
Speaker 8: Well, in our case, that’s exactly what happened. I mean, we went in and had a great meeting and I had supporting documentation for everything that I was asking that I thought was reasonable and necessary. And I walked out feeling 100% supported. I thought it was a fantastic meeting. And to find a few weeks later, it arrives in the mail with so much money taken out and I just looked at it and I was like, “Where did I go wrong? What have I done that I got this?” I rang my LAC straight away and just said, “What’s happened.” And, “Oh, I’m really sorry, (beep) but you know, that went to the higher powers and I have nothing to do with that. And I’m really sorry.”
Zoe: And that’s true. They recommend, and then someone else looks at their recommendation and makes a decision. And there’s kind of no communication about that.
Speaker 8: No, there was none. And he said to me, “Unfortunately you got someone who, who just is really harsh with plans.” And I said, “So it literally is the luck of the draw of who looks at it at the end.” And I said, “That’s just not good enough.” I said, “I now have to… What do I do? You know, we can’t make this work.” And he said, “Well, you can go for a review.” And I’m just sitting there going, “And so what’s that going to take now?” And the energy again it’s just constantly requires… You work full time, you have to try and find these extra hours to prepare for these things. And that’s what I had to do. I just had to spend the time, go for the review and I didn’t get everything, but I got enough that I felt that I was at least listened to, but like (beep) was talking about before.
I do find that they seem to stand up and listen and no one wants this problem. But since COVID, we’ve had much more pressing issues than speak to OT, as behaviors have started to set in, anxiety set in. We’ve had to really look at the important stuff to us in terms of being able to just get her, to be able to go back out into the community and manage. Let alone worry about improving her speech or her skills in cutting in the kitchen, or that sort of thing. Now we are finally settling into that again, but it’s been really tough, but they did stand up and listen. I mean, I couldn’t spend behavioral support money during COVID. She can’t go anywhere. And she’s in the home 24/7 for two years. I mean, it was crazy. And they took that completely out of the package, I was just like, “We can’t do without behavioral support. We need it more now than we ever have.”
Lisa Interligi: What an emotional bloody rollercoaster that is. It’s draining for you and the family as well, you know?
Speaker 8: It really is. And I think that’s where they get people. Because number one, you may not understand the system and therefore know how to fight. Number two, if you do understand the system and you know how to fight, you mightn’t have the energy all the time. And more rarely, you’ve got the people who need to fight for it, and to go, “I’ve just got to do this. I have to find the time and do it.”
Lisa Interligi: So we’ve just got a little bit of time left. And I just wanted to just quickly touch on autism and the National Autism Strategy that the government’s talking about. One of the things that the ALP was quoting in its policy documents was that, which I found really shocking, about three up to 3% of the population apparently is on the spectrum. But people with autism experience, some of the poorest outcomes of our community in terms of life expectancy, and there’s a 20 year life expectancy gap, did you know that? I nearly bloody fell over.
Kristine Christ…: That shocked me.
Lisa Interligi: Yeah, I was.
Speaker 8: What do you mean a 20, like to cut off 20 years from a normal life expectancy?
Lisa Interligi: Life span. [inaudible 00:55:58]
Zoe: I think that probably extend across all disability. I wouldn’t be surprised, not something I’ve ever wanted to set my mind to really, because it’s horrible.
Speaker 9: It could be more something like people who were twice exception. So for instance, I know you were saying before, some of you that your child has an intellectual impairment as well as autism, which is the same as (beep) has a syndrome that has 1000 other things going on. So possibly because autism is a part of so many syndromes.
Lisa Interligi: Could be.
Speaker 9: All of those, anyone with autism makes up that statistic. [inaudible 00:56:39] Some of the other-
Zoe: And healthcare for people with a disability who don’t have the capacity to understand what’s going on, who refuse. You know, I was talking to someone whose son had a seizure, their first seizure, and they went to hospital and none of us would be surprised about this, but they couldn’t get any scans because there wasn’t the strategies to help the child. So they went home without being scanned. So I think a lot of health issues get missed because it’s just too hard.
Lisa Interligi: It’s just too hard.
James: When they talk about autism. They’re also talking a lot about, I’ve seen other stuff around mental health and autism and life expectancy. And as someone that is diagnosed with autism and also works professionally within the industry, there’s a lot of talk about people that are in the industry or in mainstream jobs, in the world who have autism or neuro diverse and that kind of thing. And the pressures put on them to be, to act normal within that world. I work in the disability industry, I used to work for an autism specific company, and I can tell you the some of the least understanding people were support coordinators in that company that were… and they would do very, very terrible things. And then when they talk about, “Oh, you go see a psychologist or something like that,” to deal with it.
The psychologists don’t understand, psychology doesn’t work on people with autism because we’ve already pretty much thought about everything before we’ve had the meltdown that’s already happened. We don’t need you to talk about what we’ve already worked with. We just need the strategies. So you do see a lot of people with autism when it goes to mental health or when it goes to that purpose, that there is a higher suicide rate. There’s also because of the way medications are used in children in relation to adults. So a lot of medications that are given to autistic children are based on focusing and making them focus. But if you then get into an adult life where you are having constant pressure put on you by society and you’re given drugs to make you focus. What do you focus on? You focus on that negativity in your life.
Yeah, so there’s a lot of misdiagnoses of medication in people with autism too, and the strategies put around them as adults. So yeah, that’s just my, sorry, that’s my opinion.
Lisa Interligi: Yeah, no, I think that’s good.
James: But I think that’s got a lot to, and if you also look at… if you go to data mapping around disabilities, across Australia and the percentages around what the NDIS was proposing in growth, the highest level for pretty much every region in Australia is autism.
Kristine Christ…: [inaudible 00:59:27] Which is-
James: It’s actually quite a big, a massive chunk. And it’s because a lot of it’s got… It says I think, it’s autism and neurodiversity is what they call it into. So they’re also bringing people with Tourettes. They’re also bringing in a lot of these and OCD, they’re bringing in a lot of other things to make autism a very, very big word. If you think about like 20 years ago, the word autism, wasn’t a word. You had Angelman’s syndrome, you had Kabuki make-up syndrome, you’ve had Fragile X. They’re all genetic disorders, obviously. But now they just say, “Oh, look, that person they might have Prader-Willi, that person has autism. It’s been given as a blanket to cover all these disorders and no one focuses on the individual disorder that person actually has. They just go, “They’ve got autism?”
Kristine Christ…: Yeah.
Lisa Interligi: Yeah. Well, it’s a big group, but it’s a big diverse group, but it’s also a big gap in longevity of 20 years, I thought was a bit interesting. I’m just interested. You know, I think a lot of us have got kids with autism and what have been the challenges in terms of getting health and medical experience. And I think you said getting scans is difficult. I remember taking Louis to have an EEG and them calling for, he was only a little kid they were calling for nurses to come and hold him down while they gave him some Phenergan to sedate him a bit and just completely over the top.
Zoe: I’ve got a whole list, blood tests, [inaudible 01:01:06] injections.
Kristine Christ…: Yeah.
James: And all those rooms-
Zoe: Blood pressure.
James: … have flickering lights in them.
Kristine Christ…: Yeah.
James: And shiny floors. And nothing’s actually built for an autistic person. Anything that’s a clinical setting, the way it’s built is not appropriate for someone with those neurodiverse end of the space in any way whatsoever. Even if they put things in place, it just doesn’t, it’s just not built.
Lisa Interligi: Well, just COVID vaccinations, didn’t we. We were a random bloody circle.
Kristine Christ…: That was a nightmare.
Lisa Interligi: That was a nightmare. And then in the end we found that we had people that would come to the house and they would get it done. Even to get RAT testing, wasn’t it. To get some-
Zoe: Oh my God, RAT testing. Yeah, exactly.
Lisa Interligi: I had somebody come to the door who was lovely. Rang the GP rang the government help line, they had no idea. And they couldn’t they just said, “Well, go into your doctor or go into the test center.” And I said, “He can’t queue up for bloody two hours and go into that setting and have somebody stick it up his nose. It’s not going to happen.” You know, just completely not designed to help.
Kristine Christ…: And no under-
Lisa Interligi: No understanding.
Kristine Christ…: It’s even a couple of weeks ago, Matthew was quite unwell with gastro. And I thought, and nearly dehydrating. So I rang nurses on call. And of course I said, “Go to emergency,” but of course, gastro isn’t life threatening. So I can’t send him to emergency and sit there for five, six hours because no one understands obviously that he can’t wait. And I think that’s the problem on the medical side, isn’t it? That you kind of not surprised by those statistics because even dentists, Lisa and I were talking the other day, I can’t remember the last time Matthew had a proper dentist appointment. So we’re actually taking him in and they’re going to sedate him. He’s going to spend the day in hospital, do his teeth, I’ll do bloods. But you know, can I continue to do that every year for him? You know, it’s very difficult.
James: And is that level of sedation good for him?
Kristine Christ…: Absolutely not.
James: Like there’s only so much you can go under before it actually affects your life expectancy. That’s right. And the expectation is that, “Oh look, we can just make them sleep so that then we can do what we need to do.” And that’s not like-
Kristine Christ…: That’s not right.
James: If you’ve ever spoken to anesthetist, they always ask, how many times have you been anesthetized before? Because every time has more risk with it. And if they’re knocking you completely out in theory, you’re anesthetized.
Kristine Christ…: Absolutely. And almost seems the easy way out, doesn’t it?
Speaker 9: I’m sure that everyone here would agree that the hardest part of being a parent of one of these kids is just the absolute lack of understanding out there. So I was at a doctor myself, about myself, a week ago or something, and I mentioned having (beep) and how it was pretty tough at the moment. And she said to me, “Oh, we’ll do you know, you’re going to have to do something about your son, is the first thing you have to do. And there’s that government insurance thing you should look into that.” And I was just like, “Oh my God, are you serious?”
Kristine Christ…: Yeah.
Speaker 9: Anyway, I didn’t bother talking to her about it.
Zoe: The other is you doing something yourself? It’s like-
Speaker 9: Oh yeah, love that one too, yeah.
Lisa Interligi: So one of the things that we could, that needs to be considered is perhaps health settings that are designed around people with autism, who have people who are trained in understanding the challenges, as well as having the space designed in such a way. And the process is designed in a way that isn’t going to be triggering or exacerbate their symptoms.
Kristine Christ…: Absolutely.
Speaker 8: And also, if you were able to create a few of these settings, something that really has to be looked at is all of us are talking about different procedures that our kids have to have. And talking about Kris’s anesthetizing or sedating Matthew, just to be able to clean his teeth. If he’s having a sedation, what else can you do at the same time? So (beep) had an operation many, many years ago and she had to have another procedure, literally two months later. And I was saying at that time, “She’s having a general anesthetic, can I please get two specialists in the one room at the same time, rather than putting her under another general anesthetic two months later,” I could not. You would think I was asking to move mountains. There was no way two specialists were going to try and coordinate the time to be able to do that. But if you could have a space where you could James talked about non flickering lights, non shiny floors.
Speaker 9: It actually, it’s really interesting listening to you, but as you was speaking, I was thinking something that really I would like to see addressed is the individual’s capacity to kind of choose what’s best. So in our case, because we are (beep) guardians, we should be able to choose for him and have it funded what works best for him in terms of moving any sort of short term accommodation. Because twice we tried to get him to go to an accommodation and twice didn’t work out and I’m sure you have similar experiences. He’s not going back. We wouldn’t, there’s no way that we can get him to try again. So if we want to have any time off, which has been part of our plan for a few years, but interrupted by COVID, we have to go.
And we actually think, well, that’s what suits (beep) he needs to be here. But you know, just people don’t understand that, including NDIS really it’s just, he’s not going to go somewhere else. He’s happy here. He’s safe here. His anxiety goes through the roof if we try and sort of do anything else. He stayed away from us one night recently, it’s the first time ever. Went to island and stayed with his sister. She took him for a night and that was a big breakthrough, but that was his sister. And yeah, it’s not an easy transition for any of us. But we’d like NDIS to kind of recognize that every participant needs to be treated individually in that and the choices, what works for one doesn’t work for another. So NDIS it made it very clear that they will fund a short term accommodation, but they won’t fund a place, that’s, it that’s all that they will fund. And that kind of doesn’t work for us.
James: But on that I need to go because otherwise my [inaudible 01:08:31].
Kristine Christ…: No, no you go we all need to go.
Lisa Interligi: Thanks ladies it’s been fantastic.
Speaker 6: Thank you very much.
Speaker 1: Thanks for being part of the Loop Me In community today and joining our conversation on raising children with disabilities. Join us for the next episode on some of your favorite platforms like Spotify and Apple podcasts. If you would like to support us, please recommend the Loop Me In podcast to your network of parents, carers, and providers. If you would like us to cover a topic or invite a guest to chat, please email us at firstname.lastname@example.org. Or go to our website at loop-me-in.com.au. If you’ve got any feedback, please let us know so we can improve and cover issues you want. And of course, if anything in the podcast today has raised concerns for you.
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Hosts Dr Lisa Interligi and Kristine Christopoulos welcome guest Nicola Millar, Occupational Therapist, to talk about helping young people with disabilities develop skills for life.
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Hosts Dr Lisa Interligi and Kristine Christopoulos welcome Melanie Dimmitt -broadcaster, journalist and editor Melanie is a mum of two and author of her book ‘Special ‘ in which shares the raw experience of coming to terms with her son Arlo’s cerebral palsy diagnosis. Melanie also works for HireUp as an advocate and produces a magazine The Blend Lifestyle for the tube feeding community.