OPENING

hope is really important um  you can’t really you can’t be  prescriptive about  what someone’s future should look like  you can’t be prescriptive about how  someone should live their life  you can’t be prescriptive about any of  those things and i think you have to  um give people the opportunity to have  hope because hope is everything right  hope for a better tomorrow for a better  future in fact it’s what keeps humanity  going because we have hope for tomorrow  so you can’t really take that away  from a person

 

INTRO

hello hello welcome to the 360 method  our weekly podcast where we talk about  everything autism 360. every week we’re  catching you up with what’s going on the  program talking to team members and  special guests and this week we are  joined by dr dinesh palapana and his mom  chitrani palapana it’s so lovely to have  you thank you so much for joining me  today  thanks for having us ella oh that’s my  pleasure so  dinesh is a doctor a lawyer a researcher  a disability advocate as well as having  been awarded the order of australia and  having been um  queensland australian of the year 2021  uh and his mom chitrani palapana is a  rehabilitation counselor and disability  advocate working in the ndis space what  a cool duo  um i’m so happy to have you on and i’m  your host ella bailey i’m an autism 360  veteran coach and an explorer of all  things parenting support  i come from a behavioral psychology  background i worked in research before  joining the team  and i’m so excited to be here with you  today  before we get started i just want to  acknowledge the gadigal people of the  urination from whose land i live and  work and where from where this podcast  is being broadcast  today  so  i would love for  you both to tell our listeners a little  bit about the background of your family  and how you came to be involved in  your experience of disability um  i know that you could go into lots of  detail but as much as you like i’d love  to hear it  all right uh mum do you want to say  anything  um yeah i’ll go after you  is dad  all right well um i guess we would both  acknowledge the uh ugambe people which  is where we’re talking from  but uh we we are from sri lanka that’s  where mom and i were both born  and we lived in sri lanka through a very  difficult time the country was actually  sri lanka’s going through a pretty tough  time  now even still  but when i was a kid there uh the  country was going through a war  and it was going through  all sorts of stuff and life was really  difficult for people there was a lot of  poverty there was a lot of corruption  there was a lot of violence there was a  lot of  uh there’s so much that everyone was  going through so  that’s what i was growing up in and  i think when we’re talking about  education which i guess is a  theme that um  all this is related to in some way  but even getting into a school was  really tough in sri lanka because  everyone expected a bribe  and my parents didn’t want to be a part  of that system so  we ended up finding our way to australia  through a skilled migration program on  my 10th birthday we landed in sydney  yeah and we i think i can speak for mom  as well when i say  we  feel very lucky to be in a place like  this  so  uh we initially lived in sydney for a  few months then we moved to byron bay  finally queensland and then gold coast  where i’ve been  since 2008  um initially i  did a degree in law at  the queensland university of technology  in brisbane  ended up studying medicine  at griffith university  and when i was in medical school i had a  car accident  and sustained a spinal cord injury  and uh that’s how i  ended up using a wheelchair and  came back to medical school  and  mum and i went through a lot of hard  times  after the spinal cord injury we lost a  lot of family we lost our financial  security  but we persevered and i finished medical  school and uh here we are  six years down the track  and uh life is good we’re very grateful  and  you know as far as family goes it’s just  me and mom  but we are still very very grateful for  what we have  yeah  yeah  so  if you would like me to say a little bit  about  my personal experience how we became  involved uh  in the world of disability like dinesh  said he met with an accident when he was  in medical school halfway through  yeah so um  when i was first told that uh  my son has sustained spinal cord injury  as a result of a more vehicle accident i  honestly didn’t know what to expect  because that was something that i did  not know and however when i went to the  hospital they would serve me the worst  case scenario as in your son will never  be able to even lift his hands up they  will fall back on his face  will not be able to breathe on his own  speak and  literally they said  prepare yourselves for a long life long  hard journey so  they never even mentioned what are the  possibilities of him recovering what are  the you know the  positive things at all so being his  mother i always believed in the positive  side of his life  yeah that’s so interesting i i hear a  lot from parents that  you know they do have this really  negative outlook on on what the  potential for their child’s future is i  hear a lot of um hopelessness i hear a  lot of uncertainty um and i wonder  what you i guess specifically you dinesh  feel um  that the  you know the medical industry the um uh  the kind of assessment process and the  diagnostic process

 

 

CHAPTER I

the role that that  has to play in the outlook that people  have for  the prognosis of their child’s  disability whatever that may be  uh i think  hope is really important  um  you can’t really you can’t be  prescriptive about  what someone’s future should look like  you can’t be prescriptive about how  someone should live their life  you can’t be prescriptive about any of  those things and i think you have to  um give people the opportunity to have  hope because hope is everything right  hope for a better tomorrow for a better  future in fact it’s what keeps humanity  going because we have hope for tomorrow  so you can’t really take that away  from a person  so hope is really important and i think  when we are  our job is really to  help people live the life that they want  and our job is to empower people and our  job is to  support people through whatever they’re  going through whatever their health  issues are  yeah it’s not so much to dictate to  people and be paternalistic about  what they’re doing  so  i think the whole idea should be to be  as person-centered as possible and to be  goal-oriented about  our patients goals or whatever that  might be  and to put our skills to you so we can  make that a reality and to make that  possible so  i think this is probably a bit of a  shift in mindset about what needs to  happen and then  uh it’s more about shared decision  making and shared goals and shared  problem solving to come to solutions  but um i don’t know if that  paradigm shift in thinking has got there  just yet  yeah interesting and obviously there has  to be a marriage between a parent’s own  understanding of what disability means  and you know the context that is brought  to them by that kind of diagnostic um  situation but chitrani what do you see  in the work that you do around just um  rehabilitation counselling for  carers what is that experience like for  them and what do you do  well the carers like uh when when you  say the carers there are two different  types of scarers as you know  informal and family  and also the  paid support network  but what happens to the family is when  someone’s like even when a child is born  with a disability  they find it very difficult to  first to come to terms with it all and  then also they don’t  have  a lot of support out there to teach them  how to take care of them because every  individual is different  so  we can actually  specific to certain different areas of  disabilities but um as humans we are all  individuals and sometimes you know we  may have the same diagnosis but we may  have different personality types and all  that so  it’s um  like when a child was born the mother  reads the child mother understands the  child even though they don’t speak so i  think  as mothers we understand our children  better  so  becoming a formal informal support and a  carer  being a mother has lots of um  lots of uh  what do you call the uh  positivity towards the child with a  disability  yeah absolutely and from both of your  i guess different um spheres of  expertise what do you see the biggest  issue being faced  uh  for carers of people with a disability  being  dinesh hmm that’s a really interesting  question  i think um  like you know when i look at my mom and  actually when even when i’m at work and  when i see  other family members and people that  really love the person that they’re  caring for they they are  fierce in their love and their fears in  their advocacy for them  i think as systems we need to facilitate  that better and we need to involve those  people better  and um i think the frustration for those  people is the  is actually that where it’s hard for  them to navigate systems and it’s hard  for them to get the best that they want  um for their loved one or the person  that they’re caring for  so it’s probably and and you know it’s  not really an interface that’s been well  developed yet i don’t think we  haven’t we don’t really involve  caregivers  as  efficiently and as closely as we should  there are certain things in my life that  my mom and  my team  sometimes they have more insights than i  do because they they see it from an  external thing about you know how i  might manage a certain thing or  how i uh you know whether it be  equipment or whatever  they might have certain insights from  their perspective that are really  valuable  so i think we just need to have ways  where we can integrate that better and  reduce that frustration

 

CHAPTER II

what’s what’s your take on that  well i also feel the system needs to pay  more attention to their carers  and um because um  sometimes you get told what you can do  and what you cannot do but i don’t think  that’s the way it should be  because like i said before the  circumstances are different  and  if somebody says okay um i’ll give you a  couple of hours of break so you could go  and do some meditation  but maybe that’s not what i want that’s  not what the other mothers want so i  always these days i’m thinking so what  if like especially the young moms with  young children who were born with  disabilities what if someone steps in  and say okay i’ll give you a break for  the day you go do whatever you want to  do catch up with your friends have  coffee with your husband partner you  know just do your hair do your makeup  and have a day to yourself and know that  your child is going to be safe in your  hands so things like that would really  help  a person to you know live as a person as  well because lots of mothers forget  themselves which is not a good situation  because they need to be stronger they  need to be happier to give others their  cup needs to be full to give others  so  yeah i think the system needs to think  look at things very differently towards  the informal support and the family  carers  totally we notice um here at autism 360  that a lot of parents come to us when  they’re feeling really alienated from  the intervention process so  they feel as though um you know they’ve  had to give over a lot of their the  direction and control over how they want  their child’s development to look  um  to to people who don’t know their child  who spend an hour a fortnight with their  child and they’re very excluded from  that process  so we we work to bring them back on  board to  and to give them the tools that they  need to navigate those systems and to um  to feel like they know what they’re  doing you know there’s a lot of  disempowerment narratives around  parenting or caring for a person with a  disability and i think  um  you know the system is sort of set up to  almost divorce that you know parenting  from  intervention and it so doesn’t have to  be that way  what in you know pie in the sky imagine  you know the government had all the  funding in the world  how would you  set up a disability  care support system for  um somebody say he was coming into our  program so a pediatric client under 18  with parents who wanted to get involved  what would that look like to you  chitrani do you want to start  okay ella as you and i both know  children are forgotten by the system  when it comes to funding  so  they say that it’s the responsibility of  the parent to look after the child  so what about yes it is a responsibility  of the parent to look after the child  but  what if a child has special needs so  special needs has a different meaning  it doesn’t necessarily mean the parent  is not capable of looking after the  child but with support they can do a  better job  so i would imagine if the system looks  at in a more different  way to support these children fund these  children  and um  recently i have come across a  few kids they can’t afford an ipad  because the mother can’t go to work the  mother suddenly have to give up on their  work and everything even i got given an  ultimatum whether you go look after your  son or just come back to work this is a  local government at the time i was  working for and they didn’t come up with  a flexible plan or anything now i know  now working in the system that they  should have actually come to me with uh  some suggestions rather than saying  choose between the two  yeah so  things like that we need to i think even  small differences we make even talking  about these things will actually help in  the future to  come up with a better plan better system  because people with disability are  important they actually  um

 

CHAPTER III

they actually provide a better service  when they’re going to workforce and the  kids are super super intelligent as well  i know especially kids with ultimate  autism they’re super intelligent the  majority of them are so we need to do  what we can do to encourage them and to  empower the parents to do more  do better  yeah dinesh do you want to have your  turnip pie in the sky imagining  uh that’s a pretty uh  tough question i think i mean i agree  with mom uh but  i don’t think you know we  you you  mentioned the thing about  uh  unlimited funding if the government had  unlimited funding i think it’s actually  more about  you know a lot of the funding that is  there um  it could probably go  even further if we actually involved  the families more and if we actually had  a more integrated approach  yeah exactly you agree  right so  i think um  i think if we just  actually listened to people actually  looked at what they want  actually worked with them whether you  know whether it be resources whether it  be equipment whether it be whatever else  i think we can make that dollar go  further  and i think it’d be so much more  efficient and be so much more amazing  so i i would again like to see that like  this is all you know and all these  things are created for choice and  control and  we we need to give that we need to  enable that for families i am  sure  uh i’m confident that if we  uh did the numbers and we figured it out  i think  we we wouldn’t actually need more money  to do much of this  yeah  that’s such an interesting take i think  um you know i could i could stand on my  soapbox forever and say care mediated  intervention is where it’s at but  everybody will sort of  feel well yeah you have a vested  interest in that now don’t you um and  yeah i do but i think um a big part of  my  um experience is from way before i  worked for autism 360. i went and did  part of my um  psych um undergrad in copenhagen  and of course you know scandinavian  exceptionalism they have a very  different focus and structure  to the way that their disability support  system is set up and at all times  the focus is on  reducing direct intervention with it  with a person with a disability and at  all times building up the network around  that person  to um  to build a community that can meet that  person’s need right so it’s a total  diversion away from this medical model  of disability and towards the social  model of disability and of course they  have direct interventions where  necessary a lot of that especially for  folks under 18 is connected with the um  education  system so it’s all very intertwined with  their education system um  and  it just has such a different outcome and  such a different feeling  when a child is picked up at school with  having  something going on the way that the  school intervenes is so incredibly  different  that  it made me realize  what families look like when they’re  being supported as a unit and what  families look like when there is  um a far more directed  specific to the person  um  funding model  what sorts of things um  you know contrasts to the  to those two approaches  um  do you see happening in australia dinesh  do you see any kind of care-mediated  stuff going on as of yet  or not really  i know i think um  i wonder if it’s enough actually  probably  probably not not like the what you were  just describing uh happens elsewhere  sounds amazing actually because it yeah  because you’re building it said you’re  building a community you’re empowering  people like it’s it’s just uh  yeah teaching a person to fish almost by  the sound of it  uh i don’t think we’re there just yet  having said that the  uh ndis and a lot of the schemes that we  have also fairly new you know it’s what  six seven years old something like that  yeah right at best so  i think there’s room for development i  think there’s room for uh evolution  i think there’s room for a lot of modern  ideas to come through so  but it’s going to take people to do that  it’s going to take people to craft that  it’s going to take our families and the  stakeholders that actually benefit from  this to be voices  and i think that’s one of the biggest  challenges is because uh  you know if you look at the ndis  the the  i don’t think at the moment there’s  anyone with a disability on the board  i don’t think in the leadership there’s  anyone with a disability as far as i  know  so but so how  we actually need people with lived  experiences we need their families  we need people like that to actually  drive these schemes so we can get the  best outcomes  um that we need and to to drive it in  the direction that we want  and now having said that we described  two different systems scandinavia we  described here  i gotta just highlight that again in a  place like sri lanka there is no ndis  there is nothing so we’re still we’re  still pretty  lucky  because there are many countries that  don’t have it but i think that’s again  more reason for us  to make sure that we are  taking this precious thing that we have  and not letting it erode  and molding it into something that’s  even better  yeah  absolutely we work

 

CHAPTER IV

um a lot of our staff  and a lot of our  um clients and patients come from the us  so there’s a really stark contrast even  within  the kind of autism 360 family of  australian clients who do have access to  this incredible  um  support system that is the ndis um and  then um people who are coming in from  the u.s side who’s who’s  whose access to support is so so  entirely different that looks really  really different chitrany did you want  to add anything yeah it’s interesting  how you mentioned about uh scandinavian  countries like um  when i did some study along those um  about those countries as well and uh  because uh my area of speciality is  spinal cord injury we have counseling  and um i’ve learned that when a person  is coming out of the hospital based on  their level of injury the funding and  everything else is ready when they get  discharged  into the community but it’s so different  here it just the planner decides what  the person gets and what the person is  not getting so  and um i think things will have to  change to that uh  level so then we could support people  better  otherwise they have to go back to the  community and they have to start  uh struggling and they just don’t get  that  quality of life out there because they  have the funding issues hanging over  them so yeah  i think we have to adopt better models  as well  and like dinesh said by third world  countries it’s a different kettle of  fish altogether  yeah absolutely i love the idea of  working  with what we have to build it better you  know we have  people around us who who  want and need us to kind of step up to  the plate and um  and shape what we have into what we need  um  i wanted to um speaking of kind of what  we have and what we need i wanted to  chat about your book  dinesh i want to hear about it i want to  hear about the  um inspiration behind it um and all that  kind of thing  well you know what uh it’s it’s funny  you asked me that because last night we  got the first copies of the book in the  mail  which was pretty  amazing to see it and hold it and uh  nelly you do  but you know what um it’s it’s uh  it’s been a  it’s been  a series of sliding doors events that  led to the book uh for a long time  my friends and  people that i knew were saying you  should write a book you got to write a  book and you got to talk about your  experiences but i ended up um thanks to  mom actually i ended up  attending a conference that i was  supposed to speak at in san francisco i  was gonna do it online but mom said no  no you should go and be there in person  and meet everyone and whatever else  so we went to san francisco uh in 2018  and there i met uh a friend jeremy  howick who became a friend  he’s an author and he read the wrote the  book uh dr you  so we became friends and he talked to me  about how to write a book and whatever  else  and then after a period of time  an author called jamila rizvi rang me  because she was writing a book and then  so i talked to her about uh writing my  own book so those two people um  encouraged me to do it and then  jamila actually uh made it a reality um  and i ended up signing up with pam  mcmillan to write the book  and here we are  uh it’s finally done so uh  it’s been quite a process in in terms of  just  revisiting everything that’s happened  and i just can’t believe how much has  happened during such a short  time  um but we also recorded the audio book a  couple of weeks ago and uh  um  i’m so far removed from the book now  because like when you read it so much  when you go through it so much you just  like you  you’ve lost yourself in it  so i don’t know how i feel about it  anymore i hope it reads well  but it’s kind of exciting to have it  come out later this month  absolutely chittarani what’s it been  like to  support and encourage and that kind of  thing and  um to have  you know an authored book that’s awesome  yeah  um  i must say i’m very lucky to be his  mother and dedicated to mom actually the  book is on the front  [Music]  and he’s such a blessing so  from the from the time of the accident  he never gave up on his dreams  so  he was always reaching to the stars  and  it made my job so much easier because he  never asked me even once why me  so he also he always went ahead with the  attitude why not me and i can’t do this  so it was quite um  yeah  he teaches me things that you know

 

CHAPTER V

i would have never known in my whole  life like you know  amazing and i think  together we are so strong  totally totally attest to that um  we’ll we’ll uh i’ll ask my final  question which is  you know you have an open slab platform  here to tell  carers to tell parents of kids with a  disability anything that you want them  to hear what do you want them to hear  from you  dinesh  um well a few things i guess you know um  the love between you  and uh  it’s it’s like nothing in this world  right the love of  a family the love of the people that  care for each other  um there is nothing like that in this  whole world there’s no stronger bond  so that is so precious  and i think you got to celebrate it and  we all have to celebrate it  because it’s what makes the world go  around it and it’s what makes lives  happen  so thank you for the love that you give  to each other and thank you for  uh  yeah being you i guess  you know like i often see just  little units like me and mom and uh  other other families other little  families getting around and  it’s such a special thing right that  that that thing that we have so i don’t  think  i think we should celebrate and never  underestimate it i think um  we are strong together and we can shape  what disability looks like in this  country and in the world

 

OUTRO

so i say that we  should always be together as a community  and that we fight together and we march  together and we  uh shape our systems into what we  want and what we will benefit from and i  think we should always be there for each  other in this community as well  yeah well said  what about you to thirani  yeah families make a huge difference in  a child’s life with or without  disability they make beautiful memories  families friends relatives cousins they  are the ones that we carry through to  our adulthood and they’re the memories  that we treasure  all the time so with or without a  disability love of a family goes a long  way so be there for them as much as you  could  and um all the community and the  friends that you make  along the along the journey  will make a huge difference in their  lives too  yep you’re absolutely right and i think  if there’s um  any example that our awesome like  families on the on the program and that  kind of thing could follow  you guys are a good one so thank you for  joining me today i do appreciate your  time  um and i hopefully will be able to you  know chat again once your book is out  chat again once  um you know  things are changing in the industry and  you know we’ve got more things to  to rant about so thank you for coming um  and  we will chat again soon  thanks thanks for having us you guys are  amazing  thank you so much for having us ella bye

Summary
Disability and Hope with Dr Dinesh Palipana & Chithrani Palipana
Article Name
Disability and Hope with Dr Dinesh Palipana & Chithrani Palipana
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A medical degree, an unstoppable team and a story of how families are the strongest force we have for good. We can't wait for you to hear their story. Dr Dinesh Palipana is a Doctor, Lawyer, Researcher and Disability Advocate working in one of the busiest EDs in the country- he also happens to be disabled. Dinesh and his Mum, Chirthrani Palipana talk about how a family is the best hope a child with a disability has, and how carers can support their family members to reach their potential! whether that be a doctor, a lawyer or living independently!
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Autism 360
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