Submission 44 — SDN Childrens Services — Select Committee on Autism | External submission

SDN Children’s Services

ABN 23 000 014 335

86-90 Bay Street, Broadway, NSW 2007

PO Box 654, Broadway, NSW 2007

children’s services

www.sdn.org.au

Submission to the Select Committee on Autism

July 2020

SDN Children’s Services

Www.sdn.org.au

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SUBMISSION TO THE SELECT COMMITTEE ON AUTISM

Executive Summary This submission from SDN Children’s Services is based on our experience as a provider of inclusive early learning, NDIS therapies and other support to families, as well as feedback from 63 families of children with a diagnosis of autism spectrum disorder (ASD) engaged in our services.

Families were emailed a link to an online survey with questions based on the terms of reference. We encouraged them to share their experiences with us in order to contribute to our submission. The families who received the survey had one or more children with a diagnosis of ASD and were engaged with our early learning or NDIS children’s therapies, on a waitlist, or were previously engaged with our services.

We were heartened to receive so many responses from families covering a broad range of perspectives and experiences. Despite this variation, the following issues resonated strongly with a large number of respondents:

The need for improved access to and consistency of diagnosis
Waiting times for services
Isolation and barriers to inclusion. Some parents kept their comments brief while others shared more details about the challenges they have faced. Some of the comments, particularly regarding isolation and lack of inclusion, were deeply moving, and we hope these will inform efforts to improve support to families.

The feedback from families aligns with the evidence available in literature, and the experience and insights that SDN itself has gained over a number of years as a provider of early childhood interventions for children with autism spectrum disorders.

About the SDN Group (SDN) SDN Children’s Services is a not-for-profit organisation established in 1905 and is one of Australia’s most experienced and trusted leaders in mainstream early education and childcare, disability services for children, and family support. The SDN Group includes a wholly-owned subsidiary, SDN Child and Family Services Pty Ltd.

Our purpose is to promote and enhance children’s wellbeing, learning and development in inclusive environments. We provide high-quality children’s therapies and inclusive early childhood education and ensure our services are safe, affordable, inclusive and as inspiring as possible. We build strong connections within communities, challenge discrimination and help remove barriers to full inclusion.

We believe in the rights of children as articulated in the United Nations Convention on the Rights of the Child and are committed to social and educational inclusion. Through our strategy we seek to enhance the wellbeing of children and to make sure that children facing challenges have a place in the services we operate, support and advocate for.

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We operate an integrated model of service delivery using our Pathways Approach that brings together our expertise in mainstream and specialised service delivery. In all, around 5,000 children, families and other service providers benefit from SDN’s work each year.

We have many years of experience partnering with families with children with Autism Spectrum Disorder. We are a registered NDIS Provider and offer therapies for children from early childhood until transition to high school, with a focus on children with autism.

SDN welcomes children with disability into our mainstream early learning centres and preschools, with a strong focus on inclusive education. We also operate SDN Beranga Autism Specific Preschool in Rooty Hill, NSW, supporting families to engage in early learning and therapy for children with a diagnosis of autism. There is a high demand for the service and vulnerable families and children at risk are prioritised for access.

SDN was selected by the NDIA to trial the Early Childhood Early intervention (ECEI) approach in the Nepean Blue Mountains in NSW, and provided transitional services funded by the NSW Government across metropolitan Sydney from 2017 to 2018. The NDIA also selected SDN as one of two ECEI Transition Advisors to mentor and coach early intervention organisations across NSW.

More information about SDN is available at: www.sdn.org.au

Families’ experiences: the literature Parents of children with an Autism Spectrum Disorder (ASD) often report high levels of stress and mental health issues associated with the challenges of raising a child with complex needs (Weiss, Wingsiong & Lunsky 20141). These issues are often compounded by having to navigate multiple service sectors to address the specific needs of their children. Many parents have difficulty sustaining regular work due to problems with accessing and sustaining quality childcare. Mothers of children with ASD report greater emotional problems compared with mothers of children with intellectual disability without ASD, and compared with mothers of typically developing children (Totsika et al., 20112). Evidence also suggests that elevated stress and related impact on parent and child psychological wellbeing indirectly affect parenting behaviour and child outcomes.

The stressors families with a child with an ASD face include:

Being asked to remove their child from an early childhood education and care or school situation because the educators could no longer manage (White et al. 20123);
Being told frequently that their child has lost control, threatened or hurt someone (White et al. 2012);
Receiving frequent phone calls from school or early childhood education and care (White et al. 2012);

1 Weiss, J.A., Wingsiong, A., & Lunsky, Y. (2014). Defining crisis in families of individuals with autism spectrum disorders. Autism.Nov; 18(8): 985-995. 2 Totsika, V., Hastings, R.P., Emerson, E., Lancaster, G.A., Berridge, et al. (2013). Is there a bidirectional relationship between maternal wellbeing and child behavior problems in autism spectrum disorders? Longitudinal al=analysis of a population defined sample of young children. AutismResearch.June 6(3):201-211 3 White, S.E., McMorris, C., Weiss, J.A., et al. (2012). The experience of crisis I families of individuals with autism spectrum disorder across the lifespan. JournalofChildandFamilyStudies21(3): 457-465. 3 of 20

e Higher medical expenses compared to children without an ASD due to high comorbidity of psychiatric and behavioural disorders in children with an ASD (McArthy, 2007%);

e The added strain of day-to-day care responsibilities and the time required to attend health appointments;

e Having difficulty accessing or sustaining work as work is dependent on the availability of appropriate and affordable early childhood education and care and after school care (Loynes, 2001°);

e Lack of financial resources due to inconsistency of work and then the compounding stressors that result from poverty including unsustainable housing, poor nutrition and compromised safety and wellbeing.

Studies that have examined the experience of crisis in families of people with an ASD found that child behaviour was the most frequent subtheme (Weiss, Wingsiong & Lunsky 2014°) and are the most consistent predictor of parental stress, marital breakdown and decisions to seek out of home care (Novita Children’s Services, 20147; Nankervis et al 2011°).

Families’ experiences: family voices SDN also sought feedback from families engaged in our services so that their voices could be heard as part of this inquiry.

We heard from 63 families who have a child or children with an ASD via an anonymous survey. The families were current or former clients of SDN in any of our service types, or were on a waiting list for an SDN service.

The responses from families have been organised under the key elements from the inquiry terms of reference. SDN received so many comments from families in relation to some elements of the terms of reference that we included a selection of comments in the body of the submission, with the full range of responses in the appendix.

Having our son diagnosed turned our world around. It filled us initially with so much worry, so many questions. We suddenly became afraid of the future. We began worrying about whether he will fit in and whether he will be accepted by his peers or will he live a life of being bullied? We scrambled to find the right therapies for him, and worried about the cost, not only financially, but we needed to invest our emotions, strength and time in it. We had to dedicate our lives to helping him overcome his struggles.

McArthy, J. (2007). Children with Autism Spectrum Disorders and intellectual disability: current opinion. Psychiatry 20(5): 472476 > Loynes, F. (2001) The impact of autism: a report compiled for the All Party Parliamentary Group on Autism. ° Weiss, J.A., Wingsiong, A., & Lunsky, Y. (2014). Defining crisis in families of individuals with autism spectrum disorders. Autism. Nov; 18(8): 985-995. ” Novita Children’s Services (2014). Supporting families: factors contributing to children and young people with disability living in voluntary out-of-home care. The Department of Communities and Social Inclusion, South Australia. ® Nankervis,K., Rosewarne, A. & Vassos, M. (2011). Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care. Journal of Intellectual Disability Research. Vol. 55(4). 422-433.

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a. current approaches and barriers to consistent, timely and best practice autism diagnosis;

SDN asked families about their experience with diagnosis of autism. While 22% of survey respondents reported an ‘OK’ experience of diagnosis, and 12% made no comment, 48% of respondents commented on the length of time to access diagnosis, the out of pocket cost for diagnosis; and the stress and feelings of being overwhelmed.

Comments suggest that:

wait times are long for both private and publicly funded diagnosis;
there are significant differences between methods of diagnosis, with some taking one visit to a paediatrician and others requiring multiple assessments and consultations;
many families find the diagnosis process to be more stressful than they believe it should be, and for some it is traumatic, with the process putting strain on families with no clearly identified services that can support the family through the process.

Families said:

Wepaidforaprivateclinictocompletethetestingrequiredfordiagnosisasthepublic

waitlistwas18monthslong.

TookclosetoayearasIneededreportsfromspeech,OT,psychandpaediatrician.There

werewaitstoseeallthespecialists,waitstogetthereports.Thevisitsandthereportswere quiteexpensive,andIhadtospacethemouttoaffordthem.

Wewerelookingatawaitinglisttimeofbetween6-11months.Thediagnosiscostalso

variedbetweenpaediatricians/thosequalifiedtoprovidethediagnosis.Weunderstandthat thediagnosiscanrangeinSydneyfrom$960to$1400perhour.

Ourdiagnosisjourneytookalmostthreeyearsandcostwellover$5,000.

Itwaslong,expensiveanddifficult.

Thewaitwasexcruciatinglylong.

Theexperiencewaslongbutthoroughandwentover2years.

Ittookanumberofyearsbeforesheunderwentformalassessment.

Ittookalongtimeandwewentprivatethatcost$2000.

Ittook2yearstogetfundingforitoranyonetolistenthatheneededadiagnosis.

Theprocesswasverylongbecauseatthetimemysonwasn’teven2anditwassohardto

getaDrtolistenespeciallybecauseofhisagegroup.

Ifeelthattheassessmentthatisdonewithachildtodiagnosethemwithautismisnot

appropriate.Iattendedmychild’sassessmentwasnothappywithhowtheyconductedit.I

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believethatwhiledoingtheassessmenttheyshouldconsiderthechild’sstrengthand weaknessesratherthangivingthemthingstodowhichtheyhaveneverdonebefore.It shouldalsobeculturallyappropriatetothechildandfamily.

e. the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;

Families were asked about the availability and quality of the autism services and the professionals they have interacted with. Responses reflect the high demand for services and concerns regarding the adequacy of these, including government services and those provided through the private and NGO sectors.

While 11% of respondents commented positively, 89% commented on long waiting times and difficulties with the process to access services. Some also commented on the quality of the services accessed.

Families said:

NDIShashelpedustremendously.Thetherapistswe’vegottenforoursonhaveworked wellwithus,andinconjunctionwithoneanother.Sometimesitcanbedifficulttoavailof servicesrightawayasthereisalongqueueandwaitlist

Therearenotenoughservicesavailable,waitingtimesaretoolongleavingchildrento

continuetoregressandfamiliesnotknowingthetoolsandstrategiestoimplementat home.

ForthelasttwoyearsIhavehadnotherapyformyson.Ihavecalledaround,beengiven

numbersandplacesfrompaediatricianandstillunsuccessful.

Theautismserviceswerequitehardtofindinourarea.Wemostlyrelyoninformation

providedbyotherfamilies.Findingtherapistswasquiteawork.Westruggled;wedid researchonline.Therewerelotsofinformationonline,butnoonecouldhelpusdirectly.In myexperience,findingrighttherapistandwhatservicesweneedwereconfusing.

Theavailabilityofservicesavailableisgood,howeverIfeelthequalitycouldimprove.The

NDIShasbeenamazingintermsofservicesasourfamilywouldnotbeabletoafford currenttherapiesoursonisreceiving,theissueisparticularlywithpsychologiststheyare newtothefieldanddonothavetheexperiencethatyougainovertheyearstoprovide propersupport.Thepsychologiststhatareexperiencedwithautismhavelongwaitinglists.

IalsofelttherewaslackofinformationandsupportaroundchildrenwhohaveAutismwith

intellectualdisability

ItisveryhardtofindaveryprofessionalserviceproviderforautismeveninSydney,wetried

manydifferentserviceprovidersinlasttwoyears.Theservicepriceistoohighforparentsto payevenwithNDISfunding.There’shalfyearweranoutofthefunding.

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f. the interaction between services provided by the Commonwealth, state and local governments.

Some families also commented specifically on the interaction of services funded by

different levels or areas of government.

Families said:

Morecontactandcommunicationwitheachother.Ifoundwearealwaysrelaying

messagesfromonetotheother.

Ifeelitisalsoimportanttonotethehugedifficultieswiththedepartmentofeducationand

therapyservicesworkingtogether.Mysonisinaspecialistsupportclassandisunableto havetherapistattendschoolwhichmeansalltherapyhastobecompletedafterschoolor hehasthedayoff.Boththesescenariosarenotideal,oneofmyson’smainissuesisroutine andhavingtheroutinebrokenittakestimeforhimtoadjustifthereisaslightchange.The lackofcommunicationbetweentheschoolandtherapistsisalsopoor.Consideringchildren withASDattendschool5daysaweekfor7hourseachday,itwouldbeexpectedschool, therapistsandfamiliesareateam.Sadly,thisisn’tthecase,itfeelsasthoughtheyare separateentitieswhichmakesitextremelydifficulttomakeprogress,thereisnoconsistency inwhatisbeingtaughtatschoolandhomeintermsofregulationandbehaviour managementstrategies.

h. the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people.

More than half of respondents commented on issues they had with the NDIS and the NDIA, including difficult experiences working with the NDIA and the variation in the skills and knowledge of the planners, inadequate levels of funding and long waiting times to access funding or services.

Families said:

IhavehadafewproblemswithNDISbutonceIgottherightpersontohelpIfoundthe

NDIStobeveryunderstanding.

Myplanmanagerisextremelysupportive,shesuggestedanintensiveplanasI’masingle

motheroftwinswithautismandsheunderstandsthelevelofstressthatcomeswiththat.

Mychildhassuddenlycomeupwithriskybehaviours6monthsintomyplan.Idon’thave

enoughfundingformoretherapyandwastoldtojustcanceltherapy.I’malreadydoing andputthattoanewserviceeventhoughcurrenttherapyishelpingandsmallprogressis beingmade.NDISwasunabletogivemeanexpectedwaittimeforareviewandmychild’s behaviourisaffectingoureverydaylivestothepointwecannolongeraccessthe communityorfamily.

Waiting9monthsforfundingafterdiagnosis.Earlyinterventionisextremelyimportant.

Makingachildwaitthatlongandafamilyhangingofftheedgejustwaitingiscrazy.The

fundingisalwayscutshortthefollowingyearbutiftheyunderstooddisability,theywould knowthingscanchangeandchildrenrequireadditionaltreatmentsthatweren’tdiscussed intheplanningmeeting

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Wewereunabletogetapsychologistforthe12monthsandNDISreducedourfunding

downaswehadn’tbeenabletousetheservices.Thenextyearwhenwewereabletogeta psychologist,butwearelimitedtohowmanysessionswecanhaveaswedon’thave enoughfundingnow

Family responses indicate general satisfaction with their ECEI provider but concerns with the length of time taken to go through the process. There is some indication that ECEI is not delivering the short-term intervention that the program is intended to provide.

ItwastheworstaspectofmyengagementwithNDIS.Togetmydaughtereventheinitial

appointmentIhadtoring3-4timesafortnightfor6months,whenmyunderstandingis childrenaremeanttobeseenin2weeks.EverytimeIrang,Iwastoldsomeonewouldbe incontactinthenext2weekstomakeanappointment.IntheendIonlygotan appointmentbythreateningtocomplaintotheNDIA.Inthemeantimewewere desperatelytryingtoself-fundtreatment,whichcreatedhugefinancialstressforus.Even withthat,wemissedvaluableinterventiontimebecauseof[the]awfulservice.Thestressit createdwasincredible.

ECEIwasallaboutNDIS,sometimeswefeltalltheywantisourNDISmoney.Itwasnever aboutyourkidandwhatproblemswearefacing.

Veryappreciativeandgratefulthattheygoaboveandbeyondforwhatyourchildneeds

Wearegratefulforitallowingustogetourdiagnosis,butitwasaslow,confusingprocess

thatchangedtwiceduringtheprocess.

k. the social inclusion and participation of autistic people within the economy and community.

We asked families to tell us about their experience of inclusion and/or participation in their community. While 23% commented on increasing awareness of Autism in the community and personal connections with specific community activities, an overwhelming 77% of respondents told us about not being included, limited opportunities for their child, and feeling isolated due to having a child with an ASD.

Families said:

Wehavefounditdifficult,notalotof“normalfamilies”wouldunderstandusonadayto

daybasis.Itsquitestressfulattimeswhentherearecertainthingswecangotobecauseof loudnoises,thecrowdedspaces.

Therapysucksalotoftimethatotherswouldspendonconnection.Allthecostsnot

coveredbyNDIStakethemoneythatotherswouldspendoncommunityactivities.We spendasmuchonthatasmostfamiliesdoontheirhousingcosts.NDIS’insistencetheywill onlyfund“disabilityspecific”programsmeansourkidsmisstherapeuticopportunitiesthat wouldalsohelpthembuildsocialconnectionsinthecommunity.Anyattempttoraise issueswiththeNDISmakesusfeelvoicelessandpowerless.Iftheaimwastodesigna systemtoisolatefamilieswithdisabilities,underminetheirmentalhealthanddisempower themtheNDISisdoingabang-upjob.

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Goingtomydaughter’sschoolassemblywithmyautisticsonwasverypainfulbecausehe

wouldjusthavemeltdownsandnothingIcoulddotokeephimcalmnotevennoise cancellingheadphonesIhadothermumsalwayssayingsomethingtomeaboutthenoiseI evenhadateachercomplaintomeaboutthenoisegoingoutonthebustrainorshopping centres.Ihavethesameproblem.Peoplearenotunderstanding.

Westruggletoaccesscommunitysupportsasmychildisshowingundesirablebehaviours

toothers.Thisisleavingusexhaustedasparentsandsecluded.

Wehadcalledover72daycares

Itisveryimportanttoeducatechildcarecentrewithautism.Therearenotmanychildcare

understandonhowtohelpchildrenwithautism.Childcareisveryimportantbecauseitis likethesafeplaceforparentstoputtheirkidsintheircarewhiletheyareabletohavea break,respiteorevenworking.

Families’ experiences: case study of the benefits of an integrated service The inquiry terms of reference also include the social and economic cost of failing to provide adequate and appropriate services, and something which is evident throughout this submission is the stress and hardship faced by families.

The feedback from families identifies many challenges and criticisms of the services and support available. However, innovative wrap-around services to support families with a wholistic approach have been very effective in addressing families’ needs.

In 2011, SDN was funded by the NSW Government to establish SDN Beranga as an Autism Early Years Demonstration Service with two parts:

A long day care centre for 24 children aged between 2-6 years with ASD per day (Lighthouse Centre). The centre prioritised children at risk and vulnerable families.
Outreach services to 13 childcare centres operated by a range of providers (Satellite Centres) that were supported to develop autism-specific practices.

Our model was built on 3 layers of practice:

high quality early childhood education and care practices
best practice early childhood intervention strategies, and
combined autism-specific approaches. SDN contracted an external consultant to build and test a model for monetising the benefits of SDN Beranga in the long day care and satellite program format. The modelling used publicly available costing information and SDN estimates of out of home care conversions and escalations from our experience in working with children at Beranga.

This analysis showed that the long day care and satellite program model yielded benefits in three areas which it was possible to “monetise” in the short-medium term:

Reduced need for special education in favour of education in a supported environment in a mainstream school.
Reductions in child safety investigations and child removals into OOHC. 9 of 20

For children already in OOHC when arriving at SDN Beranga, a cessation of escalation into higher intensity out-of-home care costs.

The projected possible financial payback to the state government for these three areas was estimated at over $15.2 million per year. This demonstrated the clear economic and social benefits of operating such a service for families, the community and governments.

The cessation of NSW funding for SDN’s Beranga at the end of the 2017/2018 financial year created a significant shortfall in funds available to sustainably operate and necessitated a transition to a community preschool for 3-5 year old children with ASD without a satellite program. The change to the model meant that the level of support we could provide to families was reduced, and therefore the potential financial benefits to governments were also reduced.

Conclusion SDN Children’s Services hope that the voices of families of children with autism shared in this submission will inform the Senate Select Committee about the challenges they face, particularly regarding access to diagnosis and services, and the barriers to, or lack of, inclusion in the community.

SDN intends to use these insights to improve the experience of children with ASD and their families as they enter and take part in our own services. However there are many parts of the family journey that providers such as SDN are not able to influence, and require system changes at a national level.

We thank the Select Committee for this opportunity to contribute to the inquiry and are willing to provide any further advice.

SDN will continue working with children with autism and their families and will keep them informed of any developments with this inquiry, including providing a copy of this submission.

For further information: Contact:

Kay Turner

Chief Executive Officer

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Appendix: further responses from families a. current approaches and barriers to consistent, timely and best practice autism diagnosis;

Wepaidforaprivateclinictocompletethetestingrequiredfordiagnosisasthepublic

waitlistwas18monthslong.

TookclosetoayearasIneededreportsfromspeech,OT,psychandpaediatrician.There

werewaitstoseeallthespecialists,waitstogetthereports.Thevisitsandthereportswere quiteexpensive,andIhadtospacethemouttoaffordthem.

Wewerelookingatawaitinglisttimeofbetween6-11months.Thediagnosiscostalso

variedbetweenpaediatricians/thosequalifiedtoprovidethediagnosis.Weunderstandthat thediagnosiscanrangeinSydneyfrom$960to$1400perhour.

Thereferrals,thebookinginappointmentswhichsomeareupto3monthwaitlist,the

tests,thewaitingofthetestresults,thelackofpaediatricianavailableduringtheweek, bookinginforwhenthepaediatricianisavailableandaccessingandthediagnostic[sic].

Fairlycomplicated,uncertain&stressful.Deficitsonlyfocus.Nothingpositiveaboutour

child’sstrengthsatall.NothingpositiveaboutAutismatall.Onlyseenasaproblemrather thanadifference!

Ourdiagnosisjourneytookalmostthreeyearsandcostwellover$5,000.

Occupationaltherapyx6Speechx6Psychvisitsaround8timesthentoa[paediatrician]to

showreportswherehewasdiagnosed.

Verytraumatic.

Itisverydifficult.Timeconsuming.Takeslotsofenergyandfight

Itwaslong,expensiveanddifficult.

Thewaitwasexcruciatinglylong.

Theexperiencewaslongbutthoroughandwentover2years.

Ittookanumberofyearsbeforesheunderwentformalassessment.

Ittookalongtimeandwewentprivatethatcost$2000.

Longprocess.Lotsofdifferenttestswithdifferentprofessionals.

Thepriceforhertogetadiagnosisreportwasapproximately$1,500.

Lengthy.Tookmorethan6monthsforthewait.Depressing!

Idobelievethecostinvolvedissometimesexorbitant

Ittook2yearstogetfundingforitoranyonetolistenthatheneededadiagnosis.

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Veryslowandlongwaiting.Childrenshouldgetfasteronestopsupportratherthan

runningdifferentserviceswithlongwaiting.

Theprocesswasverylongbecauseatthetimemysonwasn’teven2anditwassohardto

getaDrtolistenespeciallybecauseofhisagegroup.

Ifeelthattheassessmentthatisdonewithachildtodiagnosethemwithautismisnot

appropriate.Iattendedmychild’sassessmentwasnothappywithhowtheyconductedit.I believethatwhiledoingtheassessmenttheyshouldconsiderthechild’sstrengthand weaknessesratherthangivingthemthingstodowhichtheyhaveneverdonebefore.It shouldalsobeculturallyappropriatetothechildandfamily.

e. the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;

Notenougharound.Lackofknowledge

Therearenotenoughprofessionalstoprovideservices.Thereisaverylongwaittoreceive

services.

Oncemyeldestwasdiagnosedwewerenotdirectedtoanyservices,otherthanthe

paediatrician,toassistuswithwhatthediagnosismeantandwhatserviceswecanaccess.2 yearsdownthetrackIamstilllearningaboutwhatservicesareavailabletomysonandour family.

AsanautismprofessionalIexpectthemtobeabletohelpmewiththechallengesthatIface

withmychildhoweverIfeelliketheyhaveverylittleeducationandexperienceonhowto dealwithit.Someprofessionalsarethereonlyformoney.

It’sveryhardwhenfamiliesareplacedonwaitinglists,wehavebeenveryluckytohave

serviceswehaveforourdaughter

Ihadtobeonlongwaitlistsaswellassiftthruallthedifferentphilosophystylesoftherapy

especiallytowardsAutismtofindachildled&familyledtherapist!

NDIShashelpedustremendously.Thetherapistswe’vegottenforoursonhaveworked wellwithus,andinconjunctionwithoneanother.Sometimesitcanbedifficulttoavailof servicesrightawayasthereisalongqueueandwaitlist

ThereisawaitlisteverywherewithAutismservicesthatismyonlyconcern,youendupwith

aspotit’sjustamatterofwhenandwhere.

Therearenotenoughservicesavailable,waitingtimesaretoolongleavingchildrento

continuetoregressandfamiliesnotknowingthetoolsandstrategiestoimplementat home.

ThereneedstobemoreavailablealliedhealthandalsosupportforfamiliesthatNDIScan

coversuchashomedomestichelp

Notenoughservicesespeciallypsychs

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WealwaysseehighwaitingtimesforservicesWearegettingserviced,buttheeffectiveness

andresultsareatveryslowpace

Verydifficulttofindandlongwaitingtime.Veryexpensiveaswell

Verylessprofessionalsavailableandtheyareinfulldemand.VeryhardtogetanOTor

Speechpathologistforthesession.Also,verydifficulttogetbehaviouraltherapist.

ForthelasttwoyearsIhavehadnotherapyformyson.Ihavecalledaround,beengiven

numbersandplacesfrompaediatricianandstillunsuccessful.

Ihavefoundtherearelongwaitinglistsforservices.MychildrenhaveADHDaswellwhich

meansmanyASDapproachesdon’tworkforthem.

Overall,Iwouldsayitwasbeenagoodexperience.TheLENGTHYwaitperiodsforservices

howeveroverrideanygoodexperience.Therearefewprofessionalsavailablethatisready whenyouneeditmost.

Allthespecialiststhatwewentandtalkedtoareveryniceandveryfriendlyand

professional.Theavailabilityofotherservicesisabitlow;youwillbeonwaitinglistsothere isnoassurancethatyou’llgetaspot.

ParentswithfirstASDdiagnosisgettingdifficultiestofindtherighttherapistand

interventionprogramfortheirchildren.Sometimesweneedtotryforcoupleofmonthsto findoutwhetherthetherapyworkswellornotbeforefindinganothertherapyorprovider.

Longwaitinglisttogettherapyandfundingisaproblemasfamilystrugglingdaytodayto

survive.

Thelackofcontinuitybetweenthemandtheunderstandingofautismthemselves

Theautismserviceswerequitehardtofindinourarea.Wemostlyrelyoninformation

Thereareinsufficientautismspecialistsinmyarea.Thepsychologistwhommychildis

seeingdoesn’texactlymakeusfeelcomfortable.

Availabilityislessbutqualityisgood.

Theavailabilityofservicesavailableisgood,howeverIfeelthequalitycouldimprove.The

IalsofelttherewaslackofinformationandsupportaroundchildrenwhohaveAutismwith

intellectualdisability

Quitelacking.Thewaitinglistforcommunitycentreislongsowehadtogoprivate,which

wasalongwaitlistaswaybutstillslightlyfaster

Justeverywhereyougoit’sallwaitinglist

Theavailabilityoftransitiontoschoolandspecialistschoolingoptionsseemstobelimited.

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FormeIdohopethey’llexpandtheirautismservices/professionals.Ihopethey’remore

accessibletherapistsaroundindifferentareathatcanhaveaneasyaccessto.

Mysonhasalwaysbeenputtowaitinglist.Notenoughfundstoincreasefrequencyof

therapy.Lackofsupportfromtheschoolintermsofasupportworker.Someprovidersare farfrommyhome

ThisisveryfrustratingthatIamwaitingfromAugustlastyearforspeechtherapist…still

didn’tgetanyresponsesfromthem…thankgodonlygettingtoafterwaitingfor5months!!

Someproviderstakemoneywithoutprovidingtheservice,

Thereisnoneinmyarea,theclosestoneis45minutesaway

Availabilityisnotenough,qualityisfine.

LivinginwesternSydneythereisnotallotofservicesavailable,butwehavebeenincontact

withtheautismadvisoryserviceandtheyhavehelpedsignificantlywealsofoundSDNtobe agreatpreschoolformysonandhe’sneeds

SofarallofthemhavebeensupportiveandI’velearnedalotfromthemthroughwhichI

canhelpmychild.

ItisveryhardtofindaveryprofessionalserviceproviderforautismeveninSydney,wetried

manydifferentserviceprovidersinlasttwoyears.Theservicepriceistoohighforparentsto payevenwithNDISfunding.There’shalfyearweranoutofthefunding.

Ihavehadmanysupportworkerscallinsickandornotrespondsowehavenotbeenable

togetintothecommunityinthewayIhoped.Ihavealsobeentryingtofindaspeech therapistthatcanworkwithusattheschoolbutI’malsostillonawaitinglistforthose

SomeoftheserviceprovidersareonlybehindthefundsthatNDISprovided,somedo

religiously.It’shardforparentstofindtherightoneandtheiravailability.Thereshouldbea ratingandassessmentsdoneonthecentres.

Ifeeleveryonewhohasbeeninvolvedwithautismserviceshasbeensupportive.

Limitedavailabilityofservices.EspeciallyservicesthatcangointoschoolenvironmentLong

waitlistsWehaveusedanOTthatwasquiteaggressivewithmysonwhoendedupbeing soscaredofherhewouldrunawaywhenshewouldturnup

MostAutismserviceshavelengthywaitlists.Weseeaspeechpathologist,physiotherapist

andanoccupationaltherapist.WehavebeentoldwearenotfundedbyNDISformy daughtertoattendapsychologistasshehashighanxiety,sowemayneedtoself-fundthis infuture.Thetherapistsaremixed-therearebrilliantonesoutthere,butittakesalotoftrial anderrortofindthem.ThereisnohandholdingafteranAutismdiagnosis,norarethere government-fundedsupportgroupsavailable.Irelyheavilyonotherparents.Notenough autismservices/professionals.

Lackofautismservicesaroundthearea,Ithinkitneedsmoreautismservicesthat’s

accessibleineverysuburb

IdidalsofindthattherewerenotalotofavailableChildPsychologistsinmylocalareathat

weretakingnewpatients.

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Thelackofservicesinmyarea

Longwaitingforeveryservice.

RegionalNSWnotmanytherapistsandlongwaitinglists.

Wewereunabletogetapsychologistforthefirst2years

Muchgreaterneedforavailabilityinthearea,lotsareonlongwaiting lists.

Oncetheprofessionalsarelocated(aprocesswhichcantakeweeks(ifnotmonths)and

literallyalmost100ormorephonecallsintotal),theyhavebeengreatandwonderful therapistsandclinicians.However,becausetheyhavesuchgoodreputations,orthequality ofthefacilitiestheyrunhavegoodreputations,therecanbelongwaitinglistsformostof themandthenquiteprohibitivecoststosustainongoingcareonaprivatebasisoroutside ofNDIS.

IhavefoundsinceNDIStherearelongerwaitstoseeservices.Therearealotofgood

servicesbutalsosomedodgyonesTheydon’tcareaboutfamilyindividualneedsorcultural needs

Thereareplentyofprivatetherapies,buttheyareexpensive

Thewaitinglistsarecrazylong.Sometherapistsarenotequippedordon’twanttodeal

withthemoresevereorchallengingcasesofASD.

h. the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people.

IhavehadafewproblemswithNDISbutonceIgottherightpersontohelpIfoundthe

NDIStobeveryunderstanding.

Theplantookalittlelongertoprocessthannormalbutdidnotimpactonaccessto

therapy.WhenwephonedtheNDIStheyremediedthissituationquickly.

Ifiledareviewformysonduetofundingcuts,Iexplainedwhyextrafundswereneeded

withdetail.Althoughtheactualreviewtook5months,theplanwasrenewedfor12 monthsandNDISdidlistenandadequatefundingwasprovided.

Theserviceprovider/contactfortheNDISplanthisyearhasdemonstratedinher

communicationandinformationprovisionthatsheunderstandsthecomplexityofhavinga childwithautism.

Myplanmanagerisextremelysupportive,shesuggestedanintensiveplanasI’masingle

motheroftwinswithautismandsheunderstandsthelevelofstressthatcomeswiththat.

Idon’tthinktheNDISreallyunderstandeveryone’sneeds.

MynewcontactfromNDISwasmosthelpful.Waymorehelpfulthattheladywehavehad

forthepast3or4years.Ithinktheyknowyouandbecomeabitcomplacentandabit dismissive.

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OurcurrentNDISsupportpersonseemstoOKbuttheonewehadlastyearleftandthey

didn’tadviseus.Wehadbeenwaitingforsomeassistanceandkeepleavingmessages, emailsetcbutwedidn’tknowtilabout6monthslatershehadleftherjob.Shewastrying tosortsomeplanissuesoutforusthatnevergotsorted.Theydon’thavethetimetoalways assist

NDIAshowsomeunderstandingbutnotthefullunderstanding.Therapybudgetsarecut everyyear.IthinkNDIAhaveamentalityof“onesizefitsall”

DelayedresponseinordertoprovideNDISassessmentandfunding.

WhenhavingNDISplanreviewswithdifferentproviderseachtimeandhavingno

consistencyincontactpeoplemakestheprocessverydifficult.Eachtimethereiscontact youhavetoexplainyourchild’scircumstancesasitiseithernotrecordedanywherethestaff membercanaccessortheydonotreadit.SomeNDIAstaff/providershavean understandingofhealthcareand/ordisabilitiesandsomeveryclearlydonot.Thisisevident intheircommunicationandprovisionornotofinformation.

NDISshouldbeabletoprovideyouwithamanagerstraightawayoratleasthelpyou secureonetohelpfromthere.Alotofworkingmumsdonothavethetimetofindanother agency,Iunderstandthefutureforourkidsgetthatpartbutthinkofthestressitcauses??

Mychildhassuddenlycomeupwithriskybehaviours6monthsintomyplan.Idon’thave

Fundingisalwaysissue.Feelslikeyouneedtofightforit.

Notenoughfundstosupport.

Theyseemtohavenounderstandingofthehugeimpactithadonthewholefamilysystem,

gettingtoalltheappointments,doingthetherapy,jumpingthroughallthehoopsontop ofcopingwithhowhardeverylittlebitoflifeiswhenyourkidsareinthespectrum.Their systemsplacenovalueontheparentasanexpertintheirchild,everythingIknowabout mychildhadtobewritteninareportbyahealthprofessionalforittobecounted.Theyare slow,unresponsiveandthereisnotransparencyaboutwhatwillandwon’tbefunded.

Waiting9monthsforfundingafterdiagnosis.Earlyinterventionisextremelyimportant.

Makingachildwaitthatlongandafamilyhangingofftheedgejustwaitingiscrazy.The

fundingisalwayscutshortthefollowingyearbutiftheyunderstooddisability,theywould knowthingscanchangeandchildrenrequireadditionaltreatmentsthatweren’tdiscussed intheplanningmeeting

AccessingNDISwaslongandtiringprocess.Someinformationwereconfusing,itwasn’t

clearcut.

Theydon’thelptoprovidefundingforwhatthetherapistandpaediatricstoldustogive

him.

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Insufficientfundingisgivenforsupportworkforthechild,whichcomesunderCommunity

Participation.Feesforsupportworkersandeventsvaryquiteabit,andveryoftenthe

fundingrunsoutwaybeforethe12monthsareup.

Theydon’tunderstandanything,howharditistolivewithachildTheydon’treadthe

reportsTheydon’tcareTheydon’tdoeverythingcorrectlyTheydon’tlistenTheythinkwe areanumberEvery3monthswhentheydoreviewsit’snotfair.Somethingstakealong slowprocess.Theyshoulddoreviewsevery2-3years.

NDIAisnotunderstandingparentswithautism.ParentsknowbetterthanNDIAhowcan helpthekidachievehisbest,butNDIAdoesn’tlistentoparent.Also,NDIAisnot understandingAutismkids.

Ifyourfundingisn’tused,theycutitbutitmightnotbeusedasyourwaitingforservices.

Thismaycomeinthenextyear,butyoucanaccessthisbecausethefundinghasbeencut

Wewereunabletogetapsychologistforthe12monthsandNDISreducedourfunding

downaswehadn’tbeenabletousetheservices.Thenextyearwhenwewereabletogeta psychologist,butwearelimitedtohowmanysessionswecanhaveaswedon’thave enoughfundingnow

TheNDISserviceisagreattoolandcertainlytheavailabilityofitiswhywe’vemovedto

Australia(andtakingadvantageofourexistingAustraliancitizenship).Howeverthenumber

ofhoopstojumpthroughthattheNDIAinsistsonsuchaslevelsofreports(allatgreatcost andpersonalexpense)andthenevenafterprovidingreportsfromtheexpertswhoallsay thatintensive25hrsplusofhelportherapyisrecommendedeachweekforanyprogress, andthenstillhaveNDIAonlygivea’standard’planwhichatmostfundsathirdofthose costsisdemoralising.

Comments regarding ECEI:

Mostlyitwasapositiveexperiencethatassistedmysontochangehisbehaviourandteach

mehowtohelpmyson.Intheendithashelpedhimcopebetterwithhisdiagnosisand providedfirmfoundationstocontinuegrowing/learning.Partswereveryfrustratinginthe communicationswithNDIS/NDIAandsomeserviceprovidersbeingrigidintheircare provisionmodel.

Ifitwasn’tforthemIwouldhavenotdonealotformychildandalsohelpingmefindthe

rightschoolforher.

Ithashelpedusgettheinitialtherapiesthatoursonneeded

Sofarsogood,Ihavenocomplaintsatthemomentandhopetonotgetanyinthenear

futureandifsoIhopethatitissomethingthatcanberesolvedprofessionally.

Goodbutneedmorehomehelp

ItwastheworstaspectofmyengagementwithNDIS.Togetmydaughtereventheinitial

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with that, we missed valuable intervention time because of {the} awful service. The stress it created was incredible.

ECE was all about NDIS, sometimes we felt all they want is our NDIS money. It was never about your kid and what problems we are facing.

Our NDIA manager Is part of this scheme and has been excellent. The only suggestion |

have is more programs aimed at transition to school both in the disability provider and primary school space. My daughter was only able to attend one program before she started school and the public school she attends was not able to offer assistance as their ECE/ program filled up 12 months prior. More funding is needed in this space.

Didn’t change much Very appreciative and grateful that they go above and beyond for what your child needs

We are grateful for it allowing us to get our diagnosis, but it was a slow, confusing process that changed twice during the process.

k. the social inclusion and participation of autistic people within the economy and community.

Therapy sucks a lot of time that others would spend on connection. All the costs not covered by NDIS take the money that others would spend on community activities. We spend as much on that as most families do on their housing costs. NDIS’ insistence they will only fund “disability specific” programs means our kids miss therapeutic opportunities that would also help them build social connections in the community. Any attempt to raise issues with the NDIS makes us feel voiceless and powerless. If the aim was to design a system to isolate families with disabilities, undermine their mental health and disempower them the NDIS is doing a bang-up job.

Going to my daughter’s school assembly with my autistic son was very paintul because he

would just have melt downs and nothing | could do to keep him calm not even noise

cancelling headphones | had other mums always saying something to me about the noise |

even had a teacher complain to me about the noise going out on the bus train or shopping

centres. | have the same problem. People are not understanding.

We are in desperate need in Canberra of more inclusive sports and social groups. My daughter, 6, currently attends swimming but was denied by many clubs as she needs almost one-on-one support. If we do find a group, they are usually expensive and have wait lists.

We feel very fortunate with our son’s daycare as they have been very accepting and inclusive of our son. But apart from that, we haven’t had that much experience with inclusion from the community.

We have found it difficult, not a lot of “normal families” would understand us on a day to day basis. Its quite stressful at times when there are certain things we can go to because of loud noises, the crowded spaces.

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Westruggletoaccesscommunitysupportsasmychildisshowingundesirablebehaviours

toothers.Thisisleavingusexhaustedasparentsandsecluded.

Noneatall.Terriblepublicschool.

Notalways,becauseanytrainingsessionslikeswimmingandothersportsdon’thavefunds

support/concessions.

Ithasbeenquitedifficult.Luckymysongoestoagreatschoolthatisverysupportiveand

heattendsasocialgroupfortnightly.

Whenwefirstreceiveddiagnosis,weweregrievingandstaylow.Thenwerealisedthatour

childhassensoryissuesandoverwhelmedinbusyenvironment.Weareslowlyretrieving frombusyenvironmentandonlymeetseveralpersonsthatourchildcomfortablewith.In times,wedidn’trealisethatwegraduallygettingisolatedandhavenoone.Evenclose frienddoesnotunderstandwhatitmeanshavingchildwithautism.Therearenotmany peopleunderstandourstrugglesasthechildwillappearnormalintheirplace.That’swhy peoplesaidautismisaninvisibledisabilityandparentsnormallystruggleinsilent. Especiallyforusthathavenoparentsandrelativestohelp.

Weattendswimming.Mysonistolerated.

Wedon’tfeelincludedinthecommunity.Wehavetogototherapyinweekend.Itmostly

takeupourtime.Wehardlyhavetimetogoincommunity.

Itisdifficulttoparticipateinthecommunity,AutismIdon’tfeelhasawarenessraised

correctly,thelackofpeoplewhodonotunderstandthathalfthechildwithASDalsohave intellectualdisabilitiesastoundsme.Theythinkofautismassomethingthatisportrayedin showslikethegooddoctororatypicalsowhenyouhaveachildwhohasautismandis6.5 yearsoldbuthasthementalageofa4yearold,itbecomesdifficulttoexplain.Thereisalso lackofcommunitysportswhicharemainstreamwithstaffexperiencedenoughtomanage childrenwithspecialneeds.Thereforethechildrenwithspecialneedsareagainisolatedto participateinactivitieswithchildrenwhoareatthesamelevelastheyare,whichIdon’t thinkgivethechildrentheopportunitytogrowandbuildtheirskills.

Hereandthere.Butthereisn’tmuchhelparoundwhenyouhaveotherchildrenandyou

areasingleparent

Sonstartsscreaminginagathering!!

Noneoftheabovequitetheopposite.

There’sstillsomepeopleinthecommunitydon’tknowwhatisautism.Stilldiscrimination

forautismhappenedinthecommunity.

Rightnowwearebusywiththerapiesandinterventions.Notmuchparticipatinginthe

community.Thoughmysongoestoregulardaycareaswellwhereheissupported.ButI feeltheneurotypicalorregularcommunityisstillnotmuchawareofautismandits struggles.

Generalcommunityeventsdon’tcatertoautisticchildren.Thereisanisolation

Hardlyanyinclusion.

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BycommunityIamgoingtosaySchoolfirstly.IthinkthatSchoolsalsobecomequite

complacentandthinktheyhavehearditall,wheninfactasweknow,wearealldifferent andhavedifferentneeds.Idofeellikewearealllumpedtogether,andanAutismdiagnosis isseenasanexcuseforbadbehaviourandthattheyarenotgiventhesamegoalsand expectationsasotherchildren.

Notenoughservicessuchassportandrecreationforchildrenwithdisabilities

Wehadcalledover72daycares

Itisveryimportanttoeducatechildcarecentrewithautism.Therearenotmanychildcare

understandonhowtohelpchildrenwithautism.Childcareisveryimportantbecauseitis likethesafeplaceforparentstoputtheirkidsintheircarewhiletheyareabletohavea break,respiteorevenworking.

Thereshouldbemoreawarenessespeciallyinchildcarecentres.Theyaremostlyclueless

abouthowtodealwithautistickids.Theyaremostlyleftontheirown,thereshouldbe moretrainingandawarenessprograms.

MoreteachersneedtobetrainedtohelpchildrenwithASD,andemployersneedtobe

educatedaboutpeoplewithASDandbeencouragedtomakeprovisionsfortheir employment.

Lackofinclusionintheareaespeciallysports.Mysonwasnotwelcomedintotheteam,got

seriouslyhurt,missedoveraweekofschoolandnoonefromtheteambotheredtocheck hewasokorevenrespondtoaFacebookpostinoursoccergroupfromme.

Includedinthecommunityintheplacesweattend,now.Butmysonhasbeenstrippedof

opportunitiestoparticipatesomanytimesinlocalpreschoolsduetoseverebullying.It’s somethingthathehasn’tbeengiventheopportunitytoparticipateinmanythingsbecause he“Isdifferent”whichtoanadultmakesnosense.

Notreallyfeelingincluded

Communityinclusionhasbeendifficult

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