SUB.001.02765_01_0001
STATEMENT FROM THE AUTISM FAMILY SUPPORT
ASSOCIATION ABOUT DISABILITY SERVICES FOR
ADULTS - MARCH 2022ftafsaautism family support assn
OUR CONCERNS
❖ AFSA wants suitable services for adults with disabilities to be provided for all those who need them, especially those with autism (ASD), complex presentations and high support needs. ❖ AFSA asserts that there is a massive abdication of responsibility by governments, federal and state, around the proper provision of disability services for adults. ❖ In Victoria the corporatisation of disability services, the introduction and operation of the NDIS, and the “departure” of the state government role in the service sector has meant that literally no one jurisdiction is truly and effectively accountable for service delivery. ❖ A business model has emerged which actively discourages providers from taking clients who are perceived as too resource intensive, even when a potential client’s NDIS funding would allow for significant supports to be provided. ❖ This abysmal state of affairs is resulting in the loss of opportunity for thousands of adults with disabilities to engage in meaningful activities and community participation. ❖ The COVID health emergency has magnified problems that were already present in the disability services for adults sector.
DISABILITY DAY & RESPITE SERVICES FOR ADULTS
It is our experience that centre-based disability day services ‘pick and choose’ whom they will admit to their programs, ‘cherry picking’ clients on the basis of ‘profit’ rather than need. While a few honourable exceptions exist where programs are provided to all those who need them, there are many adults with complex needs being denied entry to services. Furthermore, some who gain entry find they have only limited hours of attendance.
No staft part time only
A young man with ASD attended a day service two days a week pre COVID. Despite his mother making the participant’s NDIS funded therapists available to provide advice to the provider as to how to support him, the centre refused to increase the days he could attend claiming they were unable to provide the trained staff required to support him to attend additional days.
AFSA acknowledges those programs that promote training, study and employment opportunities for adults with a disability, and these should be continued and expanded. However these program options are not viable for many people with complex and high support needs. What this group requires is access to disability service providers accepting of and tailored to their high support needs and consistent with their NDIS goals. Suitable programs should focus on community engagement, sport and recreation activities, occupational therapy and communication therapies, creative activities such as music and art, life skills training, appropriate volunteer work and further education options. AFSA is concerned that there appears to be a real gap in responsibilities in relation to the provision and operation of disability day services for adults. AFSA notes that from 1 July 2019 the NDIS Quality and
llPa g e
SUB.001.02765_01_0002
Safeguards Commission became the national regulator (emphasis added) of NDIS supports and services and resolve concerns for NDIS participants (https://www.ndiscommission.gov.au/about/complaints). The scope of regulation by this commission is clearly not sufficient. Regulations do not cover issues such as
-
selective admission to a day service;
-
the refusal of a provider to continue delivery when, for example, a service agreement has expired; and
-
when a provider says that it is unable (or unwilling?) to continue to provide support to a client because of an apparent lack of resources, including shortages of skilled staff.
Wot a good fit’
A school leaver with ASD and high support needs has been unable to find a day service who will take him. His mother has received multiple rejection letters citing the providers’ inability to accommodate his needs and provide the support required. One provider gave the reason that he was “not a good fit” for their centre.
What were known traditionally as ‘respite’ services where adults who live at home with their families were able to be accommodated for short periods in supported accommodation are now almost non-existent. Where such respite services are available, they are very difficult to access particularly for those with high support needs who may require 1:1 or 2:1 staffing support. There is also no transparency around ‘waiting lists’ for respite services. This increases the stresses on already stretched families who try their best to support their loved ones with disabilities.
COVID AND DISABILITY SERVICES FOR ADULTS
All services operating in Victoria must comply with directions issued by Victoria’s Chief Health Officer. During 2020 and 2021 many centre-based adult day services provided minimal support to clients. There was no consistency in approach whether services remained open or closed. There did not appear to be ‘voices’ providing overall direction and leadership around key issues to the sector. For all the difficulties in aged care, there at least appeared to be some policies and direction around services and issues re staff and resident safety.
COVID, service closure and anxiety
A young person with ASD and severe anxiety attended a day service which suspended operation at the end of March 2020. This led to significant levels anxiety because of the change to daily routine. The day service offered on-line sessions. These were not taken up as the participant required 1:1 support to participate on-line, her primary carer could not provide that support nor could the day service. The day service re-opened for onsite activities in early 2022 but the young adult has experienced transition issues and episodes of severe anxiety.
Centre-based disability day services adopted a range of ‘rules’. The message was that supports would only be provided if essential to a person with a disability and where online services were not practical - this generally meant that only personal care services where physical distancing and appropriate hygiene measures were in place would be available. It was apparent that it was not considered essential for group
21Pa g e
SUB.001.02765_01_0003
home residents and those residing with their family attend centre-based day services during this time. This meant that many adults stayed in their home for months on end with little or no support.
GOVERNMENT, NDIS & DISABILITY SERVICES FOR ADULTS
The Department of Families, Fairness and Housing (DFFH) has advised AFSA that the transition of disability services to the NDIS has occurred over the period 2016 - 2020. Day and respite services formerly funded by the Victorian government have transitioned to the NDIS. Based on the experience of our families, AFSA is concerned about:
-
who actually oversees issues around entry/acceptance into disability day service programs;
-
what recourse do families of a person with complex and/or high support needs have when effectively refused entry;
-
who does the family of a client complain to, other than the provider, when programs are not being delivered at all because participants are not permitted to attend a site;
-
what happens when on-line programs are either inadequate or access requires 1:1 full-time support from a family member; and
-
given the anecdotal evidence that some centre-based day services are closing or cutting back operations, who is going to address the non-provision of services during the day for adults with disabilities.
Too crowded1 high risk
A young man with ASD and complex support needs has been funded for two carers by the ND/5. He has been rejected by a centre claiming that it would be too crowded if his carers were to accompany him. When his parents tried to come up with solutions for the centre, the real reason emerged that the centre viewed someone with two carers to be of “high risk”. His parents feel he was never given a chance.
THE LIVED EXPERIENCE OF FAMILIES & THEIR LOVED ONES WITH ASD
Many families feel like they have effectively become unpaid carers and support workers in their homes, with little support or recognition. There is arguably a denial of basic human rights to adults with disabilities who are prevented from community participation.
When staff cannot cope
A young man with ASD transitioned to a centre-based program on leaving his special developmental school. Soon afterwards there were behavioural issues and the parents arranged for a psychologist to attend the centre to provide assistance and advice to staff. Unfortunately, there was no improvement in the situation and he is now at home. The parents have been unable to find another day service who will take him.
The lived experiences included in this statement have been provided by AFSA member families.
3IPa g e
SUB.001.02765_01_0004
WHAT NEEDS TO HAPPEN
AFSA asserts that post NDIS there has emerged a systemic issue re the provision of adequate disability services for adults which has been exacerbated during the recent health emergency. AFSA demands that governments and agencies take responsibility and address this emerging ‘shame’. Adults with high support needs deserve dignity and opportunities to participate in properly resourced and operated day services.
Ongoing day service model replaced with 12 week modules
A man with ASD has always had a full-time centre-based day. His day service closed operations permanently in March 2020. Despite his very comprehensive NDIS package the providers alternative, called ‘Day Services Short Courses’, offered a series of three hour, 12 week community based activity modules - where participants met in a cafe, with no centre base, no continuity and no transport provided. Afar from ideal situation for a highly anxious person.
The solution moving forward must involve the co-operation of all stakeholders - Commonwealth and State governments and their various agencies, disability service providers and their peak bodies, and clients/participants and their families. The NOIA must ensure through the operation of its pricing and other policies that providers offer suitable services to all NDIS participants. AFSA also calls for the Victorian government to designate centre-based day services as “essential” during health emergencies and that they be provided with the support and resources needed to allow centres to continue to operate and provide services and supports to their clients.
WHO IS AFSA
The Autism Family Support Association is the collective voice for autistic people with complex and high support needs and their parents, carers and families. We provide fellowship, peer support and information. AFSA actively raises our community’s concerns with state and federal government policy makers to achieve better services and outcomes for autistic people and their families. Via our website, social media and meetings AFSA provides links to contemporary evidence based information and resources, networks and support services. AFSA is managed by a voluntary committee. We represent lived experience and speak on behalf of our autistic family members and their loved ones. We partner with like organisations to share our experiences and information.
contact@afsaconnect.org.auW’atsaautism family support assn
41Pa g e