Mansfield Autism Statewide Services

Submission to Select Committee on Autism

Key Recommendations

1. Provide public infrastructure funding for the expansion of the Mansfield Autism Statewide Services model, as per ‘Operation Gamechanger’, to provide increased capacity and services for families living with autism and training opportunities for teachers and allied health professionals, in the context of a world’s best practice Therapeutic Care Farm.
2. Replicate the Mansfield Autism Statewide Services model of wrap around care across Australia.
3. Increase the availability and quality of planned respite care for families living with autism, to help prevent carer fatigue that can lead to family breakdown and relinquishment.
4. Incorporate Autism Spectrum Disorder (ASD) training as a requirement into a. relevant undergraduate degrees and certificates and b. professional development opportunities for teachers and allied health professionals.

July, 2020

Who we are

Mansfield Autism Statewide Services (MASS) is a not for profit organisation that has supported Victorian families living with autism for over 50 years and we are ‘bursting at the seams’.

Current services include day and term therapeutic residence schools, respite, crisis and full-time care, family camps, in-home practitioners, entry to school and work transition programs, professional development for teachers, allied health industry placements and bespoke disability housing.

We are unique in that we provide a ‘wraparound’ service aiming to keep families together. Our programs are based on the key principles of exercise, healthy eating and active engagement. Our strategies reduce anxiety; enabling brains to learn and increasing positive behaviours.

Demand for placements far outstrips our physical capacity to supply. Our masterplan for our recently purchased 100 acres in Mansfield, will future proof us. Our programs are operationally and financially viable, but we require capital expenditure assistance to realise our vision.

We will build new Term and Day Schools, Family Camp, training and student housing, equine therapy and outdoor recreation facilities including a pool, sport hub, walking and bike tracks along with sensory gardens and develop a seed propagation business to provide hands on work experience.

We are a key contributor to the regional economy, employing 116 staff in stable jobs and a net attractor of families for work and access to services.

Our model of service provision is one that works and transforms lives. We commend the MASS model to the Select Committee on Autism in its considerations toward a National Autism Strategy.

International Best Practice

Mansfield Autism Statewide Services (MASS) offers a unique wrap around service that is not replicated anywhere else in Australia. Founded over 50 years ago by pioneer Dr Joan Curtis, MASS has evolved its not for profit, independent, integrated service provision to meet and anticipate need and demand. The case studies, of which we supply a sample, and the demand for service based on reputation, speak for themselves.

What’s different?

MASS provides a range of integrated ‘wrap around’ services that work with the whole of family and not just the child. The provision of the specialist school alongside the residential program and supported in home by the travelling practitioners are key to the amazing and evidenced success that MASS has demonstrated in its life changing work. All of the programs are underpinned by the core principles of importance of family, engagement, exercise and healthy eating.

The term therapeutic placement program runs for 9 weeks and the student lives with us while learning new skills. Our Autism Practitioners work in the family home for multiple days to support the integration and maintenance of the new skills, involving family and other local support workers and teachers. The family camps provide respite and education and include mentoring for the siblings and support for the parents, all in the context of a fun family holiday. The transition programs work with students not quite ready for school and those exiting but needing more help for independent or semi-independent living. Our day school is available for local and regional students and we have families queuing to move to Mansfield but we’re full, so that doesn’t guarantee them a spot. We provide outreach programs, respite care, crisis care, and we are home to students in permanent full time care. Our requests for service are far in excess of our ability to provide services, given the limitations of our infrastructure.

The recent purchase of 40 hectares 4 km from Mansfield, is the first step toward our vision of new and expanded services, in the context of a Therapeutic Care Farm. The value of farm settings and nature have been shown to reduce anxieties, enabling better learning and reducing the incidence of heightened behaviours. The layout of the masterplan has all benefited from MASS’ decades of experience and this translates into the building designs with safety, resilience and low sensory environments being key.

The Victorian State Inquiry into Autism, after hearing submissions and considering all the evidence provided, recommended “The Victorian Government fund the expansion of the Mansfield Autism Statewide Services model, including the travelling teacher program, across regional Victoria.”

We are financially and operationally sound but unable to self fund the capital works. We are actively seeking government and philanthropic support to fund ‘Operation Gamechanger’ with the infrastructure builds grouped into Project Residence, Project Education and Project Retreat.

Planned Respite & Early Intervention

Typically MASS sees families at the end of their tethers; emotionally drained and exhausted. For many families, the journey through diagnosis and securing a funded plan takes time and money and may end with the absolute frustration of not being able to find a provider. Autism is overly represented in NDIS plans and reports indicate some 30-40% of allocated funds are unspent. MASS is often in the heartbreaking position of advising parents that we are at capacity, with all of our programs being full for the next 12 months. Funding in the NDIS plans only lasts for one year, with no guarantee it will be renewed if unspent. We feel the pressure to find spots because we know the earlier we can work with a child and a family the better for all. A consequence of not intervening early and not having access to planned respite, means some families find themselves in the crisis stage and this can result in relinquishment.

Failing to provide services

The cost of failing to provide services has negative impacts on personal, family, community and economic fronts. According to the Australian Institute Health & Welfare Child Protection Australia 2018-19, children may be placed in out-of-home care when parents are incapable of providing adequate care, when alternative accommodation is needed during times of conflict, or when parents/carers need respite. Sometimes young people with autism, without sufficient support, find themselves in the youth justice system. While MASS has experience of working successfully with young people with autism in the out of home and youth justice scenarios, it is far preferable to prevent such circumstances from arising.

According to the Commission for Children and Young People, Systemic inquiry into the lived experience of children and young people in the Victorian out-of-home care system, November 2019:

• there are more children and young people ‘with complex health and behavioural and developmental needs entering care’ who spend longer in out-of-home care as a consequence of late intervention by child and family services and
• Government expenditure on out-of-home care services has consistently exceeded spending on family support services intended to prevent children and young people from going into care.

The Productivity Commission 2019 found that the annual dollar figure for a young person in residential care is $666,100 per child. Based on the cost to state government of the children MASS has in permanent care, who have significant health, behavioural and developmental needs, the cost is far higher.

The Victorian Inquiry into services for people with autism spectrum disorder, heard from parents about how desperate they can become without sufficient support and that relinquishment then becomes an option. The Commission heard from submitters that it was the term residential placement and in home practitioner support from Mansfield that had helped to turn things around for a number of families.

The need for respite is screaming

After the trauma of her young autistic son going missing, while on a family bushwalk at Mt Disappointment, Ms Penny Callaghan took the opportunity to highlight what all parents in her circumstance understand: “knowing you have planned respite can help keep you going.”

In a confluence of opportunity, MASS was able to provide respite care after the traumatic event, for both of Ms Callaghan’s sons in school holidays, when she was unable to access any locally. The placement, hours from her family home, highlighted the lack of skilled provider respite capacity in the system.

Every month, MASS has many new requests for service from families with funding for respite. Across the state, and including MASS, many respite beds are taken up by children in out of home crisis and permanent care in what has become a negatively perpetuating cycle.

As reported in The Age July 11, 2020.

The boys’ stay at the farm has also been the first respite for their mum, Penny, since the rescue lifted the collective spirits of a pandemic-weary nation. “When most people who’ve been through such a traumatic event, they would have an opportunity to look after themselves, to put themselves to bed, maybe sit down in front of the TV to relax,” Ms Reeves said. “Well, Penny’s not had the opportunity to do that at all. She’s had to continue caring for her two boys and the vigilance they require is enormous.” Penny said she contacted MASS exhausted from the stress of Will’s disappearance and “desperately” needing support. “Knowing you’ve got some planned respite helps you keep going,” Penny said. “If you’re in that caring role 24/7, respite can help you from getting to crisis point.” “It is Will’s first visit to their new farm – his vision of paradise I’m sure.”

Cost benefit

A cost benefit analysis on the in home travelling practitioner service provided by MASS, was undertaken in 2011, by chartered accountants Resolve Consulting, and showed a benefit of $4.83 for every dollar spent. They found the service to be so successful because it targets the needs of the individual family and provides strategies to assist families to care for a child with an ASD. This results in much greater confidence for the family, reduces stress and improves mental health as well as increasing the capacity of certain family members to either re-enter the workforce or increase the number of hours they are able to work.

They found the costs of caring for a child with autism from a financial, physical and emotional level to be significant and noted the difficulty in quantifying the full impact. The direct benefit measured for the cost benefit analysis was the reduction in mental health services required and the indirect benefit was the increase in time available for parents to work. If more measures were chosen, presumably the cost to benefit ratio would be far higher. The report also highlighted the lack of evidenced work in this space.

The sector would do well to invest in economic analysis of intervention and support services efficacy.

For more information

MASS is delighted to extend an invitation to the Select Committee on Autism to visit us in Mansfield, Victoria and witness first hand our ‘wrap around’ model of service provision and our expansion plans for the future.

Thank you for inquiring into the services, support and life outcomes for autistic people.

Contact

Simone Reeves
Director
Mansfield Autism Statewide Services