This post contains the Key Note address given by Sylvana Mahmic, Plumtree CEO at Pauline McGregor Address, National Early Childhood Intervention Australia Conference, Melbourne. 2016.
In 1992, my eldest son was diagnosed with a disability. During the early 1990s, there were very few early childhood intervention services—none were in our area—but by chance, we found an early-childhood intervention program at a university some distance from our home. We were prepared to travel a considerable distance to go there and attended a play group run by early childhood educators twice weekly.
Karim and his younger brother participated in a small, structured play program that included group play and story time, while I shared my week’s frustrations and joys with the other mothers. His progress was slow, but we were supported by the staff, who taught us many strategies to use in our daily life. They helped us to enrol Karim at a local preschool, which he attended with his brother and cousin. They also visited occasionally to support the school staff.
Mothers took turns meeting the educators, and occasionally therapists, for individual sessions from time to time. We were asked about our priorities, coached while we played with our child, and shown self-help skills for daily routines to develop our child’s independence. We were also encouraged to take notes about what we did together and make suggestions on how to build our child’s development at home.
The messages to our family were clear: we knew our son best and had the capability to help him through play and daily routines. I would leave the sessions on cloud nine feeling reassured, supported and energised to face the week ahead.
Other members of the team were involved only when a priority area was identified. For example, along with signing and pictures, the resident speech therapist recommended a voice output communication device, so Karim could communicate with his peers. She also referred us to a hospital feeding clinic for more specific support around Karim’s eating and swallowing. At the clinic, we attended sessions to determine the difficulty he was having with mealtimes and they provided reports and strategies. Karim still uses several of those strategies today as an adult.
Throughout these early years, most professionals worked respectfully in partnership with our family to identify what was important to us. They provided general and specific information when we needed it, then assisted us to meet those goals through daily routines. I would later come to know this as a family-centred approach that would become the gold standard in early childhood intervention.
However, the feeding clinic, along with other therapy services we occasionally received from the government, felt clinical and different to the early intervention program we initially went to. There was a greater focus on professionals administering assessments and writing reports, which were full of recommendations for us to practice at home. The early intervention program was not perfect—but in hindsight it was family centred compared to a clinic environment.
For our family, the fruits of our quality early intervention experiences were borne; Karim was enrolled in his local mainstream school with the support of the Macquarie University team during the transition. These years at primary school were rocky, as Karim’s enrolment was continually challenged by the school—but that’s a story for another day.
A few years later, my own positive family-centred experiences were contrasted with my first job in early intervention. Children were taught to play by a teacher or aide in a one-to-one situation, with the child seated snugly in a cut-out table and a basket of toys on the floor. Adults presented each toy to the child one-by-one while scoring data on sheets of paper. Families were not involved in the program, which was delivered by professionals.
Early intervention programs take shape
This type of early intervention program would change throughout the late 1990’s, transforming into organisations that expected family participation, accounted for the needs of the whole family and delivered services based on an individual family service plan. Family-centred practice was becoming more prevalent and guided by research. A hot topic at conferences, it was also reinforced through organisation-based staff training and professional development opportunities. Everyone was talking about it.
There were downsides to these years of course: funding was tight, services were rationed and waiting lists were unavoidable. But now that I look back, I can’t help seeing that period as the golden years for family-centred practice.
It resulted in a greater awareness in the community of the importance of a child’s early years. Some states of Australia were soon supported by funding increases for early childhood intervention, driven by governments that understood the massive benefits of early investment and recognised that services should be community based. In these states, more families were receiving services from such organisations, which were on the rise. But all was not equal across the country; early childhood intervention varied from state to state.
In 2008, the first nationally funded early-intervention program delivered individual funding to children with autism across the country. The program was called Helping Children with Autism (HCWA). It was soon expanded to include children with other disabilities in a program called Better Start for Children with Disabilities (Better Start).
I was one of many who welcomed this new approach, as my son was receiving another type of individual funding. It was called ‘My Life, My Choice.’ We loved it. Karim had just left high school and was among a small group of recipients. The funding provided an opportunity for us to create a meaningful life for Karim—he was now at the centre of planning a lifestyle that was personalised and meaningful to him. He decided what he wanted to do and when he wanted to do it.
This approach allowed us time and resources to think, plan and develop skills for Karim to be a valued member of the community. For our family, the flexible and individual focus was appealing; we had spent years trying to fit our son into other programs. Now he was at the centre of everything and everyone worked around his needs. He didn’t have to fit in with what was being planned for the majority. It was all about him.
So when the Commonwealth Government launched these new individual funding approach through the HCWA and Better Start programs, I saw it as a positive step in addressing the unmet needs of children who would benefit from support. It provided $12,000 to families of very young children with autism, and the control to purchase required services. Between 2008 and 2011, almost 17,000 children registered for this package.
As the CEO of a generic early childhood intervention organisation, I welcomed the additional funding source to support children on our waiting lists. As families now had their own funding package, they were shopping around for services; our organisation grew as we recruited new staff. Families were relieved that their child could finally get the help they needed.
However, cracks soon appeared. This individual funding could only be spent on approved services that were predominantly allied health based. Our team transformed and became swollen with allied health staff, as the scheme favoured employment of these professionals who were seen to provide evidence-based intervention.
The role of educators in early childhood intervention was downplayed, as their services could only be approved under guidelines that they had to be delivered in partnership with allied health staff. This individual funding scheme was completely different to our family experience of a highly flexible approach.
Individual funding for young children: lessons learnt
In the Final Report on the Helping Children with Autism (HCWA) Package 2012 undertaken by ARTD, a parent quote exemplifies the paradox of this funding:
“The HCWA funding has allowed us to access speech therapy, occupational therapy and psychology appointments [Emphasis added]. We could not afford these vital services if we did not have access to the HCWA funding. Our son is responding well to these therapies, and in only a couple of months we have noticed improvement in speech and behaviour.” (p. 3)
Clearly, the funding was welcome as it enabled families to access supports; however, early intervention was now seen as a list of therapy services. Although children and families received more services, the focus on diagnosis, therapy and treatment took hold. A challenge to family-centred practice emerged, and the role of the family in their own early intervention experience was being eroded.
Therapy began to be conflated with early childhood intervention.
Transdisciplinary practice was a challenge to provide within the funding envelope, and the funding model incentivised families to favour centre-based visits as their funding would stretch further.
In our initial phone calls with families, we noticed that more were requesting speech therapy or occupational therapy immediately. It became harder to explain the family-centred key worker model our organisation was offering—and its value. Some families came to us and were disappointed when they realised we did not work like their private therapist did. They were familiar with the model where the therapist conducts assessment, finds gaps and then addresses them directly themselves. Multiple therapy visits per week became increasingly common; some families had a number of therapists from the same discipline at the same time. The medical model was back.
Staff in my team began to feel the difference. They reported families were becoming reluctant to invest HCWA/Better Start funds to pay for planning. They reported pressure from families to spend the whole session focused solely on the child. Talking with the family or documentation was seen as wasting valuable time. Family-centred practices were being devalued.
Inequities also emerged in accessing the scheme. It would not pay for missed appointments, which impacted on families with multifaceted needs. This forced some organisations to consider such families as liabilities. Some were declined service. The government’s solution was for organisations to bill those families privately, essentially punishing them for the situation they were in. Other populations were also missing out: those in rural and regional areas, and families of culturally diverse or Aboriginal backgrounds were under represented.
We saw that families needed education on how to use their funding package, manage a budget and choose an intervention type that best suited their child. These skills were fundamental. The report into the Helping Children with Autism program recommended that government “consider how the education and support components can be strengthened to help parents develop effective decision-making processes”. Indeed, it is unbelievable that this individual funding scheme was introduced without a comprehensive suite of resources that built family capacity to use funding effectively!
There were a few voices speaking out in support of family-centred practice. As noted in the report, “some stakeholders remain concerned about the extent to which services are family centred. A small proportion also suggested the need for more holistic services.” (p. 37)
Another quote says: “Some of these stakeholders are concerned the Package favours a one-on-one medical model rather than capacity building with families. The differing views may to some extent be due to differing concepts of what constitutes family-centred practice.” (p. 27)
What about family-centred practice? Where had we arrived? Had the increased funding of allied health paved the way for families to assume that therapy was all there was to early childhood intervention?
An authentic family-centred approach and individual funding
I was involved in the recruitment of new allied health team members in my organisation; as part of the interview, there were several questions that explored family-centred practice. You know how it goes but here is a quote: “Family-centred service is made up of a set of values, attitudes and approaches to services for children with special needs and their families. Family-centred service recognises that each family is unique; that the family is the constant in the child’s life; and that they are the experts on the child’s abilities and needs. The family works with service providers to make informed decisions about the services and supports the child and family receive. In family-centred service, the strengths and needs of all family members are considered.” (Can Child)
Every interviewee was able to recite this definition during the interview. It eventually became clear to me that this question was now meaningless, as the definition was a hollow statement. We had to dig deeper to discover staff values in another way, along with reviewing our training support and staff induction to support a true, deeper understanding of family-centred practice.
In NSW, some organisations offered both HCWA/Better Start services and government-funded services. These organisations began to see a pattern: staff would experience overt pressure from both the family and organisation to work in different ways when delivering HCWA/Better Start services, in comparison to the way they delivered services to families using state funding.
The message from staff was clear. Delivering a family-centred service to families with HCWA/Better Start funding was a significant challenge due to the structure of the funding model. I became preoccupied with the question ‘How family-centred are individual funding models?’ as we were offering both HCWA/Better Start and state-funded services. This provided a unique insight into the differences of each.
So, is individual funding for families of young children with disability the problem? My belief is that it is possible to have an individual funding system for children that is family-centred.
We need to ask this question differently: what mechanism do we put around individual funding schemes so that they are family-centred?
Individual funding can be a tool for families if they receive the right support, which includes a focus on learning from the experiences of other families. In my research, families overwhelmingly valued individual funding of all types, including HCWA/Better Start funding. In the words of one parent: “Individual funding made me feel validated.”
We need to learn not just from our experiences as organisations and policy makers—we should ask families who have been using individual funding on what makes a scheme family-centred. We did ask, and these experienced families had suggestions on improvements, such as flexibility in use of the funding, ease of administration and equitable access.
The role of early childhood intervention providers
It is critical for us to reflect and learn from the HCWA/Better Start experience in the light of family-centred practice. As providers of early childhood intervention, what role do we have to ensure we are continuously reflecting on our family-centeredness? It has been a difficult task for all but the largest ECI providers to find the time and resources to reflect on and challenge established practices. Change fatigue is also a factor with the massive ups and downs involved with transition to the National Disability Insurance Scheme (NDIS).
But it is essential and partnering with families in this process is crucial.
In my organisation, we have been conducting action research for the past six years around individual funding and family-centred practice. This has led us to revisit some fundamental components of our work. We questioned who is leading the early childhood intervention—the professionals or the parents? For example, in response to the reluctance of families to invest their individual funding in planning, we reimagined the process and developed a creative new mechanism that enabled them to direct the process themselves.
The Individual Family Service Plan (IFSP) can be done well; however, it is prone to misuse and tokenism—too often taken over by professionals. As one parent said: “I didn’t like the IFSP experience but I didn’t want to complain.” With our new process, families have reported it was fun, generated goals they hadn’t thought about before, gave them opportunity to voice very long term goals and have these acknowledged. In fact, it was a vision-setting experience that prompted families to be adventurous and ambitious in their goal setting. In many cases, it also helped families to understand how much they can help their child’s progress and see the place of therapy as a strategy to fulfil particular goals.
We challenged the established staff practice of taking progress notes by developing ways to document together with families. We utilised technology to develop family motivation to participate, or even take charge, in documenting their child and family progress through an app. In doing so, parents experienced a boost as they recorded evidence of improvement. The experience became a long-lasting opportunity to celebrate these important successes.
As we incorporate more peer-learning experiences, we are seeing transformational change in families that was not happening with existing early childhood intervention practices. Harnessing the energy, enthusiasm, expertise and leadership of families is empowering and accelerating their learning. This, in turn, can fast track progress toward their child and family goals.
Building family capacity during these early years is a solid foundation for the future of their child and whole family. As this momentum is building, we see a potential previously untapped: for families of young children with disabilities to lead their own social change movement. I believe early intervention organisations have always valued building the capacity of families, but we should be prepared to develop new ways to do it in partnership with them.
These are just some examples of how we have challenged our work in the light of family-centred practice. It is the responsibility for all of us who provide early childhood intervention to continuously reflect on our practices. We now have the ECIA National Guidelines for Best Practice in Early Childhood Intervention, which is a strong starting point for this process.
The role of the National Disability Insurance Scheme (NDIS)
While providers of early childhood intervention reflect on their family-centred practices, there are systemic issues we cannot control that influence the support available to children with disabilities and their families. There is a powerful lesson in the HCWA/Better Start experience for the NDIS. But firstly, some context.
Family expectations for inclusion of their children who have a disability are far more ambitious than 25 years ago when my son was a pre-schooler—and this is a wonderful thing. Society’s understanding of disability is also changing, though there is still room for improvement. The NDIS is an expression of our community’s commitment to improving the opportunities and lives of people with a disability; the lifespan approach taken by the NDIS Outcomes Framework is critical for professionals and families to focus on the things that matter with a long-term vision beyond the early years. The outcome we all want is independent, happy young adults who have strong foundations to lead meaningful lives contributing to their communities.
But they can’t get there themselves. The skills, knowledge and vision of their family is critical, and the NDIS should ensure that these are built into the scheme. The early intervention years are a crucial time for these foundations to be laid, an opportunity that was missed with HCWA/Better Start funding. It’s dangerous for the NDIS to only pay for therapy, as there is a risk that family and parents’ personal goals are not included. This endangers the very resilience of families to flourish in the long term, and will ultimately encourage dependency on the system.
How can we better support a family’s skills, knowledge and vision for their child? What would the starting point be? We each have a part to play in developing this new future of family- centredness.
A consistent national approach
The NDIS has proposed a new Early Childhood Early Intervention (ECEI) approach: a vision of families accessing supports from organisations in their local community that are experienced in supporting children with developmental delay or disability. These organisations are trusted by their communities and are family-centred. Diagnosis will not be a criteria for support. If the child and family need further assistance, then these local experts will link them to the NDIS seamlessly.
Planning is conducted in partnership between families and the ECEI organisationsthey have established a relationship with. Families will not be required to front up to an NDIS office in the early childhood years to re-tell their stories and jump through unnecessary eligibility hoops.
The ECEI is the first nationally consistent approach to early childhood intervention. It is an opportunity to get the system right, so that children and families get the support they need as early as possible. It is vital that the NDIA keep talking to people who know family-centred practice. I urge the NDIA to take the time to get the system right for early childhood intervention, so that it is a family-centred experience for future participants.
Building family capacity must be funded so they are supported to work towards their goals with greater independence. New and innovative peer support networks will also contribute immensely to the capacity of families to get the best out of the NDIS.
The future for early childhood intervention
As ECI providers, our role is to reflect on work practices and service delivery to ensure that we are constantly challenging our family-centredness. We should explore new uses of technology to facilitate our role, engage families, and enable them to connect with each other.
Listening to families and involving them in service design is a powerful way to reimagine our services and practices. It ensures we communicate with them in a meaningful way that connects with their ultimate vision for their child and family. Let’s put in place opportunities for families to learn with us and their peers. Let’s remind ourselves that success is when children are in the community and only using specialist systems when needed to fulfil a goal.
The role of Early Childhood Intervention Australia is to advocate for and further develop best practice at a national level. We urgently need a stronger voice through a national entity to take on this responsibility with confidence and strength.
Why? Because we believe in an authentic family-centred approach. It is our aspiration. We must continuously challenge ourselves, review our policies, practices and training to fulfil this mission in the interests of children and their families.