Addressing the needs to better support and care for Australia’s younger people with very high and complex care needs

Ensuring that younger people with very high and complex care needs have greater choice and control in terms of their support and accommodation options is an ongoing commitment for government, disability and health providers, care and accommodation providers, key national bodies, families and carers. Gaining funding and being able to implement the most appropriate care and accommodation strategies for these individuals is vital, to avoid the risk of entry to residential aged care facilities.

Jacqui Pierce is the Principle Consultant of Jacqueline Pierce & Associates. She is very passionate about improving the lives of those living with ABI (acquired brain injury), and giving younger people with high and complex needs the choice of  Community Living. But more government support is needed if we want to see faster development in these areas. Jacqui recently joined us for a chat and shared with us her views on what we could do to make lives better for those younger people who may otherwise be highly vulnerable and marginalised.

Since 2004, your work has been predominately in the area of acquired brain injury (ABI) and supporting younger people with complex needs living in nursing homes (YPINH). Are you able to provide a brief overview of your journey, including particular achievements and personal highlights to date?

Jacqui: I have worked in disability services since 1987 and for the last 10 years, and that work has been focused in the ABI and YPINH space.

The ABI and YPINH work is inspirational. The reason for that is the individuals and families who find their lives interrupted by ABI or some other form of acquired disability. Their stories are unique and by listening attentively to them we can learn much that should guide the development of services.

I was a part of the Victorian Statewide Advisory Committee for the 5 year Council of Australian Governments Young People in Residential Aged Care (YPIRAC) Initiative, known in Victoria as my future my choice (mfmc). This initiative was a great start to addressing the issue of younger people being inappropriately placed in aged care/nursing home accommodation. It is a great pity we did not have further opportunity to build on that work.

As a part of the mfmc initiative I was privileged to be the Project Manager for the development of a new service that enabled 5 younger people to move out of nursing homes and in to community living. This house known as ‘Karroong’, which opened in December 2010, also hosts the only respite bed funded under that initiative.

You are passionate about creating the change that is needed to improve the lives of people who may otherwise be highly vulnerable and marginalised. What are the key benefits of developing relationships and collaborating with other stakeholders in driving the change?

Jacqui: All of what has been developed in the Barwon area of Victoria since I started working in this space in 2004 has been driven from the ground up. I have been responding directly to the dreams and goals of individuals and families affected by acquired disability.

Often a lack of government funding for some of the very specific work that needs to be done means that we are rendered impotent to respond if we are unable and unwilling to think ‘outside the square’. The work I have done since 2004, (with the exception of Karroong) has been done without any government funding. The work is predominately funded by a not-for-profit Community Service Organisation (Karingal), which chooses to put some of its surplus in to developing new services for individuals and families affected by acquired disability. The rest of what I do is “funded” by in-kind partnerships with a range of other stakeholders who are committed to working in this space.

If we always wait for the government to fund it, it is more than likely never going to happen – “Whatever it takes” is a great philosophy to have when working in this area.

In your experience, what programs have you become aware of to support younger people with high and complex care needs, outlining the benefits for consumers and their families?

Jacqui: Listening to the young person and his/her family is integral to getting this right for people. They do not fit the pigeon holes that systems create and that is why they are “labelled” as being complex or challenging. By really listening to and responding to what the young person and family want/need, we generally speaking get better outcomes for people.

The health/disability interface is also critical to getting this right for younger people with high and complex needs and their families. This includes ensuring that the transition from the health to community services system is facilitated effectively.

I think the ABI: Slow to Recover program in Victoria has much to offer in this space and I am eagerly awaiting BrainLink’s report around their ABI liaison position that they have had based in Royal Melbourne Hospital to see the outcomes of that pilot project.

I also think that the Community Visitors Scheme (CVS) which is a national program that provides companionship to socially isolated people living in Australian Government-funded aged care homes has much to offer younger people who reside in aged care and excitingly, as part of the Living Longer Living Better aged care reform package announced in April 2012, the Australian Government will provide $19 million from 2013-2016 to expand the Community Visitors Scheme (CVS) beginning in 2013-14.

In Victoria, the Health funded Hospital Admissions Risk Program (HARP) and the Hospital in the Home (HITH) and the Human Services funded Multiple and Complex Needs Initiative are all very useful programs to be aware of and utilise.

The Multiple and Complex Needs Initiative (MACNI) is a time-limited specialist service for those 16 years and older identified as having multiple and complex needs, including those with combinations of mental illness, substance abuse issues, intellectual impairment, acquired brain injury and forensic issues. Often these individuals pose a risk to themselves and to the community.

MACNI provides an effective and coordinated approach to supporting individuals so that they can achieve stability in health, housing, social connection and safety, and be linked back into comprehensive ongoing support. Participation in MACNI is voluntary.

As the NDIS rolls out nationally, how do you see the future for younger people living in aged care, and what are your main aims for 2014-15?

Jacqui: Well, the NDIS has certainly turned things upside down and inside out in the Barwon area of Victoria.

With regard to this cohort, the great news is they will have access to funding for the supports they need to live where they choose. The bad news is there is no funding for capital works so where are the options to choose from going to come from?

I am hoping that governments at all levels will be looking to address the chronic unmet need in disability accommodation and work towards developing a continuum of options that meet different needs including a real focus on independent living with assistance/support as required.

We also need to get much better at utilising assistive technologies to maintain and increase people’s independence.

The NDIS, if done well, combined with capital investment in building new options combined with the overall National Disability Strategy 2010-2020 has the potential to address the YPINH issue once and for all. What a wonderful outcome that would be!

You are speaking on an interactive panel discussion about supporting children who have a parent with ABI and the implementation of FAABI (a program for Families affected by Acquired Brain Injury), at the 3rd Annual Younger People with Very High and Complex Care Needs Conference. Can you provide us with a brief insight into the journey of FAABI, including the challenges and benefits to date?

Jacqui: FAABI was developed in direct response to the needs of children that I met during a research project back in 2005. These children had a parent with an ABI and they were what I have come to call the hidden and voiceless casualties of the ABI. These children had, generally speaking, suffered trauma, grief and loss and had no place or space to go to or support to work through their issues.

In late 2008 Karingal provided some funding and I approached Glastonbury about  piloting support for children and families where a parent has an ABI.

The biggest challenge for FAABI is that there is no government funding for this program and it is always dependent on me sourcing funds for its continuation, so in a sense it is always at risk.

The benefits are captured in the quotes below:

The father of the 9 year old at the last program session reported that sleeping patterns for the children had settled, the children appeared happier and his 9 year old was no longer bed wetting.

 Quotes from parents:

“My children all have a different sense of what happened at the time of the injury; they have never talked to anyone about that before the group.  I didn’t realise they all have a different idea of what happened”.

“We want to encourage the children in our family to talk about it; it has never been a secret in our family but there’s no other group where they can talk about it”.

“He has loved meeting other kids and I think he realises he is not the only one”.

Quotes from children who have participated in FAABI:

“One minute my brother was OK and then everything changed”.

“My sister has got a brain injury and she is blind”.

“My brother has got a brain injury like yours”.

“All of our families have got someone with a brain injury”.

“It’s like you can’t see it, but it’s there and other people don’t know”.

In addition to contributing as a speaker, you’re also chairing part of the first day of the Conference. What aspects of the conference are you most looking forward to?

Jacqui: I am really excited to be attending, presenting at and chairing a part of 3rd Annual Younger People with Very High and Complex Care Needs Conference. I find the conference very different to many other conferences on offer because of its focus on younger people with very high and complex needs. The variety of presentations is always very stimulating and the opportunity to network with people from different areas of the service system is highly valuable. Hope to see you there!

To find out more about the 3rd Annual Younger People with Very High and Complex Care Needs Conference and to register, please visit the conference website.

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