Improving the lives of young people living with complex disabilities

Sue Hodgson, President of HOPES Inc. joined us recently to discuss her future plans and aspirations for her organisation and the individuals that she and her colleagues, continue to support.

Sue will be presenting at the upcoming Younger People with Very High and Complex Care Needs Conference which will take place on 19th and 20th June 2014 at the Novotel Melbourne St Kilda.

With nearly 30 years’ experience living and working with people with high and complex needs, what are the highlights of your career and how has this impacted on your journey to support this cohort of young people?

Sue: My introduction to the lives of people with high and complex needs came on Christmas night 1985, when my then 22 year old daughter received a severe brain injury from a kick by a rogue horse.  So this began an eye opening journey through hospitals, rehabilitation centres, and community settings – discovering endless gaps in services and communication difficulties between the person needing support, family members, service providers, and health professionals.

My first highlight came with from co-founding Headway Tasmania in 1986; and discovering a wonderful group of volunteers prepared to help in any way needed.  The next milestone was the establishment of a dedicated inpatient unit and employment of Tasmania’s first Rehabilitation Specialist – a joint venture between the Motor Accidents Insurance Board and State Government – achieved after extensive lobbying!  Unfortunately, this excellent facility only lasted for four years, subsequently downgraded to office space.  The latest highlight took many more years to reach – seeking suitable accommodation options for younger adults who had known independent lives but now accepted the need for support.  This fifteen year journey finally led to the development of an innovative co-operative living community, comprising 12 residential units, a community house, and a respite/transition unit.

The mission of HOPES Inc. is “to support adults in Tasmania living with acquired and/or neurological disabilities to achieve independence by living in a co-operative community environment”. 

How has HOPES Inc. made this possible? What are your future plans and aspirations for your organisation and the individuals that you support?

Sue: HOPES (Housing Options Providing Extra Support) co-operative living concept was developed as a result of feedback from a series of focus groups with people living or working with acquired brain injury and/or neurological conditions.  The participants stressed the importance of maximum independence in a “home of my own”, but within a supportive environment.  None of the existing options were considered appropriate or desirable for younger adults:  the choices being limited to the parents’ home (for a few), a group home (generally with people with intellectual disability, perceived to be requiring similar levels of support), or an aged care nursing home.  The HOPES concept, now operating in southern Tasmania, consists of a group of two bedroom units, one of which is set up for transition and/or respite purposes, and another as a community house.  Residents bring their own personal care support, and a part-time co-ordinator assists them with day to day management of the community, development of shared activities (subsequently run by the residents), and access to the broader community.  The transition unit is leased to another organisation to arrange individual programs for guests, who can also be linked in with permanent resident activities.  Having operated successfully for 4 years, HOPES is now in the process of seeking for funding and a suitable site for a second community.

You are currently a board member of HOPES Inc., Advocacy Tasmania Inc., Brain Injury Association of Tasmania, and Young People in Nursing Homes National Alliance. What do you see as the most important aspects of working in partnership with these organisations; and what common goals do you work towards?

Sue: All four of these organisations share a common goal – to improve the lives, and maximise the independence, of people living with disability.  Two ongoing areas of concern for all of us are the lack of appropriate accommodation options for younger adults; and the bureaucratic barriers created by silo funding, which restrict optimal pathways from acute care (or inappropriate aged care), to independent community living.  HOPES’ only disappointment at our current site has been the lack of continuous occupation of the transition/respite unit.  Despite excellent feedback from families and health professionals regarding those you have transitioned through the unit, it has been empty for more months than it has been occupied.  While the hospital is keen to discharge patients to this community based transition option, the Health Department funding remains with the hospital bed, and Disability Services is unable to fund the transition costs.  The ongoing frustration here is that the transition arrangement not only enables a faster, more positive and successful pathway to independence, but is considerably cheaper than retaining the person for a similar period in acute care.

You are speaking on an interactive panel discussion about the importance of discharge planning, decision making and family engagement throughout the planning process, at the 3rd Annual Younger People with Very High and Complex Care Needs Conference.

Can you provide us with a brief insight into your experience in this area, including the challenges and successes to date?

Sue: I believe the involvement of family (and/or other close companions of the person preparing for discharge from hospital) is a vital component of successful rehabilitation.  My first introduction to this process was my daughter’s initial proposed discharge some 27 years ago.  Imagine my shock when arriving at the hospital one morning to discover that the Neuro-surgeon had arranged for her to be discharged a few days later, to a nursing home without any discussions with me or the family.  This decision was rescinded following a letter written by me at midnight that day!  At that time, Jacqui was also denied access to outpatient rehabilitation as she was considered to be incontinent and have no ‘reliable’ yes/no answering ability (being only able to respond with a single hand movement).  Following Jacqui’s later discharge to our home, and eventual acceptance at the rehab unit, I returned to University part time to complete a Masters degree in Social Science (Research) with a thesis on returning to the community following ABI; and then worked part-time managing the Tasmanian Brain Injury Program, while volunteering with Headway activities.  This range of experiences gave me a continuing insight into discharge planning processes.  Yes, I have seen improvements during those years but the challenges continue.  Discharges from rehab due to ‘patient non-compliance’ are still occurring, and could, I believe, be avoided with greater focus on patient and family – e.g. ‘Johnny’ was considered non-compliant because he wouldn’t step up and down on equipment in the gym: what a difference when encouraged to step up onto the seat of his father’s four wheel drive!  Over the years I have seen several attempts to put in place more holistic and genuine team approaches to discharge planning, but the challenges continue, resulting in poorer outcomes for the person and family, and also likely economic consequences for government and other funding bodies.

As a speaker and supporter of the 3rd Annual Younger People with Very High and Complex Care Needs Conference, what aspects of the conference are you most looking forward to?

Sue: My particular interest is hearing about person-centred approaches to hospital discharge; successful accommodation options which empower residents with complex needs; and support and training for family members and support staff to maximise independence. Such issues apply to a range of people living with disability but I am particularly concerned with those living with acquired cognitive disabilities and/or neurological conditions.  My hope is that the NDIS will have the capacity to address these issues, but such a situation is a long way off for most.  I’m looking forward to hearing about other successful programs and ideas, which might be promoted in Tasmania.

Join Sue and many other healthcare professionals at the Younger People with Very High and Complex Care Needs Conference on the 19th and 20th June in Melbourne.  For detailed program and to register, please visit the conference website.