National Hoarding & Squalor Conference 18 & 19 September 2014
Registration Now Open
Services NSW/ACT is pleased National Hoarding and Squalor eld in Sydney from the 18th – 19th s third conference follows on from 2009 and 2012 conferences.
Julie McCrossin will once again be our Master of Ceremonies. WORKSHOP Wednesday September 17th ‘Buried in Treasures Workshop’ 9am–4pm presented by Lee Shuer
Pathways to Dealing Effectively with Hoarding & Squalor w.hoardingsqualorconference.com.au/2014 in Australia
ay Conference will include eakout sessions.
aix-Cols Phd, Consultant Clinical ior Lecturer Karolinska Institutet, will be a keynote speaker at the
SUPPORT GROUP Friday September 19th, 4.30–5.45pm. No cost to attend. The Support Group facilitated by Lee Shuer is for people who are themselves dealing with hoarding and squalor.
nce & Function Centre - 66 Goulburn Street, Sydney NSW 2000 For more information visit:
PATHWAYS TO DEALING EFFECTIVELY WITH HOARDING AND SQUALOR IN AUSTRALIA
Introduction Australia is facing a deficit of early intervention and coordination strategies to respond effectively to hoarding and squalor – one of the most complex and stigmatised social issues we face. “Hoarding and squalor is an estimated $1.8 billion issue with minimal intervention. Without an effective solution costs could spiral to 20 times that if we don’t intervene early and coordinate funding and services,” said Catholic Community Services NSW/ACT (CCS) Hoarding and Squalor Manager, Mercy Splitt. CCS has offered one of the few specialist hoarding and squalor services in NSW since 2008. With a typical minimal intervention (of case worker visits for three months and help with repairs and cleaning) costing about $3000 per case, current funding only allows for a small percentage of clients across NSW to receive specialist hoarding and squalor services. Despite the recognition of hoarding disorder as a distinct psychiatric condition since May 20131, Australia still lacks a national strategy to address the problem. To be effective, services need to be collaborative with a coordinated approach,” said Splitt. “When collaboration does not occur, blockages arise, people don’t receive the help they need, their problems escalate, and the burden on our health and human services rises.”
Hoarding in Australia and NSW Who is affected? New Australian population research2 estimates more than 600,000 people (2.6%) may suffer from hoarding disorder, putting themselves and their families at risk of squalor and health risks, fire hazard, eviction and homelessness. This is in line with prevalence studies in the US, UK and OECD countries that estimate 2-5% of people may be suffering from hoarding disorder and in need of help. Hoarding is not an individual problem. An estimated 46% of people with hoarding disorder live with someone else.3
What are the consequences? Hoarding can pose significant health and safety risks. More than 80% of homes with hoarding and squalor conditions present a safety risk to inhabitants and human service agencies entering the home to provide assistance.4 A high proportion (81%) of those living with hoarding disorder face mental health risks, and more than 50% of those living with hoarding disorder do so in social isolation, according to CCS data.5 Housing insecurity is also a significant issue, with the majority (64%) of CCS clients’ homes at risk of eviction and/or subject to Council or Consumer, Trader and Tenancy Tribunal (CTTT) orders at the time of program entry.6 1
Fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Lopez-Sola et al, ‘Prevalence and Heritability of Obsessive-Compulsive Spectrum and Anxiety Disorder Symptoms: A Survey of the Australian Twin Registry’, American Journal of Medical Genetics, 2014 3 Catholic Community Services NSW/ACT program referrals data January 2013-June 2014. 4 Ibid. 5 Ibid. 6 Ibid. 2
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PATHWAYS TO DEALING EFFECTIVELY WITH HOARDING AND SQUALOR IN AUSTRALIA
Fire fatalities are one of the most tragic consequences of hoarding, particularly where people have been hoarding over a long period of time and their behaviour has gone undetected and untreated. Since 2009, 12% of fire fatalities in NSW were linked to hoarding, and one in three NSW fire deaths in 2014 to date had hoarding conditions present, according to NSW Fire & Rescue7.
The Catholic Community Services response Catholic Community Services NSW/ACT (CCS) has been operating specialist hoarding and squalor services since 2008. including education programs to support other agencies to better manage hoarding and squalor referrals. An integrated approach to dealing with these issues has led to CCS being considered a leader in the field. CCS offers case management and education services in Sydney as well as the NSW regions of Newcastle-Hunter, Illawarra and Southern Highlands. CCS programs have been successful in establishing trusting relationships with clients, bringing behavioural change in those with hoarding disorder, and resolving fire, health and safety risks through effective case work and supported clean-ups. Case work and supported clean-ups have also prevented eviction and resolved neighbour complaints. In addition, CCS connects people with other services and helps build stronger relationships with family and friends. “You need special training to deal with this issue. It can be confronting. It is a labour intensive, long-term effort that needs multi-agency support. We are calling on the Federal and NSW Governments to implement strategies to support a coordinated, integrated model of care to respond to an issue that is only likely to grow as our population ages,” said Mercy Splitt, CCS Hoarding and Squalor Manager. CCS has also developed a phone app to help people find information about hoarding and squalor. It can be used to identify a course of action, address a situation of a family member or neighbour suffering from or living with hoarding and/or squalor, and find local services that may help. It's available for both Apple and Android phones and includes interactive quizzes to help people determine whether someone they know needs help. CCS believes there is a strong need for intervention and service coordination to respond effectively to hoarding and squalor. This needs to happen before people's homes become insecure or their fire risk increases.
The cost of not responding early Hoarding and squalor in our communities is an estimated $1.8 billion issue. Costs could spiral over time if we don’t intervene early, develop national and state policies, coordinate available services, use existing resources more effectively, and allocate funding for treatment and support.
Why coordination is vital It was only after a couple in their 70s nearly died in their Sydney home in a fire in 2013 due to hoarding that local authorities sought help on the matter. The incident prompted the local council to contact and work with CCS on strategies to reach others before it was too late. “We need to intervene much earlier, well before people are at risk of fire, eviction or homelessness; this requires better mechanisms for continually coordinating available services as well as identifying better ways to use existing resources,” said Splitt.
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Melanie Rebane, ‘Investigating Hoarding Fires’, NSW Fire & Rescue.
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PATHWAYS TO DEALING EFFECTIVELY WITH HOARDING AND SQUALOR IN AUSTRALIA
TH E COST OF H OARD I N G AN D SQUALO R Hoarding and squalor in our communities is an estimated $1.8 billion issue. Costs could spiral over time if we don’t intervene early, develop national and state policies, coordinate available services and fund assistance and support.
N O I NTERVENTI O N
I NTERVENTI O N
H EALTH SYSTEM 4
CASE WO RKER 1
CRISIS ACCO M M O DATI O N 6 REPAI RS AN D CLEAN I N G 3 REPAI RS AN D CLEAN I N G 5
CENTRELI N K 7
FI RST RESPONSE SERVI CES 2
TENAN CY TRI BU NAL 8
x Estimated
New research estimates
people =
people (2.6%) may suffer from hoarding disorder, putting themselves and their families at risk of squalor and health risks, fire hazard, eviction and homelessness.9
600,000
600,000 $1.8 billion 1
2
Includes working with the client for about 3 months, coordinating with other agencies, referrals and administration. Some interventions can take a year or longer.
6
3-month stay.
7
Legal representation and application.
Can include fire brigade, council, RSPCA, ambulance.
8
Maximum emergency payment.
3
Repairs and cleaning required vary from case to case.
4
Estimated cost of hospital stay of 6 weeks.
5
Based on repairs and cleaning for a public housing unit.
9
Obsessive-Compulsive Spectrum and Anxiety Disorder Symptoms: American Journal of Medical Genetics, 2014
1
Note: These are estimated costs based on limited case study data. This infographic puts the case for early intervention to stop the costs of responding to the complex issues of hoarding and squalor from escalating. We need to intervene early with specialist support, and find ways to integrate solutions across agencies and services.
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PATHWAYS TO DEALING EFFECTIVELY WITH HOARDING AND SQUALOR IN AUSTRALIA
“Too often we see clients who have gone for years without help, where their homes may have filled with accumulated material to the extent where it is difficult to move through the house, or stoves, fridges, sinks and bathrooms have become inaccessible. “Coordination will help us detect problems much earlier and help get treatment and services to people before things get out of hand,” she said. From a human services perspective, hoarding disorder, whether or not it is linked to squalor and self-neglect, is an issue that cuts across many areas. These can include mental health, aged and community care, housing, children’s welfare, homelessness, fire and rescue, local government, councils, and trustee and guardianship issues. Without coordination, people fall through service gaps, often because non-specialist agencies need additional knowledge and expertise to respond effectively. Sometimes the physical environment where hoarding and/or squalor are present is regarded by agencies as excessively risky and people’s needs are viewed as too complex to effectively manage. For example, in regional NSW, a woman in her 90s had accumulated so many belongings in her public housing unit that she had been couch surfing for about eight years before she was finally referred to CCS’s hoarding and squalor program. She had not had hot water for years and her bathroom had become too cluttered to use. After working with a CCS case worker for two years, who also assisted with Consumer, Trader and Tenancy Tribunal (CTTT) hearings, the woman is now back at home living safely and happily without clutter. Service coordination is essential for preventing harm to, or deteriorating living conditions, for family members. CCS has recently accepted seven single Mums into its program, where children and their living circumstances came to the attention of local agencies. These families are lucky to be living in an area where specialist services are available to help. More coordination of resources and services will only help to prevent other families, whose daily life may be affected by hoarding and squalor, from remaining hidden.
About hoarding A definition of hoarding disorder Hoarding disorder is a psychiatric condition characterised by excessive collecting and extreme inability to discard worthless objects. It some cases it can lead to squalid conditions that interfere with normal living, which in turn can affect the health, safety and quality of life for the sufferer and those who live with them, their neighbours and the community. The disorder can appear as a result of a genetic history of hoarding, ageing related illness, trauma, or childhood neglect. It is different from chronic messiness and collecting. Collectors are proud to show off their collection and can give up or trade items to improve their assortment of items. People who hoard gather items that are of little apparent use or value and can experience great distress and immense grief if they lose an item. Dealing with the problem is complex. In order to gain access to a person’s home, care workers have to build rapport and trust, work with the individual to gradually clear the items, and make sure that the dwelling is safe and hygienic. It requires a multi-agency approach from referral to result. The condition does not just affect the individual; it impacts children and families, neighbours and the community at large.
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PATHWAYS TO DEALING EFFECTIVELY WITH HOARDING AND SQUALOR IN AUSTRALIA
Splitt said, “Our clients face shame, social isolation, depression, and an inability to change their behaviour without support and intervention.” Those who suffer from hoarding disorder are often hesitant to seek assistance, despite experiencing impairments across many different elements of their daily lives. According to researchers published in the British Journal of Psychiatry, only one third of individuals suffering from hoarding disorder seek professional help.8 This suggests it's vital to increase the coordination of services and education for more people to receive assistance.
Why people hoard There are many different reasons behind people's hoarding behaviour. There can often be a genetic predisposition in the family, or the behaviour can be triggered by significant life events such as trauma. Some of those who hoard have difficulty when it comes to executive functioning, while others can experience emotionally-driven reinforcement patterns. Sometimes cognitive impairment can lead to hoarding. Dementia and brain damage can contribute to this behaviour, as can mental health issues such as depression and schizophrenia. When asked why they hoard, typical responses from clients can include the feeling of protection from harm, with possessions contributing to a feeling of safety and security. Some people can become especially attached to items, while others hold on to them in order not to be wasteful, with the belief that they may be useful in the future.
Why some people with hoarding disorder live in squalor Hoarding can lead to squalor in the homes of many people with this disorder, as occupants become unable to reach and clean certain areas of their homes9. This can cause the accumulation of dirt, grime, dust and vermin, which can turn homes into dirty environments. When people become strongly attached to objects, they can disregard the hygiene and cleanliness of that object. The cognitive-behavioural model of hoarding disorder can also contribute to issues with organisation, memory and decision-making, which can lead to conditions of squalor.10
A snapshot of hoarding: CCS statistics These statistics are based on a sample of 217 CCS clients (female and male) at the point of entry into the CCS Hoarding and Squalor service program, in the Sydney, Newcastle-Hunter, Illawarra and Southern Highlands regions between January 2013 and July 2014.
How old are people suffering from hoarding disorder? Hoarding disorder can occur at any age and often continues to get worse if not treated as the client gathers more items over time. In 5% of cases clients were aged under 29, in 35% of cases clients were aged 30-49 on program entry, in 45% of cases they were aged between 50 and 69. In 15% of cases clients were aged 70 or older.
Where do they live?
8
Ashley E. Nordsletten et al, "Epidemiology of hoarding disorder", The British Journal of Psychiatry, Vol 2013, pp 445-452, 2013. 9
John Snowdon, Graeme Halliday, Sube Banerjee, "Severe Domestic Squalor", Cambridge University Press, 2012 10 Ibid.
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PATHWAYS TO DEALING EFFECTIVELY WITH HOARDING AND SQUALOR IN AUSTRALIA
Of our client group 59% lived in public housing, 29% owned their own home and 12% lived in private rental accommodation. Although a high number of people lived in public or rented housing, only 7% had been ordered to act by councils, with 11% subject to a CTTT hearing. This indicates that hoarding remains largely a hidden issue, and that the occasional sensational case of a household that has come to the attention of, and created a problem for a neighbourhood, are not where services are most needed to get help to those affected. Almost half of clients (46%) were living with other people, thus exposing children and relatives to health and safety risks, which impact on their wellbeing. In Sydney, compared with regional NSW, a higher percentage of clients lived alone (79%).
Housing insecurity A majority of clients faced housing insecurity, with the majority (64%) of CCS clients’ homes at risk of eviction and/or subject to Council or CTTT orders at the time of program entry.
Period of time in squalor The majority of clients seen by CCS had lived in squalor for between 1-9 years (76%), and 24% had lived in squalor for more than 10 years – a clear indicator of the need for much more focus on prevention for helping those affected.
Presenting health and related issues Clients have high levels of safety risks (83%). Many may not have access to their bathroom or kitchen due to the accumulation of items, while other clients can no longer sleep in their bed. There are numerous risks of injury – from falling items, tripping or electrocution. Tradespeople often refuse to fix essential services in these properties due to access difficulties, leaving clients without power and water. Clients also experience high levels of mental health issues (81%) with signs of depression and anxiety in many clients and schizophrenia in some cases. A majority of clients were socially isolated (57%), even in some cases where they were living with others. Social isolation can result from family and friends avoiding visiting the client due to their living conditions and the client seeking to limit contact as a result of embarrassment. The majority of clients were at high risk of fire (66%) on program entry as a result of the accumulation of items. Fire in these properties can be devastating as a result of the quantity of flammable material that hampers efficient evacuation and endangers residents and fire fighters.
Risk of family breakdown Hoarding and domestic squalor can be devastating to family relationships. People affected by hoarding and squalor were more likely to live alone than others their age, as family members find it difficult to live in this environment. Child protection services can threaten to remove children from the client’s care.
Education As well as client service, CCS provides education workshops to council and community organisations to assist frontline workers to understand how to respond to hoarding and squalor in the community, including how to engage with people, assessment tools, intervention strategies and referral information.
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PATHWAYS TO DEALING EFFECTIVELY WITH HOARDING AND SQUALOR IN AUSTRALIA
CCS has developed an Effective Service Responses education package that outlines what hoarding and squalor is, who is affected, reasons behind hoarding and associated policy and law. It also provides assessment criteria and overviews the case management process, providing councils, health, community and aged care workers the tools to better understand this issue and assist them to help. This type of education can also help to break down prejudice.
The progress so far National agenda CCS has identified an ever-increasing need for a stronger service response to hoarding and squalor in Australia. After approaching the NSW Minister for Ageing, Disability and Homecare in 2008, the Severe Domestic Squalor project was developed in Sydney. This was met with overwhelming demand, further highlighting the need for service funding in NSW. At the 2012 National Hoarding and Squalor conference, CCS responded to participant feedback about gaps and shortcomings in the response to dealing with hoarding and squalor and convened a NSW Taskforce to identify areas for improvement and develop recommendations. As hoarding and squalor is a multi-agency issue, CCS believes that a single government department should be assigned responsibility for the overarching framework of developing effective system responses. This government department would work collaboratively with other government departments to ensure a consistent and coordinated approach. It's also important to develop national guidelines for providing clear and effective pathways for those in need. Research is required to inform best practice, and legislative change may be effective in bringing about increased access to service providers, as neither hoarding nor squalor is clearly defined under legislation designed to protect public health.
NSW Taskforce convened to identify strategies to improve system In 2012, CCS convened a NSW Hoarding and Squalor Taskforce to address the need for solutions to hoarding and squalor in NSW. The Taskforce brought together non-government and government agencies to identify what is needed to better understand the causes of hoarding and squalor, its prevalence and social impact, and how to more effectively get treatment and help to people. It was agreed the service response to hoarding and squalor needed to be more consistent, with greater collaboration between agencies involved. Support, education and a centralised process for data collection are also critical to ensure an effective response. The Taskforce has produced a NSW Hoarding and Squalor Issues Paper, “Beyond Overwhelmed” to highlight the seriousness of hoarding and squalor in our communities and the social consequences. This has also recently been highlighted by the Legislative Assembly of NSW Committee on Environment and Regulation’s “Report on the Management and Disposal of Waste on Private Lands” which devotes a chapter to domestic hoarding and squalor. CCS and other Taskforce members were invited to give evidence. Members of the Taskforce are CCS; Sydney Local Health District – Concord Repatriation General Hospital; South Eastern Sydney Local Health District; NSW Ministry of Health – Mental Health Drug and Alcohol Office; NSW Trustee and Guardian; Housing Policy and Homelessness Directorate, Housing NSW; City of Sydney Council; RSPCA NSW; NSW Fire and Rescue; University of Sydney, School of Psychology; University of NSW, School of Social Sciences; Mental Health Coordinating Council; and Local Government NSW. The Taskforce Issues Paper and proposed system solutions are currently with the NSW Premier for consideration.
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