No More Desperate Measures

Better models of care for children and families experiencing or at risk of relinquishment

3 September 2012

Presentation by Acting Commisioner Karen Toohey

Welcome

  • We acknowledge the traditional owners of the land, the Wurundjeri People of the Kulin Nation.
  • In May 2012, the Commission released a report No More Desperate Measures: the relinquishment of children with disability into state care in Victoria. The report was able to shine a light on what has been a hidden problem in disability services. This forum is a chance to begin talking about the solutions.
  • The forum was organised by Yooralla and the Commission. Particular thanks to Ashley Creighton and Liz Wood for approaching us with the idea and working with us to bring everyone together today.
  • This forum brings together practitioners from the Department of Human Services, non-government disability and out-of-home-care sectors, and other services for children with disability and their families.
  • We know that you as practitioners are aware that best practice means working with families and supporting the best interests of the child. The challenge is about applying these principles in practice to the challenging situation of relinquishment.
  • Today is about doing that work.

Background to the research

  • The Commission began looking at this issue in 2010, when members of our Disability Reference Group told us that some families were surrendering their children into the care of the state because they were not given enough support to continue full-time caring.
  • The Commission was also aware of the extensive work the Association for Children with Disability had undertaken with affected families, and their advocacy around improving services. The Commission consulted with them in scoping the research.

Language of relinquishment

  • The Commission used the term ‘relinquishment’ in its research as a shorthand way to describe the wide range of circumstances that families face. However, relinquishment is a term that lacks subtlety and potentially harms families and children who have already experienced significant trauma.
  • The term is deeply offensive to families as it might suggest abandonment. That is not what parents are doing when they are forced to act in desperation. Young people labelled by this term must also deal with the stigma it carries.
  • Importantly, relinquishment also has a specific cultural context for Aboriginal Australians who have suffered a history of dispossession and forced removal from family.
  • Some organisations or families prefer terms such as ‘surrender’ or ‘relinquish day-to-day care’. These are not perfect terms—but they may better reflect how families feel when they reach crisis point.

Desperate measures: the relinquishment of children with disability into state care in Victoria

  • This report shines a light on what has been a hidden problem in our human services system for many years. It does this primarily through the perspectives of families affected.

Methodology

  • Seventeen families and carers took part in confidential case study interviews, of which 16 are published.The Commission also interviewed 19 key informants
  • Another 17 families and 41 service providers, advocates and support groups took part through an online survey
  • Peak bodies and large agencies made written submissions.
  • The Department of Human Services (DHS) worked cooperatively with the Commission, in particular by providing data and policy briefings, which helped build a comprehensive understanding of relinquishment.

Main findings

50 or more families surrender the day-to-day care of their child with disability to the state each year

  • Currently, there is no systematic recording of relinquishment in Victoria. This makes it extremely difficult to quantify. As a result, the Commission had to estimate the prevalence, based on indicative measures from DHS and secondary information from organisations.

Relinquishment is not new, and may be increasing

  • Over half the organisations we surveyed reported that relinquishment was more prevalent now than two years ago.

There is no typical family that surrenders care

  • Families in these circumstances share few similarities with those families in contact with the child protection system.
  • The common characteristic of families was feeling they were coming up “against a brick wall” when asking for help. Families turn to relinquishment as a last resort.
  • Families in our case studies were diverse in terms of income, employment and housing status.Stress, ill-health, financial pressures and isolation were frequently reported by parents.
  • Multiple disabilities, high behavioural support needs, and high support needs as a result of severe physical disability or medical condition were common in the case studies
  • Relinquishment occurred most frequently at around 16–17 years
  • Currently there is a significant gap in support options for adolescents with significant behavioural issues and other complex needs. New models of care are needed to support these young people.

It is primarily unmet need for services that drives relinquishment.

  • It is primarily unmet need for services that drives relinquishment. This includes unmet need for respite, in home care, aids and equipment, and behavioural support.
  • 16 of the17 families surveyed reported difficulty accessing support services, or that they had received inadequate support services.

Other systems such as education and health, actions or inactions can be one of the stress factors that lead to relinquishment.

  • A suspension or expulsion from, or conflict with, the school was often identified as the underlying cause for the spiral into relinquishment. It may also be the immediate event that triggers surrender of care.
  • Half of our case studies identified problems at school.

Risk of relinquishment is not systematically identified at either a population or case level

  • Many families told us that they had told their case manager or DHS that they were contemplating surrendering care and could not go on.
  • However, there is no early warning system in place across DHS to identify and support families at risk of relinquishment.
  • This compromises opportunities to intervene and prevent relinquishment and the harm it causes. It also means that when a relinquishment occurs it jolts the system and requires a crisis response.

The system has not does not respond well when relinquishment occurs

  • Parents may surrender the care of their child in a variety of settings but, most commonly, children are not collected from facility-based respite.Other locations include at school, at DHS offices, in hospitals or by calling the police or other emergency services.
  • Currently there are no state-wide, written protocols or work directions to guide front line staff in these settings when a relinquishment occurs.
  • We found that there is no dedicated budget in Disability Services to manage these circumstances or discrete capacity in the system to provide emergency accommodation.
  • We estimate that 50 or more children with disability are currently living in respite centres, transitional houses or other forms of state care following relinquishment.

Children are living permanently in respite centres – this offends their best interests

  • In our case studies, a quarter of the children placed in respite facilities were still there six months later. In at least one case a child has been living in respite for two years or more.
  • Some children have been placed ininappropriate respite settings, such as adult facilities.

Others end up living in “transitional houses” conditions in which may also be sub-optimal

  • There is an emergent trend of DHS establishing group home/community residential unit style accommodation for children following relinquishment, despite this being contrary to formal policy
  • Among our case study families, half the children were eventually placed in transitional houses.
  • In one region, there are 10 young people in three transitional houses
  • These transitional houses are not subject to the quality audits or safeguards, such as checks by community visitors that apply to other disability accommodation services.
  • There is currently no system for proactive, independent monitoring and inspection of these facilities to make sure children’s human rights are protected.

Children are subject to frequent moves

  • Eight out of 12 children in the case studies moved through several respite or transitional house settings, or out-of-home residential care

Impacts of relinquishment

Relinquishment causes direct harm to children and families

  • The impacts of relinquishment are profound - children experience trauma, grief, fear and confusion. They spend periods in inappropriate and unstable accommodation, which can impact on their future life chances. Most importantly, children are separated from families who love them and want to care for them.
  • Families experience trauma and grief that lasts for many years after the child leaves home. Family breakdown appears common and physical and mental health issues were all reported. Yet no family in this research was offered trauma counselling.
  • Concern for siblings was a significant trend in the research. Currently, there appears to be very little in the way of support for siblings generally, and nothing at all provided to those directly affected by relinquishment.

Costs to the community

  • Relinquishment is costly. It places an additional, unplanned burden on the child protection and disability systems – systems that already struggle to meet demand.
  • These costs are avoidable.
  • For example, it costs four times more to place a child in a disability residential service than to provide intensive respite two days per week

Relinquishment offends human rights

  • Relinquishment caused by the failure to deliver adequate support denies the human rights of children and families at both domestic and international law. In particular, it denies people’s rights to the protection of the family and protection of children.
  • If relinquishment does occur, human rights best dictate that placements should not cause harm and should meet the rights and developmental needs of the child.
  • While acknowledging the challenges the system faces, it is difficult to see how a placement in long-term or revolving respite, or in sub-optimal conditions in transitional housing, could be in a child’s best interests.
  • That is why it is so important to focus effort on developing new and better models of care to prevent and respond to relinquishment.

The key to preventing relinquishment is addressing unmet need for support

  • Our research revealed overwhelming consensus that the most effective means to stop relinquishment is to address unmet need for support. This will require investment in workforce, infrastructure and flexible models of support.
  • This research also found significant consensus about the practice reforms necessary to prevent relinquishment and the harm it causes. Principalamong these is a consistent and flexible response to the whole family’s needs, with a much stronger emphasis on early intervention.
  • A number of preventative models of care were identified in this research. The most frequently mentioned was ‘shared care’.Other models included specialist respite for children with behaviours of concern, intensive behavioural support, the ‘affirming families’ behaviour program, and a continuum of care for families and children with disability.
  • The research also identified a need to develop specialist accommodation and support options for older adolescents. There is a need to involve parents and children to design the kind of supported accommodation that will work best for the child.If this were available as an option, it might prevent the crisis of relinquishment. It might also form part of a planned approach to the transition from children to adult disability services.

Next steps

  • Throughout this research, it has been clear that the leadership of DHS, front-line workers, community service organisations, the courts, oversight bodies, advocates and support workers all want to see the end of relinquishment. For families and children, that cannot come soon enough.
  • The Commission made 28 recommendations in its report, covering issues such as prevention, early intervention and response.The Commission has developed an implementation action plan to guide its own efforts to progress the recommendations.
  • This forum is an opportunity to progress these recommendations by:
  • working openly and collaboratively to identify the gaps and opportunities in the current system
  • reminding ourselves of the robust practice principlesthat should underpin future responses
  • thinking creatively—drawing on your skills and experience—about new and better models of supporting children and families who experience or are at risk of relinquishment
  • All the families we interviewed were loving parents who were left without a choicewhen they took the desperate measure of surrendering care. Almost all of them told us the reason they were coming forward to tell their stories so that other people did not have to go through what they had.
  • That is why it is so vital that this report is used to deliver lasting change. We welcome the opportunity to work with you all in undertaking that task.

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