No more desperate measures:Better models of care for children and families experiencing or at risk of relinquishment

Practitioner’s forum—3 September 2012

Summary of workshop sessions

These workshops were aimed at exploring how the human services system could work to prevent relinquishment and to respond better when it happens.

Practitioners were invited to ‘renovate’ the system by thinking about what they would ‘keep, chuck change and add’. Practitioners worked in four facilitated small groups with a scribe recording the discussions.

This summary

This document identifies the key themes from these discussions. Practitioner’s ideas and suggestions are listed below each theme.

Theme / Page no
Relationships with families / 2
Building system capacities / 3
Workforce and quality of services / 4
Improving existing services / 6
Developing new services / 8
Principles of better service provision / 10
Changes in the wider community / 12

Many of these themes reflect the findings of the Victorian Equal Opportunity and Human Rights Commission’s Report Desperate measures: the relinquishment of children with disability into state care in Victoria. They also reflect the challenge of identifying practical actions that could translate to better models of care for children and their families.

Please note, that the forum did not aim to reach consensus. Rather, it aimed to capture a broad range of ideas and suggestions for change. Accordingly, this summary aims to capture the breadth of discussions, rather than report only on consensus.

Relationships with families

Many practitioners spoke about the need to strengthen and support families.

Many made comments about improving the system through improving relationships with families. Some also mentioned that poor relationships with families (for example, where families fear repercussions if the complain) are a barrier to improving services.

Practitioners said they wanted to:

Keep:

  • Access to support groups
  • Informal support networks – friends, families
  • Supporting people in their natural environments
  • Peer support
  • Maintaining family involvement after relinquishment
  • Protecting the integrity of the family, maintaining successful familial relationships
  • Family-centred processes

Remove:

  • The need for parents to declare themselves ‘unfit’ in order to get the help they need
  • Guilt-inducing responses
  • Responses that make children feel devalued
  • Judgement of families
  • 100page reports presented to families for services, even after a brief stay in respite. The amount of information is overwhelming and unhelpful to families who are already anxious.
  • Notifying child protection when a child is relinquished (NB: this was contentious)
  • Children not returning to their families
  • Process of vacancy management, which is secretive and insulting: not being able to tell a family or child they are being considered for a vacancy (managing hopes and expectations)
  • People fear victimisation, are tired and scared—they fear the repercussions of voicing concerns etc
  • Fear of retribution is a barrier to improving services.

Change:

  • More work towards reunification
  • Sustain the family environment through shared caring
  • Improve pathways
  • Pay family members to provide care
  • Provide supports for grandparents
  • Improve access to information for families
  • Take a whole of family focus including siblings
  • Stop putting the onus on the families to say what they want—shift the onus to services to know what supports are needed
  • Improve management of relinquishment (support for families)
  • Change Centrelink payment for parents who care for children with a disability

Add:

  • Good plans for families to be able to re-connect
  • Shift the whole system so that families feel “it is ok to say that I cannot do this anymore”
  • Information provision over the whole life cycle
  • Guided decision making
  • Families continue to make everyday decisions
  • Circles of support—a UK model where family members, extended family members, and volunteers to provide more support network
  • Resilience and empowerment of families
  • Single supportive pathway that leads through to adult services, which families can enter at any point

Building system capacities

Funding

Funding was discussed frequently as a key driver of and barrier to systemic change.

Flexibility of funding

Many practitioners spoke positively about flexible funding. They wanted to keep this model and extend it to more families.

Practitioners said they wanted to:

Keep:

  • Individual Support Packages
  • Other ongoing packages of flexible support
  • Self-management where appropriate
  • Packages such as ‘Making a Difference’ (funding for intensive case management, planning and coordination of services or for flexible funding to overcome a short-term crisis)

Change:

  • Improved access to flexible supports
  • Offer choice of funding to family-member carers, grandparents and extended family
  • Increase choice and flexibility
  • Evidence-based framework around assessment (NB: this was contentious) and about people identifying what they need at the centre of their planning
Adequacy of funding

Many practitionersidentified inadequate funding as a barrier to better models of care. They identified the consequences of inadequate funding as ‘waiting lists’, caps and inflexible program criteria—preventing families at risk from accessing support.

In addition, they identified that a lack of specific resources to prevent or respond to relinquishment has resulted in crisis-driven responses.

Practitioners said that they wanted to:

Remove:

  • Long waiting lists
  • Disability Support Register and Priority for Access Criteria
  • Multiple assessments and multiple access points
  • Programs that are restrictedbased on age, sex, ratios or regions
  • Funding rules that are not helpful
  • Funding limits on fundamental needs
  • Caps on essential equipment
  • Pilots ‘for the sake of pilots’
  • New funding that is always looking for new programs—we lack funding for programs that we want to keep
  • Having to get to crisis point to get services/ resources
  • Requirement for submission writing that favours large organisations and results in duplication of effort (due to secrecy)
  • Tender processes result in a large investment without a guarantee of interview

Change:

  • Improve funding for Behaviour Support Services
  • Fundthe ‘Helping children with autism program’adequately
  • Allocate supports more equitably and based on needs
  • Fund what works—evidence based programs
  • Invest in improvements
  • Allocate resources as soon as a child is relinquished (currently there is no dedicated capacity)
  • Change disability service register priority indicators

Add:

  • Money
  • Specialised budget allocation
  • New growth SSA
  • Funding that allows for the increases in administration, reporting and accountability tasks
Workforce and quality of services

Practitioners made it clear that to have quality services that prevent or respond to relinquishment we need an effective and skilled workforce.

They gave examples of what works and made suggestions for building the capacity of the workforce. Some practitioners suggested that services could cooperate to develop the skills and knowledge of their workers.

Keep:

  • Dedicated and caring staff who work together to get the best outcome for the family
  • Positive and consistent in-home support workers
  • Specific focused child and family teams
  • Professional development
  • People who are well-trained, even without improving funding, are better prepared to tackle disability and work well with what they have

Remove:

  • Untrained, uncommitted, unmotivated staff
  • ‘Experts’ who don’t listen
  • Casualisation of the workforce
  • Poorly qualified or inexperienced support workers
  • Unrealistic case loads

Change:

  • Acknowledge and develop casual and part-time staff
  • Acknowledge ‘you’re only as good as the people on the floor’
  • Promote methods of developing and sharing skills, networking, sharing good practices and information
  • Develop a new workforce strategy that anticipates the National Disability Insurance Scheme
  • Share training – many employers share employees, we could consider sharing training
  • Develop training around working with children, child-care or disability specific training
  • Train staff in respite to develop skills to deliver services
  • Improve rates of pay for carers and workers
  • Fine-tune career opportunities for carers
  • Research the low retention rates of in-home carers compared to staff in houses
  • Raise the profile of Family Options so we can recruit people with expertise in disability to enhance the support
  • Support staff to support families at risk of relinquishment

Add:

  • Opportunities to develop skills in:
  • Supporting people in distress
  • Developing trust that leads to positive engagement
  • Understanding trauma
  • Developing cultural awareness
  • A dedicated team to address needs to prevent relinquishment
  • Staff touring or development opportunities for respite staff
  • A campaign to encourage people to come into the disability worker field
  • Different kinds of training from a human rights basis—not just ‘Certificate 4’
  • Career pathways for disability support workers
  • Capability framework across workforce
  • An awareness campaign to identify triggers for relinquishment

Improving service provision

Practitioners spoke about services for families and children to prevent or respond to relinquishment. This discussion focused on improving existing services, developing new services where there are current gaps, and on delivering services in a coordinated and effective way.

Improving existing services

Practitioners discussed strengthening and improving existing services. A key theme was the importance of accessible universal services, including schools, child and maternal health services, and general practitioners. Practitioners also spoke about key specialist services that support families and children.

Practitioner’s comments reflect some debate about how to address existing services that may be inadequate, but are all that is currently available to families and children in the current climate. For example, some practitioner’s said that transitional/contingency houses were the ‘most stable’ options available to some children, where others said they should be improved, changed or removed from the system.

There was strong consensus that respite options should be retained and strengthened. This should be about relieving the stress of caring and about providing quality of life for the child and the family.

Practitioners said that they wanted to:

Keep:

  • Disability access to mainstream services, including:
  • Early childhood services and specialists
  • After school care
  • Medical specialists and family practitioners
  • School
  • Other therapy-type specialists
  • Midwives (especially their role in assisting new parents with information and options regarding children with disability)
  • Family therapy services
  • Specialist services, including:
  • Specialist consultancy services, such as Behaviour Support Services andautism spectrum travelling teachers
  • Specialist recreational services
  • Home and Community Care services, for example home care support
  • Existing houses
  • Programs such as ‘Better Start’
  • Family Options
  • Families First
  • Flexicare
  • Helping Children with Autism
  • “Aspect” program of Autism Spectrum Australia
  • Early childhood intervention and family support services
  • Effective, consistent case management services for child and family—coordination and planning
  • Variety in respite options:
  • Respite camps
  • Community access/ community based respite
  • In-home
  • Facility based respite
  • Planned respite support
  • Advocacy services—to ensure that children and families get their voices heard
  • Keep transitional houses—call it ‘adolescent housing’?

Remove:

  • Non-inclusive education environments
  • Contingency housing (but we know that they are necessary in the current state)
  • “TV Dinners” – Planting young people in front of television with food and expecting that level of ‘interaction’ is either appropriate or sufficient to engage them
  • Permanent beds in respite facilities
  • Kids living in respite
  • Adults in Family Options
  • The idea that it’s all up to the Department
  • Lack of cooperation between schools and services: for example, schools that reject behaviour management plans because they conflict with in-place priorities, principles or policies

Change:

  • Do more with the funding we’ve got
  • Underpin and support midwives practice
  • Make information/education for parents of children with disability needs more accessible through more active disability information officers in hospitals and readily available information packages
  • Make successful programs operate more consistently
  • Improve education and services at entry level (schools)
  • More inclusive schools
  • Address bullying in schools
  • Teacher’s core training should include disability, rather than as an optional speciality
  • Place greater value on integration aides, support them professionally and expect higher standards
  • Improve awareness in schools of restrictive practice guidelines
  • Increase childhood development training and understanding variety of disability and the impacts on the child
  • Train teachers in identifying children’s strengths and assisting them—moving away from deficit-model approach
  • Increase cooperation between schools and services
  • Increase access to secondary consultation with behaviour support, resources and coaching
  • Move social policy from family-based model to child-appropriate models
  • Consistent carers
  • Child-appropriate routine
  • Change child protection’s responses to children with a disability – better training, better safeguards, education and support, reporting
  • Change the attitude and rules around HACC services etc. HACC currently provides limited range of services (no medication administration, transfers, etc), which limits options for families and pushes them towards respite services
  • Increase capacity for family based respite
  • Change the set up of some (transitional) houses
  • Make Family Options more contemporary and less limited and reactive
  • Look at needs of child to determine what is best
  • See the person not just the disability, also look at the life stage of that person
  • Semantics
  • Politics
  • Terminology

Add:

  • Support mechanisms outside disability services
  • After-school care
  • Transport
  • Mainstream support with skilled workers – for example, kinder and playgroups which, with the assistance of a therapist/support worker, are accessible to children with disability
  • Inclusion capability
  • Paid carers
  • Earlier intervention that begins well before a crisis
  • Early risk assessment
  • Resources for behaviour support to reduce waiting lists
  • Planned coordinated respite options
  • Evidence-based services
Developing new services

Some practitioners shared ideas about the potential for new services aimed at children and families who are particularly at risk.

Practitioners said that they wanted to:

Remove:

  • Gaps in policy and practice—the reality is that some approaches won’t fit

Change:

  • Develop shared care options prior to relinquishments
  • Extend the Mansfieldtravelling teacher model– looking at a ‘life course’ approach which changes focus as needs develop
  • Extend the key worker model that currently focuses on early years
  • Ensure continuity of services with the goal of minimising upheaval and reducing frustration in day-to-day living
  • Ensure quality services in regional Victoria (in a competitive market) through Government subsidy and regulation
  • Change the policy regarding children’s access to shared supported accommodation
  • Less reliance on private practitioners to fill the gaps
  • Develop facility-based respite based on shared interests, rather than age categories

Add:

  • Intensive options for families who are at very high risk
  • Expertise around coordinating intensive efforts
  • Something in between long-term care and respite—‘medium-term shared care’ or ‘intensive respite’
  • Services for children with autism spectrum disorder—a different model of respite?
  • Focus on transition times in children’s lives
  • A ‘red flag’ system that would mobilise support
  • Behaviour support in the school system
  • Links from diagnosis to service provision
  • A clear exit criteria and onwards pathways
  • Reunification programs
  • Informed by trauma-approach
  • With specialists linked in and training for staff
  • Trauma counselling for families following the crisis
  • More and different shared care options
  • Permanent living arrangements for kids in care
  • Overnight respite options for kids (where facility-based is not appropriate)
  • More specialised and temporary services (for example adolescent carer, in-home specialised support)
  • Advocacy services
Principles of better service provision

Other practitioners spoke about how services should be delivered. This discussion followed on from the earlier discussion of practice principles.

Coordination, cooperationand consistency within the Department of Human Services and between organisations was a very strong theme in this discussion.

Competitiveness and failure to share information was seen as a barrier to coordination. Lack of coordination was identified as leading to complexity, duplication, confusion and inefficient systems.

Once again, practitioners identified crisis responses (lead by a lack of funding) as leading to inadequate service provision.

Some practitioner’s also mentioned a lack of data as a barrier to improving services.

Keep:

  • Relationships and good will between organisations and services
  • Good intentions
  • The capability framework
  • The Looking after Children framework
  • Person-centred planning
  • The rights of the child – entitled to family, home and to access services

Remove:

  • Competitiveness leading to cherry picking of low-need/high-value clients
  • Limits on interagency support due to competitiveness
  • Lack of consistency between Departments (for example, DEECD’s inconsistent policies around restrictive practices)
  • Different definitions and changing guidelines around funding
  • Lack of cooperation between mental health and disability, and between child protection and disability
  • Administrative complexity and fragmentation – multiple referral forms, repetitive paperwork, duplicated systems and processes, multiple entry points for the same support
  • Inefficient booking systems (for example, respite booking systems)
  • Complex systems
  • Multiple services providers
  • Jargon and acronyms
  • Confusion—dealing with different Departments
  • Passing the buck
  • Duplication
  • Barriers between health and place based approach
  • Reactive practices
  • Ad hoc crisis responses

Change: