Transcript Document

From Palliation to Participation:
A Transdisciplinary Key Worker Family
Partnership
Nghi Ngo & Stephen Carberry
9 August 2012
Presentation Overview
Aran and his family
Transdisciplinary Key Worker
Intervention
Outcomes
Reflection and evaluation
Introducing Aran and his family
Dietitian
SP
Mother
OT
Aran
PT
Father
Paediatrician
Father’s
work
Father’s
sister
GP
Referral to Early Intervention
Delayed gross
motor skills &
hypertonia
Vision
impairment
Feeding
difficulties
Not tolerating
handling by
others
Limited
response to
calming
attempts
Family isolation
A service that could support Aran and his family in
preparation for his death.
Transdisciplinary Key Worker
Consultation
to children's
services
Family liaison
&
Key worker
Secondary
consultation
Using
transdisciplinary
skills
Discipline
specific
skills
Family Service and Support Plan
Areas of need
1. Posture
Goal
For Aran to have access to appropriate seating/postural
equipment to support movement development.
2. Sleep
For Aran and his family to establish an appropriate
sleeping routine.
3. Community support For Aran's family to access appropriate support within
the community.
4. Feeding
5. Sensory Play
For Aran to have opportunities for oral feeding
For Aran to participate in sensory play experiences
Family-Centred Interventions in
NATural Environments (FACINATE)
It’s the family that influences child, and we can influence
the family.
Children learn throughout the day.
Early intervention is not about providing weekly lessons.
All the intervention for the child occurs between visits.
It’s maximal intervention the child needs, not maximal
services.
(McWilliam, 2010)
Intervention
Family Liaison/
Key worker
Handover
Discipline specific
(Occupational Therapy)
Functional assessment
of:
Goal setting (FSSP)
• Sleeping
• Play/ Sensory
External service
• Positioning/ manual
referrals/liaison:
handling
• In home respite
• Seating
• Short term out of home • Bathing
respite (as necessary) •Transport
• Carer’s allowance
• Disability parking
Equipment
permit
assessment, trial &
• Visa applications
funding
• Funding applications
(resources)
• Medical, GP, Cerebral
Palsy clinic
Emotional support
Secondary consult
Transdisciplinary
Consultation to
children’s service
Feeding/swallowing
assessment
(Speech Pathology)
Implement
recommendations for
feeding, positioning,
movement, and
counselling.
Support and training for
respite carers on
movement, positioning
and play.
Equipment, movement
& positioning consult
(Physiotherapy)
Nutrition & diet consult
(Hospital dietitian)
Videofluoroscopy
(Speech Pathology)
Community resource
and family support
(Social Work)
Parent support and
training on
implementing strategies
in routines.
Goal: For Aran to have access to appropriate seating and
postural equipment to support movement development
Tumbleform
Mulholland Chair
Cuddlebug Stroller
Dietitian
PT
CP
Clinic
Outcomes
GP
Grandmother
Aran
SP
Family
friends
Grandfather
SW
Equipment
services
Baby
Key
Worker
Mother
Father
Father’s
work
Respite
care
Father’s
sister
“I’ve been told that he will never smile, hear me, look at me or
walk, but he is smiling, he is turning to my voice and he is looking
at me so I pray that he will walk”
Reflections & Evaluation
What worked:
Understanding Aran in the context of his family.
Engaging parents as experts and partners in planning and delivering
services.
What could have been improved:
Further understanding parents’ perceptions of:
Aran's needs.
Disability.
Addressing parents changing priorities and needs.
Acknowledging grief and loss.
Ongoing Recommendations
Where to from here for Aran & his family?
Continued family-centred interventions.
Increased access to community services, i.e. childcare,
school.
What did we learn as a service about how to provide ECI
for children with complex needs?
Not treating the problem but supporting participation in
family life.
Allowing time to form partnership and understand parents’
perspective.
References
Alexander, S. and Forster, J. (2012). The Key Worker: Resources for Early Childhood Intervention Professionals. Malvern: Noah’s Ark Inc.
Barnes, J. (2003). Interventions addressing infant mental health problems. Children & Society, 17 (5), 386-395.
Bernheimer, L.P. and Weisner, T.S. (2007). ‘Let me just tell you what I do all day…’ The family story at the center of intervention research and practice. Infants and
Young Children, 20 (3), 192-201.
Centre for Community Child Health (2010). Engaging marginalised and vulnerable families. CCCH Policy Brief No. 18. Parkville, Victoria: Centre for Community Child
Health, The Royal Children’s Hospital.
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Dunst, C.J. (2000). Everyday children’s learning opportunities: Characteristics and consequences. Children’s Learning Opportunities Report, 2 (1).
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References
Hartman, A. (1995). Diagrammatic assessment in family relationships. Families in Society, 76, 11-122.
Jung, L.A. (2010). Identifying Families’ Supports and Other Resources. In R.A. McWilliam (Ed.). Working with Families of Young Children with Special Needs. New
York: Guilford Press.
McCashen, W (2005). The Strengths Approach. Bendigo: St Luke’s Innovative Resources.
McWilliam, R. A. (2003). "The primary-service-provider model for home- and community-based services". Psicologia 17, 115–135.
McWilliam, R.A. (2010). Assessing Families’ Needs with the Routines-Based Interview. In R.A. McWilliam (Ed.). Working with Families of Young Children with Special
Needs. New York: Guilford Press.
McWilliam, R.A.(2010). Routines-Based Early Intervention: Supporting Young Children and Their Families. Baltimore: Paul H. Brookes Publishing Co.
McWilliam, R.A. (2010). Support-Based Home Visiting. In R.A. McWilliam (Ed.). Working with Families of Young Children with Special Needs. New York: Guilford
Press.
Moore, T.G., and Larkin, H. (2005). “More Than My Child’s Disability”: A Comprehensive Literature Review About Family-Centred Practice and Family Experiences of
Early Childhood Intervention Services. Melbourne: Scope (Vic) Ltd.
Moore, T.G. (2010). Family-centred practice: Challenges in working with diverse families. Presentation at Northern Metropolitan Region ECIS Professional Development
Day, Preston, 14th July.
Wyndham City Council (2011). Wyndham's Babies & Children Facts. Available at
http://www.wyndham.vic.gov.au/aboutwyndham/wyndhamcity/demographics/wyndhams_babies__children_fact.
Questions / comments
Thank you
Nghi Ngo
Stephen Carberry