The Value of Inter-professional Collaboration when Advocating for Medically–Fragile Children and their Families. Patricia Martinez MA, MSW,RSW E-mail:[email protected] Division of Clinical and Metabolic Genetics. The needs of children with life-threatening metabolic-genetic diseases.
Patricia Martinez MA, MSW,RSW
Division of Clinical and Metabolic Genetics
The needs of parents
The needs of children
Support to monitor their children
24 hours nursing care
Respirology OT and PT
Home vehicle modification
Primary Inter-professional Team(s)
Community and Government Agencies
Knowledge about government systems
Expertise in working with rare disease
Different medical and psychosocial professionals
Experience in common medical condition
about policy changes that affect clients
Relationship with families from the beginning
Social Worker Metabolic Genetics
Community SW and case managers
Identify policy gaps and make policy recommendations in collaboration with the health care team
Facilitates communication among different teams within and outside the Hospital
Support community health providers and other professionals understanding the unique nature of genetic metabolic diseases
Updates community professionals about patients needs
Provide updates of family matters when patients are not hospitalized
Help explain family dynamics
Inter-professional approach was important to challenge perceptions of parental neglect.
Some parental behaviours can be interpreted as ‘neglectful’ when in fact are only ‘different’ and shaped by extraordinary circumstances.
It is important to understand the impact of the social construction of “motherhood” on policies and procedures related to children with special needs and their parents (frequently mothers).
An inter-professional dialogue and action was crucial to challenge a policy regarding palliative care services based on the notion of maintaining the best interest of the child.
The interdisciplinary team consistently stressed the importance of linking the well-being of the child and the well-being of the mother in every single decision made.
The inter-professional paediatric team recommended non-traditional strategies to address the needs of a family in extraordinary circumstances.
**Advocated for the implementation of new procedures for medically fragile patients with metabolic diseases.
Advocated for the right of the young patient to die with dignity and obtained special funding approval for hospice and respite care.
The role of social work in pediatrics is vital to facilitate communication between different inter-professional and intraprofessional teams.
Interprofessional teams can potentially play an important role in the policy analysis and policy-making process to address issues affecting children and their families.
Policies for children with genetic-metabolic conditions such as Pompe disease and Mucopolysaccharidosis are generally based on what is known about more common illnesses.
Inter-professional teams have the capacity to make recommendations to social policies and procedures addressed to our patient populations in collaboration with the families we work with.
I would like to thank the inter-professional team:
Yih-Jy Liu MN, RN NP
Megan Saunders and Margaret Mackrell (Nurses)
Dr. Julian Raiman and Stacy Hewson GC
Social workers from Peel Children’s Aid Society
Barbara Muskat PhD, RSW, Barbara Neilson MSW
Heather O’Driscoll MSW and David Lubert MSW
Denese Henry , Senior Secretary