1. The Value of Inter-professional Collaboration when Advocating for Medically–Fragile Children and their Families Patricia Martinez MA, MSW,RSW E-mail:patty.martinez@sickkids.ca Division of Clinical and Metabolic Genetics

2. The needs of children with life-threatening metabolic-genetic diseases The needs of children The needs of parents Advanced technology Interdisciplinary services 24 hours nursing care Support to monitor their children Respirology OT and PT Home vehicle modification Funding

3. Male Patient

4. Rare Inherited Metabolic Genetic Diseases and Interdisciplinary Teams Primary Inter- professional Team(s) Community and Government Agencies Expertise in working with rare disease Knowledge about government systems Different medical and psychosocial professionals Experience in common medical condition Relationship with families from the beginning Updated information about policy changes that affect clients

5. Impact of Inter-professional Collaboration Social Worker Metabolic Genetics Facilitates communication among different teams within and outside the Hospital Patient advocacy: - Educational counselling - Grieving - Bereavement Help explain family dynamics Identify policy gaps and make policy recommendations in collaboration with the health care team Updates community professionals about patients needs Community SW and case managers Support community health providers and other professionals understanding the unique nature of genetic metabolic diseases Provide updates of family matters when patients are not hospitalized

6. Demographics Young mother Member of a racialized group Lived below the poverty line No kinship support network In need of basic life skills Successfully completed grade 9

7. The role of social work in challenging and navigating systems This young patient needed 24 hours specialized parental/caregiver care seven days a week. Was initially determined by community agencies that the family was not eligible to receive nursing care services

8. An Inter-professional approach was vital in this case Guidance was needed to understand: Parent-child relationship Parental behaviours The impact of the stigma of having a baby with a metabolic-genetic disease. The role of the state in supporting this family.

9. Promoting the best interest of the child 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.

10. The Social Construction of Motherhood 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.

11. 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 well-being of the child and the well-being of the mother

14. Interdisciplinary approach and changes to social policy 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.

15. Changes in established procedures Advocated for the right of the young patient to die with dignity and obtained special funding approval for hospice and respite care.

16. Summary 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..

17. Summary 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.

18. Acknowledgements 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 and Barbara Muskat PhD, RSW, Barbara Neilson MSW Heather O’Driscoll MSW and David Lubert MSW Denese Henry, Senior Secretary