1. Visiting Parents Program
Visiting Parents Team

2. Agenda Roots of the Visiting Parents Program
What is the Visiting Parents Program?
Challenges
Keeping the Momentum
Evaluation

3. Roots of the Visiting Parents Program
Very informal contact with new families before 2005
Heard of similar program from Ups and Downs in Calgary
Two moms went down to Calgary for training from a CDSS social worker in 2005
CDSS social worker provided training for interested EDSS members later that year

4. Parents’ Perspective…
We see people with Down syndrome as a natural part of the human family, not as a collection of medical conditions.

5. What is the Visiting Parents Program?
Our Visiting Parents Team - 8 members
Formal training process
Mandate timely contact with families
Supporting families:
Of a new baby with Down syndrome,
With a prenatal diagnosis of Down syndrome, or
Who are new to Edmonton with a child with Down syndrome
In Edmonton: in person, by phone or
Outside the Edmonton area: by phone and

6. Visiting Parents Team Philosophy
Our goal is to complement the role of health care professionals
We believe that support of the family by other parents is a key component of family centered care
Respect for family confidentiality is a cornerstone of our program

7. Referrals We never contact a family without their expressed permission
Referrals come from health care professionals such as:
Genetic Counselors – pre or post-natal
Social Workers
Nurses – acute care, home care
OT, PT, SLPs
Early Intervention
Pediatricians
NICU, PICU
Families can also self-refer by or phone

8. Referral Process
Add visio flowchart

9. Advantage to Community-Based Program
After a new diagnosis, parents are very focused on that particular diagnosis
Instant connection to other new parents and support organization

10. Challenges Referrals from health professionals
Getting a foot in the door at hospitals for presentations
Definition of a ‘visit’
Prenatal diagnoses contacts
Team members’ children getting older

11. Successes 15 in-person visits in three years
30 other contacts – via phone,
80 New Parent Packages/year
3 Health professional presentations
Genetic clinic relationship
CDSS picked up our model
Visited parents become active members in support group

12. Contact Us
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