Here are the highlights from the May conference call of the Informed Decision Making Task Force: lessons learned, best practices, and suggestions for effective medical outreach and new and expectant parent support.
In 2008, the second annual Down Syndrome Affiliates in Action conference established a series of Task Forces to address issues specific to organizations supporting individuals with Down syndrome. These included educational inclusion and diversity outreach. I volunteered to lead the Informed Decision Making Task Force, devoted to improving our members’ experience when offered prenatal testing and receiving a screen or diagnostic test result.
The “IDM TF” is the longest, continuously active task force of DSAIA. It convenes via, initially a conference call, and now by video teleconference on the third Tuesday of each month at 12:30 pm, EST. What follows are highlights from the minutes of the May meeting.
On the national front, Global Down Syndrome Foundation, National Down Syndrome Society, LuMind/IDSC and the National Down Syndrome Congress issued a joint Q&A on COVID-19 and Down syndrome.
The National Center for Prenatal & Postnatal Resources, where I serve as the bioethics specialist, is working on getting its training module for medical professionals on delivering a diagnosis certified for CEUs, is updating one of its helpful resources for expectant mothers, and has increased its medical outreach training program from 10 organizations to 12.
The National Down Syndrome Adoption Network fielded over 200 requests for information in April and has increased the number of families on its registry of families wanting to adopt a child with Down syndrome.
When we came to the “Round the Horn” segment, where each attendee shares their metrics on new and expectant parents supported and medical outreach efforts, there were several helpful insights shared and suggestions.
The challenge of isolation in the time of a pandemic
Multiple attendees shared the challenge each are facing due to the isolation caused by the coronavirus pandemic. For everyone on the call who was a parent, their experience of receiving support from their local organization is unlike what is happening now.
We were able to invite a staff member and/or parent volunteer into our home soon after our child’s birth or receiving a prenatal test result to receive information about what our future can be like. We attended new parent potluck dinners and play groups where we could share and learn from fellow parents at a similar stage with their children.
These communal, supportive environments are not allowed in the age of quarantine. So, families facing a time when they feel most alone are denied the ability to meet with staff and fellow family members.
Similarly, the social distancing mitigation measures prove a challenge for effective medical outreach. Gone are the “lunch-and-learns” in area physician offices. Many hospitals will not admit non-patients to share their welcome packets for new families.
Meeting the challenge
In the face of these challenges, here are some measures the attending groups are engaged in to try to support their new members and share accurate information with their local medical communities:
- Sending emails to their contacts with area OB offices, birthing hospitals, and genetic counselors to remind them of their Down syndrome support organization’s offerings for new and expectant parents;
- Arranging drop-offs of welcome baskets and information packets with hospital contacts outside of the hospital;
- Working with the state Department of Health and Council on Developmental Disabilities on improving the delivery of information about Down syndrome and their local support organization through the medical community; and,
- Visiting new parents at their homes by dropping off welcome baskets, which was particularly appreciated for a new family with an unexpected post-natal diagnosis.
In the meantime, while organizations and everyone else has more time on their hands but with less programming due to social distancing, several groups are taking advantage of the time to plan for the future:
- Each group involved in the National Center’s training program is developing its medical outreach plan, identifying the area birthing centers, OB offices, and other venues for making regular outreach efforts;
- Working with local health departments who had not been connected with their organization to get their information to share with patients;
- Planning virtual programming for the summer to replace cancelled summer camps.
More attendees than ever
Perhaps its the desire for socialization, even if it is virtual, but after a dozen years, the IDM TF has never had more attendees. With the growth come more ideas from the new attendees while at the same time some of the same issues dealt with over the years, but that these organizations are dealing with for the first time.
Through this community of Down syndrome support organization volunteers and staff, we learn from our collective knowledge about best practices, lessons learned, and creative suggestions all towards serving new and expectant parents, their children, and their medical providers to improve the experience of welcoming a loved one with Down syndrome into this world.
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