These tips were recently shared with Family Voices by the national network of Family-to-Family Health Information Centers and Family Voices Affiliate Organizations.
Paying for Phones:
If you do not have any sort of screen (computer or phone with face time) OR you are not able to pay for minutes/phone bill given employment issues resulting from COVID-19, PLEASE let your pediatrician know and/or
your Family-to-Family Health Information Center
. There may be ways to help pay for phones when they are necessary lifelines for medical care in this time of crisis.
Presence: If for some reason you are not able to be with your child with special health care needs or your young adult/adult with disabilities, advocate for use of a screen to be in contact (
virtual presence) with your son or daughter AND to be present to participate in any medical or other services--such as rounds, therapies, bedside care, etc.
Education/Training: If your home health provider of medical care or therapies is no longer able to physically come into your home and you now have to provide the medical care or therapy yourself, but do NOT know how to do so,
contact the provider who ordered the care (for example, a specialist), your pediatrician, the therapy agency, or home health agency, and request a telehealth visit with instruction on HOW to provide the care. Do NOT be afraid or hesitant to reach out for ANY kind of guidance or assistance if you are at all unsure of what to do.
Blocked numbers: Some medical and service providers are working from home when they are making phone or telehealth calls. If you are expecting a call/telehealth call and it comes from a blocked number, consider answering because it is likely your provider.
Relationship: If you are doing a telehealth call with a provider who does not regularly care for your child with special health care needs, be prepared that they do NOT know your child. Have your care binder or important medical information nearby so that you can easily share.
Patience: If you are calling in to telehealth for medical visits that are not during a
scheduled appointment time, expect a WAIT. It is okay to put the phone or equipment on speaker and go about your family life until it is your turn.