Resource eBlast April 2020
for families of children and youth with special health care needs
COVID-19 SERIES, Part 2: Telehealth Tips
This is the second of a three-part series.
Coming soon, Part 3: Parenting and Ideas for Kiddos.
In our current reality of social distancing, “screens” have become the most important way to not only find community, connect with loved ones, and continue learning, but also to receive services for our children with special health care needs. Some of us have experience with telemedicine or telehealth, and for others this is the first time. For most of us this has been a jump off the diving board into the deep end of the telehealth pool—sink or swim! Below are resources with guidance on how to, what to expect, and nitty-gritty policy changes.

Just in... Telehealth Tips From Family Organizations
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.

Pediatrician Guidance on Telehealth
Here is guidance from pediatricians describing what telehealth is and can be, how to prepare, and what standards you should expect (in terms of privacy, process etc.).

Now that there are restrictions on movement/shelter in place and social distancing is the norm, how do you know when to take your child in for care or to consider using telehealth? The first and most important option is to always to call your pediatrician for guidance. This When and Where to Get Medical Care resource may help you feel informed for the discussion with your pediatrician.

Webinar Highlighting Family Perspectives on Telegenetics
On Friday, April 10, 3:00pm ET, the National Genetics Education and Family Support Center is hosting a free webinar that will explore the basics of tele genetics including how it works, why it is important, and family perspectives on the potential benefits. Register here

Checkout their infographic on telegenetics for families created by families in partnership with Family Voices.

Videos to Help Prepare for and Understand Expectations for Telehealth Visits
  • The Telehealth Etiquette Video Series was made to help providers learn how to do “good” telehealth visits. They could be useful to you too in understanding what to expect, your rights, and what is “good”/ “bad” in a visit. NOTE: these videos are long but have actors playing out what works/not. The acting is a bit exaggerated but very effective and there are also some blooper reels… because we all could use a laugh right now!

Therapy Visits via Telehealth
If your child is going to have a therapy visit via telehealth—such as early intervention, PT or OT--perhaps these tips for receiving remote early intervention services ( here in English and here in Spanish) will help you prepare.

Details for Actions and Policies
If you want to know the nitty-gritty, up-to-date details of what actions and policies in your state are allowing the quick shift from in-person care to telehealth during the pandemic, consider exploring the following resource:

The Center for Connected Health Policy (CCHP) provides a list of state by state actions to remove policy barriers to telehealth utilization to address the pandemic.

Notes about this link:
  1. The actions are clickable links to policy.
  2. There are 2 helpful links on this document prior to the list by state: a) a list of licensure waiver actions by state and b) Quick Overview document that categorizes the state actions and provides embedded links to actions.

Do I Have to Pay for Telehealth?
Read a summary of what is covered by various public and private payers during the pandemic . Keep in mind that events are evolving. This is a living document and information may change frequently as new information and new policies become available/are enacted. 

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