Children and Youth with Special Health Care Needs (CYSHCN) and Families Rights and Responsibilities for Telehealth
Summary of the rights and responsibilities of parents, caregivers, and children as it relates to telemedicine visits.
Read MoreEmbrace the convenience and accessibility of virtual healthcare, making your healthcare journey more informed and connected. Your path to empowered and connected care begins here.
It is the use of live video, with two-way interaction, for medical care delivery or clinical services. Telemedicine refers to the use of telecommunications technology to provide healthcare services remotely, allowing physicians to conduct medical consultations, diagnose patients, prescribe treatments, and monitor health conditions without the need for in-person visits.
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Telemedicine can be a convenient way to receive care and improve patient access. It can decrease time to travel to an expert center which may be helpful for people living with disabilities, in rural areas (geographic barriers) or underserved communities. It may also decrease the cost of travel and time spent for and during visits. Some patients and families may be more comfortable at home and it may be easier for several family members to attend and participate in the sessions.
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To perform a video visit, a device with a microphone and camera is required. This can be a smart phone, tablet, laptop or desktop with a webcam (Data rates may apply).
It is important to have access to hi-speed internet. If you can stream videos online without a lag, or use FaceTime or Skype, then your connection is appropriate. An internet speed of 5 Mbps or more is adequate for a visit.
Taking the call in the car or on-the-go is unsafe. Plan on being stationary for your visit for safety and better internet connection: Plan on a private, quiet area.
Your clinic should provide information on an application or internet browser that your visit will be conducted through.
If you are waiting for your appointment, try testing your equipment. Make sure your camera/video is working, your microphone is on, and that your speakers are on and at a good volume, too.
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Pre-visit requirements may vary by institution. You may be asked to complete forms to gather information. The goal of this is to prepare for the visit and make sure important information is available for review before the visit.
If you are meeting with a genetics provider, then they will likely ask you family history questions. Typically health history will be collected siblings, parents, children (first degree relatives) and aunts, uncles and grandparents on both sides of the family (second degree relatives). Obtaining family history information specific to the condition for which you are being seen for will be most helpful (i.e. if you are being seen for cardiology, then family members with any type of cardiac condition and ages of onset would be helpful; if you are being seen in cancer, then family members with cancer and types of cancer and ages of onset, would be helpful.)
Write down your questions ahead of time. For telehealth visits, sometimes it can be easier to have questions on a piece of paper as changing screens to review questions on the same electronic device being used for the telehealth visit can interrupt camera functioning. It can also be helpful to reflect on your main concerns before the visit to share with the medical team.
Plan for a private and well-lit area to perform the visit.
Log on 10 minutes before the meeting and check your audio and video before the visit. This includes getting wireless headsets/ear buds connected to the audio prior to the visit because sometimes these can be difficult to connect depending on the application being used for the visit.
Be prepared for a physical examination through telemedicine.
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Previously, your telemedicine visit was likely billed as an in-person visit through your insurance. However, with COVID-19 Pandemic regulations ending, insurance coverage may have changed. Check with your insurance to figure out if your insurance covers telemedicine visits and if any special instructions are needed for coverage such as an in-person visit once a year.
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Start with Your Provider’s Office: Inquire if they offer telehealth.
Explore Insurance Options: Check with your insurance provider for covered telehealth services.
Search Telehealth Networks: Look into dedicated telehealth platforms or services.
Use Online Resources: Find telehealth directories or local service providers.
Get Referrals: Ask for recommendations from trusted sources.
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Clinics are required to use systems that protect patients’ privacy and follow HIPAA (health insurance portability and accountability act) guidelines. If you have concerns about your information, please ask your provider. In addition, making sure you are in a private location during your appointment where you are not visible or able to be heard by others is important to maintain your privacy.
For detailed information:
Summary of the rights and responsibilities of parents, caregivers, and children as it relates to telemedicine visits.
Read MoreResources to help families (from first timers to seasoned users) get ready for their telemedicine appointments
Read MoreThe Nuts and Bolts of Telemedicine: A series of 4 webinars that prep families for their first telemedicine appointments
Read More"Are You Connected?" How to make sure you have Interent Access for your TeleHealth Appointment (27 Min)
Read More"Do you have a Device?" How to make sure you have a device for your telemedicine appointment (37 min)
Read More""Can you see you provider?" How to make sure that you can access your telemedicine appointment (47 min)
Read More"Your family's first telemedicine appointment" How to make sure you and your family are prepared for your first telemedicine appointment (50 min)
Read MoreA resource to help an someone feel comfortable being on camera
Read MoreResource to help families navigate a phone plan or cell phone minutes
Read MoreResource to help someone figure out the best place to find or make sure you have privacy or quietness
Read MoreResource to help families navigate securing a device for a telemedicine appointment
Read MoreResource to help families navigate having no internet signal
Read MoreResource to help families create an email address
Read MoreResource to help families get the accommodations they need for their telemedicine appointment
Read MoreResource to help families see if their doctor can have telemedicine appointments
Read MoreResource to help families log into their scheduled telehealth appointment
Read MoreResource to help family feel comfortable sharing information over telemedicine
Read MoreResource to help families find or ask for interpretation services, if needed
Read MoreResource to help families navigate having no access to internet
Read MoreResource to help parents prepare their child for a telemedicine appointment
Read MoreResource to help families find coverage for their telemedicine appointment
Read MoreChecklist to help families see if they are ready for there telemedicine appointment
Read MoreTipsheet for Patient & Caregiver to help them get ready for thier telemedicine appointment
Read MoreYour provider or team seeing you will take or review your medical and/or family history. Medical history may also include prenatal history (medications, exposures, etc). If you are sharing your family history for the first time, be prepared to share family history information for a family tree. When doing so, it will be particularly important share conditions like known genetic conditions, cancer (especially before age of 50), multiple (2+) miscarriages, intellectual disability/developmental delay, autism.
A visual inspection will be used throughout the physical examination and the workflow can be similar to an in-person exam. The following tips can help your provider while they conduct the virtual physical exam:
You will work with the Clinical Genetics provider to see if you need to submit a blood sample or a buccal (cheek) swab, or a saliva sample.
Your Clinical Genetics provider will discuss this with you. Depending on the group, you may be asked to make a follow-up appointment or results may be given over the phone.
Most of the time the Clinical Genetics provider will work with the labs and your insurance to see if testing has been approved by your insurance and how much of the cost is covered. If testing is not covered your insurance, your Clinical Genetics provider or the laboratory can discuss what an out-of-pocket cost would be to you if you do NOT go through insurance.
Your Clinical Genetics providers will review how you can obtain copies of your genetic test results.
Please have your child present for the visit unless told otherwise. Before the visit, you may want to prepare some quiet toys or books that can help keep the child entertained during the visit. During the physical exam portion of the visit, it is often helpful to be able to turn your camera around so that it is easier to keep your child in view. It is helpful to look for this function in the camera or device you will be using for your appointment before the visit.
During your visit, you can expect the provider to have you help show them different things on the video including your child’s walk, coordination, and specific facial features. Older children are often encouraged to participate in the visit, either answering or asking questions.
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