Telehealth and Children with Disabilities



“Persons with severe functional disabilities are the highest users of health care services. Care
for the needs of this population represents a significant percentage of our national health care costs.
A growing body of research has demonstrated the efficiency of self-management strategies and
caregiver engagement for effective long term care for individuals with chronic medical conditions.” 1

One of the main challenges for parents with children who have chronic health problems is to effectively juggle their role to provide needed care with the requirements of everyday living. The task of caring for a child with complex disabilities at home may well be stressful and overwhelming for parents and caregivers. The provision of such care may prove to be detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities.2

Definition: “Telehealth is the provision of health care remotely by a means of a variety of telecommunication tools, including telephones, smartphone, and mobile wireless devices with or without video connection.” 3

Telehealth increases access to: 1) health care by providing convenience and eventually reducing costs, 2) episodic and chronic conditions, and 3) an avenue to serve the individual patient and caregivers at home with the use of mobile devices. Some specifics:
• Increased access to therapy for individuals with physical, medical and/or mobility disabilities.
• Increased access to disability specialists regardless of geographic area.
• Access to care in a native language (e.g. American Sign Language).
• More time to collect information about thoughts, feelings and behaviors outside of office appointments.
• Flexible scheduling. 3,4

The era of the visit to a patient’s home by a physician with a black bag that contained the obligatory instruments for diagnosis and treatment is long gone. The reality is that the technology of modern health care just doesn’t fit into those little black bags. More than a half century ago, one of us (HBW) directed a program in the metropolitan Cleveland Ohio area to provide needed dental services (using portable equipment by local dentists and dental students from Western Reserve University) for patients who were home-bound or in nursing homes. 5

In January 2018, the word “telehealth” was entered into the U.S. Library of Medicine of the National Institutes of Medicine search engine. Between 1975 and 1991 no more than five telehealth reports were listed on an annual basis. In the next few years there has been an amazing increase of interest in this field. By the year 2000, 828 articles were listed; 2,071 articles in 2010 and 2,417 articles in 2015. 6

Example 1. It’s morning. You’re getting the kids ready for school. Mom and dad also are preparing for their work day. One of kids is doing the “ordinary” things. A problem arises with your other child (who has special health care needs); just doesn’t feel well. Is it serious or just the “usual”? Your first thoughts may be: “Should we get an appointment with the covering doctor?” “Who’s going to bring the child for the medical consultation?” “What about the office work appointment downtown?” These and so many other conflicting thoughts arise in the ordinary set of circumstances.

Example 2. Your child with special health care needs requires constant monitoring regarding respiratory  difficulties and feeding issues. How does a parent carry out these duties while maintaining the “routine” family activities?

In these examples and so many other circumstances, telehealth could play a critical role in your family’s daily activities. In the first scenario, a rapid contact would be made with a covering practitioner (be it a physician, nurse practitioner or other health professionals) by means of a variety of telecommunication tools, including telephones, smartphone, and mobile wireless devices. In many of these cases, the difficulties can be resolved without the need for an office visit – thereby reducing costs and interference with the family’s scheduled events. In the second example, continuing electronic monitoring would automatically raise an alarm bringing contact between the monitors and the caregiver; much like the home burglar systems increasingly covering private homes.

In addition, in the second example, enter The MAVEN Project (Medical Alumni Volunteer Expert Network). The MAVEN Project is a mission-driven health care nonprofit organization that provides timely access to medical expertise by linking their corps of physician volunteer experts to organizations working with under-served populations, via telehealth. In this case, your child’s primary care provider could connect with a MAVEN Project specialist via HIPAA-secure telehealth technology to receive advice about your child’s (deidentified) case. Instead of waiting months to see a specialist and traveling to yet another appointment, with the MAVEN Project physician volunteer’s guidance, your child’s care could be managed locally in the primary care setting or could be effectively pre-triaged by a specialist, confirming that you do need to make the trip to see the specialist in person.

1. There often is poor attention to recommended preventive asthma medications which could lead to serious consequences. A program can be developed for school-based telehealth asthma management to overcome barriers to preventive asthma care. 7

2. Home environment assessments and subsequent modifications by healthcare professionals can enhance home safety. However, travel time, expense and the availability of qualified professionals can limit the broad application of this intervention. Telehealth has the potential to increase access to home safety evaluations.8

3. In order to improve services in under-served communities, dental hygienists can identify dental decay in children 4-7 years using telehealth photography; thereby establishing the extent of needed services.9

4. Telepsychiatry consultations for pediatric psychiatric emergencies are cost efficient from a hospital system perspective compared with in-person consultation at a children’s hospital main campus. Telepsychiatry also improves clinical and operational efficiency and patient and family experience. 10

Estimates suggest that in 2015, 15 million U.S. residents received telemedical care in the prior year; with expectations that this number will increase significantly over the next few years. Changing reimbursement models will help drive this increase. “Social factors should also influence the growth as people get more comfortable with the technology on both the provider side and the patient side of the transaction.” (Emphasis added) 11

There are several legal obstacles to the practice of telemedicine, the main one being licensure. “Healthcare providers, including physicians, are licensed by states. Usually, their practice is governed both by the state in which they physically practice (the “home state”) and the state in which the patient is located (the “remote state”). If a California specialist in dealing with issues faced by a child with particular special health care needs in New York, the physician must be licensed both in California and in New York. Otherwise, New York can find the California-licensed physician guilty of practicing medicine in New York without a New York license. Some states have attempted to solve this problem by creating a limited telemedicine license for which out-of state physicians can apply. However, this solution doesn’t exist in all states.” 12

“… (a) key legal issue is regulating the standard of care. Some states, such as California, adhere to a policy where the standard of care in telemedicine services must be the same as if providing the service in person. In other words, patients seen via the Internet cannot be treated any differently, or with less diligence, than if seen in person. The idea is to ensure clinicians don’t waive their duty of care merely because the patient isn’t present in person.” (Emphasis added) 12

“When it comes to medicine, it seems the future is always now. When it comes to telemedicine, it seems that the future looks even brighter.” 12 •

H. Barry Waldman, DDS, MPH, PhD is SUNY Distinguished Teaching Professor Department of General Dentistry, School of Dental Medicine, Stony Brook University, NY
Lisa Bard Levine, MD, MBA, Chief Executive Officer, The MAVEN Project (Medical Alumni Volunteer Expert Network), Boston, MA
Andrew G. Schwartz, DDS, FACD, Clinical Assistant Professor, Director, Division of Behavioral Sciences and Practice Management Department of General Dentistry School of Dental Medicine, Stony Brook University, NY
Rick Rader, MD, FAAIDD, DHL (Hon), Director Morton J. Kent Habilitation Center, Orange Grove Center, Chattanooga
Steven P. Perlman, DDS, MScD, DHL (Hon), Global Clinical Director, Special Olympics, Special Smiles; Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine

Source Exceptional Parent Magazine

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2. Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005; 115(6):e626-636.
3. Dorsey ER, Topel EJ. State of telehealth. New England Journal of Medicine, 2016; 375:154-161.
4. American Psychologic Association. What are telehealth and telepsychology? Telepsychology and persons with disabilities. Available from: Accessed January 11, 2018.
5. Waldman, HB. Report of a demonstration dental care program for homebound chronically ill and aged patients. Journal American Dental Association, 1964; 69(12):722-729.
6. U.S. Library of Medicine of the National Institutes of Medicine. Available from: Accessed January 11, 2018.
7. Halterman JS, Fagnano M, Tajon RS, et al. Effect of the school-based telemedicine enhanced asthma management (SBTEAM) program on asthma morbidity: A randomized clinical trial. Journal American Medical Association Pediatrics 2018 Jan 8:e174938. doi: 10.1001/jamapediatrics.2017.4938. [Epub ahead of print]
8. Romero S, Lee MJ, Simic I, et al. Development and validation of a remote home safety protocol. Disability Rehabilitation Assistive Technology, 2018; 13(2):166-172.
9. Daniel SJ, Kumar S. Comparison of dental hygienists and dentists: clinical and teledentistry identification of dental caries in children. Internal Journal of Dental Hygiene, 2017;15(4):e143-e148.
10. Thomas JF, Novins DK, Hosokawa PW. The use of Telepsychiatry to provide cost-efficient care during pediatric mental health emergencies. Psychiatric Services. 2017 Oct 16: doi:
10.1176/ [Epub ahead of print]
11. Donohue J. Telemedicine: What the future holds. HealthCare – IT News Available from: Accessed January 12, 2018.
12. Cohen MH. Telemedicine: The Future of Health Care. Available from: Accessed January 12, 2018