Telemedicine for People With Disabilities and Complex Care

Telemedicine can remove some of the hardest parts of getting medical care for people with disabilities, medically complex conditions, developmental disabilities, and significant mobility limitations. But virtual care only works when it is designed around the patient using it.

For many people, telehealth saves a drive.

For someone who uses a power wheelchair, depends on specialized transportation, communicates through an AAC device, or cares for a medically fragile child, it can save an entire day of planning.

That difference matters.

A child with several chronic conditions may have appointments with neurology, pulmonology, gastroenterology, primary care, therapy, and medical-equipment providers. An adult with a major physical disability may need transportation arranged days before an appointment. A homebound patient may have enormous difficulty getting into a physician's office at all.

Telemedicine cannot replace every part of that care.

But used correctly, it can make the parts that do not require the patient to physically be in the room considerably easier.

That is where telehealth has become particularly important for people with disabilities and complex medical needs.

Who Can Benefit From Telemedicine?

There is no single type of patient who fits under the broad label of "special needs."

People using telehealth may include:

• children with medically complex or chronic conditions
• people with intellectual or developmental disabilities
• autistic children and adults
• people with significant mobility limitations
• people who are deaf or hard of hearing
• people who are blind or have low vision
• people who use augmentative and alternative communication, or AAC
• patients dependent on medical equipment at home
• adults who are homebound because of illness, disability, or frailty
• patients who depend heavily on parents, family members, aides, nurses, or other caregivers

The benefit of telemedicine will be different for each person.

For one patient, the biggest advantage may be avoiding transportation.

For another, it may be having several specialists and caregivers participate in the same appointment.

For another, the familiar environment of home may simply make communication easier.

Why Telemedicine Can Matter More for Complex Care

Traditional healthcare asks patients to come to the healthcare system.

That sounds simple until getting there becomes one of the hardest parts of receiving care.

Imagine a child who uses a feeding tube, requires oxygen, and needs specialized transportation.

A 20-minute follow-up appointment may involve packing equipment, medications, emergency supplies, loading the child into a vehicle, driving to a hospital, navigating parking, waiting in a crowded clinic, completing the appointment, and doing everything again on the trip home.

If the physician primarily needs to review medications, talk with the parents, look at recent readings, and discuss how the child has been doing, making the entire family complete that journey may add very little to the medical evaluation.

A video visit can sometimes turn that same appointment into a much more manageable part of the day.

That does not make telemedicine "better" than in-person care.

It means healthcare providers can be more deliberate about which visits actually need to happen in person.

Telemedicine for Children With Complex Medical Needs

Children with medical complexity are one of the clearest examples of where virtual care can help.

These children may see several specialists and receive treatment across hospitals, physician practices, therapy programs, schools, and home-health providers.

Telehealth can be useful for:

• routine specialist follow-ups
• medication reviews
• reviewing laboratory or testing results
• looking at certain visible symptoms
• troubleshooting equipment
• discussing feeding or nutrition concerns
• caregiver education
• treatment planning
• care coordination
• deciding whether a new problem needs in-person evaluation

A parent may be able to position a camera so a clinician can see a feeding-tube site or visible skin concern.

A home-health nurse might participate and provide vital signs or other observations.

A specialist who normally works several hours away can sometimes join without requiring the family to travel.

None of those examples eliminates the need for hands-on medicine.

They simply help separate the care that requires physical examination or testing from the care that does not.

Getting Several People Into the Same Room

One of telemedicine's less-discussed advantages is that the "room" no longer has to be physical.

That can be enormously useful in complicated cases.

A virtual appointment might include:

• the patient
• a parent or caregiver
• the primary physician
• a specialist
• a home-health nurse
• a therapist
• a care coordinator
• a school nurse

In traditional medicine, getting six people into the same office at the same time can be nearly impossible.

Virtual care can make that coordination more realistic.

And for families managing complicated conditions, coordination is often part of the treatment itself.

Autism and Telehealth

Telehealth also has a growing role in autism-related services.

Some evaluations can include structured interviews with parents and clinician-guided observations performed while the child is at home.

That home setting can sometimes be useful because clinicians get to observe behavior in an environment the child already knows.

Virtual care is also used for parent-mediated interventions.

Instead of a clinician simply working with a child through a screen, the clinician may coach a parent or caregiver while that person interacts with the child.

This can include communication strategies, behavioral approaches, developmental interventions, or techniques that parents can continue using outside the appointment.

There are limits.

Some evaluations still require in-person assessment. Some children engage poorly through video. Some therapies work substantially better face to face.

And placing more responsibility on a parent who is already overwhelmed is not automatically a benefit.

The right question is therefore not:

Can autism services be provided through telehealth?

Some can.

The better question is:

Which parts of this patient's care work well remotely, and which parts should remain in person?

Teletherapy and School-Based Care

Schools can also act as telehealth access points.

Depending on the program, students may receive virtual:

• speech therapy
• occupational therapy
• behavioral health services
• counseling
• specialty consultations
• chronic-condition support

A nurse, aide, teacher, or other staff member may help facilitate the appointment on site.

For families, that can mean fewer missed workdays and fewer trips between home, school, and medical offices.

For schools in areas with shortages of certain professionals, telehealth can also expand access to clinicians who may not otherwise be available locally.

Medicaid has recognized telehealth as one approach states can use to improve access to services for children and other Medicaid populations.

Telehealth for Homebound Adults

Telemedicine becomes particularly important when getting to a doctor's office is itself a serious medical undertaking.

Someone living with advanced neurological disease, major mobility limitations, severe cardiopulmonary disease, frailty, or another disabling condition may struggle to attend routine outpatient appointments.

Virtual care can sometimes handle:

• medication management
• symptom checks
• follow-up appointments
• behavioral health care
• caregiver discussions
• chronic-care management
• review of home measurements
• determining whether an in-person evaluation is needed

The strongest models often combine virtual medicine with people who can provide hands-on help in the home.

That could include a family member, visiting nurse, home-health professional, or other caregiver.

The physician may be remote.

The care does not necessarily have to be.

Accessibility Is Not an Extra Feature

There is an important catch.

Telemedicine only improves access if the telemedicine itself is accessible.

A patient who cannot enter a doctor's office has gained very little if the virtual alternative cannot be used with their screen reader.

A deaf patient has not received meaningful virtual access if there is no appropriate way to communicate.

Someone with a cognitive or developmental disability may struggle with a telehealth platform requiring multiple passwords, downloads, account registrations, and complicated menus before the appointment even begins.

Accessible telehealth may require features such as:

Captioning

Patients who are deaf or hard of hearing may need captions or other communication accommodations.

Sign Language Interpretation

An interpreter may need to join the virtual appointment as an additional participant.

Screen-Reader Compatibility

Blind and low-vision patients may rely on screen readers and keyboard navigation to enter and use the telehealth platform.

AAC Support

Patients using augmentative and alternative communication need enough time to formulate responses.

Clinicians should not interpret additional response time as confusion or inability to answer.

Simple Instructions

A telemedicine system should make joining an appointment as straightforward as possible.

Complicated technology becomes a healthcare barrier remarkably quickly — a problem covered in depth in our guide to telehealth usability.

Flexible Communication

Some patients communicate more effectively through typing, audio, video, caregiver assistance, or a combination of methods.

Healthcare providers should think about the individual patient rather than assuming one virtual format works for everyone.

Federal disability protections apply to healthcare services delivered through telehealth. HHS has specifically addressed accessibility and effective communication in virtual healthcare.

The Caregiver's Role

Caregivers often make complex telemedicine possible.

A parent may hold the camera.

A spouse may read medication labels.

A home-health aide may help obtain measurements.

A nurse might assist with an examination being directed remotely by a physician.

But there is an important distinction:

The caregiver is helping the patient receive care. The caregiver is not the patient.

Clinicians should continue addressing the patient directly whenever possible.

That is especially important for adults with intellectual or developmental disabilities.

There may also be moments when the clinician needs to speak privately with the patient.

Topics involving safety, abuse, mental health, sexuality, caregiver relationships, or other private matters cannot always be discussed freely while another person is sitting beside the patient.

Good virtual care plans for that.

When Telemedicine Is Not Enough

Telemedicine should not be presented as a substitute for every medical appointment.

There are obvious things a camera cannot do.

A clinician cannot perform every neurological examination remotely.

They cannot obtain an X-ray through a laptop.

Some wounds need to be touched, cleaned, measured, or treated.

Wheelchair positioning may require hands-on evaluation.

New or rapidly worsening symptoms may need immediate assessment.

Certain diagnostic evaluations require equipment that only exists in a medical facility.

This is why hybrid care is usually the more useful way to think about telemedicine.

Use virtual care where it removes unnecessary burden.

Use in-person care where physical examination, testing, procedures, or direct observation add meaningful clinical information.

Patients should not be forced into either extreme.

Preparing for a Complex Telehealth Visit

Families can make virtual appointments considerably more useful by doing a little preparation beforehand — our telehealth video visit tips cover the basics for any appointment.

Have available:

• an updated medication list
• current diagnoses and relevant medical history
• recent vital signs or home measurements when available
• medical-equipment information
• notes about symptoms or changes
• questions you want answered
• recent test results if the clinician does not already have them

If the clinician needs to see something physically, make sure there is adequate lighting and that the device can be moved.

If another caregiver or clinician should participate, ask the practice whether they can receive a separate invitation.

Most importantly, request accessibility accommodations before the appointment whenever possible.

That might mean captioning, an interpreter, additional appointment time, caregiver access, or another communication accommodation.

What Good Telemedicine Should Feel Like

Good telemedicine for a patient with complex needs should not feel like trying to force a complicated patient into technology designed for an uncomplicated appointment.

It should work the other way around.

The technology and clinical process should adapt to the patient.

That may mean taking more time.

It may mean involving caregivers.

It may mean bringing several clinicians onto one call.

It may mean switching an appointment to in-person care when a physical examination becomes necessary.

It may even mean deciding that telemedicine is not the right format for a particular patient.

That flexibility is the point.

Telemedicine is not valuable because healthcare happens on a screen.

It is valuable when the screen removes a barrier that never needed to exist in the first place.