Telecare Soapbox: Telehealth for the intellectually disabled

About the author: Andrea Swayne is a gerontologist who received her M.A. from Bethel University (Minnesota). She possesses 25 years of experience serving seniors at all levels of the care continuum. Starting with a B.A. in music therapy from Western Illinois University, Andrea worked with the intellectually disabled along with many other populations in need. She first became familiar with telehealth while piloting remote sensor-based behavioral monitoring in the early 2000’s for Volunteers of America. Currently, Andrea is a Director of Partner Services for WellAWARE Systems, which proactively identifies variations in key wellness indicators such as sleep quality, bathroom usage and activity level.

In our short history, telehealth has primarily concentrated efforts on individuals who are aged and who are attempting to remain as independent as possible for as long as possible in their least restrictive environments. Least restrictive environments for the aged include (but are not limited to) assisted living facilities, independent living apartments or the client’s primary residence with services provided by a home health agency.

I believe that another population could significantly benefit from telehealth: the intellectually disabled (ID).

I do not profess to have master’s level knowledge in the area of the intellectually disabled. I am privileged in that my career path required me to work with many diverse populations. At one time, I possessed QMRP (Qualified Mental Retardation Professional) status after completing the required six month Music Therapy internship at a large institution for the developmentally disabled. I have since embraced every opportunity to make a difference and advocate for that population. My opinion is firm in that we can advocate for the intellectually disabled via the utilization of telehealth.

In the US, deinstitutionalization has been long thought of as an ideal. In the late 80’s and early ‘90s, I participated in that period’s deinstitutionalization movement, which placed individuals with physical limitations and/or developmental disabilities (DD, as was the terminology at the time) from large scale institutions into group homes or individual apartments. The goal was and remains true even today – to provide least restrictive settings/environments and services for both.

As any movement goes, we movers, shakers and young professionals believed that we were acting in accordance with the greater good. What we did not realize was that our movement would create significant burdens on the state-administered Medicaid system. We went from having many clients residing in one large, scale institution with a few staff members to group homes that required the same staffing patterns for a much smaller population of residents. Group homes remain the norm in 2011 as does the strain on funding sources for the ID.

Another significant strain on reimbursement systems are the independent living environments of moderately high functioning and high functioning ID individuals. These Individuals live in their own apartments and require either full or part-time staffing. This equates to one staff member per client for 24 hour supervision – daily. Part time staff members usually work twelve hour shifts or overnight shifts. The expense for service organizations, states and the US government is, at best, substantial and in the current constrained economic environment, increasingly unaffordable.

Expense put aside, the health and safety of the high functioning ID individuals who require little staffing is of great concern to care givers. I often question, what goes on with those individuals in the middle of the night? Are they able to make safety conscious decisions as to who enters their apartment?

Two questions that I pose to fellow Telecare Aware readers:
1. Would the implementation of telehealth benefit the health and safety of those individuals with intellectual disabilities?
2. Could the implementation of telehealth for the intellectually disabled reduce the cost to supportive and government agencies?

I most certainly am not recommending the replacement of staff members for clients who are in need of care-driven services and supervised environments. But for them, are there also health, safety and cost containment benefits?

In Part II, we will discuss specific examples in how telehealth has benefited intellectually disabled clients and the organizations who serve them.

Categories: Soapbox.


  1. Kevin Doughty

    Forget health and safety! – think about the potential of telecare to improve the Quality of Life of anyone whose independence is compromised by the current models of support.

    I suggest that increasing the level of assistive technology and telecare for people with learning disabilities has become a key priority for local authorities in the UK. It has been transforming the lives of many disabled people for the best part of a decade, often in the face of significant opposition from family members. Incidentally, there have been massive savings too – and it is this potential for replacing people with technology that has hindered many attempts to introduce more lifestyle monitoring and more sophisticated forms of support in many cases. We need to capture hearts and minds of the entire population so that the potential of telecare for supporting more vulnerable groups can be realised. This will be about raising awareness and giving service users more choice.

  2. I agree with Kevin information and choice are key, in the UK there are many examples to show how Telecare has enabled people with intellectual disabilities to gain their independence and reduce intrusive staffing. This is done generally by using technology to effectively stepping down in support from waking night staff to sleep-in and sleep-in to remote Telecare monitored support. It can also be used to focus support when people need it and not there “just in case”.

    Telecare can play a key role in facilitating change in support levels by reassuring friend’s, family, formal carers and professionals that the person is safe. Often Technology is far more effective and reliable than people at monitoring risk, it is always on and waiting (as long as it is turned on – the fallibility usually lies with the human turning the system on). The use of epilepsy sensors can be very effective at monitoring people at risk of going into Status epilepticus. Epilepsy sensors can alert you as soon as a person has a seizure. allowing people close by to respond and offer assistance and support. I know of many people in institutional and residential settings who have died following a seizure and that is with waking nightstaff that check (or are supposed to check) every hour.

    Technology is integrated into many people daily lives, it is a challenge though to get it integrated into peoples daily care.