THE BLOG

Mental Disabilities in the Digital Age: Independence and Autonomy for All

09/23/2013 08:43 am ET | Updated Nov 23, 2013

In a nation that values liberty and the pursuit of happiness, there are few greater tragedies than the routine incarceration of millions of individuals who suffer from mental disabilities, developmental impairments, or the debilitating dementia that affects up to 25% of our elderly population. However, recent technological advances offer the possibility of restoring independence and dignity to mentally challenged adults while easing the burden on families, for a fraction of current costs.

My father committed suicide because he dreaded the loss of autonomy and family connections that being placed in a nursing home, where others control virtually every aspect of life, entails. Colleagues and clients of mine, parents of severely mentally challenged children (now adults), have contemplated killing themselves and their children, once they are no longer able to care for them, because they fear what will befall them in group homes. Both kinds of institutions are experienced as prisons in many ways, and like prison, they are an expensive hell. Most patients would prefer remaining in their own homes to being placed in even the most expensive institution.

In July, New York took a major step toward restoring the dignity and rights of mentally challenged individuals by decreeing that all mentally ill patients (except those requiring round the clock nursing care) are to be moved into their own apartments where they will be cared for in supported housing. While this should be the standard of care for all of the disabled, should they so choose, the AARP reported last week that the availability of caregivers is declining precipitously. Innovative solutions are urgently needed.

The symptoms most commonly linked to institutionalization (aggression, wandering, and failures of self-care) can, in theory, be managed at home through inexpensive, off-the-shelf technological solutions equipped with software that integrates their functioning, according to internationally recognized dementia researchers Dr. Bruce Miller of UCSF, Dr. Ottavio Arancio of Columbia University, and V. Hugh Perry, Chair of the Neuroscience and Mental Health Board of Britain's Medical Research Council.

Readily available GPS devices, motion sensors, computerized speech and voice-recognition systems, and video-chat software provide a powerful toolset for ameliorating many of the conditions that lead to institutionalization. Equipping patients with mobile devices that will remind them when to use the toilet, take their medication, get to appointments, guide them back home if they wander too far, and allow them to talk face-to-face with family members or caregivers remotely, is not the stuff of science-fiction: in fact, it closely resembles what can be bought at an electronics store, like Best Buy, for a few hundred dollars.

Other recent innovations that would allow most patients who are not yet bedridden to live at home, either on either own or with busy loved ones, include automated thermostats that regulate home temperature, toilets that wash and dry their users, timers to turn on and off lights, and a tiny computer in the form of a pill, recently approved by the FDA, that transmits real-time biometric information including medication-taking behaviors, vital signs, and rest patterns.

A home can now be fully equipped for a one-time cost of less than $4,700. The cost of developing the software to integrate these components into a unified, secure care-taking system with robust privacy safeguards has been estimated at about $10 million - or less than $2 for every patient - according to software architect, Matthew Flaming, Director of Software Development at a leading cloud-computing integration company.

Despite concerns about privacy, there is no greater invasion of our privacy than 24/7 institutionalization

Of course, technology alone cannot answer the essential need for human contact and interaction. However, with appropriate digital watchmen in place, the amount of in-home caregiving required drops dramatically: $18,000 per year, per patient, would more than adequately cover meals-on-wheels delivery and daily check-ins from a caregiver for bathing and other assistance. In total, these technological and social innovations would bring enormous independence and improved quality of life to the mentally impaired, for one-half to one-tenth the cost of placement in residential care.

This system would enable mentally challenged patients, like my colleague's and clients' severely mentally disabled sons, or my frail father, to remain at home in the family instead of being incarcerated. Spouses and parents could continue to work at the their jobs, take care of younger children and go on with their lives with peace of mind that their mentally challenged family member was safe, and manageable, instead of suffering the guilt and anxiety of institutionalization.

Since almost fifty percent of us are single, and want to age at home, rethinking our current approach to caring for the mentally challenged -- which is both fiscally unsustainable and inhumane to patients and families alike -- should be a national priority. To identify the best technologies for these purposes and to ensure their safety and efficacy for in-home patients, we should prioritize funding for a comprehensive pilot program.

We've already waited too long to put the digital revolution to work for our most vulnerable. As a nation, though, we can do more to create new, affordable options for patients and their families. There isn't an app yet for keeping a mentally challenged patient safe in her own home with dignity and privacy. But national fiscal interest, moral integrity, and our own self-interest, dictate that there should be.