Written by Jeff Keilson and Sandy Lashin-Cuewitz
Published in The NADD Bulletin
In the 21st century, we are told that individuals
are more connected than ever. Is this true? We
certainly have more potential to be connected.
Friendships are the heart of living a better life
(Holt-Lunstad, Smith, & Layton, 2010) and yet,
studies show that having hundreds of friends or
followers on social media has given rise to feelings of isolation and loneliness and increased depression and anxiety (University of Pennsylvania, 2018). To be clear, this is not a rant against
social media, which also has many benefits.
My point is this: more than half of the people
in the United States feel lonely on a regular basis (Cigna, 2018). In Britain, the same percentage of individuals with disabilities feel there are barriers that make it difficult for them to make and keep friends, and one in four are likely to experience loneliness on a daily basis (Sense, 2015). One-third of adults 45 and older feel lonely, according to AARP’s study on loneliness and social isolation (AARP Research and GfK Custom Research, 2018).
And according to the Cigna U.S. Loneliness Index,
younger generations are outpacing older adults in
feeling lonely and isolated (Cigna, 2018).
In a 1992 Boston Globe article about the dire need for flexible support for people with intellectual and developmental disabilities, as assistant
commissioner at the Department of Developmental Services in Massachusetts, I gave the following quote: “Clearly the needs are far greater
than we are succeeding in meeting. Our role is to
provide the support that each person needs, and
our support should change as a person’s needs
change.” While services have made important
strides, those words still ring true today—just as we have not made significant strides in impacting competitive employment for people with IDD, social isolation and a lack of meaningful friendships and intimate relationships significantly impacts the quality of life for too many people.
There is evidence that social networks shrink
when there is functional or cognitive decline
(Aartsen, Van Tilburg, Smits, & Knopscheer, 2004). The lack of closeness to others is shown to be damaging to our health. Just as social connections help a person recover when they are ill,
persistent loneliness causes cognitive decline and
increases the likelihood of mortality by 26 percent
(Holt-Lunstad et al., 2010). Studies show that
isolation is associated with increased risk of high
blood pressure, developing coronary heart disease
and stroke, and is as damaging as smoking 15 cigarettes a day (Holt-Lunstad et al., 2010).
The first step in making change of any kind is
to recognize that there is a problem—and not just
within the realm of human services. Within every
community are people with disabilities who make
up a fading population, which is wholly preventable. While many people with I/DD and mental health conditions are living in communities, they
often do not participate fully in community life.
It is not enough for policies and funding to provide
basic needs. The British government has recognized
the epidemic of loneliness among its disabled citizens as well as evidence that “the loneliness they endure on a daily basis is a direct consequence of Government policy” (Shipley, 2018). In January 2018, a
minister of loneliness was appointed in the UK.
As a people, we must remember that freedom,
belonging, and love are among everyone’s basic
needs. Insurers and government budgets must
treat the creating of opportunities for friendship
and services that tackle loneliness as preventative measures for good health.
Such initiatives need not be dismissed as “feel
good” ideas. Set outcomes. Gather data. Measure
success: Do the care teams and informal networks
of people with disabilities expand? Do emergency
room and physician visits and 911 calls decrease?
Improving the quality of life for millions of people with IDD is very achievable. Tragically, there is little incentive to invest in policy and programs that will truly affect change on this issue because
that change is unlikely to be immediate.
Loneliness contributes to the annual costs of
major depressive disorder, suicide, and addiction ($960 billion), as calculated by the Centers for Disease Control and the National Institute of
Mental Health (The Cost of Loneliness, 2018).
As science shows the negative health effects of
loneliness, healthcare dollars must be allocated
to cover the costs of what is shown to ease loneliness. Assistive technology has been shown to be beneficial for 37 percent of non-elderly adults
with disabilities (Kaye, Yeager, & Reed, n.d.). To turn the growing tide of loneliness, healthcare providers and community-based human service organizations would do well to integrate the principles of the person-centered planning, circle of supports, and supported decision-making in the
creation of the person’s care plan. Who would an individual call if they had a problem in the middle of the night? Who would that person call to share good news? To ensure success, this approach should be
flexible, innovative, and grounded in community.
The challenge of social isolation is particularly acute for people with IDD and mental health conditions. As a society we should not remain
complacent when nearly 50% of people with disabilities say they are lonely on any given day (Campaign to End Loneliness, n.d.). We all need
support in order to make connections and live a
full life. With the dramatic growth of managed
care across the country and with more and more
research connecting loneliness and isolation to
increased physical health and behavioral health
costs, we must not miss the opportunity to take
aggressive action to combat isolation.
Using the person-centered planning process
as the framework, people should be supported to
have a goal(s), if they so choose, in their care plan
around enhancing friendships and more intimate
relationships. This should also include strategies, resources, and how outcomes, as identified by the person, will be monitored. Many commercial health plans offer robust wellness programs
as one strategy to improve members’ health and
reduce most costly health care expenditures. This
could serve as a model for the creation of initiatives to respond to and prevent social isolation.
We must simply decide that not taking aggressive action is unacceptable and that taking action is good use of public dollars, good for state developmental services agencies, good for Medicaid agencies, good for managed care entities, good for the community and, most importantly, good for people.
References
AARP Research and GfK Custom Research, Inc.
(2018). Loneliness and social connections:
A national survey of adults 45 and older.
Washington, DC: AARP Foundation. doi.
org/10.26419/res.00246.001
Aartsen M. J. Van Tilburg T. G. Smits C. H. M., &
Knipscheer K. C. P. M. (2004). A longitudinal
study of the impact of physical and cognitive
decline on the personal network in old age.
Journal of Social & Personal Relationships,
21, 249–266. doi:10.1177/0265407504041386
Campaign to End Loneliness. (n.d.). The facts on
loneliness. United Kingdom. Retrieved from
https://www.campaigntoendloneliness.org/
the-facts-on-loneliness/
Sandy Lashin-Curewitz 