M-ENABLING SUMMIT Engaging with Others via Social

Media

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June 1-2, 2015 Washington, D.C.

Michael Morris

Executive Director National Disability Institute

Safely Using Social Networks to Address Caregiving and Service

Delivery Gaps

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WHAT WE KNOW ABOUT CAREGIVERS AND AMERICAN’S WITH DISABILITIES

The Current Picture in the U.S.

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Incidence and Cost of Informal Elder Care

• Estimated 1 in 5 adults in U.S. provides informal care to an elderly family member or friend

• 30 billion hours spent on informal elder care annually in U.S. 22.3 billion hours provided by adults >= 65 years of age

• $522 billion annual “opportunity” cost Lost wages, lost productivity

Source: Pew Research / Rand Corporation

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http://www.rand.org/pubs/research_briefs.html Valuing the Care We Provide Our Elders

Incidence of Disability

• According to the U.S. Census Bureau, approximately 1 in 5 adults in the U.S. are living with a disability

• 29% of people with disabilities said that they didn’t have all of their health care needs met, compared to 12% of people without disabilities

Source: Centers for Disease Control and Prevention

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Absenteeism Cost Estimates • 77% of workers with a chronic health condition accounted for

lost productivity totaling $84 billion (asthma, cancer, depression, diabetes, heart attack, high blood pressure, high

cholesterol or obesity) Source: Gallup-Healthways Well-Being Index

• Estimated annual unscheduled absenteeism costs per employee

Approximately $3,600 per hourly employee

Approximately $2,650 per salaried employee

Source: Absenteeism: Bottom Line Killer (from work force solution company publication by Circadian)

http://www.forbes.com/sites/investopedia/2013/07/10/the-causes-and-costs-of-absenteeism-in-the-workplace/

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Common chronic conditions affecting caregivers

How Can Social Networks Help Alleviate

These Social and Economic Issues?

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Social Networks can Bridge and Support Formal and Informal Supporters

• Recognize the importance and value of the

Informal Support System

• Ease the workload to increase communication

• Enhances coordination to share and exchange

tools/resources for all involved

• Expand outreach to involve larger community

Social Networks Need to be Sensitive to Vulnerability and Respect Privacy

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• 93% of adults in the US say that being in control of who can get information about them is very important (74%) or somewhat important (19%);

• 90% say that controlling what information is collected about them is very important (65%) or somewhat important (25%)

• Americans also value having the ability to share confidential matters with another trusted person. • Nine-in-ten (93%) adults say this ability is important to them.

Source: Pew Research Center: May 20, 2015

Introducing Community Tyze

A secure, online

tool for individuals

enabling network

of natural supports

and paid supports

with the person at

the center of the

network given the

lead role

Tyze Research During 2007-2013, Robert Wood Johnson Foundation conducted research of 2,000 Tyze networks, composed of some 10,000 network members. Users reported:

90% reported Tyze made it easier to update people

88% reported easier to share important information

78% can better manage their health or care

84% reported an improved quality of life

86% felt more connected to their family and friends

82% felt less alone in facing their health or care situation

90% reported reduced healthcare costs

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http://www.rwjf.org/en/research-publications/find-rwjf-research/2011/09/combating-isolation-and-loneliness-with-an-online-personal-netwo.html

Personal Story Showcase Tyze

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• Paul – 37 year old, married father of 2 • Motorcycle accident left him in chronic pain and limited mobility • Paul now needs a cane and uses a wheelchair for distances • He and Amanda struggle to care for their children. • Amanda went back to work full-time • Friends didn’t know how to help and were overwhelmed with his

needs. • Paul experienced social isolation • He couldn’t help around the house as much and missed his

bowling league.

They heard about a private, social networking site that might be able to help their situation - Tyze. The Caregiver’s Living Room http://www.donnathomson.com/

How Tyze Made a Difference For Paul & Amanda

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Paul built a private Tyze network and invited a small group of supporters. He posted a request for someone to give his children a ride to

class, and his neighbor clicked “I’ll help.” He posted a message about how he missed bowling. A supporter

from his league saw the message and rallied other friends and staff from the bowling alley to find a way to help Paul start bowling again.

Paul wants to see his friends but isn’t always up to having visitors. Amanda and supporters used Paul’s calendar to schedule when friends were available to visit. Paul calls them to drop by if he feels up to a visit when they are available.

The Caregiver’s Living Room http://www.donnathomson.com/

To learn more about Community Tyze or to view a demonstration

Mary Lynn ReVoir

Community Tyze Manager

National Disability Institute

phone: 563.569.7112

email: mlrevoir@ndi-inc.org

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