Measuring quality of life—The National Core Indicators and Tennessee

Photo of two happy adult with Down syndrome outside

How do you measure quality of life? How do you measure whether persons with intellectual disabilities are living a life similar to their neighbors? These questions lie at the heart of the National Core Indicators, and the VKC UCEDD is now part of this important effort in Tennessee.

The National Core Indicators (NCI) is a voluntary, nationwide survey of adults with disabilities now used by 39 states—asking people how they feel about the services that they receive. In the past, the Tennessee Department of Intellectual and Developmental Disabilities (DIDD) used its own survey tool and could only compare Tennessee results in a given year with results in previous years. NCI helps individuals with disabilities, family members, and service providers by creating a single “yardstick” for states to measure and to compare their service performance across time and across states. NCI assesses life in several areas, including employment, community inclusion, choice, rights, and health and safety.

In 2013-14, DIDD began using the NCI. Since The Arc Tennessee’s People Talking to People (PTP) program had been conducting face-to-face, independent, quality assurance interviews across Tennessee for 12 years, DIDD enlisted PTP to conduct NCI interviews and enlisted the research expertise of the VKC UCEDD to analyze responses to the NCI interviews.

Adults with intellectual disabilities being served by DIDD were randomly selected to take part. DIDD asked Independent Support Coordinators to complete a short Pre-Survey and a longer Background Information Survey for persons selected. PTP representatives then did face-to-face interviews to complete the NCI Adult Consumer Survey. For some NCI questions, a family member, friend, or staff person who knows the person well responded, if the individual directly served could not respond.

For the VKC UCEDD, I led the Tennessee NCI data analysis, with the assistance of Jessie Baird, a VKC UCEDD trainee and Vanderbilt University graduate student. We analyzed Tennessee data for Tennessee-specific concerns and produced Tennessee-specific reports and presentations. Some findings are reported below.

Employment is an important part of adult life. When adults with intellectual disabilities were asked if they had a paid job in the community, 90% said no and 10% said yes, although 100% of those who had paid jobs in the community liked their work.

Many questions were directed at whether the adults with intellectual disabilities had opportunities, within the last month, to be in their communities to do a variety of things.

Shopping No 10% Yes 90%
Errands No 10% Yes 90%
Entertainment No 20% Yes 80%
Eating Out No 10% Yes 90%
Religious/spiritual service No 40% Yes 60%
Exercise No 40% Yes 60%
Vacation (in past year) No 60% Yes 40%

Other questions concerned choices about where to live and who to live with, and friendship:

Did you choose where you live? No 50% Yes 50%
Did you choose who you live with? No 50% Yes 50%
Do you have a best friend No 20% Yes 80%
Can you see friends when you want? No 10% Yes 90%
Do you ever feel lonely? No 70% Yes 30%
Do you feel safe in your home? No 20% Yes 80%
Do you feel safe in your neighborhood? No 20% Yes 80%
Do you feel safe at work and day activity? No 20% Yes 80%

We learned that there were regional differences within East, Middle, and West Tennessee. For example, individuals with intellectual disabilities were slightly more likely to have a job if they lived in Middle Tennessee. They reported relationships slightly more like their peers if they lived in West Tennessee.

We learned that whether an individual had a conservator was unrelated to that individual’s level of disability or communication ability, but that it did have a statistical impact on many of the other outcomes in their life, e.g., Choice and Decision Making, Relationships, Employment, Respect/Rights /Safety, and Service Coordination.

When compared to other states, we learned that Tennesseans had the highest rates of any state in having an eye exam (76% in the last year) or a hearing exam within 5 years (93%), important wellness measures.

People surveyed in Tennessee also reported the highest percentage of any state (97%) in always having a way to get places they want to go somewhere (over 50% of the time this is in a provider’s van) and that their support workers come when they are supposed to (98%). Tennessee was average in all other areas.

Compared with other states, Tennessee was below average in only two areas: the percentage who receive paid vacation and/or sick time at their jobs (10%) and those who have friends who are not staff or family members (67%).

NCI began in 1997 and is a collaborative effort between the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI). To learn more about NCI, see www.nationalcoreindicators.org. Tennessee reports can be found at http://vkc.mc.vanderbilt.edu/vkc/nci/

Lynnette Henderson, Ph.D., is associate director of Adult Community Services, Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.

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