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Measuring Developmental Disabilities Services' Success

The National Core Indicators project helps states target human services spending to practices that work.

The importance of performance measurement in tough fiscal times can't be overstated, but I also don't think there's any more important policy area to which it applies than human services.

Recently, I spoke at a conference for the National Association of State Directors of Developmental Disabilities Services (NASDDDS) on the fiscal outlook for 2013. Joining me was Bill Pound, executive director of the National Conference of State Legislatures. Both of us predicted that Congress would ultimately cobble together some unsatisfying, short-term gimmick for avoiding the so-called "fiscal cliff," and we both suggested that whether we went off the cliff or not, folks in human services -- including those focused on developmental disabilities -- were going to continue experiencing the big fiscal squeeze. I went on to suggest that anyone not focusing more tightly on results-informed budgeting and policy would wind up in even worse shape.

That's where the National Core Indicators (NCI) project, which tracks outcomes for those with developmental disabilities, comes in. It's a joint venture between NASDDDS and the Human Services Research Institute, an analytics group based in Cambridge, Mass. It turns out that the NASDDDS has been beating the results-informed budeting drum since the late 1990s. "It started around the time states began flirting with managed care," says Charles Moseley, associate executive director of NASDDDS. "And we were also starting to hear from other directors that they were getting a different kind of question from legislators during budget hearings. They didn't want to hear about outputs -- how many clients we were serving -- they wanted to know what difference we were making in these folks' lives."

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The NCI effort grew slowly, partly due to cost (in particular, the NCI involves some pretty extensive interviewing of clients), and partly due to all the difficulties inherent in pushing results-informed government, from trying to convince public employees of the value of performance measurement to battling long-time outside constituencies invested in the status quo.

But the project gradually gained traction, and was recently given a nice boost by the U.S. Department of Health and Human Services' Administration on Intellectual and Developmental Disabilities, which has put up money to help states join the consortium, bringing the current total involved in the NCI project to 35. Today, the NCI covers everything from whether individuals with development disabilities have jobs to the extent to which clients feel services for them are accessible and well coordinated to life outcomes, such as regular exercise.

But as any veteran of public-sector performance measurement regimens knows, having measures and data is not the same as making spending and policy decisions based on those measures and data.

Stephen Hall, commissioner of Kentucky's Department for Behavioral Health, Developmental and Intellectual Disabilities, says that when he arrived on the job three years ago, the state was collecting data under the NCI project, but that's as far as it went. "And so we started benchmarking against other states who were performing better in key areas of NCI," says Hall.

Among the significant changes that the state has made based on that exercise: A 180-degree shift away from sheltered workshops to supported employment based on clear evidence that clients who have actual jobs report far better life outcomes than those who are simply being shuttled to and from workshops. Those with jobs reported key improvements in measures like healthier relationships, less loneliness and even less obesity, not to mention such other incidentals as higher incomes. "This used to be couched in terms of a philosophical difference," says Hall, "but it's not a philosophical difference; it's a real difference in outcomes."

Of course providers with a strong interest in maintaining the status quo weren't thrilled with the new evidence-based approach, says Hall. "The point is there are always people who benefit and gain if things stay the way they are, so you'd better have your act together if you want to make change."

Two very important constituencies proved to be valuable allies in making that change: lawmakers and clients' families. "Having real data was impressive to legislators," says Hall. But most critical was winning over families. "I said to them, 'Look, at the end of the day it's your choice. But I'll do whatever I can to talk you into better outcomes for your [family members].'"

Elizabeth Daigneau is GOVERNING's managing editor.
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