Case Studies

Giving Choice Back to People with Disabilities

Giving Choice Back to People with Disabilities

Many of us take for granted the basic human right to direct our own daily lives: deciding for ourselves when to get up in the morning or go to bed at night, when to take a shower, and when and what to eat. But until recently, people with disabilities who receive Medicaid-funded personal assistance with these types of daily activities have not had much say in how or when those services are provided, or even who provides them.

In the past, state Medicaid programs contracted with home care agencies to provide these personal assistance services to elderly and disabled residents at home. But that assistance was provided on the agency’s terms—not the consumer’s. For people who need help at home, this often meant getting up late in the day, having meals at odd times, going to bed before the sun goes down, and doing without help on weekends. At its heart, the Cash & Counseling program was the policy answer to the belief that people who had more control over their care services would have better lives.

What began in 1998 as a small demonstration program in three states has changed the way policymakers view long-term care. By redirecting personal assistance funds from Medicaid to consumers, Cash & Counseling allowed people to hire whomever they want to provide their care when they need it.

Burness worked with Cash & Counseling from the very beginning, with both the national program and individual state initiatives. We devised a communications campaign, and then went to work: producing a variety of written materials, publicizing research findings about the program’s effectiveness, and helping program representatives reach out to primary stakeholders—all aimed at educating and informing policymakers at the federal and state levels about the potential for this new model of care. Over time, key policymakers embraced the idea, setting in motion changes that would improve the lives of thousands of Medicaid beneficiaries and their family caregivers.

In 2005, Congress paved the way for states to offer Cash & Counseling programs without obtaining a special Medicaid waiver. In 2008, the Centers for Medicare & Medicaid Services issued a proposed rule that allows more people nationwide to direct their care. Today, 15 states have adopted Cash & Counseling programs, and over half of the remaining states have adopted or are developing similar alternatives to traditional services. These changes have made it possible for such programs to reach every state and every major disability group.

“Our vision is that, one day, every state will offer more choice and independence to their residents who need help at home,” says Cash & Counseling Director Kevin J. Mahoney. Today, Mahoney directs the National Resource Center for Participant-Directed Services, which helps states and other entities make this vision a reality.