Published in Pawtucket Times on March 17, 2003

Eighty-nine-year-old Lillian Brannon raves about the Arkansas-based “Independent Choices (A Cash and Counseling Demonstration Program) that allowed her to stay independent and at home with the assistance of four aides.

The program “has really changed my life so much,” she says. “It has really helped me to live more independently than I have ever have …I would not trade it for anything.”

Tammy Svihla, who suffers from MS gives a thumbs-up to the New Jersey-based “Personal Preferences” programs that has allowed her to more creatively used Medicaid funds. Svihla notes she was able to purchase a “Lazy-boy” lift chair, usually not covered by Medicaid. It was logical for Svihla to purchase the lift chair because it was difficult for her to get up from her couch because of soft cushions.

These two  testimonials, among three others, set the tone for a newly released report that examines the myths and realities that now surrounds the philosophy of consumer-directed services.

The orientation allows consumers to make choices about the services they receive, assess their own needs, and determine how ad by whom these needs should be met, and then  monitor the quality of services they have received.

“The Myths and Realities of Consumer-Directed Services for Older Persons,” authored by Marie R. Squillace, PhD., federal project officer, National Family Caregiver Support Program with the U.S. Department of Health and Human Services, and President and CEO James Firman, Ed.D., of the National Council on Aging, attempts to build upon current knowledge obtained from research and demonstration projects to make   consumer direction “an integral part of the options available for all older persons who may need long-term care.”

Throughout the 24-page report the authors use personal experiences, case studies, and research to dispel 12 myths about the philosophy of consumer-directed services.

Let’s take a look at three of the myths.:

Squillace and Firman urge the reader to not believe the myth that consumer-directed services are not appropriate for seniors with disabilities or for those with cognitive impairments.

Here’s the reality: studies of programs like California’s In-Home Supportive Services (IHSS), show that many elderly can express daily preferences for care and can benefit from that control. For more than 30 years, low-income persons over age 65 who are enrolled in the IHSS program have  hired, fired, trained, scheduled and supervised individual providers.

Moreover, the Family Caregiver Alliance in San Francisco adds research indicates that persons with early to moderate cognitive impairment still can express daily preferences for their care, sharing their values and preferences.  For those with significant cognitive disabilities, a University of Maryland Center on Aging report suggests family caregivers, a circle of friends, or close associates who know the consumer well can interpret the person’s non-verbal expressions.

Another myth of the Squillace and Firman report is that “self-directing consumers will “misuse funds” or “be exploited.”

Not true, say the authors, citing “Cash and Counseling Programs” that will allow consumers to use their alliances to purchase needed services so they can stay in their own homes with the assistance of a fiscal intermediary organization (FIO).

In reality, the authors note most prefer to have their funds held by the FIO, which conducts bookkeeping and accounting services to help them manage their individual helpers and pay taxes for their workers. The management can minimize concerns about misuse of funds and financial exploitation of vulnerable individuals while diminishing the administrative responsibilities placed on self-directed consumers, the report says.

Finally, some spread the myth that consumer direction is just an experiment, noting more, nothing less. But Squillace and Firman say this philosophy has progress “far beyond the experimental phase.

A growing number of consumer advocates, program administrators and policy makers are now embracing this philosophy.”

The authors recite a 2001 survey that identified 139 consumer-directed service programs that were operating across most of the nation, except Tennessee and the District of Columbia. “The estimated total number of people being served by these programs reached about half a million.

Squillace and Firman state: “Consumer direction is not a sliver bullet or a panacea for the nation’s long-term care challenge, but it is an important part of the solution.”

I believe that.

If they haven’t, hopefully the directors of the Department of Elderly Affairs and Human Services will develop programs that encompass the philosophy consumer directed services.  Enhanced quality of life can be a result of aging baby boomers and seniors controlling the choice over the purchase of their long-term care services. Ultimately, it is all about empowerment.

For more information about consumer-directed care, visit www.consumerdirection.org.

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