Disability Program Gives Power to the People

An innovative consumer-directed model of providing home and community-based services to people with disabilities appears to improve satisfaction without adversely affecting participants’ health or safety.

The model could conceivably be extended to patients with severe and persistent mental illness, according to some experts.

The National Cash and Counseling demonstration program, funded by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services, gives disabled Medicaid beneficiaries a flexible monthly allowance to purchase disability-related goods and services (including hiring relatives as workers), provides counseling and financial assistance to help recipients plan and manage their responsibilities, and allows them to designate representatives (such as family members) to make decisions on their behalf.

Evaluation of the first demonstration program to be implemented—Independent Choices, in Arkansas—indicates that Cash and Counseling is a success. A report on the evaluation appeared in the March 26 Health Affairs.

“People love the program,” co-author Randall Brown, Ph.D., told Psychiatric News. “They are much more satisfied with the care they get, have better relations with the caregiver, are less likely to be neglected, and experience much greater satisfaction with overall care.”

Big Impacts

He added that among younger disabled consumers, the percentage that reports being dissatisfied with service is cut in half. “These are big impacts,” Brown said. “I’ve been doing evaluations for 25 years, and you don’t generally see impacts this large.”

Brown is a senior fellow at Mathematica Policy Research in Princeton, N.J., which evaluates demonstration projects and existing projects in health, education, and welfare.

In the evaluation study, Brown and colleagues compared satisfaction and quality of life among disability recipients receiving Cash and Counseling with those receiving traditional agency-directed care.

A baseline survey of 2,008 Medicaid beneficiaries was completed in April 2001. Then beneficiaries were randomly assigned to the treatment group (Cash and Counseling) or a control group (traditional agency-directed services).

Average allowance for people in the Independent Choices program was $320 a month. Treatment-group members were contacted by an Independent Choices counselor to assist in developing a written plan for spending their allowance. The allowance could be used to hire workers and purchase other services or goods related to their needs—including supplies, assistive devices, and home modifications. They were required to keep receipts for all but incidental expenditures, which could not exceed 10 percent of the allowance. With few exceptions, consumers chose to have the program’s fiscal agents maintain their accounts, write checks, withhold taxes, and file their tax returns.

Control-group members continued to rely on traditional agency-directed services. A follow-up survey of both groups was completed in February 2002.

Across almost every domain surveyed, recipients of Cash and Counseling reported greater satisfaction and higher quality of life. These included satisfaction with paid caregivers’ reliability, schedule, and performance; satisfaction with paid caregivers’ relationships and attitudes; unmet needs and satisfaction with care arrangements; satisfaction with life; and adverse events, health problems, and general health status.

A persistent concern about consumer-directed treatment, Brown said, has been the potential for adverse safety and health events due to untrained workers or inadequately supervised care.

Yet the evaluation found no greater likelihood of such events with Cash and Counseling. “We found no evidence of that at all,” he said. “People in Cash and Counseling were no more likely to have adverse events than the control group.”

Brown said that Cash and Counseling is one version of what is more generically known as “consumer direction” of entitlements for people with disabilities in the public sector. In many consumer-directed programs, beneficiaries typically identify a caregiver who is then hired and trained by a service agency.

Cash and Counseling is a more flexible version. “With Cash and Counseling, the consumer is the employer of record, not the agency,” he said. “Consumers have the ability to use their allowance to purchase anything that enables them to live more independently. The emphasis is on choice and control over how the services are provided.”

Brown said consumer direction of services has grown out of the movement for independent living. “Consumers have been telling professionals, ‘Quit dictating to us how we are going to have our needs met. We are the ones who know best what we need and how it needs to be done,’ ” Brown told Psychiatric News. “That’s hard to refute. These are people who are entirely dependent on others. That feeling of dependency alone and the lack of control is a cause for depression.”

He added that an especially significant finding was the satisfaction consumers report from being able to get care outside normal business hours. “If you are receiving services from an agency, you will get care during its business hours,” he said. “But maybe this is a consumer who likes to be up at 6 in the morning.”

Adaptable to Mentally Ill People

Brown said it was not known how many, if any, of the recipients were disabled by severe mental illness. But he said he believes the basic components of Cash and Counseling could be adapted to a population of people with mental illness.

He noted, for instance, that recipients could choose a representative to make decisions on their behalf—something that has worked well with elderly people who are cognitively impaired.

“That’s why this program could work for people with mental illness,” Brown said. “A lot of consumers select a representative and can give the representative as much or as little authority as he or she wants.”

Hunter McQuistion, M.D., an associate clinical professor of psychiatry at the Mount Sinai School of Medicine in New York City, agreed that the program could be modified to serve a population with severe mental illness.

“It’s an intriguing idea,” he said. “Some people may have the kind of personal administrative faculties to be able to make all the decisions that need to be made, and some may not. But the program does make use of proxies, which would be good for people who have severe psychiatric disorders and may not be able to make the decisions themselves.

“Whether it’s through the patient or the designated proxy, this could be interesting to replicate in some way for people with mental illness to give them much more control over their own destiny.”

He said the “clubhouse model” of care for people with severe and persistent mental illness comes closest to a “consumer-directed” model. Such clubhouses—which offer vocational training and nonvocational social support—might be venues for a pilot project of cash and counseling (Psychiatric News, December 17, 1999).

“The more control patients have over their own care, the more they can self-rehabilitate,” McQuistion said. ▪