Self-direction

From: Mark_Johnson@shepherd.org (Mark Johnson)


FROM: TROY JUSTESEN, ASSOCIATE DIRECTOR FOR DOMESTIC POLICY
DATE: APRIL 15, 2003
RE: Evaluation of the HHS Medicaid Cash and Counseling Demonstration
Project

Today, the Department of Health and Human Services (HHS) announced the
initial findings of the Medicaid Cash and Counseling demonstration project
underway in Arkansas. Below and attached is a copy of the HHS press release detailing
the success of the program. The initial findings show what many of us already
know -- self-directed care succeeds at protecting recipients' health and safety
AND
enhances consumer satisfaction. Today's study, carried out by Mathematica
Policy Research, Princeton, N.J., is available at:

http://www.healthaffairs.org/WebExclusives/Foster_Web_Excl_032603.htm .

NEWS RELEASE

Robert Wood Johnson Foundation
U.S. Department of Health & Human Services

FOR IMMEDIATE RELEASE
Tuesday, April 15, 2003

Contact: HHS Press Office
(202) 690-6343

RWJ Public Affairs
(609) 627-5937

MEDICAID RECIPIENTS WITH DISABILITIES BENEFIT FROM DIRECTING THEIR OWN
PERSONAL
CARE SERVICES, STUDY FINDS

Medicaid recipients with disabilities who direct their own supportive
services were significantly more satisfied and appeared to get better care than
those receiving services through home care agencies, according to initial
findings of a demonstration project jointly supported by HHS and the Robert Wood
Johnson Foundation. With self-direction, the recipients' satisfaction and quality
of life were improved substantially and unmet needs for care were reduced,
without compromising health or safety, the study found.

The initial findings, from an ongoing evaluation of the Cash and
Counseling demonstration project, were released in a web exclusive edition of the
Journal of Health Affairs. In the project, participants are given an allowance and a
high degree of flexibility and freedom to choose personal care assistants. The
first phase of the evaluation examined whether this self-directed care succeeded
at protecting recipients' health and safety in addition to enhancing their
satisfaction. The study looked at both elderly and non-elderly adult
Medicaid recipients with disabilities who receive Medicaid-supported home services.

"This approach gives people with disabilities more freedom and
responsibility, in the same way that all of us want to be in charge of our lives and our
choices," said HHS Secretary Tommy G. Thompson. "It lets the individuals
themselves decide how best to use the Medicaid dollars they are already
entitled to. The study confirms that these Medicaid recipients make good choices
that maintain their health and safety, even as they improve their convenience,
satisfaction and quality of life."

"The Cash and Counseling program offers Medicaid consumers flexibility and
a sense of control over their care," said Risa Lavizzo-Mourey, M.D., M.B.A.,
president and CEO of the Robert Wood Johnson Foundation. "We're
encouraged that these initial findings indicate that giving patients this kind of greater
autonomy over their choices for care can enhance the quality of their
lives. This program is an important part of the Robert Wood Johnson Foundation's
longstanding mission to improve the quality of care for people with
chronic conditions."

The Cash and Counseling demonstration project is being tried in Arkansas,
New Jersey and Florida. The study announced today contains findings from the
Arkansas demonstration, which was the first to be implemented. The
demonstration examines delivery of personal care services like bathing,
grooming and meal preparation. Most states provide some coverage for such services
in their Medicaid programs, in part to help maintain individuals in their
homes rather than in nursing facilities or other institutional settings. In
most cases, these supportive services are provided by home care agencies.

The Cash and Counseling Demonstration was designed to compare outcomes of
traditional agency-directed care with care that is directed by the
recipient --especially to determine whether satisfaction increased and health and
safety were maintained. Under the Cash and Counseling approach, the recipient
(or designee) is provided with a monthly allowance, equivalent to what would
be spent under traditional Medicaid for the care authorized, and a high
degree of freedom in using the allowance. For example, recipients may use their
allowances to hire friends and family members (excluding spouses) as
caregivers. They may also use the monthly allowance to purchase assistive equipment or
home-modifications related to their personal care needs. Counseling is
provided to help recipients develop a spending plan for the allowance.

Medicaid beneficiaries who receive supportive services from agencies
"often have little control over who provides their care, when they receive it, or how
it is delivered. For some, this lack of control over basic, often intimate,
assistance leads to dissatisfaction, unmet needs and diminished quality of
life," says the report. At the same time, the report notes, "some
stakeholders fear that eliminating agency involvement jeopardizes consumer health and
safety."

The study announced today compared randomly selected, voluntary
participants using the Cash and Counseling approach with a control group of those who
had to rely on traditional agencies. Findings include:

- Satisfaction with caregivers was much higher for those in Cash and
Counseling. Reports of paid caregivers failing to complete tasks were about 60 percent
lower than the control group.

- The Cash and Counseling group was much less likely to report unmet needs
for assistance of several types. For example, the proportion of non-elderly
consumers not receiving desired help with transportation was about 40
percent lower than for the control group rate.

- Care for those in the Cash and Counseling approach was at least as safe
as agency-directed care, as reflected in reports of disability-related
adverse events, health problems and general health status.

- Program participants were nearly 20 percentage points more likely than
the control group to express satisfaction with their lives, among both elderly
and non-elderly consumers.

"States are increasingly interested in using consumer-directed approaches
for this kind of supportive care," said Kevin Mahoney, director of the
demonstration's national project office at the University of Maryland
Center on Aging, which oversees the project. "But before expanding these programs,
the states want to be sure this approach is safe as well as satisfying for
patients. The Cash and Counseling Demonstration is answering those questions."

Future reports will deal with other aspects of the Arkansas program, as
well as the demonstrations in New Jersey and Florida. Altogether, some 1.2 million
Medicaid recipients nationwide get supportive services.

"Approaches like this hold great promise for making Medicaid more
cost-effective and serving people with disabilities better," said Tom Scully,
administrator of HHS' Centers for Medicare and Medicaid Services (CMS). "These approaches
are especially important in light of the President's New Freedom Initiative,
in which he has directed government to do more to help people with
disabilities to live at home and avoid institutionalization."

Recent actions by HHS have made it easier for states to adopt
consumer-directed approaches for Medicaid recipients with disabilities. "Independence Plus"
waiver templates, introduced by HHS last year, enable states to obtain the
needed permission to operate such programs with a minimum of HHS review.
Funds provided under the Real Choice Systems grants also help support states in
planning such programs.

In addition, President Bush has proposed changes in the Medicaid program
that would give states much more flexibility. Under the proposal, states would
be able to implement programs of this kind without needing to obtain HHS
permission.

The Cash and Counseling programs in each of the three states are funded by
the Robert Wood Johnson Foundation. The evaluation is funded jointly by the
foundation and HHS Office of Planning and Evaluation.

Today's study, carried out by Mathematica Policy Research, Princeton,
N.J., is
available at:
http://www.healthaffairs.org/WebExclusives/Foster_Web_Excl_032603.htm .

More information on the Cash and Counseling demonstration program is
available
at www.umd.edu/aging

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