[NYAPRS Enews] PS: Barrier to Progress for Self Directed Care for Adults w Psych Disabilities

[Matt Canuteson]

NYAPRS Note: Self-direction, which gives control to recovering people
over how public funds are spent and which services and staff they
prefer, is perhaps the most transformative single measure we know...and
one that's getting increasing attention nationwide, now that federal
Medicaid rule changes can support individualized budgets. The following
piece details efforts states are making in this area...and the obstacles
they currently face.

 

Self-Directed Care for Adults With Serious Mental Illness: The Barriers
to Progress 

By Vidhya Alakeson, M.Sc.  Psychiatric Services 59:792-794, 2008

 

Ms. Alakeson is affiliated with the Office of the Assistant Secretary,
Department of Health and Human Services (vidhya.alakeson at hhs.gov). 

 

The President's New Freedom Commission on Mental Health identified
self-directed care as one service innovation that could create a more
consumer- and family oriented mental health system.

 

Four years later, there are still fewer than 400 consumers in five
states accessing self-directed care in the public mental health system.
This Open Forum identifies three main barriers to explain this lack of
progress: the absence of a strong evidence base to support the
effectiveness of self-directed care for serious mental illness,
uncertainty over the appropriate scope of self-directed care, and the
absence of a sustainable source of funding. The introduction of the
1915(i) provision of the Social Security Act in 2007 appears to partly
address the funding barrier to self-directed care.

 

There is also a strong case for a large-scale evaluation of
self-directed care for persons with serious mental illness to address
the two remaining barriers to progress. 

 

It has been over four years since the final report of the President's
New Freedom Commission on Mental Health called for the creation of a
more consumer- and family oriented mental health system that would give
a greater number of individuals with serious mental illness the chance
of regaining a meaningful life in the community (1). The report
identified self-directed care as one service innovation that could
create this kind of transformation. After the Commission dispersed when
the report was completed, the Substance Abuse and Mental Health Services
Agency picked up the baton and has held several meetings and produced
publications promoting the approach (2). But there are currently fewer
than 400 consumers in the public mental health system across the country
accessing self-directed care.

 

This Open Forum identifies three barriers to explain the lack of
progress: the absence of a strong evidence base, uncertainty over the
appropriate scope of self-directed care, and the absence of a
sustainable source of funding.

 

Self-directed care: the evidence Self-direction is a broad term that is
used to describe a range of service delivery models that place greater
emphasis on consumer involvement, including peer support services and
consumer-run services. This Open Forum does not deal with all aspects of
self-direction but focuses on one particular service model:
self-directed care. Self-directed care is based on giving each consumer
control of an individual budget with which to purchase goods and
services to meet his or her needs in place of or in addition to
receiving directly provided

services. The rationale is that greater consumer choice over treatment
and services can allow care to be better tailored to individual
recovery.

 

An individual budget differs from Social Security cash benefits because
the money in an individual budget can be spent only on goods and
services that meet needs defined in a person-centered plan, and certain
items, including alcohol, cigarettes, and illegal substances, are
entirely prohibited. Individuals who choose to direct their own care
have access to support services that provide information and advice on
available choices and that help manage the associated financial
transactions (3).

 

There are currently five states with programs and pilot programs in self
directed care for adults with serious mental illness: Florida, Maryland,
Michigan, Oregon, and Tennessee. Iowa recently completed a pilot program
with 25 adults, and Texas and Pennsylvania are in the process of
developing a pilot program. The oldest and largest program is in Florida
and serves approximately 200 consumers across two districts. Programs in
other states serve 50 or fewer

consumers each.

 

The programs differ in the degree of control that they provide
consumers. In Oregon and Iowa, consumers receive a budget in addition to
the services provided by the traditional mental health system. This
budget can be used to purchase recovery supports that are not provided
by the traditional system, but participating in self-directed care does
not give consumers additional opportunities to change the traditional
services they receive. 

 

However, in Florida, Maryland, and Michigan, consumers do have the
option to use money from their budgets to visit alternative providers of
traditional services and, in some cases, to substitute services provided
by the traditional mental health system for nontraditional alternatives.

 

Initial findings from self-directed care for adults with serious mental
illness are promising. Surveys of consumers in Florida and Oregon who
use self-directed care have shown significant increases in satisfaction,
compared with users of traditional services (4,5). These findings are
supported by analysis comparing the experiences of older adults with and
those without a mental health condition in the experimental Cash and
Counseling demonstration in Arkansas (6). 

 

The authors conclude emphatically that "if a client is mentally ill, it
is better for him or her to be in Cash and  Counseling than in
traditional treatment" (6). There is little evidence about longer-term
impacts, but recent analysis of the program in Florida highlights a
promising development: consumers who use self-directed care are more
likely to make use of routine and early intervention services and to
have less use of crisis units, compared with a matched sample of
consumers who do not use self-directed care (7).

 

The Barriers To Progress

Self-directed care extends consumer involvement beyond the
well-established principle of choice of provider to give consumers
control over what treatments and services are provided. Although
self-directed care is becoming well-established in home and
community-based long-term care services for older adults and persons
with disabilities, it is not well established in health care.
Self-directed care is often associated with health savings accounts
(HSAs), but although both approaches are intended to extend consumer
control, self-directed care provides consumers with greater control over
the use of public resources, while HSAs rely heavily on private savings.
The introduction of self-directed care for the management of chronic
diseases such as diabetes is currently under serious discussion in the
National Health Service in the United Kingdom, but the approach is in
its infancy in the health care arena internationally.

 

As a result, existing evidence, although promising, remains inadequate
to convince more states and third-party payers to pilot the approach for
adults with serious mental illness.

 

In developing a stronger evidence base for self-directed care as an
effective approach, an important dimension to clarify would be the
appropriate scope for consumer control. Existing programs differ
significantly in the extent to which they do or do not give consumers
control over traditional mental health services.

 

Proponents of self-directed care argue that the current system is overly
reliant on clinical treatment and that consumers should be given greater
control to rebalance the system in favor of services that better address
individual recovery. At the same time, there are understandably concerns
about consumers' capacity to make effective decisions beyond the realm
of personal care and other supportive services. More evidence of the
impact on service utilization and health outcomes of giving consumers
control over different types of services would help clarify the
appropriate scope for self-directed care.

 

The appropriate scope for self-directed care is closely linked to the
third, and perhaps most significant, barrier to progress: the absence of
a sustainable funding source. The Medicaid program is the single largest
source of funding for public mental health services and is expected to
account for an increasing share of the resources that underwrite
state-administered mental health services over time (8). But
self-directed care pushes at the limits of what Medicaid will support.

 

Medicaid was designed to pay for health care services based on medical
necessity criteria. Several of the items that consumers choose to
purchase in programs that are not reliant on Medicaid dollars, such as
the program in Oregon, would not be permissible under Medicaid
regulations- for example, room and board, as well as education and
job-related services. Neither does Medicaid pay for goods. It funds
services. But many consumers want and need goods to help them rebuild a
life in the community-for example, a computer to support education, an
exercise bike to improve physical health, or a new set of pots and pans
to support independent living.

 

The consequence of the existing Medicaid rules is that states that are
experimenting with self-directed care are doing so by using state
general revenue funds or grant funds that impose fewer restrictions and
can support far greater flexibility than Medicaid.

 

The current exception to this pattern is Michigan, which supports self
directed care under a concurrent section 1915(b)/(c) waiver. But
flexibility in this context comes at the expense of sustainability.
There are many competing claims on general revenue funding, not least of
which is the need to match increasing federal expenditures under
Medicaid, and grant funding is by its very nature time limited.
Self-directed care cannot flourish if it cannot be  supported by
Medicaid dollars.

 

Future Prospects

The introduction of new waiver provisions under the Deficit Reduction
Act of 2005 created new options for states interested in pursuing
self-directed care for adults with a primary diagnosis of serious mental
illness.

 

Although the provision codified as section 1915(i) of the Social
Security Act restricts self-directed care to defined categories, such as
day treatment and psychosocial rehabilitation, rather than providing a
broad scope, within these categories states should be able to apply
significant flexibility. It remains to be seen how many states take up
the option, but it appears to partly address the funding barrier to
self-directed care posed by existing Medicaid regulations.

 

Going beyond the new possibilities created by the Deficit Reduction Act
will require a more robust evidence base. There is a strong case for a
large-scale evaluation of self-directed care for adults with serious
mental illness similar to the Cash and Counseling demonstration. In 1998
Medicaid approved three Cash and Counseling programs in Arkansas,
Florida, and New Jersey under the section 1115 Medicaid authority.

 

These programs conducted an experimental trial of self-directed services
for adults with disabilities, for elderly persons, and for children with
developmental disabilities. The scale and rigor of this evaluation have
been instrumental in making the case for self-directed care in home- and
community-based services. Positive findings from a large scale
evaluation of self-directed care for adults with a primary diagnosis of
mental illness could provide a strong platform to begin discussions
about further reforming the Medicaid system to better support
self-directed care and could convince other third party payers to
experiment

 

 

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