MEANS AND ENDS
Getting to Consumer Centered and Provider Sustaining
Services
Ultimate Origins vs…..
Proximate
FALSE POSITIVES
MEDICATION
SIDE EFFECTS
TIME LIMITED TX
BENEFIT
LABELING AND
STIGMATIIZING
INADEQUATE TREATMENT
RESOURCES
Developing a Research Framework for
Evaluating Comparative
Effectiveness of Health Care Delivery
Interventions to Improve Patient
Outcomes in Serious Mental Illness
Directions for Future Patient-Centered &
Comparative Effectiveness Research for
People with Serious Mental Illness: A
Definition of Care, a Care System Model,
an Analytic Framework to Guide Future
Research, and Key Questions
Carla A. Green, PhD, MPH
Sue E. Estroff, PhD
BobbiJo H. Yarborough, PsyD
Mark Spofford, PhD
Michele R. Solloway, PhD
Rachel Kitson, BS
Nancy A. Perrin, PhD
Care and Service Delivery Intervention Definition
A patient-centered intervention for people with serious mental illnesses is
defined as an organized process of care or service delivery that is directed by
the person receiving services. Care and/or services are delivered
collaboratively, attentively, and compassionately, with providers as partners
who understand and respond to the person’s perspective and concerns. The
delivery process is structured to educate, inform, guide, and assist the person
to be a knowledgeable consumer of the services relevant to attaining the
person’s self-defined needs, goals, circumstances, and outcomes.
All individuals, including those who have been diagnosed with a serious mental
illness, have the right to direct their own care. People who are limited in their
ability to direct their care as a result of acute symptoms or legal constraints
should be provided with the support necessary to make as many care-direction
decisions as possible. If a person is unable to make informed choices about their
care, providers will rely on historically expressed preferences and values and,
when available, psychiatric advance directives and designated surrogates to
maximize the person’s participation in decision-making about services and
treatment. Care decisions made for persons when they are unable to direct
their own care should be based on the premise that such decisions will enable
those persons to make future choices about their care. Care and services
provided should take into account available scientific knowledge and the
resources of the service system.
“The involvement of mental health service users in service
delivery is a new and growing phenomenon. Such involvement
is complex, given the history of paternalism in the mental
health system, the power differential between service
providers and service users, and the very differing views each
group holds on multiple issues. Unless such differences are
addressed, there can be no meaningful involvement. Service
user involvement needs to apply to all aspects of the service
delivery system, including professional training, service
design, delivery, evaluation, and research. User/survivors,
and their organizations, have developed a body of experience
and knowledge that needs to be recognized and respected.
Unless there are multiple opportunities for ongoing and open
dialogue on these many difficult issues, real user involvement
will not occur (p. 20).”37 --Judi Chamberlin, author and
activist
3. The needs of stakeholders that are most commonly agreed upon concern qualities of person,
place, and relationships. Choice, respect for persons, attending to basic needs for safety and
material living needs, and competence of care are shared aspirations and expectations for mental
health services. Therapeutic relationships and working alliances are the fulcrum of mental
health services, yet the facets, requirements for, and barriers to this central ingredient have not
received adequate attention in research and service design and provision.
4. Processes of collaboration in patient-provider relationships are complicated and easier to
imagine than achieve. The widespread deployment of peer providers within, and as adjunct to,
mental health services has moved relatively swiftly, as has the number of consumer operated
services. It is important to assess these moves with the understanding that their goals and
mechanisms differ from those of more traditional providers.
5. The unintended consequences of treatment receive scant attention in outcomes research, and
as a result, services and systems lose the opportunity to be self-correcting, learning systems. The
use of coerced and involuntary treatment in hospitals and community settings, as well as the
more subtle and pervasive manipulation of choice, represent possible sources of
injury or harm for consumers, families, and even providers.
1. Consumers, families/carers, and providers predictably diverge in their assessments of
consumer needs for services, and in their assessments of consumers’ status and outcomes. They
differ in language, conceptual frameworks, in the bases for their assessments, and in how
needs are prioritized. These differences are most apparent in definitions, and thus assessment,
of recovery processes. Recovery is increasingly being translated into an outcome by research
and policy. The condensation, standardization, and interpretation involved in mainstream
outcomes research and evidence-based policy may fundamentally alter and obscure the
nuance, complexity, and power of the recovery process. Consumer-directed and informed
research is of particular importance and salience here. It is important to distinguish between
value-based and evidence-based outcomes practices when assessing the effectiveness of
services. Some treatments and services, and the qualities of their provision, are endorsed
because they enact deeply held values, not necessarily because there is evidence that
substantiates their effectiveness.
2. Demonstrable progress has been made in engaging stakeholders in evaluating treatment and
services and in formulating federal, state, and local policy. Organization and financing models,
however, are often taken as inevitable, and trump many of the expressed opinions and
evidence from these groups and individuals. Providers in particular are awash in reimbursement
criteria and documentation, ever-changing requirements for accountability, and inadequate
resources. These strictures have a direct impact on their ability to promote the kinds of
healthy working alliances with consumers and families/carers that produce continuous healing
relationships.
Summary. The quality of relationships between patients
and providers is perhaps one of the best- documented
influences on assessments of care and outcomes and the
least attended to in implementation, intervention
development and testing, and reform of system level
factors that impede patient-provider relationships.
Quality and experiences of treatment are clearly seen
as patient-centered outcomes among consumers.
THERAPEUTIC
IMPERATIVE
STATUTES, RULES,
RESOURCES, RISKS
THIS IS YOU
I WISH I COULD HELP YOU. THE PROBLEM IS THAT YOU’RE TOO SICK
FOR MANAGED CARE
Almost all U.S. adults with schizophrenia were
found to receive government health insurance,
yet a measurable minority remained uninsured.
Eighty-seven percent had Medicaid or Medicare,
8% received care through the Veterans Health
Administration, and 15% had private insurance
for at least one day during the year. About 7%
were uninsured all of the year. (Khaykin et al 2010)
The vocabulary and practices of current mental health
case management are infused with collaboration,
consumer choice, shared decision-making, empowerment,
recovery and individualized services. The terminology
and requirements of the workplace, in stark contrast, are
dominated by accountability, making budget, billable
units, meeting productivity expectations, deadlines for
paperwork, and auditor’s checklists. The juxtaposition of
recovery promoting concepts and practices with those of
the reporting, auditing, and performance requirements of
public (and to some extent private) funding raises
questions of whether or how these two are compatible,
and together contribute to or interfere with improved
consumer outcomes.
One staff member remarked, “no one knows what a
service coordinator is…we are known as case managers all
over the country.” In this context, the reforms were seen
as a change in vocabulary that was unlikely to affect
practice in a meaningful way, and by some supervisors and
service coordinators as additional demands made without
the commitment of additional resources. It was common
to hear from the informants that “they [administrators and
policy designers] have no idea what we actually do,” and
that “It [paperwork] has always been tough, but now it is
not bearable.”
During the course of the study, we interviewed all of
the SC supervisors in the sites and asked them to
identify the qualities they looked for and valued when
hiring and assessing active service coordinators. These
attributes can be summarized as:
Passion and Heart
Problem Solving Ability
Experience
Relationship Skills
Self-Reliant
Specific qualities included:
Dedication, flexible, won’t settle, creative, trust with
others, sense of humor, able to handle frustration and
anger, high expectations of self, and ‘no time is ever
wasted.’
Case Management Transformation:
Single Point of Accountability
• Recovery orientation
• Become central service coordinators across
system
• Develop high level Recovery Plan from all supports
• System engages differently with case managers
• Comprehensive training
• Revamped and extended basic training provided by
SSW
• Addition of mentors
• Enhance career ladder
SPA Affirmative Responsibilities
 Go-to person for the consumer/family/system
 Clearly communicate what can be expected
 Planning with consumer for development of natural supports, link
consumer with resources
 Assure cross-systems assessment and planning
 Assure cross-systems coordination
 Develop relationships that endure
 Give feedback on systems barriers and problems
 Provide primary safety net function
 Help sustain positive outlook for the future
Overview of implementation plan
• Phase in all system changes over five years
• Increase rates and salaries over five years
• County contracts re-written to enhance accountability of
agencies to implement
• Case Mgt competencies & responsibilities tied to common job
description and to job evaluations
Finance
• Agencies collaborated with county to achieve more
comparable salaries
• 10% rate increase approved to fund salary increases
• $8,000 increase in minimum starting salary
Workforce
 Job descriptions re-written
 Name changed to “Service Coordination”
 Comprehensive training developed
 Mentors instituted in all SC agencies
 Three local Schools of Social Work worked to develop
 BASW Service Coordination certificate
 Plan to expand to Psychology
 100-hour certificate through CE for other majors & current staff
 100-hour certificate through CE for mentors
 County
 Standardize and centralize new hire trainings on
policies/procedures
 Workforce recruitment plan developed
What we learned
• Many opportunities to observe the different cultures and practices of
community practice and academia
• Opportunity to define the “jagged edge”
• Demanding, but different incentive structures
• Medicaid and Service Definitions
• Program announcements and cutoff scores
• Different timeframes
• Providers are ready to implement immediately
• “Chasing baselines”
• Different regulators
• CMS vs. IRB
Case Management Research
• Consumer Base Line Study
• Interviews with Mentors
• Participant observation study of
implementation
• Follow-up Mixed Methods study (Summer
2010)
• Staff retention (pre and post)
• Salary surveys (pre and post)
• Training survey (pre and post)
BILLABLE
UNIT REQUIREMENTS
↔↔↔↔↔
1
“MAKING BUDGET”
AGENCY SURVIVAL=MY JOB
MORALE, PERFORMANCE,
AND TURNOVER/RETENTION
CASELOAD SIZE AND TYPE
AUDITING: INTERNAL AND
EXTERNAL
ADMINISTRATIVE REQUIREMENTS
CHANGES IN REPORTING FORMAT
AMOUNT AND TIME TO COMPLETE
TRAINING TIME
MENTORS
The service coordinators and supervisors were ever mindful of the
precarious fiscal condition of their agency, and understood that their
work was in part responsible for the financial health of the agency, and
ultimately their jobs. Nearly all service coordinators keep a running
account of billable units per day, and many have developed an internal
gauge that they update as their interaction with consumers unfolds.
As one explained, “I can see one encounter leading to a whole bunch of
[additional] billable units with the labs and appointments.” Most SCs
are also conscious of the necessity of justifying their time. “I have to
show that I’m not just giving rides,” one SC stated, noting that if a visit
with a client lasted for 30 minutes, he needed to show “30 minutes of
activity.”
2
COORDINATION AND COMMUNICATION
+
CHALLENGES
“BEING THE HUB IS DIFFERENT THAN
‘WHATEVER IT TAKES”
“SPA MEETINGS”
“FROM TAXI TO TRAVEL GUIDE”
DOCS AND THERAPISTS
CONSUMER OUTCOMES
3
Q46 (k) Overall, are you satisfied with the respect shown to you by the service coordinator
who works with you?
Dissatisfied ............. 10
Satisfied ................... 381
(2%)
Q49
Neutral .................... 12
(95%)
(3%)
Overall, how satisfied are you with the service coordination services you received?
Dissatisfied
12
(3%)

Satisfied...... 349
(87%)
Neutral........ 35
(9%)
Unsure ....... 4
(1%)
I need to see him more often. He knows I need to, but he has problems of his
own.
 At least weekly visits.
 I had a visit every two weeks and I would have liked to have them every week.
 Visits have been decreased to once a month. They told me that the visit will be
decreased.
 I'm going through something right now, therefore I'd like to see her more, so she
can help me with it all.
 I rarely see her; I get no visits.
 I would like to see my service coordinator more often than once a month.
 I would like more visits, more than one or two times per month.
 I want more.
 Weekly.
 My service coordinator is too busy to see me as much as I would like.
 Would like service coordinator to come several times a week.
 I could use one or two visits a week. She comes about two or three times a
month.
 Would like visits every two weeks.
 I'd like to see her once every two weeks, instead of every three weeks.
Mayview Overview
Trajectory Types/Outcomes
Stable (at limit, satisfied, QOL)
Stuck (could but can’t due to lack of
resources/services)
Stuck (won’t engage with services that would
promote recovery that are available)
Decline (steady, gradual, episodic) quietly,
intensive services
Improve (steady, gradual, episodic) intensive
services, self-directed
• “The best experience has been knowing that I can make it
in the real world. Not as hard as I projected it to be.”
Leaving Mayview: The Sanity of Place
Percent with at least moderate illness
(BPRS >41)
45
40
35
30
Hosp
25
6 mo
20
12 mo
15
18 mo
10
24 mo
5
0
F (4, 196) = 2.44, p < .05
Progress needed on
community integration
• Many participants would welcome more varied activities
• Q: What do you do? A: Sleep. Get up and watch TV. Come out here and
smoke.
• Q: What is there to do? A: Sleeping. Groups. That’s about all.
• I don’t go anywhere. I don’t have any money.
• Some participants are very active
• I am in the process of getting prepared to get a job. I’ll see what kinds of
things I want to do.
Some do not get the chance to rise like golden loaves of hallah, filled with
sweet raisins and crowned with shiny braids.
Rushed, neglected, not kneaded by caring hands, we grow up afraid that
any touch might cause a break. There are some ingredients we never
receive.
Tonight, let us bless our cracked surfaces and sharp edges, unafraid to see
our brittleness and brave enough to see our beauty.
Reaching for wholeness, let us piece together the parts of ourselves we
have found, and honor all that is still hidden.
Tamara Cohen
Gould Farm Wordpress