Transcript children's hospital of wisconsin special needs program

The Medical Home
in Practice
Rural Community-Based
And
Tertiary Care Center Models
CHILDREN’S HOSPITAL OF
WISCONSIN (CHW)
SPECIAL NEEDS PROGRAM
A PRIMARY CARE/
TERTIARY CARE
MEDICAL HOME
PARTNERSHIP
Holly Colby, RN, MS
EVOLUTION OF THE SPECIAL
NEEDS PROGRAM (SNP)
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In 1998 the SNP was developed from a
contract with WI Medicaid for case
management services.
Physician joined the program in January 2003
as Medical Director and Care Coordinator
Development of physician care coordination in
collaboration with nurse case manager (CM)
for high intensity/medically fragile children
Special Needs Program Goals



Provide exceptional care coordination services
Advocate for improved care coordination for all children
with special health care needs (CSHCN)
Educate and assist other providers and programs in
providing care coordination services for their patients
Medically Fragile children require a Medical Home to
promote safe, coordinated care to optimize clinical and
related outcomes and decrease parental stress
What do Families Say They Want

People (doctors,
nurses, therapist, et
al) who help them
negotiate the medical
and non-medical
maze of services
OUR VISION
Care coordination at Children’s
Hospital of Wisconsin will:

Facilitate high quality, comprehensive, cost
effective care
VISION
Promote optimal
quality of life for
children and families
 Meet and exceed the
expectations of all
customers

Children’s Hospital of Wisconsin
SNP Description
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In 2003-116 children in SNP with an average of 7
physicians and mean hospital charges of $157,576/yr
Target population:
– 974 patients had 3 major specialists and mean
charges of $27,860/yr.
– 193 patients had 5 or more specialists and mean
charges of $83,940/yr.
SNP staff: 3 Nurse Case Managers, 1 part-time Clinical
Nurse Specialist, 2 part-time physicians, program
manager and part-time administrative assistant
Criteria for SNP enrollment


Family desires to work with
Case Manager (CM).
Program is voluntary.
Highly complex medical
condition
–
–
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At least five sub-specialists
Multiple and/or uncertain
diagnoses
Patient is not already
followed by a CM
Criteria for SNP enrollment

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Medical condition
requires frequent care
and monitoring
Periods of medical
instability
Socially complex
situation
PCP requests care
coordination assistance
REFERRAL SOURCES 2003
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Specialty physicians at CHW-23%
Population-specific programs at CHW-17%
Inpatient Case Managers-12%
Parents/Guardians-7%
Primary Care Physicians-5%
Birth to Three Programs-5%
Others (Schools, Social Workers, Dieticians, Health
Departments, Family Centers)-26%
149 referrals in 2003 (66 enrolled)
INTAKE PROCESS
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Weekly intake rounds attended by SNP team, Social
Work, Rehab Physician, and a staff member of the
Special Needs Family Center
Referrals reviewed using established program criteria
Recommendations made re: who or what program can
best meet patient/family needs
Acuity determined using SNP Intensity Scoring tool to
predict CM effort/patient
Communication with PCP, family and referral source re:
team recommendation
THE SCOPE OF SNP CARE
COORDINATION SERVICES
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Case plans and clinical summaries
Communication link between families, PCP,
sub-specialists, and other providers
Facilitate and coordinate health care delivery,
appointments, care conferences, referrals
Attend IEPs, clinic appointments, home visits
SCOPE OF CARE
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Provide psychosocial
support and advocacy
Provide health and
resource information
Average case loads: 2530 complex CSHCN
BENEFITS OF SPECIAL NEEDS
PROGRAM

TO FAMILIES
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To PCP
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Assists with establishing a
plan of care
Facilitates communication
between providers
Coordinates appointments
Provides a single point of
contact
Facilitates access to
community resources
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Initiates a clinical summary
Keeps PCP in the loop
Facilitates communication
with specialists
One-stop shopping (call CM
for appointments, results, etc)
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Comment from a PCP:
“You’ve made it so much easier
to follow my patients”
PROGRAM EVALUATION
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Patient/family satisfaction
(Ireys and Perry)
Cost and reimbursement data
evaluated
Anecdotal feedback from
primary care physicians and
other providers
Outcomes including Quality of
Life, Functional Status, and
resource utilization will be
measured
Patient Satisfaction Survey 2003

Results
Coordinating care: 8% very good, 80% excellent
– Referring to other specialties: 12 % very good, 78% Excellent
– Communication with professionals: 12% very good,
78% Excellent
Parent comments:
“CM services have been the greatest plus that has ever
happened to us“
“The CM has been a wonderful asset to our family and has taken
much of the stress out of our child’s health care”
“Our CM saves me so much time and reduces my stress level
greatly. I can be mom, not her nurse and case manager too”
–
REIMBURSEMENT STRATEGIES
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WI Medicaid program:
targeted case
management
Commercial Payers for
nurse case management
Physician billing for care
coordination
Other grants and funding
ISSUES/CHALLENGES
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Funding for care coordination services
Increasing demand for case managers
Limited capacity for current staff to increase
caseloads
Inadequate reimbursement adversely affects
ability to add more case managers to program
FUTURE DIRECTIONS OF THE SNP
PROGRAM
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Prove to payers and administrators that care
coordination of CSHCN makes a difference-MEASURE
PERTINENT OUTCOMES!
Validate intensity/acuity scoring tool
Refine identification of the target population
Perform needs assessment of families of CSHCN,
PCPs, and sub-specialists
Seek funding opportunities for continuing program
development and outcomes studies
Spread Medical Home partnerships in WI
Continue collaboration with the resident teaching
program
SUMMARY

The SNP is considered by
families, physicians, and
other healthcare
professionals to provide
optimal care for medically
fragile children. The SNP is
uniquely able to work with
families and the PCP to
improve quality of care,
eliminate inefficiencies, and
improve family satisfaction.

One parent comments:
“The CM has been a lifesaving asset to our family, our
sanity and our child’s medical
team.”
Together Everyone Achieves More
A Children with
Special Health Care
Needs rotation for
third year (PL-3)
Residents at
Children’s Hospital of
Wisconsin
T Together
E Everyone
A Achieves
M More
Anne K. Juhlmann RN, BSN
BACKGROUND
Children with special health care needs (CSHCN) make up
15-18% of the U.S. pediatric population
Special health care needs impact development, function,
and well-being of children, families and communities.
Pediatricians are expected to successfully serve the
growing population of CSHCN and their families.
BACKGROUND
“Is there nothing that
medical faculty …can
do to stay in more
open, feeling contact
with their own
humanity and that of
their patient?
Renée Fox
REALITY
Greater than 70% of
practicing
pediatricians report
feeling unprepared to
provide care to
CSHCN and their
families.
Vision:
Every child
deserves a
medical home
and by 2010
every child will
have one.
REALITY:
The typical Pediatric
Residency does not
focus on how to
provide a medical
home to CSHCN
and families.
EDUCATION
The bridge between vision and provision
OVERALL GOAL
Improve health care for CSHCN by
developing a CSHCN rotation for third year
Pediatric Resident that is fun, practical and
focuses on:
•The impact of chronic disease and disability on
the child, family, community, and health care
providers.
•The importance of providing medical homes for
these children and their families.
INTENTION OF ROTATION

Give residents the opportunity to appreciate the
challenges, rewards, needs, beliefs, hopes and
perspectives of families of CSHCN
Teach residents that serving CSHCN and
their families requires a TEAM approach
utilizing community, primary and tertiary care
providers and resources.
INTENTION OF ROTATION
Teach
residents about the
potential benefits, challenges
and opportunities inherent in
providing medical homes for
CSHCN.
Provide
residents with
practical approaches to caring
for CSHCN and their families.
Description of CSHCN Rotation
In Jan. 2003 the Children with Special Health Care
Needs Rotation was added to the curriculum’s required
third year Behavior and Development Rotation.
Residents participate in approximately 14 half day
experiences in hospital, outpatient clinic and
community settings.
Teachers are physicians, nurses, physical,
occupational and speech therapists, community
providers and most importantly - families
THE FOCUS
All experiences focus on
the IMPACT of special
health care needs on
children, their families
and the community AND
the need for an
interdisciplinary TEAM
approach to caring for
CSHCN.
FOCUS OF CARE COORDINATION
EXERCISES and TEAM MEETINGS
How to prepare clinical summaries
and strategies for providing care
coordination to CSHCN
Identifying and mobilizing resources
for CSHCN and families.
“I plan to start clinical
summaries for the
CSHCN in my practice.
What an asset to families
& providers!”
“It seems so many
things get missed
when no one is
coordinating care”
FOCUS OF HOME PROVIDER EXPERIENCES
Durable Medical Equipment
(DME) Provider:
The expertise and activities of
DME Providers.
“I never knew how much
Sam Juhlmann
“It made me realize that
there are many more people
behind the scenes that help
me to care for a CSHCN.”
preparation went into even a
single day at home for a single
complex patient!”
Home Care Agency:
The pivotal role of home care
providers and how
pediatricians can help them
serve CSHCN.
FOCUS OF FAMILY
HOME VISIT
The focus is on daily life for the
child and the family and the
family’s ability to find quality of
life despite their many
challenges.
“After two hours I was exhausted –
mentally and emotionally. It is hard to
imagine living with the daily routines
this family has established.”
“The positive attitudes of parents is a
true inspiration!”
“I was inspired to
become the physician
they spoke so highly
of.”
FOCUS OF FAMILY HOME VISIT
How kids can be kids and families can be
families despite special health care needs.
“This mom helped me to
understand that she still has
hopes and dreams for her
child to lead the best life that
she can. Isn’t that really the
hope that all parents have for
their children?
This was my best
experience to truly
understand a CSHCN!
FOCUS OF OUTPATIENT
CLINIC EXPERIENCES
Cerebral Palsy, Muscular Dystrophy, Spina Bifida,
Palliative Care, Tracheostomy/Ventilator
Impact of pediatric disorders
and technology on CSHCN and
their families.
Importance of home nurses in
the lives of these children and
families.
“Functionality is really
what families care about
and want to talk about.
Something most doctors do
not consider”
FOCUS OF SEATING &
EQUIPMENT CLINIC
Improving mobility and
quality of life for
children who require
custom wheelchairs
and adaptive
equipment.
“It is crucial to maximize the
mobility of the family rather than
just the mobility of the child.“
FOCUS OF PHYSICAL, OCCUPATIONAL
AND SPEECH THERAPY SESSIONS.
The impact of
developmental delays
on the child, family and
community.
When and how to
request, monitor and
advocate for various
types of therapeutic
intervention.
“therapy does not just end in
clinic but is a way of life at
home. “
FOCUS OF SCHOOL VISIT
Needs, challenges,
barriers and
opportunities for
CSHCN in school.
How physicians can
support and advocate
for accessible,
individualized and
appropriate education.
FOCUS OF CSHCN REGIONAL
CENTERS IN WISCONSIN
The crucial role of
community and
statewide resources for
CSHCN and families.
“”As a physician I can
advocate for more resources”
“People who know resources
are a substantial and
invaluable resource.”
“Families are a great
support for each
other!”
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ASSESSING RESIDENT LEARNING
THROUGH DAILY JOURNAL ENTIRES
Residents were required to record
their thoughts and reflections upon
completion of each of their experiences.
“Reflective writing enables doctors to examine their
practice critically from a wide perspective, and to
increase their understanding and empathy.”
“Writing keeps us alert, alive and flexible. It keeps us
questioning: questioning medical practice, our patients
and ourselves.”
Gillie Bolton
ASSESSING RESIDENT LEARNING
THROUGH FORMAL PRESENTATIONS
All residents prepared a
formal presentation at the
end of his/her rotation that
focused on the challenges
faced by families caring for
CSHCN, the benefits of a
medical home and how they
will deal with the barriers to
implementing a medical
home for CSHCN in their
practice.
“Who will be the leader?”
“I’ll be the Leader!”
FAMILY (TEACHER) VIEWS
“Talking with the resident made
me feel like all of our experiences
could be used to help the resident
be a better doctor for other
children and families like ours.”
“I was touched at the resident’s
genuine amazement at all we do.
It made me feel like she was
beginning to get it.”
FAMILY (TEACHER)
VIEWS
“The resident said,
‘I never knew how
much fun your
child had at home.
I used to
wonder why you
continued to care
for him. Now I
know why.”
The resident shared some of the
feelings she had as an intern
caring for my child. I shared my
sense feelings during
hospitalizations. I felt as if we
began to build a bridge of
understanding tonight.”
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Resident Evaluations of Rotation
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Agree
Disagree
Strongly Disagree
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SUMMARY and CONCLUSIONS
Good time to do it
The right amount of
time
The residents take it
seriously
Without a
medical home
a child’s life
may easily
become
overshadowed
or even defined
by their special
health care
need.
Every Child Deserves A Medical Home!
“With every child’s brain is a mind teeming with ideas
and dreams and abilities unrealized. The greatest thing
we can do as parents, teachers, physicians, friends is to
nourish that potential, both intellectual and
humanitarian, so that each mind can fulfill its promise to
the benefit of mankind.”
Dr. Ben Carson