The Medical Homein Practice

Rural Community-Based

And

Tertiary Care Center Models

CHILDREN’S HOSPITAL OF WISCONSIN (CHW) SPECIAL NEEDS PROGRAM

A PRIMARY CARE/TERTIARY CAREMEDICAL HOME PARTNERSHIP

Holly Colby, RN, MS

EVOLUTION OF THE SPECIAL NEEDS PROGRAM (SNP)

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

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

– At least five sub-specialists– Multiple and/or uncertain

diagnoses Patient is not already

followed by a CM

Criteria for SNP enrollment

Medical condition requires frequent care and monitoring

Periods of medical instability

Socially complex situation

PCP requests care coordination assistance

REFERRAL SOURCES 2003

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

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

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

Provide psychosocial support and advocacy

Provide health and resource information

Average case loads: 25-30 complex CSHCN

BENEFITS OF SPECIAL NEEDS PROGRAM

TO FAMILIES Assists with establishing a

plan of care Facilitates communication

between providers Coordinates appointments Provides a single point of

contact Facilitates access to

community resources

To PCP Initiates a clinical summary Keeps PCP in the loop Facilitates communication

with specialists One-stop shopping (call CM

for appointments, results, etc)

Comment from a PCP:“You’ve made it so much easier

to follow my patients”

PROGRAM EVALUATION

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% ExcellentParent 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

WI Medicaid program: targeted case management

Commercial Payers for nurse case management

Physician billing for care coordination

Other grants and funding

ISSUES/CHALLENGES

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

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 life-saving 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

WisconsinAnne K. Juhlmann RN, BSN

BACKGROUNDChildren 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.

“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

BACKGROUND

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.

EDUCATIONThe 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

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.

THE FOCUS

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.

“It seems so many things get missed when no

one is coordinating

care”

“I plan to start clinical summaries for the CSHCN in

my practice. What an asset to families

& providers!”

FOCUS OF HOME PROVIDER EXPERIENCES

Durable Medical Equipment (DME) Provider:

The expertise and activities of DME Providers.

Home Care Agency: The pivotal role of home care

providers and how pediatricians can help them serve CSHCN.

“I never knew how much preparation went into even a single day at home for a single complex patient!”

Sam Juhlmann

“It made me realize that there are many more

people behind the scenes that help me to care for a

CSHCN.”

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.

FOCUS OF FAMILY HOME VISIT

“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

Impact of pediatric disorders and technology on CSHCN and their families.

Importance of home nurses in the lives of these children and families.

Cerebral Palsy, Muscular Dystrophy, Spina Bifida, Palliative Care, Tracheostomy/Ventilator

“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.

“Families are a great support

for each other!”

“”As a physician I can advocate for more

resources”

“People who know resources are a substantial and

invaluable resource.”

Comfort and Competency Before RotationN

umbe

r of

Res

iden

ts

0

2

4

6

8

Strongly AgreeAgreeDisagreeStrongly Disagree

I kno

w wha

t a C

SHCN is

I kno

w wha

t a M

edica

l Hom

e is

I kno

w the

impa

ct of

CSHCN

on fa

milie

s and

com

mun

ity

I kno

w how

to a

sses

s nee

ds

of C

SHCN

I kno

w how

to a

ssist

the

fam

ily o

f a C

SHCN

I kno

w how

to se

t up

a M

edica

l

Home

in m

y Pra

ctice

I am

com

forta

ble ca

ring

for

CSHCN and

their

fam

ilies

I am

com

forta

ble w

orkin

g

with co

mm

unity

pro

vider

s

I am

com

forta

ble a

dvoc

ating

for C

SHCN

ASSESSING RESIDENT LEARNING

Comfort and Competency After RotationN

umbe

r of

Res

iden

ts

0

2

4

6

8

Strongly AgreeAgreeDisagreeStrongly Disagree

I kno

w wha

t a C

SHCN is

I kno

w wha

t a M

edica

l Hom

e is

I kno

w the

impa

ct of

CSHCN

on fa

milie

s and

com

mun

ity

I kno

w how

to a

sses

s nee

ds

of C

SHCN

I kno

w how

to a

ssist

the

fam

ily o

f a C

SHCN

I kno

w how

to se

t up

a M

edica

l

Home

in m

y Pra

ctice

I am

com

forta

ble ca

ring

for

CSHCN and

their

fam

ilies

I am

com

forta

ble w

orkin

g

with co

mm

unity

pro

vider

s

I am

com

forta

ble a

dvoc

ating

for C

SHCN

ASSESSING RESIDENT LEARNING

ASSESSING RESIDENT LEARNINGTHROUGH 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 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.”

“The resident said, ‘I never knew how

much fun your child had at home.

I used towonder why you continued to care

for him. Now I know why.”

Resident Evaluations of RotationN

umbe

r of

Res

iden

ts

0

2

4

6

8

Strongly AgreeAgreeDisagreeStrongly Disagree

Rotat

ion is

relev

ant t

o m

y wor

k

Rotat

ion p

rovid

ed m

e with

insig

ht

into

carin

g fo

r CSHCN

Rotat

ion re

peat

s mat

erial

lear

ned

elsew

here

dur

ing re

siden

cy

Rotat

ion ch

ange

d th

e way

I wor

k with

CSHCN and

The

ir Fam

ilies

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