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Sickle Cell Disease Program Evaluations

ATTACH_F_CMHI-MHI-Pediatric_Full-Version

Sickle Cell Disease Treatment Demonstration Program (SCDTDP) Evaluation - Medical Home Family Index

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The Medical Home Index: Pediatric
Measuring the Organization and Delivery of Pediatric Primary Care for All Children, Youth and Families
The Medical Home Index (MHI) is a validated self-assessment and classification tool designed to translate the broad indicators defining the
medical home (accessible, family-centered, comprehensive, coordinated, etc.) into observable, tangible behaviors and processes of care within any
office setting. It is a way of measuring and quantifying the "medical homeness" of a primary care practice. The MHI is based on the premise that
"medical home" is an evolutionary process rather than a fully realized status for most practices. The MHI measures a practice's progress in this
developmental process.
The MHI defines, describes, and quantifies activities related to the organization and delivery of primary care for all children and youth. A
population of vulnerable children and youth, including those with special health care needs, benefit greatly from having a high quality medical home.
Medical Home represents the standard of excellence for pediatric primary care, this means the primary care practice is ready and willing to provide
well, acute and chronic care for all children and youth, including those affected by special health care needs or who hold other risks for compromised
health and wellness.
You will be asked to rank the level (1-4) of your practice in six domains: organizational capacity, chronic condition management, care
coordination, community outreach, data management and quality improvement/change. Most practices may not function at many of the higher levels
(Levels 3 and 4). However these levels represent the kinds of services and supports which families report that they need from their medical home. A
frank assessment of your current practice will best characterize your medical home baseline, and will help to identify needed improvement supports.
A companion survey to the Medical Home Index, the Medical Home Family Index (MHFI), is intended for use with a cohort of practice
families (particularly those who have children/youth affected by a chronic health condition). The MHFI is to be completed by families whose children
receive care from a practice with whom their child has been seen for over a year. The Medical Home Family Index provides the practice team with a
valuable parent/consumer perspective on the overall experience of care.
Guidelines
CMHI tools are made available to you on our web site www.medicalhomeimprovement.org . When using these tools we request that you:
1) Inform CMHI in writing of your intent for use (e-mail is fine).
2) Make every effort to gain family feedback using the MHFI (or other tool). We believe that "medical homeness" cannot be fully measured
without an analysis of the family perspective.
3) We would also appreciate you sharing data with us (in a confidential fashion). Most programs have done this by sending copies of the
Medical Home Index and MHFI (with all practice and personal identifiers removed), or by simply sharing aggregate data.

The Medical Home Index: Pediatric
Measuring the Organization and Delivery of Pediatric Primary Care for All Children, Youth and Families
Clinic Contact Information
Date
Clinic Name:
Street Address:
City:

Zip Code:

State:

Phone:

Fax

Who took the lead in completing this form?

Who should we contact at your clinic if we have questions about your responses, or if responses are missing/incomplete?
Name (if different than the person who completed this form):
Title/Position/Role:
Best phone number to reach contact if different than above:
Contact E-mail:

www.medicalhomeimprovement.org
© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 2

The Medical Home Index: Pediatric
Measuring the Organization and Delivery of Pediatric Primary Care for All Children, Youth and Families
Number of clinicians: MD's

Describe your practice type/model

Is there a care coordinator working at your practice who supports children, youth and families?
What is the estimated number of children that your practice cares for?

Yes

ARNPs

PA's

Other

No

What is your patient panel size?

Can you estimate the percentage (total should = 100%) of children you care for who have:
1)

% Public insurance only (Medicaid/Medicare)

2)

% Private & Medicaid/Medicare

3)

% Self/No pay

4)

% Private insurance only

5)

% Other

How familiar/knowledgeable are you about the concept of a medical home as defined by the American Academy of Pediatrics?
1)

No knowledge of the concepts

2)

Some knowledge/not applied

3)

Knowledgeable/concept sometimes applied in practice

4)

Knowledgeable/concepts regularly applied in practice

How familiar/knowledgeable are you about the elements of family-centered care as defined by the US Maternal and Child Health Bureau?
1)

No knowledge of the concepts

2)

Some knowledge/not applied

3)

Knowledgeable/concept sometimes applied in practice

4)

Knowledgeable/concepts regularly applied in practice

(Note: Any italicized words are defined in the glossary on page 15)
© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 3

The Medical Home Index: Pediatric
Measuring the Organization and Delivery of Pediatric Primary Care for All Children, Youth and Families
INSTRUCTIONS:
This instrument is organized under six domains:
1) Organizational Capacity 2) Chronic Condition Management

3) Care Coordination

4) Community Outreach
6) Quality Improvement
5) Data Management
Each domain has anywhere from 2 -7 themes, these themes are represented with progressively comprehensive care processes and are expressed as a
continuum from Level 1 through Level 4. For each theme please do the following:
First:
Read each theme across its progressive continuum from Levels 1 to Level 4.
Second:
Select the LEVEL (1, 2, 3 or 4) which best describes how your practice currently provides care for patients with chronic health condition
Third:
When you have selected your Level, please indicate whether practice performance within that level is:
"PARTIAL"
(some activity within level) or "COMPLETE" (all activity within that level).
For the example below, "Domain 1: Organizational Capacity, Theme 1. 1 "The Mission..." the score for the practice is: "Level 3",
"PARTIAL".

Domain 1: Organizational Capacity: ForEXAMPLE
CSHCN and Their Families
THEME:

Level 1

#1.1
The
Mission
of the
Practice

Primary care providers (PCPs) at
the practice have individual ways
of delivering care to children
with special health care needs
CSHCN; their own education,
experience and interests drive
care quality.

PARTIAL

COMPLETE

Level 2
Approaches to the care of
CSHCN at the practice are
child rather than familycentered; office needs drive the
implementation of care (e.g.
the process of carrying out
care).

PARTIAL

COMPLETE

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

Level 3
The practice uses a family-centered
approach to care (see page15), they
assess CSHCN and the needs of
their families in accordance with its
mission; feedback is solicited from
families and influences office
policies (e.g. the way things are
done).

X PARTIAL

COMPLETE

Level 4
In addition to Level 3, a parent/ practice "advisory
group" promotes family-centered strategies, practices
and policies (e.g. enhanced communication methods
or systematic inquiry of family concerns/priorities); a
written, visible mission statement reflects practice
commitment to quality care for CSHCN and their
families.

PARTIAL

COMPLETE

The Medical Home Index - Page 4

Domain 1: Organizational Capacity: For CSHCN and Their Families
THEME:
#1.1
The
Mission
of the
Practice

Level 1
Primary care providers (PCPs) at
the practice have individual
ways of delivering care to
children with special health
care needs (CSHCN); their
own education, experience and
interests drive care quality.
Partial

#1.2
Communication/
Access

Communication between the
family and the PCP occurs as a
result of family inquiry; PCP
contacts with the family are
for test result delivery or
planned medical follow-up.

Partial

#1.3
Access to
the Medical
Record

Complete

Complete

A policy of access to medical
records is not routinely
discussed with families; records
are provided only upon
request.

Level 2
Approaches to the care of
CSHCN at the practice are
child rather than familycentered; office needs drive
the implementation of care
(e.g. the process of carrying
out care).
Partial

Complete

In addition to Level 1,
standardized office
communication methods are
identified to the family by the
practice (e.g. call-in hours,
phone triage for questions, or
provider call back hours).
Partial

Complete

In addition to Level 1, it is
established among staff that
families can review their child's
record (but this fact is not
explicitly shared with families).

Level 3
The practice uses a family-centered
approach to care (see page15), they
assess CSHCN and the needs of their
families in accordance with its
mission; feedback is solicited from
families and influences office policies
(e.g. the way things are done).
Partial

Complete

Practice and family communicate at
agreed upon intervals and both
agree on "best time and way to
contact me"; individual needs
prompt weekend or other special
appointments.

Partial

Complete

All families are informed that they
have access to their child's record;
staff facilitates access within 24-48
hours.

Level 4
In addition to Level 3, a parent/practice "advisory
group" promotes family-centered strategies, practices and
policies (e.g. enhanced communication methods or
systematic inquiry of family concerns/priorities); a
written,visible mission statement reflects practice
commitment to quality care for CSHCN and their
families.
Partial

Complete

In addition to Level 3, office activities encourage
individual requests for flexible access; access and
communication preferences are documented in the
care plan and used by other practice staff (e.g. fax,
e-mail or web messages, home, school or residential
care visits).

Partial

Complete

In addition to Level 3, practice orientation materials
include information on record access; staff locate
space for families to read their child's record and
make themselves available to answer questions.

Requires both MD
& key non-MD staff
person's perspective.

Partial

Complete

Partial

Complete

Partial

Complete

Partial

Complete

Instructions: A) Please select and circle one level from Levels 1, 2 3, or 4 for each theme above (circle one).
B) Then indicate whether you place your practice at a PARTIAL or COMPLETE ranking within that level (circle one).

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 5

Domain 1: Organizational Capacity (continued): For CSHCN and Their Families
THEME:
#1.4
Office
Environment
Requires both MD &
key non-MD staff
person's perspective.

Level 1
Special needs concerning
physical access and other
visit accommodations are
considered at the time of the
appointment and are met if
possible.

Partial

#1.5
Family
Feedback
Requires both MD
& key non-MD staff
person's perspective.

Family feedback to the practice
occurs through external
mechanisms such as
satisfaction surveys issued by
a health plan; this information
is not always shared with
practice staff.
Partial

#1.6
Cultural
Competence

Complete

Complete

The primary care provider
(PCP) attempts to overcome
obstacles of language,
literacy, or personal
preferences on a case by case
basis when confronted with
barriers to care.
Partial

Complete

Level 2
Assessments are made during the
visit of children with special health
care needs and the needs of their
families; any physical access &
other visit accommodation needs
are addressed at the visit and are
documented for future encounters.
Partial

Complete

Feedback from families of CSHCN
is elicited sporadically by individual
practice providers or by a suggestion
box; this feedback is shared
informally with other providers and
staff.

Partial

Complete

In addition to Level 1, resources
and information are available for
families of the most common
diverse cultural backgrounds; others
are assisted individually through
efforts to obtain translators or to
access information from outside
sources.
Partial

Complete

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

Level 3
In addition to Level 2, staff ask about
any new or pre-existing physical and
social needs when scheduling appoint
ments; chart documentation is
updated and staff are informed/
prepared ahead of time ensuring
continuity of care.
Partial

Complete

Feedback from families of CSHCN
regarding their perception of care is
gathered through systematic
methods (e.g. surveys, focus groups,
or interviews); there is a process for
staff to review this feedback and to
begin problem solving.
Partial

Complete

In addition to Level 2, materials are
available and appropriate for nonEnglish speaking families, those with
limited literacy; these materials are
appropriate to the developmental level
of the child/young adult.

Partial

Complete

Level 4
In addition to Level 3, key staff identify children
scheduled each day with special health care
needs, prepare for their visit and assess and
document new needs at the visit; an office care
coordinator prepares both office staff and the
office environment for the visit; s/he advocates
for changes (office/environmental) as needed.
Partial

Complete

In addition to Level 3, an advisory process is in
place with families of CSHCN which helps to
identify needs and implement creative
solutions; there are tangible supports to enable
families to participate in these activities (e.g.
childcare or parent stipends).

Partial

Complete

In addition to Level 3, family assessments
include pertinent cultural information,
particularly about health beliefs; this information
is incorporated into care plans; the practice uses
these encounters to assess patient & community
cultural needs.

Partial

Complete

The Medical Home Index - Page 6

Domain 1: Organizational Capacity (continued): For CSHCN and Their Families
THEME:
#1.7
Staff
Education

Level 1
For all staff, an orientation
to internal office practices,
procedures and policies is
provided.

Requires both MD &
key non-MD staff
person's perspective.

Partial

Complete

Level 2
In addition to Level 1, the
practice supports (paid time/
tuition support) continuing
education for all staff in the care
of CSHCN (children with
special health care needs).

Partial

Complete

Level 3
In addition to Level 2, educational
information on community-based resources
for CSHCN, including diagnosis specific
resource information, is available for all
staff.

Partial

Complete

Level 4
In addition to Level 3, families of CSHCN
are integrated into office staff orientations and
educational opportunities as teachers or
"family faculty"; support for families to take
this role is provided.

Partial

Complete

Domain 2: Chronic Condition Management (CCM): For CSHCN and Their Families
Level 1
Level 2 (in addition to level 1)
Level 3 (in addition to level 2)
Level 4 (in addition to level 2)
THEME:
#2.1
Identification
of Children
in the
Practice with
Special
Health Care
Needs

Children with special health
care needs (CSHCN) can be
counted informally (e.g. by
memory or from recent acute
encounter); comprehensive
identification can be done
through individual chart
review only.

#2.2
Care
Continuity

Visits occur with the child's
own primary care provider
(PCP) as a result of acute
problems or well child
schedules; the family
determines follow up.

Partial

Partial

Complete

Complete

Lists of children with special
health care needs are
extracted electronically by
diagnostic code.

Partial

Complete

Non-acute visits occur with
families and their PCP to address
chronic condition care; the PCP
determines appropriate visit
intervals; follow-up includes
communication of tasks to staff
and of lab and medical test
results to the family.

Partial

Complete

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

A CSHCN list is generated by applying a
definition (see pg. 15), the list is used to
enhance care +/or define practice activities
(e.g. to flag charts and computer databases
for special attention or identify the
population and its subgroups).

Partial

Complete

The team (including PCP, family, and staff)
develops a plan of care for CSHCN which
details visit schedules and communication
strategies; home, school and community
concerns are addressed in this plan. Practice
back up/cross coverage providers are
informed by these plans.
Partial

Complete

In addition to Level 3, diagnostic codes for
CSHCN are documented, problem lists are
current, and complexity levels are assigned
to each child; this information creates an
accessible practice database.

Partial

Complete

In addition to Level 3, the practice/teams use
condition protocols; they include goals,
services, interventions and referral contacts. A
designated care coordinator uses these tools
and other standardized office processes which
support children and families.

Partial

Complete

The Medical Home Index - Page 7

Domain 2: Chronic Condition Management (continued): For CSHCN and Their Families
Level 1
Level 2
Level 3
Level 4
THEME:
#2.3
Continuity
Across
Settings

Communication among the
PCP, specialists, therapists,
and school happens as needs
arise for CSHCN.

Partial

#2.4
Cooperative
Management
Between
Primary Care
Provider
(PCP) and
Specialist

Complete

Specialty referrals occur in
response to specific diagnostic
and therapeutic needs; families
are the main initiators of
communication between
specialists and their primary
care provider (PCP).

Partial

Complete

A PCP makes requests and/or
responds to requests from
agencies or schools on behalf of
CSHCN (e.g. specific needs for
accommodations, medical orders
or approval of plans, or for a
particular classroom placement);
all communication is
documented.

Partial

Complete

In addition to Level 1, specialty
referrals use phone, written
and/or electronic
communications; the PCP waits
for or relies upon the specialists
to communicate back their
recommendations.

Partial

Complete

Systematic practice activities foster
communication among the
practice, family, and external
providers such as specialists,
schools, and other community
professionals for CSHCN; these
methods are documented and may
include information exchange
forms or ad hoc meetings with
external providers.

Partial

Complete

The PCP and family set goals for
referrals and communicate these to
specialists; together they clarify
comanagement roles among family,
PCP and specialists and determine
how specialty feedback to the
family and PCP is expressed, used,
and shared.

Partial

Complete

In addition to Level 3, a method is used to convene
the family and key professionals on behalf of children
with more complex health concerns; specific issues
are brought to this group and they all share and use a
written plan of care.

Partial

Complete

In addition to Level 3, the family has the option of
using the practice in a strong coordinating role;
parents as partners with the practice manage their
child's care using specialists for consultations and
information (unless they decide it is prudent for the
specialist to manage the majority of their child's
care).

Partial

Complete

Instructions: A) Please select and circle one level from Levels 1, 2 3, or 4 for each theme above (circle one).
B) Then indicate whether you place your practice at a PARTIAL or COMPLETE ranking within that level (circle one).

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 8

Domain 2: Chronic Condition Management (continued): For CSHCN and Their Families
Level 1
Level 2 (in addition to level 1) Level 3 (in addition to level 2) Level 4 (in addition to level 3)
THEME:
# 2.5.1*
Supporting
the
Transition to
Adulthood

Pediatric and adolescent primary
care providers (PCPs) adhere to
defined health maintenance
schedules for youth with special
health care needs in their practice.

Pediatric and adolescent PCPs offer
age appropriate anticipatory guidance
for specific youth & families related to
their chronic condition, self-care,
nutrition, fitness, sexuality, and other
health behavior information.

* transition measure
revised August,
2006.

Partial

#2.6
Family
Support
Requires both MD &
key non-MD staff
person's perspective.

Complete

Families are responsible for
carrying out recommendations
made to them by their PCP when
they specifically ask for family
support or help.

Partial

Complete

Partial

Complete

The practice responds to clinical
needs; broader social and family needs
are addressed and referrals to support
services facilitated.

Partial

Complete

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

Pediatric and adolescent PCPs support
youth & family to manage their health
using a transition time line &
developmental approach; they assess
needs & offer culturally effective
guidance related to:
• health & wellness
• education & vocational planning
• guardianship and legal & financial
issues
• community supports & recreation
When youth transition from pediatrician
to adult provider:
Pediatricians help to identify an adult
PCP and sub-specialists and offer
ongoing consultation to youth, family
and providers during the transition
process.
Adult Providers offer an initial
"welcome" visit and a review of
transition goals.
Partial

Complete

The practice actively takes into account
the overall family impact when a child
has a chronic health condition by
considering all family members in care;
when families request it, staff will assist
them to set up family support
connections.
Partial

Complete

Progressively from age 12, youth, family
and PCP develop a written transition plan
within the care plan; it is made
available to families and all involved
providers. Youth and families receive
coordination support to link their health
and transition plans with other relevant
adolescent and adult providers/services/
agencies (e.g. sub-specialists, educational,
financial, insurance, housing, recreation
employment and legal assistance).

Partial

Complete

In addition to Level 3, the practice
sponsors family support activities (e.g.
skills building for parents of CSHCN on
how to become a supporting parent);
they have current knowledge of
community or state support organizations
and connect parents to them.
Partial

Complete

The Medical Home Index - Page 9

Domain 3: Care Coordination For CSHCN and Their Families
THEME:
#3.1
Care
Coordination
/Role
Definition

Level 1
The family coordinates care
without specific support; they
integrate office
recommendations into their
child's care.

Partial

#3.2
Family
Involvement

The PCP makes medical
recommendations and defines
care coordination needs, the
family carries these out.

Partial

#3.3
Child and
Family Education

Complete

Complete

Generic and specific reading
materials and brochures are
available from the practice
upon request.

Requires both MD &

Level 2
The primary care provider (PCP)
or a staff member engages in
care support activities as needed;
involvement with the family is
variable.

Partial

Complete

Families (and their older
CSHCN are regularly asked
what care supports they
need; treatment decisions are
made jointly with the PCP.

Partial

Complete

Basic information relevant to
CSHCN is offered in one on
one interactions with children
and families; these encounters
use supportive written
information with resource
information.

key non-MD staff
person's perspective.

Partial

Complete

Partial

Complete

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

Level 3
Care coordination activities are
based upon ongoing assessments
of child and family needs; the
practice partners with the family
(and older child) to accomplish
care coordination goals.

Partial

Complete

In addition to Level 2, families
(and older CSHCN) are given the
option of centralizing care
coordination activities at and in
partnership with the practice.

Partial

Complete

General information regarding
having a child with special needs,
and diagnosis specific
information, is offered by the
practice in a standardized manner;
education anticipates potential
issues and problems and refers
families to other educational
resources.
Partial

Complete

Level 4
Practice staff offer a set of care coordination activities
(*see page 16), their level of involvement fluctuates
according to family needs/wishes. A designated care
coordinator ensures the availability of these activities
including written care plans with ongoing monitoring.

Partial

Complete

In addition to Level 3, children & families contribute
to a description of care coordination activities; a care
coordinator specifically develops and implements this
practice capacity which is evaluated by families and
designated supervisors.

Partial

Complete

In addition to Level 3, diverse materials and teaching
methods are used to address individual learning styles
& needs; education is broad in scope and learning
outcomes are examined.

Partial

Complete

The Medical Home Index - Page 10

Domain 3: Care Coordination (continued): For CSHCN and Their Families:
THEME:
#3.4
Assessment
of Needs/
Plans of
Care

Level 1
Presentation of CSHCN
with acute problems
determines how needs are
addressed.

Partial

#3.5
Resource
Information
and
Referrals

Complete

Information about resource
needs and insurance coverage
is gathered during regular
family visit intakes; the practice
addresses immediate family
information and resource
needs.

Level 2
PCPs identify specific needs of
CSHCN; follow-up tasks are
arranged for, or are assigned to
families &/or available staff.

Partial

Complete

Using a listing of community, state,
and national resources which cover
physical, developmental, social and
financial needs the practice responds to
family requests for information; the
family seeks out additional information
& may share back lessons learned.

Level 3
The child with special needs,
family, and PCP review current
child health status and anticipated
problems or needs; they create/
revise action plans and allocate
responsibilities at least 2 times per
year or at individualized intervals.

Partial

Complete

Significant office knowledge about
family and medical resources and
insurance options is available;
assessment of family needs leads to
supported use of resources and
information to solve specific
problems.

Level 4
In addition to Level 3, the PCP/staff and
families create a written plan of care that is
monitored at every visit; the office care
coordinator is available to the child and family
to implement, update and evaluate the care
plan.

Partial

Complete

In addition to Level 3, practice staff work with
families helping solve resource problems; a
designated care coordinator provides follow
up, researches additional information, seeks
and provides feedback and assists with the
family to integrate new information into the
care plan.

Requires both MD &
key non-MD staff
person's perspective.

Partial

#3.6
Advocacy

Complete

The PCP suggests that the
family find support services &
resources outside of the practice
when specific needs arise (e.g.
diagnosis specific support
groups, disability rights
organizations, or Parent
Support and Information
Centers).
Partial

Complete

Partial

Complete

All families of CSHCN are routinely
provided with basic information about
Parent to Parent groups, family
support, and advocacy resources
during scheduled practice visits.

Partial

Complete

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

Partial

Complete

The practice team identifies
resources to the family for
support and advocacy, facilitates
the connections, and advocates
on a family's behalf to solve
specific problems pertinent to
CSHCNs.

Partial

Complete

Partial

Complete

In addition to Level 3, this team advocates on
behalf of all CSHCN and their families as a
population and helps to create opportunities for
community forums, discussions or support
groups which address specific concerns.

Partial

Complete

The Medical Home Index - Page 11

Domain 4: Community Outreach: For CSHCN and Their Families
THEME:
#4.1
Community
Assessment
of Needs
for CSHCN

Level 1

Level 2

Primary care provider (PCP)
awareness of the population
of children with special
health care needs CSHCN in
their community is directly
related to the number of
children for whom the
provider cares.

The practice learns about issues
and needs related to CSHCNs
from key community informants; providers blend this input
with their own personal
observations to make an
informal and personal
assessment of the needs
of CSHCN in their
community.

Partial

#4.2
Community
Outreach to
Agencies
and
Schools.

Complete

When the family, school or
agency request interactions
with the primary care provider
(PCP) on behalf of a child's
community needs, the
provider responds, thereby
establishing the practice as a
resource.

Partial

Complete

Partial

Complete

In addition to Level 1, when a
community agency or school
requests technical assistance or
education from the practice
about CSHCN, the practice
communicates, collaborates,
and educates based upon
availability and interest.

Partial

Complete

Level 3
In addition to Level 2, providers
raise their own questions regarding
the population of CSHCN in their
practice community(ies); they seek
pertinent data and information
from families and local/state sources
and use data to inform practice care
activities.

Partial

Complete

The practice initiates outreach to
community agencies and schools
that directly serve CSHCN (e.g.
through representation on one or
more advisory boards or
committees); they advocate for
improved community services and
inter-organizational collaboration
& communication.

Partial

Complete

Level 4
In addition to Level 3, at least one clinical practice
provider participates in a community-based public
health need assessment about CSHCN, integrates
results into practice policies, and shares conclusions
about population needs with community & state
agencies.

Partial

Complete

In addition to Level 3, the practice identifies needs of
CSHCN & their families; they work with families to
sponsor activities that raise community awareness to
resource and support needs (e.g. specialized home
care, respite care recreation opportunities, or
improving home/school/ provider communication).

Partial

Complete

Instructions: A) Please select and circle one level from Levels 1, 2 3, or 4 for each theme above (circle one).
B) Then indicate whether you place your practice at a PARTIAL or COMPLETE ranking within that level (circle one).

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 12

Domain 5: Data Management: For CSHCN and Their Families
Level 1
Level 2
Level 3
THEME:
#5.1
Electronic
Data
Support

Primary care providers (PCPs)
retrieve information/data by
individual chart review;
electronic data are available
and retrievable from payer
sources only.

Partial

#5.2
Data
Retrieval
Capacity

Complete

PCP retrieves patient data
from paper records in
response to outside agency
requirements (e.g. quality
standards, special projects,
or practice improvements).

Partial

Complete

Electronic recording of data is
limited to billing & scheduling;
data are retrieved according to
diagnostic code in relation to
billing and scheduling; these
data are used to identify specific
patient groupings.
Partial

Complete

The practice retrieves data
from paper records and
electronic billing and
scheduling for the support of
significant office changes (e.g.
staffing, or allocation of
resources).
Partial

Complete

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

An electronic data system includes
identifiers and utilization data
about children with special health
care needs CSHCN; these data are
used for monitoring, tracking, and
for indicating levels of care
complexity.
Partial

Complete

Data are retrieved from electronic
records to identify and quantify
populations and to track selected
health indicators & outcomes.

Partial

Complete

Level 4
In addition to Level 3, an electronic data system is
used to support the documentation of need,
monitoring of clinical care, care plan and related
coordination and the determination of outcomes (e.g.
clinical, functional, satisfaction and cost outcomes).

Partial

Complete

In addition to Level 3, electronic data are produced
and used to drive practice improvements & to
measure quality against benchmarks; (those producing
and using data practice confidentiality).

Partial

Complete

The Medical Home Index - Page 13

Domain 6: Quality Improvement/Change: For CSHCN and Their Families
THEME:
#6.1
Quality
Standards
(structures)

Level 1
Quality standards for children
with special health care needs
(CSHCN) are imposed upon
the practice by internal or
external organizations.

Partial

#6.2
Quality
Activities
(processes)

Complete

Primary care providers (PCPs)
have completed courses or
have had an adequate
orientation to continuous
quality improvement
methods.

Partial

Complete

Level 2

Level 3

In addition to Level 1, an
individual staff member
participates on a committee for
improving processes of care at
the practice for CSHCN. This
person communicates and
promotes improvement goals to
the whole practice.

The practice has its own systematic
quality improvement mechanism
for CSHCN; regular provider and
staff meetings are used for input
and discussions on how to improve
care and treatment for this
population.

Partial

Complete

Corporate owners,
administrators or payers identify
practice deficits and set goals for
improvements; practice providers
and staff are identified to fix
problems with limited
participation in the process.
Partial

Complete

Partial

Complete

Periodic formal, and informal
quality improvement activities
gather staff input about practice
improvement ideas and
opportunities for CSHCN; efforts
are made toward related changes and
improvements for this population.
Partial

Complete

Level 4
In addition to Level 3, the practice actively utilizes
quality improvement (QI) processes; staff and parents
of CSHCN are supported to participate in these QI
activities; resulting quality standards are integrated
into the operations of the practice.

Partial

Complete

In addition to Level 3, the practice systematically learns
about CSHCN & draws upon family input; together the
practice and families design and implement office changes
that address needs and gaps; they then study their
outcomes and act accordingly.

Partial

Complete

Please make certain you have chosen a Level (1-4).
Also indicate whether your practice performance within that level is "partial" (some activity within that level) or "complete" (all activity within the level). Thank You

Instructions: A) Please select and circle one level from Levels 1, 2 3, or 4 for each theme above (circle one).
B) Then indicate whether you place your practice at a PARTIAL or COMPLETE ranking within that level (circle one).

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 14

The Medical Home Index: Pediatric
Measuring the Organization and Delivery of Pediatric Primary Care for All Children, Youth and Families
Definitions of Core Concepts

(Words in italics throughout the document are defined below.)

Children with Special Health Care Needs (CSHCN):
Children with special health care needs are defined by the US Maternal and Child Health Bureau as those who have, or are at increased risk for
chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that
required by children generally (USDHHS, MCHB, 1997).
Medical Home:
A medical home is a community-based primary care setting which provides and coordinates high quality, planned, patient/family-centered: health
promotion (acute, preventive) and chronic condition management (© CMHI, 2006).
Family-Centered Care (US Maternal and Child Health Bureau, 2004):
Family-centered care assures the health and well-being of children and their families through a respectful family-professional partnership. It
honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-centered care is the standard of practice
which results in high quality services.

©Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 15

The Medical Home Index: Pediatric
Measuring the Organization and Delivery of Pediatric Primary Care for All Children, Youth and Families
Glossary of Terms
Practice-Based Care Coordination
Care and services performed in partnership with the family and providers by health professionals to:
1) Establish family-centered community-based Medical Homes for CSHCN and their families.
-Make assessments and monitor child and family needs
-Participate in parent/professional practice improvement activities
2) Facilitate timely access to the Primary Care Provider (PCP), services and resources
-Offer supportive services including counseling, education and listening
-Facilitate communication among PCP, family and others
3) Build bridges among families and health, education and social services; promotes continuity of care
-Develop, monitor, update and follow-up with care planning and care plans
-Organize wrap around teams with families; support meeting recommendations and follow-up
4) Supply/provide access to referrals, information and education for families across systems.

-Coordinate inter-organizationally
-Advocate with and for the family (e.g. to school, day care, or health care settings)
5) Maximize effective, efficient, and innovative use of existing resources
-Find, coordinate and promote effective and efficient use of current resources
-Monitor outcomes for child, family and practice
Chronic Condition Management (CCM):
CCM acknowledges that children and their families may require more than the usual well child, preventive care, and acute illness interventions.
CCM involves explicit changes in the roles of providers and office staff aimed at improving:
1) Access to needed services
2) Communication with specialists, schools, and other resources, and
3) Outcomes for patients, families, practices, employers and payers.
© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 16

The Medical Home Index: Pediatric
Measuring the Organization and Delivery of Pediatric Primary Care for All Children, Youth and Families
GLOSSARY OF TERMS * (continued)
Quality:
Quality is best determined or judged by those who need or who use the services being offered. Quality in the medical home is best achieved
when one learns what children with special health care needs and their families require for care and what they need for support. Health care
teams in partnership with families then work together in ways which enhance the capacity of the family and the practice to meet these needs.
Responsive care is designed in ways which incorporate family needs and suggestions. Those making practice improvements must hold a
commitment to doing what needs to be done and agree to accomplish these goals in essential partnerships with families.
Office Policies:
Definite courses of action adopted for expediency; "the way we do things"; these are clearly articulated to and understood by all who work in
the office environment.
Practice:
The place, providers, and staff where the PCP offers pediatric care
Primary Care Provider - (PCP):
Physician or pediatric nurse practitioner who is considered the main provider of health care for the child
United States Maternal and Child Health Bureau - (USMCHB):
A division of Health Resources Services Administration
Requires both MD and key non-MD staff person's perspective - you will see this declaration before select themes; CMHI has determined
that these questions require the input of both MD and non MD staff to best capture practice activity.

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 17

Summary/Notes
Notes, comments and questions:

Comments:

Questions:

Confusing themes:

What do you want to be asked that this measurement tool does not address?

What would you like us to know about the quality of care that you provide?

© Center for Medical Home Improvement 2001; Transition to adulthood indicator #2.5.1 revised 2006

The Medical Home Index - Page 18


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