Minnesota Children and Youth with
Special Health Needs Systems Integration
Project State Plan
JANUARY 2016
CHILDREN AND YOUTH WITH SPECIAL HEALTH NEEDS
MINNESOTA STATE PLAN
State Implementation Grant for Enhancing the System of Services for CYSHN through
Systems Integration
Minnesota Department of Health
Children and Youth with Special Health Needs
PO Box 64882, St. Paul, MN 55164-0882
http://www.health.state.mn.us/divs/cfh/program/cyshn/index.cfm
Upon request, this material will be made available in an alternative format such as large print, Braille or audio
recording. Printed on recycled paper.
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MINNESOTA STATE PLAN
Contents
Introduction .......................................................................................................................................... 4
“The State of CYSHN in Minnesota”: Needs Assessment Activities and Findings................................. 5
Prevalence of CYSHN ..................................................................................................................... 6
Core Outcomes for a Well-Functioning System for CYSHN ........................................................... 7
Receiving Effective Care Coordination ........................................................................................ 14
Experiences with Health Care Providers ..................................................................................... 24
Stakeholder Engagement and Partnerships ................................................................................ 25
Summary and Recommendations ............................................................................................... 26
Strategic Goals and Objectives............................................................................................................ 27
Minnesota CYSHN Systems Integration Project Work Plan ........................................................ 27
Meaningful Stakeholder Engagement and Leadership Structure ....................................................... 31
CYSHN Parent Workgroup ........................................................................................................... 31
CYSHN Stakeholder Workgroup .................................................................................................. 32
Project Leadership Team ............................................................................................................. 32
Sustainability ....................................................................................................................................... 34
Evaluation Matrix ................................................................................................................................ 35
References........................................................................................................................................... 40
Appendix: Data Tables from Figures/Charts ....................................................................................... 41
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MINNESOTA STATE PLAN
Minnesota CYSHN Systems Integration Project
State Plan
Introduction
In 2014, the Minnesota Department of Health’s (MDH) Children and Youth with Special Health Needs
(CYSHN) Program was selected to receive a three-year State Implementation Grant for Enhancing the
System of Services for Children and Youth with Special Health Care Needs through Systems Integration
from the Maternal and Child Health Bureau of the United States Department of Health and Human
Services - Health Resources and Services Administration.
The purpose of this project is to achieve a comprehensive, coordinated, and integrated state and
community system of services and supports for CYSHN, by increasing stakeholder engagement and
partnerships, improving cross-systems care coordination, and increasing the knowledge of services and
supports available for CYSHN and their families.
The following document serves to meet the Year 1 State Plan benchmark requirement, as set forth in
the grant funding opportunity announcement. The State Plan provides:
•
•
•
•
•
An overview of the project’s needs assessment activities and findings;
A description of the project’s goals, objectives, and strategies;
Strategies for stakeholder engagement and partnerships;
Sustainability plans; and
An evaluation matrix.
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MINNESOTA STATE PLAN
“The State of CYSHN in Minnesota”: Needs Assessment
Activities and Findings
The Minnesota CYSHN Systems Integration Project utilized a systematic process to conduct our needs
assessment. This process included three phases, including: 1) pre-assessment, 2) data collection and
analysis, and 3) priority setting and action planning. An overarching theme in our needs assessment
framework was stakeholder involvement. Stakeholder input, especially from parents/families of CYSHN,
was gathered and utilized in decision-making, assessment, priority-setting, and action-planning.
Throughout the assessment process, data/information was gathered on the following:
•
•
•
•
•
Demographic makeup of the CYSHN population;
Where Minnesota is on meeting core outcomes for a well-functioning system for CYSHN;
Strengths, gaps, and duplication within the existing regional systems of care coordination;
Experiences with providers; and
Project infrastructure strengths and needs, including stakeholder engagement and partnerships
The following needs assessment activities were conducted:
1. Analysis of national survey data: In order to better understand the demographic makeup of
CYSHN in Minnesota and determine whether they are meeting the national core outcomes, an
analysis of the 2011/2012 National Survey of Children’s Health (NSCH) and the 2009/2010
National Survey for Children with Special Health Care needs (NS-CSHCN) was completed.
2. A web survey of the Stakeholder Workgroup: Wilder Research (Wilder) administered a webbased survey to members of the Stakeholder Workgroup to learn more about their expectations
for the Workgroup, as well as the overall grant. A survey link was sent to 26 unique email
addresses, provided to Wilder by MDH. A total of 16 stakeholders took the survey, for a
response rate of 62 percent; although n-sizes are smaller for those questions that stakeholders
skipped.
3. A web survey of the Parent Workgroup: Wilder administered a web-based survey to members
of the Parent Workgroup in order to learn more about their leadership experiences, and their
expectations for the Workgroup and overall grant. A survey link was sent to nine unique email
addresses, provided to Wilder by MDH. A total of five parents took the survey, for a response
rate of 56 percent; although n-sizes are smaller for those questions that parents skipped.
4. One-on-one interviews with diverse parents of children and youth with special health needs:
A total of 22 interviews were conducted with African American (n=5), Hispanic (n=6), Hmong
(n=6), and Somali (n=5) families in their primary language. Interviews were conducted by parent
advocates from the PACER Center. The Project Leadership Team collaborated on the data
collection instrument, and parent advocates provided guidance on the questions. PACER staff
were also briefed by Wilder on how to conduct a social science interview. A PACER staff member
sent completed, de-identified forms back to Wilder for analysis.
5. Gaps Analysis survey: Wilder conducted a Gaps Analysis study, commissioned by the Minnesota
Department of Human Services, to gather information about Minnesota’s publicly-funded
home- and community-based service systems and the continuum of mental health services. The
survey focused on service availability and use, the quality of services, as well as service gaps.
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MINNESOTA STATE PLAN
CYSHN are included in this study and were identified as youth, ages 0-17, living with mental
health conditions and/or disabilities. Ninety-eight caregivers of CYSHN responded to the online
Gaps Analysis survey. Caregivers and their children were identified by Minnesota Health Care
Program enrollment records and consumer advocacy organizations.
6. Care Coordination Systems Mapping: The MDH CYSHN Program partnered with Family Voices of
Minnesota to conduct systems mapping to learn about what is occurring across Minnesota in
regards to care coordination for children and youth with special health needs and their families.
A combined total of 89 stakeholders gathered in the five regions to complete the systems
mapping.
Prevalence of CYSHN
The 2011-2012 NSCH estimated there are 236,953 children and youth with special health care needs
(CYSHN) birth to age 18 years in Minnesota, which is approximately 18.5% of the state’s population
under the age of 18 (n = 1,277,521). Minnesota’s prevalence of CYSHN is slightly lower than the national
rate, which is 19.8%. In Minnesota, the age group with the most children with special health needs is
that between the ages of 12 through 17 years old, with 28.9% of children having a special health care
need. This is followed by 15.6% of those ages 6 through 11 years old, and 11.6% of those 0 through 5
years old. Male children have a higher prevalence of special health care needs than female children. In
Minnesota, 21.4% of males aged birth to 18 years had special health care needs, compared to 15.6% of
females. Figure 1 shows the prevalence of children with special health care needs by race and ethnicity.
The highest prevalence is in White, non-Hispanic children, where 19.9% have a special health need,
followed by those who identified as Hispanic (regardless of race) at 19.4%. Those who were black, nonHispanic had a prevalence of 18.4%. Those who identify as being from multiple races and who are nonHispanic have the lowest prevalence at 12.1%. It is important to note that the sample sizes used to
gather the racial/ethnic data are small, so the indicators for some races should be interpreted with
caution.1
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MINNESOTA STATE PLAN
CYSHN experience a wide range of disparities compared to other children. Figure 2 shows some
disparities in the CYSHN population versus the non-CYSHN population. The CYSHN group has higher
prevalence of children who are overweight/obese, higher percentages of parents who usually or always
feel stress due to parenting, higher prevalence of someone in the household who smokes tobacco, and
are more likely to have experienced two or more adverse family experiences. CYSHN are less likely to
receive care in a medical home and are less likely to live with mothers and fathers who are in excellent
or very good health.1
Core Outcomes for a Well-Functioning System for CYSHN
According to the 2009/2010 NS-CSHCN, about 1 in 5 Minnesota CYSHN (20.2%) receive care in a wellfunctioning system, which means they are served by systems of care that meet all age-relevant core
outcomes.2 The Health Resources and Services Administration’s (HRSA) Maternal and Child Health
Bureau (MCHB) has identified six national core outcomes to promote family-centered, communitybased, coordinated care for CYSHN, including:
1. Families of CYSHN partner in decision making at all levels and are satisfied with the services
they receive;
2. CYSHN receive coordinated, ongoing, comprehensive care within a medical home;
3. Families of CYSHN have adequate private and/or public insurance to pay for the services they
need;
4. Children are screened early and continuously for special health care needs;
5. Community-based services for CYSHN are organized so families can use them easily;
6. Youth with special health care needs receive the services necessary to make transitions to all
aspects of adult life, including adult health care, work, and independence.
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MINNESOTA STATE PLAN
Figure 3 shows where Minnesota ranks in meeting these core outcome indicators in relation to national
data, as measured by the 2011/2012 NSCH and the 2009/2010 NS-CSHCN.
Families Partner in Shared Decision-Making
For families with a child with a special health need, shared decision-making involves health care
providers communicating in a manner that is respectful of and responsive to families’ preferences and
ensures that families’ values guide clinical decisions about treatment approaches and options. Shared
Decision making helps families of children or youth with a special health need understand the
importance of their values and preferences, enabling families to make the decisions they believe best
for their child.
The Shared Decision Making core outcome is evaluated using a series of questions, and a family of a
CYSHN meets the outcome when the family answers that his/her child receives all the following
components of Shared Decision Making:
1.
2.
3.
4.
Child’s doctors discuss range of health care / treatment options;
Child’s doctors encourage family to ask questions or raise concerns;
Child’s doctors make it easy for family to ask questions or raise concerns; and,
Child’s doctors respect parent’s treatment choices.
Figure 4 shows how Minnesota ranks, relative to the national average, for the percent of families who
always partner in Shared Decision Making, as measured by the 2009/2010 NS-CSHCN.2 As the figure
reflects, many Minnesota families report always meeting the components of Shared Decision Making.
However, opportunity remains for improved family-provider communication across all components. For
example, despite the documented importance of respectful family-provider communication to
successful helath outcomes, nationally, over one third of parents do not feel that their child’s provider
always respects their treatment decision. Although Minnesota families reported slightly higher on this
component than the National average, almost 1 in 3 Minnesota parents do not believe their treatment
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MINNESOTA STATE PLAN
decisions are always respected by their child’s health provider. Similarly, although Minnesota ranks
slightly higher than the national average for discussions with child’s providers about range of treatment
options, nearly one third of Minnesota parents report that their child’s providers did not discuss a range
of health care or treatment options for their CYSHN. Finally, while the majority of Minnesota families
report that their child’s provider always encourages questions and makes it easy to voice concerns,
opportunity for increased family engagement in discussing their child.2
Receive Comprehensive Care within a Medical Home
There has been significant work in Minnesota to implement the medical home concept through the
Minnesota Health Reform and statewide Health Care Homes (HCH) initiatives. However, there are a
number of opportunities for improvement in providing quality integrated, family-centered, coordinated
care to CYSHN and their families. The medical home outcome is evaluated using a series of questions,
and CYSHN meet the outcome when the survey respondent answers that his/her child receives all the
following components of a medical home:
5.
6.
7.
8.
9.
Has a usual source (or sources) for both sick and well care;
Has at least one personal doctor or nurse;
Has no problems obtaining referrals when needed;
Receives family-centered care; and
Receives effective care coordination.
As shown in Figure 5 below, two medical home components with the most opportunity for growth are
related to receiving referrals and receiving effective care coordination. Around 45% of families reported
that they received effective care coordination. Only around 27% of those needing referrals had no
problems obtaining them.1
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MINNESOTA STATE PLAN
When it comes to receiving effective care coordination, NS-CSHCN data show that some groups are
more likely than others to report satisfaction with coordination services and supports. Those with higher
incomes (400% and greater than federal poverty level) are more likely to report receiving effective care
coordination than those with incomes below the federal poverty level. Hispanic and Black (non-Hispanic)
populations report lower levels of satisfaction with care coordination than White (non-Hispanic) or
other racial/ethnic groups.2
Consistent and Adequate Insurance
Healthcare for Minnesota’s CYSHN population is funded through both public and private insurance.
Public health care programs include: Medical Assistance (MA – Medicaid), MinnesotaCare, and home
and community-based waiver programs. These programs can pay for health care costs if the child does
not have insurance; has a disability/ chronic condition and needs help paying for care/services to stay in
the home; needs help paying for care in a nursing home, hospital, or other medical facility; and/or has
other insurance, but needs help paying the premiums, deductibles, and copays, or needs services not
covered. Children with disabilities on MA can opt out of the managed care plans and be served through
fee-for-service arrangements.
In the 2011/12 NSCH, 9% of CYSHN were uninsured at some point in the previous year and 32% found
their current insurance inadequate. Figure 6 shows the comparison between families with CYSHN and
without-CYSHN on reporting of adequacy of insurance. Fewer families with CYSHN found their insurance
to be adequate, as compared to families without CYSHN. Another major comparison between the two
populations was on out-of-pocket costs – while more families with CYSHN did not have to pay out-ofpocket costs, those that did were more likely to find those costs unreasonable.
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MINNESOTA STATE PLAN
Insurance status for CYSHN differs greatly by race and ethnicity, family income, family education level,
and household language. In the 2009/10 NS-CSHCN, the percentage of Hispanic CYSHN without health
insurance sometime in the last year was over three times greater than White CYSHN (28% vs. 9%).
Figure 7 illustrates how CYSHN whose families have lower incomes are much less likely to have
consistent insurance than CYSHN in higher-income families.2
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MINNESOTA STATE PLAN
Early and Continuous Screening
Around 75% of CYSHN in Minnesota meet the core outcome of being screened early and continuously
for special health care needs. This outcome is measured based upon whether the child both has
received a well-child check-up and a preventive dental visit within the past 12 months. According to the
2009/2010 NS-CSHCN, around 87% of Minnesotan CYSHN have received a well-child check-up and 86.6%
a preventive dental visit (see Figure 8).
Easy Access to Services
Nearly 70% of Minnesotan families of CYSHN report being able to easily access community-based
services for their child in the last 12 months. This outcome is measured by whether families experienced
difficulties, delays, and/or frustrations in accessing care. There are six different types of difficulties
measured under this outcome, including: eligibility for services, availability of services, waiting lists for
getting appointments, cost issues, trouble obtaining needed information on services, and other
difficulties. As shown in Figure 9, the highest percentage of families experienced difficulties or delays
due to waiting lists or backlogs preventing them from being able to get appointments. Cost-related
issues were the second largest difficulty experienced. In addition to the difficulties/delays experienced
by families, this core outcome also measures the level of frustration experienced by parents/caregivers
when trying to get services for their CYSHN. According to the 2009/2010 NS-CSHCN, around 27% of
reported being frustrated sometimes, and 6% were frustrated usually or always.
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MINNESOTA STATE PLAN
Receive Needed Transition Services
Figure 10 provides state and national data on the percentage of youth with special health care needs
(YSHCN) who meet the transition indicator components. The component met at the highest rate (73.3%
in Minnesota) is that doctors encouraged the youth to take age-appropriate responsibility for his/her
health care needs. The component with the most room for growth is that providers discussed changing
insurance needs with the family; only around 26% of Minnesota families of YSHCN reported meeting
that component. Of the 74% of families of that have not yet discussed insurance needs, around 38%
expressed that the discussion is needed and would be helpful.2
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MINNESOTA STATE PLAN
Receiving Effective Care Coordination
Definition of Care Coordination
For the purposes of this project, the following definition of care coordination is being used:
Care coordination for children and youth with special health needs (CYSHN) is a familycentered, relationship-based, assessment-driven, team-based, and interdisciplinary activity
designed to meet the needs of CYSHN, while enhancing the caregiving capabilities of families.
Care coordination takes into consideration a continuum of child/family needs – including:
health, medical, education, social, early intervention, nutrition, mental/behavioral/emotional
health, community partnerships, and financial – to achieve optimal health and wellness.
This definition was created based upon consensus following a thorough literature review. In particular,
Minnesota’s definition is based on the care coordination definitions of Antonelli et al. (2009), Turchi and
Mann (2013), and the National Center for Medical Home Implementation.3,4,5
Systems Mapping of Care Coordination Occurring in for Minnesota CYSHN and Families
CYSHN and their families often need a wide variety of medical, psychosocial, educational, and support
services. Without effective care coordination, CYSHN can receive fragmented or duplicative services –
ultimately receiving less than optimal care and causing unnecessary stress and frustration for families. In
order to improve care coordination for CYSHN, stakeholders need to have a better understanding of
current cross-system care coordination efforts. In Minnesota, a systems mapping process, which
gathered input from stakeholders from five regions across the state, was undertaken to assess
strengths, challenges, gaps, and redundancies inherent in providing and receiving care coordination
amongst CYSHN and their families. The following section summarizes the findings of the systems
mapping activities conducted during 2015, a more detailed report of the findings will be posted to the
Minnesota CYSHN Systems Integration Project website.
A combined total of 89 stakeholders gathered in the five regions to complete the systems mapping. In
Figure 11, you can see the locations where the systems mapping occurred, which included the Northeast
(Duluth, MN), Northwest (Bemidji, MN), South Central/Southwest (Willmar, MN), and Twins Cities
metropolitan areas of the state. Two mapping sessions were conducted in the Twin Cities, including one
in the East Metro and one in the West.
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MINNESOTA STATE PLAN
Methods
A mixed methods approach was used to conduct systems mapping around the coordination of care for
CYSHN in the state. The approach utilized a number of tools, including Systems Support Mapping and
Circle of Care Framework Modeling, to identify the types of care coordinators and their roles in each
region, determine the communications/collaborations occurring, and ascertain strengths, challenges,
and opportunities in the system of care coordination for CYSHN and their families.
Findings
Strengths and Challenges in Providing Care Coordination
In conducting systems mapping, it was important to begin by developing an understanding of what
works well and what needs improvement in providing care coordination. The main themes on how care
coordination works in Minnesota and how it could improve are listed below.
“Care Coordination of CYSHN in Minnesota Currently Works Because…“
•
•
•
•
•
•
•
•
Care coordinators are passionate and dedicated to helping families
A lot of focus has been placed on early childhood
There is strong networking and collaboration between care coordinators
More care coordinators are being employed by primary care and specialty care
Certified health care homes have care coordinators
There is a focus on developing relationships and a sense of community
Care coordinators are knowledgeable of the needs of families
Care coordinators do a good job linking families with resources
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MINNESOTA STATE PLAN
•
There are a lot of resources available (more applicable to Metro)
“Care Coordination of CYSHN in Minnesota Would be Better if…”
•
•
•
•
•
•
•
•
Parents would not have to coordinate all the care coordinators
Coordinators would communicate more with each other and not rely on the family to do the
back and forth
There were more sustainable funding for care coordination (and the funding better met the
needs of children and families)
A universal Release of Information was available
Data sharing laws and practices didn’t get in the way
Electronic health records would communicate between each other
There was more collaboration between schools and health care
There were more resources available (more applicable to out-state regions)
Systems Support Mapping
The process was organized around a structured systems-thinking data collection tool, System Support
Maps. To introduce the process, a family member from each region prepared and presented on their
own individual map. Next, all participants were walked through the process of creating their own
individual systems support map. They were asked to: 1) articulate their role and primary responsibilities
within the system; 2) delineate what they need to meet these responsibilities; 3) reflect on personal
strengths, knowledge, and/or external resources that have and have not supported them in fulfilling
their needs; and 4) identify their top three wishes to address unmet needs or help meet their
responsibilities. A visual representation of a systems support map is included below in Figure 12. Each
participant created their own map, and the information from the maps was aggregated using Circle of
Care Modeling to create a “picture” of care coordination in each region. This summary will primarily
focus on the primary responsibilities, as reported by coordinators – other components of the systems
support mapping process and regional systems maps will be detailed in the final report.
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MINNESOTA STATE PLAN
Roles
Participants represented the following areas: parents of CYSHN, education, Head Start/Early Head Start,
Interagency Early Intervention Committees, family organizations, health plans, home care, local public
health, mental health, primary care, specialty care, school nurses, and state agency staff. The following
criteria were used in recruiting participants:
•
•
•
•
First-hand experience or knowledge of care coordination/service coordination/case
management for CYSHN;
Interest in improving the state-wide system of care for CYSHN;
Ability to represent more than your individual experience and speak to the broader care
coordination needs of families with CYSHN.
Balanced representation from families and from different programs/services (e.g., local
public health, health care, education, social services, mental health, etc.).
A breakdown of the roles/organizations of participants by region is included below in Table 2. As you can
see, there were only a few roles that were represented within all five regions – parents, primary care,
specialty care, local public health, and MDH-Health Care Homes. Primary care had the largest
percentage of participants at 25%, this was followed by parents, who were 18% of the participants.
Northeast
Northwest
Southwest/
South Central
East Twin
Cities Metro
West Metro
Total
Total
Home Care
Interagency Early Intervention Committee
School Nurse
MN DHS
Family Organization
Mental Health
County Human Services
Head Start / Early Head Start
Education (District & State)
MDH – Health Care Homes
Health Plan
Specialty Care
Local Public Health
Parents
Primary Care
Table 1: Care Coordination Systems Mapping Participants, by Role and Region
2
5
5
3
2
5
1
3
2
3
1
1
0
0
0
1
1
1
1
1
0
1
1
1
1
0
1
1
0
0
0
0
0
0
0
0
0
1
0
0
1
0
0
0
0
14
16
16
8
3
1
1
2
1
1
0
0
0
1
1
0
0
1
20
6
22
25%
3
16
18%
3
10
11%
3
9%
10%
3
5
6%
1
5
6%
3
4
4%
0
3
3%
0
2
2%
1
2
2%
0
1
1%
0
1
1%
0
1
1%
0
1
1%
0
1
1%
23
89
Primary Responsibilities
Participants were asked to identify their top five responsibilities when it comes to providing care
coordination for CYSHN. It is important to understand these responsibilities because they can help point
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MINNESOTA STATE PLAN
toward the areas that care coordinators spend most of their time and effort. The responsibilities
reported by the participants were grouped into 14 different categories. These categories of
responsibilities are included in Figure 13, and are ranked based upon what is most reported by care
coordinators. The most reported responsibility of care coordinators was providing education and
resources. The least reported responsibilities was facilitating, supporting, and assisting in managing
transitions, which included transitions between health care settings and transition to adulthood.
Figure 14 provides a breakdown of the primary responsibilities reported by all participants, listed by
region. The most reported responsibility in the Northwest and West Metro regions is arranging for,
setting up, coordinating, and tracking tests, referrals and treatment. The most reported in the Northeast
and Southwest regions is providing education and resources. The East Metro had relationship building as
their most reported responsibility in providing care coordination.
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Action Planning
As a final step in the care coordination mapping process, the stakeholders participated in brainstorming
action steps that could be taken to improve care coordination. They were asked to think of four levels of
action planning, including:
1.
2.
3.
4.
Things they can do right away, on their own, in the next week to month
Things they can take back to their organization/team to work on over the next 3 to 12 months
Things they can collaborate with someone else in their region over the next 6 to 12 months
Things that can be worked on at the broader state level over the next 1 to 2 years
For the first three levels, participants completed a worksheet in which they listed out action steps. Some
common themes and examples from these levels are included in Table 3.
Table 2: Action Planning Themes and Examples
Action Planning Theme
Can be completed within
1 month, alone
Education, providing
training, and sharing
information and
resources
• Bring back information
from today’s meeting
to care coordination
team at organization
• Identify care
coordination learnings
and success stories
that can be shared
broadly
• Provide education on
care coordination
• Read more about Fetal
Alcohol Spectrum
Disorders and Autism
Spectrum Disorders
• Set up meetings with
parents
• Connect with those
here interested and
share information
about Parent-toParent Peer Support,
Family-Centered Care,
and Family Advisory
Committees
Involving families,
learning about their
needs, and promoting
family-centered care
Improving internal
clinic/agency/organizatio
n care coordination
processes
• Communicate with
peers and
administration
• Continue to work on
standard order sets for
common care delivery,
reducing
Can be completed within
3-12 months, within
organization/team
• Taking back additional
resources that are
available learned
about at this meeting
• Follow-up with
management+-in my
own agency on the
meeting outcomes
• Share what I learned
today on family
experiences and what
they go through
Can be completed within
6-12 months, with others
in region
• Integrating trainings
for care coordinators
from different areas
(i.e., schools, primary
care)
• Create and maintain a
Parent/Family Advisory
Committee
• Organize a
workshop/training this
Fall 2015 on parent
leadership and
partnering with
providers
• Work with parent
advocates to bring
awareness to care
coordinators about
their organization
• Connect with those
interested to share
information about
Parent-to-Parent,
Family-Centered Care,
and starting and
maintaining family
advisory committees
• Share ideas within our
CHB education/update
the other nurses/staff
about the information
to improve services
• Collaborate with
health coach to
• Integration of
pediatrics in clinics
• Build in time for chart
reviews before
appointments
• Work on standardizing
process for transition
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MINNESOTA STATE PLAN
Action Planning Theme
Improving
communication and
collaboration with others
Can be completed within
1 month, alone
•
•
•
•
•
Improving resource
directories and databases
•
•
•
Further implementing
systems support mapping
with families, practices,
and organizations
•
Promoting shared care
plans
•
•
administrative
burdens. Share order
sets with referring
doctors and hospitals
to add their EMR
Make visits to
collaborating partners
and increase
awareness, find out
what is working
Talk to county social
services to attempt to
increase involvement
Make follow-up
calls/emails to
contacts made today
in order to support
and encourage
relationship building
Initiate conversation
with Public Health
Nurses
Start developing more
relationships with
family organizations
Determine who
community resource
contacts are
Find more resources in
the community that
will be helpful for my
patients other than the
sources in my agency
Contact the United
Way-211 to discuss
improvement of
resource listing
Share my map with
family and friends
Show staff the systems
support mapping tool
so they can use with
families
Ask for shared care
plan
Can be completed within
3-12 months, within
organization/team
to adult medicine
providers and
communicating and
sharing resources
Can be completed within
6-12 months, with others
in region
understand how to
effectively do my job
and learn resources
• Increase
communication with
schools
• Increase
communication with
community entities
• Work with Head Start
to build understanding
of school system
• Connecting with
appropriate contacts
at schools to increase
communication for
mutual patients
• Brainstorm and
planning for early,
childhood services
coordination and
transition mapping
• Collaborate with family
organizations
• Build working
relationships with care
coordinators in
specialty care settings
• Set up resource list for
parent-to-parent
contact
• Give pediatric nurses
direct phone numbers
of resources
• Develop spreadsheet
with community
resources for parents
• Continue
conversations about
resource development
• Use care mapping to
define care
coordination model
• Use the system
support mapping
process with our Board
• Continue to work on
our Care Plan to
standardize the
information
highlighted today and
make more
patient/family
friendly/useful
• Coordinate quarterly
resource meeting in
Fargo-Moorhead area
• Share our maps as
parents with PACT for
Families and how it
may be useful as a
collaborative
• Creation and
communication of
inclusive care plans
that can be easily
communicated when
needed
21
MINNESOTA STATE PLAN
Action Planning Theme
Can be completed within
1 month, alone
Promoting care
coordination and better
defining roles of care
coordinators (both at
clinic/organization and at
a systems level)
• Creating a clearer
message around how
we can support
families through care
coordination
• Spread the word
regarding the
importance of care
coordination
• Identify more patients
that may benefit from
care coordination
Can be completed within
3-12 months, within
organization/team
• Work to have one care
plan – especially within
a system that shared
an electronic health
record
• Reach out to more
community resources
to make them aware
of care coordination
services at
organization
• Ask public health nurse
consultants in other
regions if we can
explore the role of
care coordination and
public health nursing
Can be completed within
6-12 months, with others
in region
• Work with Family
Home Visiting nurses
to better understand
their roles
• Work work Early
Intervention / Birth-toThree workers to
better understand
their roles
• Continue to talk with
insurance providers to
explore better funding
for providing care
coordination
Finally, participants were asked to identify state-level action steps that could be taken to improve care
coordination for families of CYSHN. They then placed these action steps on an action priority matrix
based on their perceptions of the potential level of impact and feasibility of the items. A summary
matrix of is included in Figure 15. Items that will be focused on in the CYSHN Systems Integration Project
have been bolded and are in red font. Additional items that relate to current work of the MDH CYSHN
program, but may not apply to the grant project, have been included in bold black font.
22
MINNESOTA STATE PLAN
Care Coordination and Families’ Knowledge of Services and Supports
The Gaps Analysis survey and PACER interviews looked at services – both used and needed – for CYSHN
in order to establish a baseline picture of what they and their families experience in the system. As
previously stated, a total of 22 interviews were conducted with a diverse group of parents with CYSHN.
A total of 98 caregivers of CYSHN responded to the Gaps Analysis survey. The percentages below do not
necessary reflect these totals as a result of respondents skipping questions as a result of skip patterns
built into the surveys or because of missing responses.
23
MINNESOTA STATE PLAN
•
In the past 12 months, parents were most likely to receive services in a health care setting, as
opposed to through their home or communities. As found in the Gaps survey, at least half of
clients reported receiving the following services in the past 12 months: doctor or primary care
appointments (96%), case management or care coordination (64%), therapy (OT/PT) (63%),
medication management (54%), and mental health counseling (50%). Of the services
respondents and their children had received, they were least likely to include day treatment for
mental health (18%), personal support or companion services (15%), a home health aide or
visiting nurse (14%), or financial assistance (13%).
•
Parents across all surveys indicated that their children have access to a regular provider or
clinic for routine or preventative care, as well as care for when their children are sick. Most
parents in the PACER interviews (95%) and the Gaps survey (97%) said that their child has a
place to go for routine care to stay healthy, and this is most often a clinic or doctor’s office
(86%). Similarly, 88 percent of parents have a place to go for help when their child is sick, which
is most often a doctor’s office or clinic (93%).
•
Parents were easily able to access their primary care appointments, whereas other services
were more difficult to access. Of the caregivers in the Gaps survey who had gone to a primary
care appointment in the past year, 64 percent said this was a very easy service to access – the
highest of any service. Of the other services that parents received, they had the most difficulty
accessing respite care (100%), assistive technology, specialized equipment, and home
modifications (60%), Personal Care Attendants (PCAs) (48%), medication management (44%),
and skills group and/or skills training (40%).
•
Of the services that parents felt they needed, but had not received, they had the most
difficulty with services that are typically received in the community or at home. Three in ten
(29%) parents said they felt they needed respite care, but were unable to get it; 22 percent said
the same about caregiver or family training; and 18% each had a difficult time accessing PCAs
and skills groups and/or skills training. The most common reasons that parents were unable to
access these services were that the services were not located near them, they lacked the time
needed to access services or the process was too confusing, or they could not afford to access
the service (i.e., high co-pays, no sliding fee scale).
•
Although many parents utilize care coordination or case management services, few parents
felt it was the most valuable service. Nearly two-thirds of parents reported getting these
services in the past 12 months, with any additional 4 percent who needed them, but were
unable to get them. Of those parents and children receiving these services only 2 percent felt it
was the most helpful service, while 27 percent felt these services were “not helpful.”
Experiences with Health Care Providers
Despite some difficulty in accessing services, caregivers of children and youth with special health needs
had very positive experiences with their primary care providers, which may not be surprising given the
frequency and ease with which they access this service.
•
The majority of parents felt that their health care providers spent enough time with them. In
both the Gaps and PACER surveys, the majority of parents felt that their doctor had spent
enough time with them and their child (PACER: 68% always or usually; Gaps Analysis: 61%
always or almost always).
24
MINNESOTA STATE PLAN
•
Parents generally feel that they are able to engage with their health care providers and that
their input is valued: In the Gaps survey, over half of parents (56%) said that their health care
providers “always or almost always” encourage them to ask questions. Similarly, half of parents
in the PACER interviews felt that their input was “always” valued, while another third said that
their input was “usually” valued. There were some slight differences in terms of race on this
question; Hispanic respondents were more likely than other groups to say that their input was
“always” valued (5 respondents), while Somali parents were the least likely to say their input
was always valued (1 respondent).
•
Overall, parents felt that their health care providers were sensitive to their cultural values. In
the Gaps survey, 61 percent of parents said their health care providers are “always or almost
always” sensitive to their family’s values and customs; 34% felt this was “sometimes” the case.
Stakeholder Engagement and Partnerships
As previously stated, a total of 16 Stakeholder Workgroup memebers and five Parent Workgroup
members completed online surveys. The percentages below do not necessary reflect these totals as a
result of respondents skipping questions as a result of skip patterns built into the surveys or because of
missing responses.
•
Stakeholders and parents want to share their expertise to make impactful system
improvements for CYSHN and their families. In an open-ended question, stakeholders and
parents gave a variety of reasons for becoming involved in the grant. One-third of stakeholders
said they wanted to help children and youth with special health needs and their families; and
over one-quarter (27%) said they wanted to help create more integrated systems of care. Both
groups expressed the desire to share their expertise.
I care very much about services for families of children and youth with special
health needs and want to see improvement. I think this project has a great
opportunity to improve services. – Stakeholder
I am dedicated to building a strong parent network for families of CYSHN and hope
to bring more family voices to the table in design, planning, and evaluation of all
programs and policies that affect CYSHN. – Parent
•
While respondents are passionate about creating better outcomes for CYSHN and their
families, they expressed skepticism that the project will bring change to the health care
system. When speaking about their expectations for the grant, several stakeholders felt some
skepticism about the ability of the Workgroup to affect actual change. They said that, while it is
easy to define a problem, and maybe even a solution, it is much harder to actually put those
solutions in to effect. Stakeholders expressed a strong desire to go the extra mile to implement
new strategies that will make the system easier to navigate for CYSHN and their families.
We have identified a lot of needs and opportunities. I think the workgroup needs to
go a step further and assist with or help identify ways to actually intervene and
implement changes. It feels like we have collected a lot of the "whys" and identified
strategies. I'd like to see the strategies put into action. – Stakeholder
25
MINNESOTA STATE PLAN
•
Stakeholders feel that time, money, and overlapping initiatives all pose challenges to the
success of the project. Like many other grant initiatives, respondents feel that the main
challenges for the Systems Integration Grant are logistical – a lack of time and money to
implement the project, as well as having to navigate a lot of systems and bureaucracy. In
addition, several respondents felt that it was challenging to balance the work of this grant with
that of other initiatives happening nationally. A couple of respondents mentioned that there
seems to be overlapping work, and it would be more efficient to marry similar efforts.
There is a lot of similar work happening nationally. It will be challenging to balance
the momentum of this group independently with the need to learn from the work of
others. A primary challenge may be moving the ideas and expectations of
stakeholders to a level of political influence that will actually make a difference. –
Stakeholder
Summary and Recommendations
As stated above, approximately one in five Minnesota children and youth with special health care needs
(CYSHN) (20.2%) receive care in a well-functioning system, which means they are served by systems of
care that meet all age-relevant core outcomes (2009/2010 NS-CSHCN). The needs assessment process
allowed us to further explore needs and opportunities on ways to improve the system of care for
CYSHN. Based upon our findings, the following recommendations have been identified as areas of focus
in this project:
•
Provide education, training opportunities, and resources to families and youth to increase
awareness of medical home and care coordination
•
Bring Together Care Coordinators in Regional Collaboratives to Improve Communication and
Collaboration
•
Promote Use of Shared Care Plans and Care Coordination Best Practices to Improve Care
Coordination Services
•
Include parents/family members in all levels of project development and implementation to
increase family partnerships
•
Partner with other state and national initiatives to leverage potential impact of project
To achieve these recommendations, we developed three strategic goals, as discussed below. These
goals center around the attainment of comprehensive, coordinated, and integrated state and
community systems of service for CYSHN through increased stakeholder and parent engagement,
improved care coordination, and efficiently accessible, relevant information for CYSHN. To this end, we
identified key activities, including strengthening the role of parent and family leadership within systems
of care for CYSHN, developing clinic-based shared care plan capacity, and integrating a comprehensive
“CYSHN Navigator” (shared resource) into an online, web-based portal to facilitate access to services for
CYSHN. Each of these activities is discussed in greater detail in the following section.
26
MINNESOTA STATE PLAN
Strategic Goals and Objectives
As stated, the main aim of the Minnesota CYSHN Systems Integration Grant is to achieve a
comprehensive, coordinated, and integrated state and community system of services and supports for
CYSHN through:
1. Increasing CYSHN family/stakeholder engagement and partnerships within statewide initiatives.
2. Increasing cross-systems integration through providing more effective care coordination
services for CYSHN.
3. Increasing the knowledge of services and supports available through the development of a
“shared resource” for providers and families of CYSHN.
Minnesota CYSHN Systems Integration Project Work Plan
Goal 1: Increase family/stakeholder engagement and partnerships within statewide
initiatives
Outcomes:
1) Increase # of CYSHN whose families are partners in shared decision-making at all levels
2) # of parents / families participating on committees (in initiatives)
Objective 1: By October 2017, increase parent and family partnerships in systems integration work
through increased participation on local and statewide advisory committees and councils.
Strategies:
• Continue to strengthen the role of the CYSHN Parent Workgroup in providing guidance to
MDH CYSHN Program
• Expand opportunities for parents of CYSHN to serve on agency-level advisory committees,
councils, and workgroups
• Communicate council/committee opportunities to parents of CYSHN
• Assist local and statewide parent groups/family organizations in the promotion of their
leadership development programs in an effort to reach a broad group of diverse parents
• Work with other state agencies to expand parent partnerships and engagement
• Conduct training for state agency staff on methods of developing, implementing and
evaluating family workgroups and councils utilizing best practice family-centered/personcentered principles and practices
• Evaluate effectiveness and benefits of increased parent engagement and partnerships in
systems integration and CYSHN program work
Deliverables:
• Education materials for agency staff
• Communications plan
27
MINNESOTA STATE PLAN
Goal 2: Increase cross-systems integration by providing effective care coordination services
Outcomes:
1) Increase # of CYSHN whose families report receiving integrated care through a patient/familycentered medical home
2) Increase # of CYSHN whose families report receiving effective care coordination
Relevant Systems Integration Academy Aim Statements:
• Cross-Systems Care Coordination Strategy: By October 2017, 20% of targeted CYSHN have a shared
care plan.
• Integration Strategy: By October 2017, an agency-level written agreement will be developed
between two state-level entities to improve the timely receipt of information following the initial
referral of a CYSHN by a medical home.
Objective 2a: By October 2017, increase knowledge, implementation, and effectiveness of care
coordination through a Learning Community / Pilot Project on shared care plans with a minimum of
four pediatric primary care clinics (health care homes). (CROSS-SYSTEMS CARE COORDINATION AIM)
Strategies:
• Utilize the Institute for Healthcare Improvement’s Breakthrough Series – Collaborative Model
for Achieving Breakthrough Improvement
• Curriculum designed around Lucille Packard “Achieving a Shared Plan of Care with Children
and Youth with Special Health Care Needs”
• Complete a RFA for clinics to participate on Learning Community/Pilot Project
• Clinics will collaborate with community-based providers or agencies to better coordinate care
through the use of shared care plan
• Clinic teams will include (at a minimum): 2 family members, 1 care coordinator, 1 physician,
and 1 community-based service provider representative
• Each clinic will select a minimum of 10 families to work with in developing shared care plans
• Perform evaluation of learning community
Deliverables:
• Learning Community Curriculum
• Evaluation Report
• Sustainable implementation of family-centered shared care plans in primary care clinics
Objective 2b: By October 2017, develop educational materials/trainings for parents and stakeholders
of CYSHN, including tools for those whose first language is not English.
Strategies:
• Search and review of currently available resources
• Engage and partner with CYSHN Parent Workgroup and Minnesota Family Organizations in the
development of trainings/educational materials
• Decide key messages for trainings, include information for families on their rights regarding
their child’s health care and what they can expect from a health care provider
• Develop print, on-line and other materials
• Develop culturally-appropriate tools and materials
• Develop a communication plan for outreach and distribution
• Evaluate educational materials/trainings
28
MINNESOTA STATE PLAN
Deliverables:
• Educational Materials
• Outreach / Distribution Plan
Objective 2c: By September 2016, develop a training series geared toward youth with special health
needs on transitioning from pediatric to adult health care.
Strategies:
• Engage and partner with PACER Center’s Youth Boards to design and develop training series
• Develop a communication plan for outreach and distribution
• Develop materials based on best practices of the National Alliance to Advance Adolescent
Health's Got Transition Initiative (http://www.gottransition.org)and PACER Center’s National
Center on Transition and Employment (http://www.pacer.org/transition/)
• Evaluate youth training
Deliverables:
• 2-4 short videos to be posted on MDH and PACER Center websites
• Outreach / Distribution Plan
Objective 2d: By October 2017, develop a written agreement (or revise current agreement) to improve
timely receipt of information following referrals of CYSHN. (INTEGRATION AIM)
Strategies:
• Compile list of written agreements currently in place between state agencies that focus on
care coordination, referrals, follow-up, and data sharing
• Conduct a meta-analysis of the agreements to evaluate their strengths, weaknesses,
effectiveness, and alignment with aim
• Develop new agency-level agreement and/or revise current agreement based upon needs
determined in meta-analysis
• Explore and problem solve around data sharing / privacy issues and barriers at local and state
levels, determine true and untrue assumptions around data sharing and privacy
• Educate stakeholders on current agreements in place, new agreements, and on privacy/data
sharing issues
Deliverables:
• Written agreement
Goal 3: Increase knowledge of services and supports through development of CYSHN
Navigator (shared resource)
Outcome: Increase # of CYSHN whose families report being able to easily access community-based
services
Relevant Systems Integration Academy Aim Statement:
• Shared Resource Strategy: By October 2017, 50% of families and medical home providers of
CYSHN contacting a shared resource (SR) for a needed specialist, support or service, will obtain a
needed specialist, support, or service.
Objective 3a: By January 2016, an on-line and person to person phone-line CYSHN Navigator (shared
resource) will be available for feedback from CYSHN, their families and providers.
29
MINNESOTA STATE PLAN
Strategies:
• Mock-up of CYSHN section project staff inputs and resources into the MN Help Director
• Convene a team of stakeholders including Parents of CYSHN through existing parent groups to
create and test the on-line navigator.
• Conduct parent focus groups to gather insight on usability and relevance of the mocked-up
Navigator site.
• Participate in the development of a Help Me Grow National model in Minnesota to assure the
voice of parents with CYSHN is included in the development and roll out.
Deliverables:
• Mock-up of CYSHN section project staff inputs and resources ultimately placed in the MN Help
Director.
Objective 3b: By August 2016, an on-line and person to person phone-line CYSHN Navigator resource
will be available for CYSHN, their families and providers by creating a new CYSHN Navigator into the
MN Help Network.
Strategies:
• Utilize parental and other stakeholder feedback to develop live MDH – CYSHN Navigator for
use by all MN CYSHN, families, and providers
• Collaborate with Minnesota’s Family-to-Family Health Information Center in the development
and implementation of the CYSHN Navigator
• Disseminate web address and availability to encourage widespread use of the Navigator.
• Evaluate parental satisfaction and usability of site
• Implement a satisfaction survey measure to gather feedback from users of the CYSHN
Navigator
• Develop work plan to implement changes to improve CYSHN Navigator where needed in
response to evaluation results
Deliverables:
• CYSHN Navigator Live
Objective 3c: By September 2016, integrate Parent-to-Parent Support as a component of the CYSHN
Navigator.
Strategies:
• Utilize parent organization parent leaders to connect those using the MN Help Network 1-800
Line to a trained parent who has a CYSHN, therein increasing educated demand for effective
health care home
• Ensure inclusion of racial, ethnic and condition diversity in parent-to-parent resource
• Develop work plan to implement changes to improve Shared Resource where needed in
response to evaluation results.
Deliverables:
• Workflow for linking families contacting the CYSHN Navigator with Parent-to-Parent Support
30
MINNESOTA STATE PLAN
Meaningful Stakeholder Engagement and Leadership
Structure
Stakeholder engagement is vital to the success of the Minnesota CYSHN Systems Integration Project.
Stakeholders include, but are not limited to:
•
•
•
•
•
•
•
Families of CYSHN
Community-based resources providers
Health care providers/professionals
Evaluation professionals (Wilder Research)
Family advocacy organization representatives
o Family Voices of Minnesota
o PACER Center
Professional organization staff
o Minnesota Chapter of the American Academy of Pediatrics
o Minnesota Academy of Family Physicians
State agency staff
o DHS: Medicaid, Children’s Mental Health, Disability Services
o MDH: Title V, CYSHN, Health Care Homes, Help Me Grow
o Minnesota Department of Education, Part C & Part B Special Education
Central to the development of an effective system of care for CYSHN is family involvement and
partnership. A leadership structure is in place for the CYSHN Systems Integration Project that includes
appropriate representation of a variety of stakeholders, especially including parents of CYSHN and
appropriate representation of racial/ethnic and geographic populations. In addition to monitoring
grant activities, a main goal of the leadership structure and plan is to increase the communication
between the various initiatives listed above in the needs assessment that directly or indirectly impact
the health and outcomes of CYSHN and their families. The leadership structure includes a project lead
team, A CYSHN Parent Workgroup, and a CYSHN Stakeholder Workgroup.
CYSHN Parent Workgroup
The CYSHN Parent Workgroup will be transitioned into a leadership and advisory group for the MNCSCCIP. The CYSHN Parent Workgroup will act as an advisory resource to the CYSHN Program at MDH,
and will provide meaningful input on the design, implementation, and evaluation of the project.
The CYSHN Parent Workgroup is comprised of eight parents/guardians who have a child with a special
health need. Members of the group represent rural and urban populations, and also diverse
populations. Members have experience with various special health needs, including, but not limited to:
fetal alcohol spectrum disorders, asthma, food allergies, Down syndrome, mental health needs, and
autism spectrum disorder. Members are chosen based on an application process, and reflect the
cultural, racial, linguistic, and geographic diversity of the populations of Minnesota.
The charge of the CYSHN Parent Workgroup in the Systems Integration Project is to provide a
parent/family perspective into all grant activities. This includes:
•
Serving as an advisory resource to administration and project staff.
31
MINNESOTA STATE PLAN
•
•
•
•
•
Identifying strengths, weaknesses, gaps, and areas of improvement in services and supports
available for CYSHN and their families.
Acting as a vehicle for meaningful communication between families of CYSHN and project staff.
Obtaining information and feedback from families on grant priorities and initiatives.
Actively participating in the development of strategies and identifying resources/support
necessary to implement strategies and achieve the goals and objectives.
Actively participating in the development of trainings and learning materials for parents,
providers, and other stakeholders.
The CYSHN Parent Workgroup will meet a minimum of every other month the duration of the project.
Parent workgroup members will be paid a stipend for their work on obtaining information and feedback
from parents of CYSHN, developing training materials, providing trainings to families and providers, and
CYSHN Stakeholder Workgroup
Another leadership group for the CYSHN Systems Integration Project is the CYSHN Stakeholder
Workgroup. By including key stakeholders in current systems integration and health reform initiatives,
the CYSHN Stakeholder Workgroup will help the CYSHN Program to better understand the different
projects and initiatives going on in the state, and will aid in getting the voice of CYSHN and their
families at the table in other health reform and systems projects and initiatives.
The charge of the CYSHN Stakeholder Workgroup is to provide strategic leadership and guide decisionmaking as we work to achieve a more coordinated system of services and supports for CYSHN. This
includes:
•
•
•
•
•
Advising on priorities, providing input on the development of strategies and identifying
resources/support necessary to implement strategies and achieve project goals and objectives.
Providing guidance on communications, CYSHN and family engagement, and culturally
appropriate outreach.
Discussing strategies for integration of services across systems.
Developing strategies to identify and share best practices, success stories and evidence of local
impact.
Leading discussions to identify approaches for sustainability of activities and alignment with
related efforts.
It is anticipated that the Stakeholder Workgroup will meet a minimum of quarterly throughout the
duration of the grant period. The Workgroup may establish short-term or ad hoc technical groups to
advise on specific aspects of its work, as needed.
Project Leadership Team
A Project Leadership Team that oversees the day-to-day activities and duties of the project has been
formed. Their responsibilities include:
•
•
•
•
Providing a strategic mission and vision for project
Maintaining and promoting partnerships across public and private sectors
Utilizing a quality improvement framework, and sharing lessons learned with key stakeholders,
partners, and families
Collecting and maintaining resources, such as contracts and staffing
32
MINNESOTA STATE PLAN
•
•
•
Coordinating with other groups and agencies
Collecting and routinely sharing system of care performance indicators with key stakeholders,
partners, and families
Participating on the NASHP Systems Integration Academy
The project leadership team is composed of the following:
•
•
•
•
•
•
•
•
Barb Dalbec – CYSHN Section Manager and Project Director, MDH
Sarah Cox – CYSHN Principal Planner and Project Coordinator, MDH
Sarah MapelLentz – Family Involvement Coordinator, MDH
Carolyn Allshouse – Executive Director, Family Voices of Minnesota
Wendy Ringer –Family-to-Family Health Information Center Coordinator, PACER Center
Michelle Gerrard – Evaluator, Wilder Research
Rebecca Schultz – Evaluator, Wilder Research
Stephanie Nelson-Dusek – Evaluator, Wilder Research
33
MINNESOTA STATE PLAN
Sustainability
In order to ensure sustainability of the project, we will:
•
Build the capacity of parents of CYSHN on leaderships groups and committees through
partnering with local parent leadership organizations to develop parent leaders, family
advocates, and educate state level departments, providers and families on the importance of
partnering with parents in the care of the CYSHN.
•
Leverage on-going state efforts aligned with this activity such as establishment of statewide
health information exchange systems, Early Childhood Comprehensive Systems Grant activities,
National Help Me Grow plans, Title V Block Grant and Affordable Care Act health care system
enhancements, and Health Reform and State Innovation Model activities.
•
Continue to build statewide capacity of primary care clinics to implement the medical home
(Minnesota Health Care Home) model through a formal partnership (via a written Memorandum
of Understanding) with the MDH Health Care Homes Program.
•
Integrate on-going evaluation measures into the annual Title V Block Grant needs assessment
and reporting.
•
Monitor, record and share successes and lessons learned with state agency leadership, other
state grantees, policy makers and other key stakeholders as the work and decision-making will
be transparent to all levels.
•
Monitor and apply for federal, state and private grant opportunities that would continue to
support integrated improvements into systems of care for CYSHN.
•
Present the interests of CYSHN to all other state departments so as to encourage awareness of
the relevance of issues faced by CYSHN and their families, as well as develop an understanding
among other sections of the impact of their activities on CYSHN and their families.
34
MINNESOTA STATE PLAN
Evaluation Matrix
The following matrix was developed to meet the requirements of the project evaluation plan.
Evaluation Question
Data Source
Data Collection Methods & Measures
To what extent are
families (including CYSHN
Parent Workgroup
members) satisfied with
their participation in the
decision-making process?
• Surveys (Parent
Workgroup
Survey, National
Surveys)
• Meeting
Minutes
Method:
• Conduct routine online survey of Parent
Workgroup members
• Informal assessments at workgroup
meetings
• Review national survey findings
Evaluation /
Analysis
Methodology
• Analyze survey
responses
• Document review
• Review analysis/
findings with
Parent
Workgroup
Domain
Relevant Grant Activities
Domain 2:
Collaboration/Partn
erships
• CYSHN Parent
Workgroup
• Increase parent and
family partnerships
• Analyze survey
responses
• Document review
• Review
analysis/findings
with Stakeholder
Workgroup
Domain 2:
Collaboration/
Partnerships
• CYSHN Stakeholder
Workgroup
Measures:
• CYSHN Core Outcome: % of CYSHN whose
families are partners in shared decisionmaking at all levels (NS-CSHCN, NSCH)
• % of parent workgroup members reporting
satisfaction
To what extent has
communication improved,
or become more
coordinated, between
stakeholders?
• Surveys
• Meeting
Minutes
Method:
• Conduct routine online survey of
Stakeholder Workgroup members
• Conduct routine online survey of care
coordinator collaboratives
• Informal assessments at workgroup
meetings
Measure:
• % of stakeholder workgroup members
reporting improved communication
between stakeholders
• % of care coordinators on collaboratives
reporting improved communication
35
MINNESOTA STATE PLAN
Evaluation Question
Data Source
Data Collection Methods & Measures
To what extent has parent
participation on local and
statewide committees
increased?
• Meeting
Minutes
• Membership
Lists
Method:
• Review membership lists
To what extent are youth
and families more
knowledgeable about the
health care home/medical
home model?
• Training
evaluations
• Parent
interviews/
surveys
Are youth and families
more knowledgeable
about what care
coordination is, who their
care coordinators are, and
what their roles include?
• Training
evaluations
• Parent
interviews/
surveys
• Care
Coordination
Systems
Mapping
Measure:
• # of parents of CYSHN involved on statewide
committees
Method:
• Conduct evaluations of training
opportunities for parents and youth
• Conduct surveys/interviews of families
Measure:
• % of families report being more
knowledgeable of the medical home model
after training
Method:
• Conduct evaluations of training
opportunities for parents and youth
• Conduct surveys/interviews of families
• Gather qualitative information from families
during systems mapping activities
Measure:
• % of families report being more
knowledgeable about care coordination
after training
Evaluation /
Analysis
Methodology
Document review
Domain
Relevant Grant Activities
Domain 2:
Collaboration/
Partnerships
Increase parent and fmaily
partnerships
Analyze
survey/evaluation
responses
Domain 3: Care
Coordination
Education
• Analyze
survey/evaluation
responses
• Analyze
qualitative data
from systems
mapping
activities
Domain 3: Care
Coordination
Education
36
MINNESOTA STATE PLAN
Evaluation Question
Data Source
Data Collection Methods & Measures
To what extent are clinics
implementing evidencebased shared care plans?
What percentage of
CYSHN in clinics have a
shared care plans?
• Clinic SelfAssessment Tool
• Count of shared
care plans
Method:
• Clinics complete self-assessment tool at
baseline, midpoint, and post learning
community/pilot project
• Chart review to count number of shared
care plans in place
Are families satisfied with
their shared plans of care?
Are families receiving
effective care
coordination?
Parent
interviews/surveys
(tool to be
developed/
determined)
• National survey
• Parent
interviews/
surveys
Measure:
• Minimum of 20% of targeted CYSHN have a
shared care plan (targeted population to be
determined by clinics)
Method:
• Conduct interviews/ surveys of a minimum
of 10 families from each clinic participating
in Learning Community/Pilot Project
Measure:
• % of families reporting satisfaction and
effectiveness of shared care plans
Method:
• Review national survey findings
• Conduct parent interviews/surveys
Measure:
• CYSHN Core Outcome: % of families
receiving effective care coordination (NSCH)
What are the strengths
and weaknesses of current
written agreements
between state agencies
that focus on care
coordination, referrals,
Document review
Method:
• Gather current written agreements and
conduct document review
Evaluation /
Analysis
Methodology
• Analyze selfassessment
responses
• Chart/document
review
Domain
Relevant Grant Activities
Domain 3: Care
Coordination
Shared Care Plan Learning
Community/Pilot Project
Analyze
survey/interview
responses
Domain 3: Care
Coordination
Shared Care Plan Learning
Community/Pilot Project
• Analyze/review
national survey
findings
• Analyze survey/
interview
responses
Domain 3: Care
Coordination
• Shared Care Plan
Learning Community/
Pilot Project
• Parent and youth
education
Document review
Domain 4: Care
Integration
Written agreement
development
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MINNESOTA STATE PLAN
Evaluation Question
Data Source
Data Collection Methods & Measures
Evaluation /
Analysis
Methodology
Domain
Relevant Grant Activities
Parent
Interviews/Survey
Method:
• Conduct survey/ interviews of targeted
families accessing shared resource
Analyze
survey/interview
responses
Domain 5: Shared
Resource:
CYSHN Navigator
• Analyze
Knowledge
Survey data
responses
• Review analysis
with Parent
Workgroup
• Compare to
results of already
established
MinnHelpInfo
Domain 5: Shared
Resource
CYSHN Navigator
follow-up, and data
sharing?
Are families able to easily
access needed specialists,
supports or services?
Measure:
• 50% of families and medical home providers
of CYSHN contacting a shared resource for a
needed specialist, support or service, will
obtain a needed specialist, support, or
service.
To what extent are
families of CYSHN more
knowledgeable about the
services available to them?
Survey
Method:
Conduct embedded within Shared Resource
website
• Qualitative data collection from Focus
groups on usability and acceptability of
website format and content
• Informal assessment from Parent
Workgroup users and CYSHN Section users
Measure:
• # of parents of CYSHN who self-report
feeling knowledgeable about services
available to them as compared to selfreported pre-Shared Resource knowledge
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MINNESOTA STATE PLAN
Evaluation Question
Data Source
Data Collection Methods & Measures
Are parents of CYSHN and
providers satisfied with
the shared resource?
Survey
Method:
Conduct Satisfaction Survey embedded within
Shared Resource website
• Qualitative data collection from focus
groups on usability and acceptability of
website format and content
• Informal assessment from Parent
Workgroup users and CYSHN Section users
Are families able to easily
access community-based
services?
Are families receiving
integrated care through a
patient/family-centered
medical home/health care
home?
National survey
• National survey
• Parent
interviews/
surveys
Measure:
• % of Shared Resource users who report
satisfaction with Shared Resource
Method:
• Review national survey findings
Measure:
• CYSHN Core Outcome: % of CYSHN whose
families report being able to easily access
community-based services
Method:
• Review national survey findings
• Conduct parent interviews/surveys
Measure:
• CYSHN Core Outcome: % of families
receiving care in medical home (NSCH)
Evaluation /
Analysis
Methodology
• Analyze
Satisfaction
Survey data
responses
Review analysis
with Parent
Workgroup
• Compare to
results of already
established
MinnHelpInfo
Domain
Relevant Grant Activities
Domain 5: Shared
Resource
CYSHN Navigator
Analyze/review
national survey
findings
Domain 5: Shared
Resource:
CYSHN Navigator
• Analyze/review
national survey
findings
• Analyze survey/
interview
responses
Domain 6: Other
Overall outcome - all
project activities
combined
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MINNESOTA STATE PLAN
References
1. Data Resource Center for Child and Adolescent Health (2012). 2011/2012 National Survey of
Children’s Health. Retrieved from http://www.childhealthdata.org/learn/NSCH.
2. Data Resource Center for Child and Adolescent Health (2012). 2009/2010 National Survey of
Children with Special Health Care Needs. Retrieved from
http://www.childhealthdata.org/learn/NS-CSHCN.
3. Antonelli RC, McAllister JW, Popp J (2009). Making care coordination a critical component of the
pediatric health system: A multidisciplinary framework.The Commonwealth Fund. Available at:
http://www.commonwealthfund.org/Publications/Fund-Reports/2009/May/Making-CareCoordination-a-Critical-Component-of-the-Pediatric-Health-System.aspx.
4. Turchi RM, Mann M (2012). Building a medical home for children and youth with special health
needs. In: Hollar, D., ed. Handbook of Children with Special Health Care Needs. New York, NY:
Springer-Verlag; 399-418.
5. National Center for Medical Home Implementation. Care coordination fact sheet. Available at:
https://medicalhomes.aap.org/Documents/CareCoordinationFactsheet.pdf.
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MINNESOTA STATE PLAN
Appendix: Data Tables from Figures/Charts
Table 3: Prevalence of CSHCN, by Race/Ethnicity (Data from Figure 1)
RACE
%
White, Non-Hispanic
19.9%
Black, Non-Hispanic*
18.4%
Multiple Race, Non-Hispanic*
12.1%
Hispanic*
19.4%
All Racial/Ethnic Groups
18.6%
Combined
Table 4: Disparities in Minnesota CYSHN vs. Non-CYSHN Populations (Data from Figure 2)
Disparities
CYSHN
Non-CYSHN
Overweight /obese
33.20%
25.10%
Receiving care in a medical home
54.00%
62.50%
Parents usually or always feel stress due to
23.40%
5.80%
parenting
Living with mothers who are in excellent or
45%
65.90%
very good physical and mental health
Living with fathers who are in excellent or
56.40%
71.70%
very good health
Someone in household smokes tobacco
36.40%
20.80%
Experienced 2 or more adverse family
35.80%
18.60%
experiences
Table 5: Percent of CYSHN Who Meet National Core Outcome Indicators (Data from Figure 3)
National Core Outcome
Minnesota
National
Families partner in shared decision-making
76.30%
70.30%
and are satisfied with services received*
Receive comprehensive care within a
54.00%
46.80%
medical home**
Have consistent and adequate insurance**
73.50%
76.50%
Screened early and continuously for special
75%
78.60%
health care needs*
Can easily access community-based
69.50%
65.10%
services*
Youth received needed transition services*
47.10%
40.00%
Table 6: Percent of Families of CYSHN Meeting Components of Shared Decision-Making (Data from
Figure 4)
Shared Decision-Making Component
Minnesota
National
Child's doctors discussed range of health
67.80%
64.50%
care/treatment options
Child's doctors encourage parents to ask
70.60%
67.00%
questions or raise concerns
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MINNESOTA STATE PLAN
Shared Decision-Making Component
Child's doctors make it easy for parents to
ask questions or raise concerns
Child's doctors respect parent's treatment
choices
Minnesota
National
73.40%
70.70%
67.80%
64.50%
Table 7: Percent of CYSHN Meeting Components of Medical Home (Data from Figure 5)
Medical Home Component
Minnesota
National
Usual source for both sick & well care
94.70%
92.90%
Has a personal doctor or nurse
95.20%
92.80%
Has no problems obtaining referrals, when
26.90%
24.40%
needed
Receives family-centered care
74.70%
67.00%
Receives effective care coordination
44.90%
42.90%
Table 8: Adequacy of Insurance in CYSHN vs. Non-CYSHN Populations (Data from Figure 6)
Adequacy of Insurance Components
CYSHCN
Non-CYSHCN
Insurance Coverage Usually/Always Meets
67.90%
74.80%
Child's Needs
Insurance usually/always allows child to see
94.90%
97.40%
needed providers
Insurance offers benefits that meet child's
89.60%
94.80%
needs
Family does not pay out-of-pocket costs
34.00%
31.00%
Out-of-pocket costs are usually/always
58.70%
67.80%
reasonable
Table 9: CYSHN Without Insurance at Some Point During the Past Year, by Income Level (Data From
Figure 7)
Income Level
Minnesota
National
0-99% Federal Poverty Level (FPL)
20.10%
14.20%
100-199% FPL
29.50%
14.10%
200-399% FPL
5.80%
8.50%
400% FPL or more
0.03%
2.30%
All CSHCN
10.60%
9.30%
Table 10: Percent of CYSHN Receiving Preventive/Well-Child Visits (Data from Figure 8)
Visit Type
Minnesota
National
Received well-child check-up during past 12
87.00%
90.40%
months
Received preventive dental visit during past
86.60%
85.90%
12 months
Table 11: Families of CYSHN Experiencing Difficulties/Delays in Accessing Services (Data from Figure 9)
Difficulty/Delay Experienced
Not eligible for services
Minnesota
National
7.20%
10.80%
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MINNESOTA STATE PLAN
Difficulty/Delay Experienced
Services are not available in area
Waiting lists or backlogs in getting
appointments
Issues related to cost
Trouble obtaining information
Other difficulties/delays
Minnesota
National
10.30%
11.20%
15.50%
17.80%
11.80%
7.70%
3.20%
14.90%
9.00%
3.00%
Table 12: Percent of Youth with Special Health Needs Meeting Transition Components
(Data from Figure 10)
Transition Component
Minnesota
National
Have discussed transition to adult health
25.30%
20.60%
care, if needed.
Have discussed changing health needs
42.50%
44.10%
Have discussed insurance changes
26.40%
23.20%
Doctors usually/always encourage youth to
73.30%
70.10%
take age-appropriate responsibility for
health care needs
Table 13: Primary Responsibilities in Providing Care Coordination Statewide (Data from Figure 13)
Primary Responsibility Group
X
Facilitate, support, and assist in managing transitions
2%
Use health information technology / electronic medical records
3%
Development of care plan
3%
Assure competent care coordination workforce
3%
Coordinate quality improvement efforts
4%
Coordinate funding
5%
Communication
5%
Facilitate care team and ensure family is a team member
6%
Intake, assessment, and evaluation
7%
Advocacy and policy development
9%
Relationship building
10%
Assist in navigating the system
11%
Arrange for, set up, coordinate, and track tests, referrals, and
15%
treatment
Provide education and resources
17%
Table 14: Primary Responsibilities, by Region (Data from Figure 14)
West
East
Southwest Northwest Northeast
Metro
Metro
Use health information technology /
7%
1%
3%
1%
2%
electronic medical records
Relationship building
8%
18%
8%
8%
4%
Provide education and resources
12%
17%
20%
17%
20%
Intake, assessment, and evaluation
7%
11%
5%
8%
5%
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MINNESOTA STATE PLAN
West
Metro
Facilitate, support, and assist in
managing transitions
Facilitate care team and ensure family is
a team member
Development of care plan
Coordinate quality improvement efforts
Coordinate funding
Communication
Assure competent care coordination
workforce
Assist in navigating the system
Arrange for, set up, coordinate, and
track tests, referrals, and treatment
Advocacy and policy development
East
Metro
Southwest Northwest Northeast
3%
0%
4%
1%
4%
3%
10%
9%
3%
4%
3%
3%
2%
5%
3%
1%
2%
4%
3%
4%
4%
0%
8%
3%
3%
6%
11%
4%
7%
3%
2%
3%
5%
7%
3%
10%
18%
9%
10%
14%
11%
11%
18%
12%
18%
16%
10%
8%
2%
11%
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CHILDREN AND YOUTH WITH SPECIAL HEALTH NEEDS