Welcome to the Minnesota Chapter
American Academy of Pediatrics

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Inside this Issue:

- Medical Home in Minnesota
- Care Model for Child Health in a Medical Home
- ...whose compassionate care sustained us...
- Access to Medical Home
- Core Outcome
- A Short Definition of Medical Home
- Some Next Steps

Medical Home in Minnesota by Jeff Schiff, M.D., FAAP President of Minnesota Chapter of the American Academy of Pediatrics Ann Ricketts, M.S., M.P.H. Medical Home Coordinator, Minnesota Children with Special Health Needs Family Health Division of the Minnesota Department of Health.

"The idea of home is the idea of a place where one is safe, where one is sustained; it is the idea of refuge; of the place where circumstances are organized for one's unconditional benefit. -Paul Gruchow

The Minnesota Chapter of the American Academy of Pediatrics and PACER Center/Family Voices of Minnesota are partnering with the Minnesota Department of Health through its Minnesota Children with Special Health Needs Section (MCSHN) on an exciting project funded by the federal Maternal and Child Health Bureau (MCHB) - the "Minnesota Medical Home Development Project."

The two words "medical home" have evolved in the arena of health care and public health to have a very distinct meaning, which goes beyond its more common use only a few years ago. To many, "medical home" means a community based primary medical care provider who is the first line of preventive and acute care for patients and who coordinates and manages referrals to and results from specialty care or services

Now, however, "medical home" means more than that. According to the National Initiative for Children's Healthcare Quality (NICHQ): "The Medical Home" concept provides the organizing principles for caring for children with special health care needs." The comprehensive health needs of these children and adolescents do not fit with the services traditionally offered by the primary care system, which is designed for the 80 percent of children who do not have special needs. In a document developed by the Center for Medical Home Improvement (CMHI), the authors state that their involvement with a number of projects has been to promote primary care medical homes as a family centered "way of doing things" for children with special health care needs.

The American Academy of Pediatrics with support from the MCHB has taken this concept forward by defining the "medical home" as health care for infants, children and adolescents that is "accessible, continuous, comprehensive, family-centered, coordinated, compassionate and culturally competent." Primary care physicians who are well trained in all aspects of pediatric care provide the "medical home." It is distinguished from other models of care by its level of expertise and the commitment to address psychosocial and community issues that affect the physical and emotional health of the child and family.

Children with special health care needs have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions. While comprising about 13 to 18 percent of children in the U.S., children with special health care needs (CSHCN) account for 80 percent of pediatric health care expenses. This group of children has grown by 30 percent over the past two decades, due largely to improved diagnosis and early identification, enhanced survival from prematurity, birth defects, and chronic illnesses, and better access to specialized care. The partners in Minnesota's Medical Home Project have determined to build on the work that has been done in other states. Minnesota has launched its own "medical home learning collaborative." This work is based on the national Medical Home Learning Collaborative - which was conducted by NICHQ and involved CMHI, the National Center for Medical Home Initiatives at the American Academy of Pediatrics, and the MCHB.

The Minnesota Medical Home Learning Collaborative went "live" on March 18-19, 2004, with Learning Session I. Eleven teams came together on those two days to be immersed in the medical home care model, the change process, and steps for their first Action Period.

Each practice team is comprised of a physician and care coordinator from the practice and at least two parents.

The objectives of the Minnesota Medical Home Learning Collaborative are to implement a system of coordinated care for children with special health care needs that includes parents as partners in care, integrates community resources, closes the gap between what is possible and what is done, and fosters a relationship between MCSHN and primary care practices.

The Medical Home Learning Collaborative is really an improvement process to realize what is so essential for CSHCN. It is based on some exciting work around systems change and performance improvement.

Some key points on improvement as stated by Don Berwick (Institute for Healthcare Improvement), a pioneer in the quality improvement area, are:

• Not all change is improvement, but all improvement is change.
• Real improvement comes from changing systems, not changing within systems.
• To make improvements we must be clear about what we are trying to accomplish, how we will know that a change has led to improvement, and what change we can make that will result in an improvement.
• The more specific the aim, the more likely the improvement; armies do not take all hills at once.
• Concentrate on meeting the needs of patients rather than the needs of organizations.
• Measurement is best used for learning rather than for selection, reward, or punishment.
• Measurement helps to know whether innovations should be kept, changed, or rejected; to understand causes; and to clarify aims.
• Effective leaders challenge the status quo both by insisting that the current system cannot remain and by offering clear ideas about superior alternatives.

The essence of improvement is:

• Child/Youth/Family or patient defined
• Based on constant experimentation
• No blame. "Fear (of failure) must be abolished"
• No bad people, only bad systems
• Based on measurement - for learning, not punishment
• Every defect is a treasure

(See www.ihi.org.)

Learning theories suggest a few key routes to encourage real "know-how" that have been incorporated into the learning collaborative model. For example, learning is accomplished through endless invention, endless experimentation - and innovation spreads through people not on paper. The most effective way to spread knowledge is for person A and person B to be in a different place from where they usually are (a "learning field") and they DO something together; and then both "teacher" and "learner" are altered. Some preconditions for learning is that there be trust, support, the chance to have conversations, fun, and sharing.

Finally, the Medical Home Learning Collaborative process uses the Chronic Care Model (Wagner et al) as a framework for building a medical home. (See section: Care Model for Child Health in a Medical Home.)

These elements of improvement, effective learning preconditions, and the adapted medical home care model for child health together form the basis of a medical home learning collaborative. Using the collaborative model with the convictions and commitment of these eleven pioneering practice teams to the concept of Medical Home, we hope to see real systems changes for CSHCN.

The eleven teams are embarked on a journey of "medical home improvements" that will pave the way for the realization of this concept of medical home to more and more providers throughout Minnesota - so that in the future each of Minnesota's 160,000 children with special health needs have access to a Medical Home.

The mission of the Minnesota Medical Home Project is to transform care for CSHCN/youth and their families so that:

• Care is coordinated, comprehensive, and satisfying both to deliver and receive.
• Care is planned, monitored and measured throughout childhood and transitioned smoothly into adulthood.
• Community-based pediatricians, family physicians, nurse practitioners, and physician's assistants are active co-managers with specialists
• Children and their families are supported as the primary caregivers, decision-makers, and lead partners in the health care process.
• Community resources are integrated into the care process, and community cultures are effectively supported.

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Care Model for Child Health in a Medical Home

The Minnesota Medical Home Project has based its work on the National Medical Home Learning Collaborative - which brought together 33 practices from 11 states in a 15 month process. The content framework for the three learning sessions and action periods for the Collaborative is the Care Model for Child Health in a Medical Home, adapted by the Center for Medical Home Improvement (CMHI) and the National Initiative for Healthcare Quality (NICHQ) from the Chronic Care Model developed by Dr. Ed Wagner. (See www.improvingchroniccare.org.)

The Chronic Care Model is an organizational approach to caring for people with chronic disease in primary care setting. The system is population-based and creates practical supportive, evidenced-based interactions between an informed, activated patient and a prepared, proactive practice team (Wagner, et al).

The Care Model for Child Health in a Medical Home has been adapted from the Chronic Care Model for the care of CSHN in primary care settings. Six domains organize the model; each represents numerous change concepts and innovative action ideas for a strong health care environment supportive of a Medical Home for every child with special health care needs.

Care Partnership Support

• Programs emphasize CSHCN/youth and families' active and central role in managing care needs. This includes a partnership for: assessment, care planning (including written care plans), and goal setting.
• Educational resources increase CSHCN/youth and families' knowledge, confidence, skills; Title V agency offers education for Medical Home and provides educational resources for CSHCN/youth and families.
• CSHCN/youth and families have access to peer support groups and family advocacy networks; Title V agency promotes and supports advocacy for Medical Home and links family & Medical Home advocacy.
• Measurement data about practice quality of care giving and care coordination is shared with families.
• CSHCN/youth and clinicians identify methods for improving clinician-patient communication.

Delivery System Design

• The care team at the medical home (includes family) anticipates challenges and coordinates services to maintain or improve quality of life and functional outcomes.
• Access to practice providers and staff is facilitated, streamlined and individualized.
• Transitions into adult life and to adult health services are maintained and up to date for all CSHCN/youth.
• Care is provided in planned encounters (visit and non-visit) based on family needs.
• Routine and condition specific preventive services are maintained and up to date for all CSHCN/youth.
• Roles and responsibilities of team members are defined and refined to best meet family identified concerns and priorities; appropriate training and mentorship are provided to enable team members to understand & fulfill roles and are supported by Title V agency.
• The system offers families/youth a care coordinator for continuous, comprehensive care coordination.
• Cultural sensitivity supports differences in: language, ethnicity, literacy, health beliefs, spirituality and developmental ability; Title V agency assists with knowledge and materials.

Decision Support

• Evidence-based guidelines, when available, are integrated into practice systems.
• The system integrates family expertise with professional knowledge.
• Pediatric specialists (including mental health) and primary care providers exchange information and knowledge in real time to increase clinician expertise.
• Approaches to clinician education proven to change practice behavior are utilized.

Clinical Information System

• A registry of CSHCN/ youth is maintained which includes reminders for care for individual CSHCN/ youth and enables a care planning process.
• The system enables monitoring of practice performance for individualized care and for population of CSHCN/ youth overall, including care of high-risk sub-groups.
• The information system provides regular feedback (including outcomes data) to the care team and family.
• Within the constraints of confidentiality and parental consent, information is accessible to other providers in the practice, specialists, and other community resources.

Community

• Community programs, service agencies, professional organizations, employers and public organizations partner with practices/the health care system to create community systems of support that coordinate and implement improvements around CSHCN/youth and family needs.
• Cultural assets of community groups are accessed by practice teams; public health.
• Community resources to support CSHCN/youth and families are identified and accessed by practice; linkages with community resources are supported by Title V agency.
• The Medical Home becomes a vital community resource.

Health System

• Health insurance coverage provides adequate resources for CSHCN/ youth services; Title V agency works with payers, including Medicaid, to close gaps and increase access and resources for CSHCN/ youth and Medical Home.
• Specific goals for CSHCN/ youth and families are part of the practice/organization's annual strategic plan.
• Senior leadership of health care system commits to meeting needs of CSHCN/ youth and families.
• The system adopts an effective performance improvement model supported by Title V agency.
• Provider incentives support these organizational goals.
• Family feedback mechanisms and participation in medical home system improvement activities are supported.

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". . . whose compassionate care sustained us . . ."

The following is part of the PACER Center publication, Working with Doctors, by Carolyn Allshouse: This publication was created to help parents whose children have disabilities ad special health care needs effectively advocate for their children in the health system. The focus of the book is on communication skills with medical professionals and maintaining accurate records. Working with Doctors is free to Minnesota families and can be purchased at a cost of $8.00. To obtain a copy of this publication or get more information about PACER Center and other PACER publications please contact PACER Center at:
   Pacer Center
   8161 Normandale Boulevard
   Minneapolis, MN 55437
   Phone: 952-838-9000
   Web site: www.pacer.org

Forward and Dedication

by Joyce and Edward Ratner

Parents of children with special health care needs speak a common language. A language of sadness and joy, fear and hope, uncertainty, and perseverance. The protective love we all feel for our children gives us the voice we need to advocate for them. It also makes us more emotionally vulnerable as we navigate a challenging health care system. The relationship with our children's health care providers impacts our ability to cope with the challenges we face. Our struggles are made easier when our feelings are heard and understood by those professionals who show compassion and extend their humanity to us. We offer our experiences and perspective as parents who sought medical care for a child with special health care needs, hoping to find the professional relationships we need in our journey.

Like many parents, we suspected a problem before our doctors did. For months we lived with agonizing doubts about our daughter's muscle tone and eyesight. We were also overwhelmed with fear and fatigue by caring for an infant who could not be soothed. During routine office visits her pediatrician minimized our concerns. Despite our own professional expertise (as a physician and pediatric social worker), we welcomed the reassurances that enabled us to deny the existence of a serious problem. After all, we were parents first - who needed to cling to our hopes and dreams for the baby that we loved.

As Ilana's lack of development became more glaringly apparent, we sought the advice of a neurologist. Again we were reassured, but he finally agreed to make a referral to an ophthalmologist to address our concerns about her vision. From the opposite side of the exam table, the eye doctor announced the problem was not in her eyes but in her brain. He instructed us to go back to the neurologist because he could not help us. As our world and vision for our future collapsed around us, the doctor abruptly left the room.

Later that week we sat next to the radiologist in a room lit eerily through the image of our daughter's brain. He confessed that he had never seen a brain like hers. We were referred to a local university researcher for an explanation. Only after sending medical records and new lab specimens to an expert on the other side of the country, did we get any answers. By phone, we got the confirmation of our daughter's diagnosis but no advice or suggestions on where to turn for help.

We learned that our precious daughter Ilana had a progressive, incurable neurological disease - Canavan's Disease. From the point that we learned of our child's diagnosis we entered an unfamiliar path. We were frightened and did not know where to get advice. With some trepidation, we went back to see Ilana's pediatrician after learning of the diagnosis. As he entered the room he commented on her runny nose and made the assumption that we were there to see him for a cold. We told him of the diagnosis and his response was that she sure didn't look like a child who had a metabolic disease. With that observation, he informed us we should go see a neurologist. He backed out of the exam room and shut the door on us, forever.

We felt abandoned by each of these doctors. Their responses exacerbated our pain. At the most basic level we needed a diagnosis. Beyond that, we needed to know about the disease or where to get that information. We also needed empathy, compassion, and support.

Like most parents, we went on to become the experts on our daughter's disease. We researched the medical literature and contacted local and national support groups. Ultimately, it was other parents who became our best resources. We received practical advice from parents in caring for our child. We also found empathy for the heartfelt questions that went beyond her medical status.

Why would our little girl with the gorgeous laugh never be able to see the faces of the people who loved her? Why would our precious child with the beautiful smile, who loved music, and having her face covered with kisses never be able to walk, talk, or feed herself? How would we survive as a family?

Along with other parents, we found invaluable support from the staff at PACER and special education professionals. They brought their expertise and their compassion into our home and our lives. We learned to define what we should expect from a relationship between ourselves and Ilana's doctors. We discovered how to begin nurturing a relationship with her doctors, even before the initial history and physical. Finding the right doctors and knowing how to effectively communicate with them became essential to caring for our child.

It was important for us that our physician be someone who would guide us while respecting our right to make choices for our daughter. Also, we needed someone who could offer us empathy and support for the daily challenges we faced. With persistence, we found a new pediatrician who had the qualities we needed to guide us in the life and death decisions for our precious child.

At the initial visit, he did what no other doctor had done before. He smiled at our daughter and took her hand. He called Ilana by her name while he examined her tenderly. He recognized a little girl staring up at him as well as her medical difficulties. He chuckled when he saw how we could elicit one of her beautiful smiles from that sweet face in front of him. There is little that is so touching to a parent of a sick child as to experience another person touching your child, ministering to her, and responding to the pleasures that you as a parent savor in your child. At our first visit, he shared with us something about himself. He helped us to feel less alone. He asked about our struggles and inquired about what support we had in our lives. Most importantly, he acknowledged Ilana's special qualities and our love for her. He gave us hope, not for a cure but for her comfort and quality of life. We felt such relief and gratitude to finally find a doctor that displayed a genuine interest and warmth towards us and our child.

This pediatrician chose to accompany us on our journey. His concern for her and our family led him to make house calls so we wouldn't have to take her out for office visits. He took time to attend team meetings with home care staff, her neurologist, and even our clergyman and family therapist as we defined goals and made care plans for our daughter. As her health failed, he had the courage to share our pain and focus on the humanity of our child.

This book is dedicated to our precious daughter, Ilana, and to her pediatrician, James R. Moore, MD whose compassionate care sustained us.

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Access to Medical Home: Results for Minnesota of the National Survey of Children with Special Health Care Needs (CSHCN)

by Sarah Thorson
MCSHN, Policy and Program Supervisor

The Minnesota Children with Special Health Needs (MCSHN) Section within the Family Health Division of the Minnesota Department of Health, is the Title V program for Minnesota charged with promoting systems of care for CSHCN. While MCSHN has been working for many years to "promote the optimal health, well being, respect and dignity" of CSHCN/youth, like every other state, we have had no systematic way to determine if "systems of care" exist and to what extent they are working.

The National Survey of Children with Special Health Care Needs (also referred to as SLAITS) was developed and launched over a three-year period beginning in 1999. It was created as a strategy to systematically determine the extent to which systems of care exist for CSHCN.

The survey, which was a partnership between the federal Maternal and Child Health Bureau and the National Center for Health Statistics, utilized a telephone survey strategy that screened for CSHCN and assured that a minimum of 750 CSHCN families were interviewed for each state. Over 37,000 families were interviewed across the country.

In the Supplement to Pediatrics (May 2004), a summary of the results was published (Strickland et al). The authors report that (1) approximately half of CSHCN receive care that meets all five components established for medical home; (2) most CSHCN have a usual source of care and a personal doctor or nurse, but other components of the medical home, especially elements of care coordination and family centered care, are lacking; (3) access to a medical home is significantly affected by race/ethnicity, poverty, and the limitations imposed on daily activity by the child's special health care need; and (4) parents of children who do have a medical home report significantly less delayed or forgone care, significantly fewer unmet health care needs, and significantly fewer unmet needs for family support services.

Data for Minnesota from the Survey of CSHCN show that there are over 160,000 children with special health needs in Minnesota and that fewer than half (48.7 percent) have a medical home while nearly 89 percent of CSHN in Minnesota have a usual source of care. Only 40 percent have effective care coordination when needed. Children and their families overwhelmingly have professional care coordination when needed (79.3 percent) but doctors communicating well with one another and doctors communicating well with other programs are problematic (51.2 percent and 27.6 percent respectively).

The survey data provide a useful measure of those specific areas that need the most attention: (1) effective care coordination - especially as regards communications with other programs and other doctors and (2) family centered care. The data shown in the Table compare Minnesota results with National results.

Core Outcome: Children with Special Health Needs Have a Medical Home
Essential Element and Criteria	% Success (MN)	% Success (US)
a. The child has a usual source of care	88.7	90.5
i. The child has a usual source for sick care	88.1	90.6
ii. The child has a usual source for preventive care	99.3	98.8
b. The child has a personal doctor or nurse	84.6	89
c. The child has no problems obtaining referrals when needed	76.5	78.1
d. Effective care coordination is received when needed	40.5	39.8
i. The child has professional care coordination when needed	79.3	81.9
ii. Doctors communicate well with each other	51.2	54.4
iii. Doctors communicate well with other programs	27.6	37.1
e. The child receives family-centered care	69.9	66.8
i. Doctors usually or always spend enough time	86.7	83.6
ii. Doctors usually or always listen carefully	89.4	88.1
iii. Doctors are usually or always sensitive to values and customs	89.2	87
iv. Doctors usually or always provide needed information	82.2	81
v. Doctors usually or always make the family feel like a partner	87.9	85.9
MEDICAL HOME OUTCOME	48.7	52.6

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A Short Definition of Medical Home

A Medical Home is a partnership between family and physician that:
     Is not only a place
     But a process of care
     That emphasizes "home" as:

• Headquarters for care
• A place CSHCN and families to feel recognized and supported
• Part of community services

A Medical Home emphasizes:
     Partnerships with parents
     Primary care-based care coordination
     Continuous improvement process
     Linkages to community resources
     Improved office systems that:
     Identify CSHCNs in order to

• Track and monitor progress
• Evaluate outcomes

From Carl Cooley, MD - Presentation at Learning Session I

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Some Next Steps

Every child deserves a medical home." This is a phrase that is gaining recognition and developing traction as something not only desirable but attainable. The concept of medical home is imbedded in many national initiatives including Healthy People 2010 and the President's New Freedom Initiative. The Maternal and Child Health Bureau has made medical home a primary focus.

In the Forward to the journal, Pediatrics (Supplement, May 2004), E. Stephen Edwards wrote: "The American Academy of Pediatrics has established access to high quality health care through a medical home with appropriate reimbursement to the pediatrician as its top priority . . . ." He went on to write that "We need not only the vision of the medical home but also the demonstration of practical tools and methods that have proved successful in overcoming recognized barriers to providing care that is accessible, family centered, comprehensive, continuous, coordinated, compassionate, and culturally effective."

Practical tools to help people move towards the goal of a medical home for every child are emerging. There are actions that a practice can take to move towards "medical homeness." A good starting place is to complete the Medical Home Index and the Family Medical Home Index. Both these tools are available on the Center for Medical Home Improvement website, which also has other key tools for implementing Medical Home.

The American Academy of Pediatrics has a comprehensive website with links to hundreds of resources. It is a good place to start when researching Medical Home. On the website is a link to the AAP medical home comprehensive training program. This program can be adapted to a system, community or practice.

But the work involved in moving a practice toward a more fully realized medical home is really a systems change process. Such a process often requires support, technical assistance, mentoring, or "collaborative learning." While the funding for the Minnesota Medical Home Project will be ending in 2005, the partners are committed to continuing to provide support and technical assistance

So the partners would like to hear from primary care providers serving CSHN. The partners can come to you or your practice to talk about what you can do to realize medical home. Contact any of the three partners through the Medical Home Coordinator, Ann Ricketts. Or email any of the partners through Jeff Schiff: Jeff.Schiff@childrenshc.org; Carolyn Allshouse: Callshouse@pacer.org; or Ann Ricketts: ann.ricketts@ health.state.mn.us.

Important websites:
www.medicalhomeimprovement.org for the Center for Medical Home Improvement
www.medicalhomeinfo.org for the American Academy of Pediatrics' Medical Home website
www.nichq.org for the National Initiative for Children's Healthcare Quality
www.health.state.mn.us/mcshn for the Minnesota Department of Health - click on the Medical Home link.
www.improvingchroniccare.org for more about the Chronic Care Model
www.ihi.org for more about the work of the Institute for Healthcare Improvement

The Minnesota Medical Home Project (Minnesota Medical Home Collaborative) is a partnership between The Minnesota Department of Health, the Minnesota Chapter of the American Academy of Pediatrics and PACER Center/Family Voices of Minnesota. The Minnesota Medical Home Learning Collaborative would not be possible without all the pioneering work of the Maternal and Child Health Bureau, the American Academy of Pediatrics, the Center for Medical Home Improvement, and the National Initiative for Children's Healthcare Quality. The Minnesota Project has based its work on the National Medical Home Learning Collaborative, recently finishing one year of work.

This Project is made possible through a grant from MCHB - Contract Number 1 H02MC00101-3

The staff person for the Minnesota Medical Home Learning Collaborative is:
   Ann Ricketts, M.S., M.P.H.
   Medical Home Coordinator
   MDH-MCSHN
   P.O. Box 64882
   St. Paul, MN 55164-0882
   651-281-9970
   ann.ricketts@health.state.mn.us

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