Components of the Medical Home: |
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| Coordinated Care | |
| Family-Centered Care | Compassionate Care |
| Continuous Care | Culturally Competent Care |
| Comprehensive Care | |
"Every child deserves a medical home" is one of the American Academy of Pediatrics (AAP) essential child health outcomes for the 21st century. The Maternal Child Health Bureau is collaborating with the AAP to promote this effort. What does medical home mean to families, pediatricians and other health providers? The history of the term goes back to 1965 when Medical Home was originally used to describe a place, a single source of all medical information about a patient. The term now refers to a partnership approach with families to provide access to quality health care in a cost effective manner in the primary health care setting. The Medical Home Model is used to explain the concept "every child deserves a medical home". The model consists of three components:
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the Foundation, which represents the Family-Professional Partnership;
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the Critical Supporting Elements, which reflect the delivery of health care based on standards developed by professional organizations;and
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the State-Specific Enhancing Elements, which represent strategies developed by states and territories to implement the program.
Over two-thirds of the U.S. states and territories are promoting the Medical Home Model with various strategies and approaches. The Illinois Medical Home Model describes the many initiatives that are being employed in Illinois to promote the Medical Home Model.
What does it mean when a family says they have a Medical Home?
The Foundation of the Medical Home Model represents the
Family-Professional
Partnership and the core of a health care delivery model. The
relationship between the child and his/her parents/guardians and
their primary care physician can be described in the following way:
The primary care physician and other health care providers:
- Know the child's health history.
- Listen to the parents' and child's concerns and involve them in decision-making.
- Share a trusting, collaborative relationship with the family.
- Treat the child with compassion and understanding.
The parents and child:
- Are comfortable sharing concerns and questions with the child's primary care physician and other health care providers.
- Routinely communicate their child's needs and family priorities to the primary care physician, who facilitates communication between the family and other health care providers, when necessary.
What does it mean when physicians say they provide a Medical Home?
The critical supporting elements of the Medical Home Model are based on recognized standards of child and adolescent health care and documented in policies and best practice guidelines by recognized professional organizations like the American Academy of Pediatrics and the American Academy of Family Physicians. This component explains what it means when physicians say they provide a Medical Home. These health care standards are outlined in the Recommendations for Preventive Pediatric Health Care established by the AAP and Bright Futures initiative established by the federal government.
In addition, the Medical Home Screening and Surveillance Program is a 5-year cooperative agreement between the American Academy of Pediatrics and the National center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) that promotes the integration of public health newborn screening and developmental screening into the medical home through education of AAP membership; information dissemination at the community, state, and national levels; and collaboration with the Academy of Family Physicians. These standards of pediatric health care are the basis for primary care physicians to provide care that is: accessible, family-centered, comprehensive, continuous, coordinated, compassionate and culturally competent.
Accessible Care Resources: Access to Care, Unmet Health Needs, and Poverty Status Among Children with and without Chronic Conditions. Ellen Johnson Silver PhD, Ruth Stein MD; Ambulatory Pediatrics:Vol. 1, No. 6, pp. 314-320. Americans with Disabilities Act (ADA)
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Accessible means that care is provided in the child's community and that all insurance is accepted including Medicaid. Accessibility is often a major challenge for children with special health care needs and their families. Accessibility does not just refer to the hours that an office is open and the provision of after-hours coverage, but also to geographic location, transportation availability and physical access to the office for a child in a wheelchair. For instance, a child may only live a few miles from their physician’s office, but not be able to get there because public or private transportation is not available. A family may also have difficulty with access because providers enrolled in their health plan are not available in their community. Local and state initiatives, such as the KidCare Outreach Program and the State Title V Children with Special Health Care Needs (University of Illinois Division of Specialized Care for Children-DSCC) are available to primary care physician offices in Illinois to help address the access issue overall.
Characteristics of care that is accessible:
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Family-Centered Care Resources: Family Centered Care for Children with Special Health Care Needs Family Centered Care: Questions & Answers
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Family-centered care recognizes the family as the constant in the child’s life and the need for the family to be well informed in making decisions about the child. Family-centered care is a philosophy of care that is based on the following principles:
In family-centered health care:
- People are treated with dignity and respect.
- Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming, useful and understandable.
- Individuals and family members build on their strengths by participating in experiences that enhance control and independence.
- Collaboration among patients, families, and providers occurs through policy and program development, professional education, and in the delivery of health care.
Family-centered health care systems recognize that the child and family are at the center, and the system is there to provide for them. Embracing a family-centered approach means believing that families want the best for their children and are their constant. Finding and recognizing family strengths is of the essence, as problems are often easy to find but solutions are not.
Characteristics of care that is family-centered:
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Continuous Care Resources: Recommendations for Preventative Pediatric Care (AAP) Emergency Information Form for Children with Special Health Needs (AAP)
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Continuous care assures continuity for the child and family and smooth transitions when change is needed. Continuous care is important for children with special health care needs who often rely on emergency rooms for their episodic care. A special history form specific for emergency care is available for children with special health care needs that documents a summary of pertinent medical information about their chronic health conditions. This type of background information can be invaluable in treating an acute problem in a child with chronic health conditions.
All too often, their chronic care and wellness needs frequently never get addressed. Continuity of care not only includes the scheduling of sick visits, but also chronic care coordination and preventive care visits. Providing immunizations is a basic preventive care measure that should be strongly emphasized to all parents. In the Medical Home Model, the physician will provide care to children with a wide range of health care conditions. Continuity of care also provides opportunities to assist families at times of change and transition.
Characteristics of care that is continuous:
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Comprehensive Care Resources: Child and Family Connections in Illinois Illinois
Office Based Physician Education Programs (Illinois AAP): Developmental Surveillance & Screening of Infants & Young Children (AAP Policy) PEDS: Parents Evaluation of Developmental Status ASQ: Ages and Stages Questionnaire Screening and Diagnosis of Autism First Signs: Autism Spectrum Disorders Illinois Practice Based Developmental Screening Education Program: STEPPs
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Comprehensive care means that the full continuum of preventive, acute and chronic health care is available 24 hours a day, 7 days a week. It not only refers to the management of primary, chronic, preventative, and tertiary care but also to education, mental health and community referral needs. Having a working knowledge of local, state and federal programs and resources for children with special health care needs significantly helps primary care physicians in being able to provide a "medical home".
For instance:
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having a working relationship with the local Early Intervention office (i.e., Child and Family Connections in Illinois) can help a family who recently had a baby with Down Syndrome get off to a healthy start.
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Knowing local school administrators and other key staff can help a physician assist a family with a child newly diagnosed with juvenile diabetes adjust to a school routine while learning to manage their illness.
An important component of comprehensive care is developmental screening. A survey conducted by the Unmet Needs Project of the University of Illinois-Chicago and the Erikson Institute was sent to over 2,400 Illinois professionals including pediatricians, family physicians, child care workers, early intervention professionals and others.
The survey results showed that less than 36% of pediatric and family physician practices utilized commercially available developmental screening tools. Barriers to screening included lack of time, staff, and reimbursement. Providers also reported parents having difficulty accepting their child may have a delay and also accepting the referrals that may be needed for their child.
To promote comprehensive health care, the Illinois Chapter of the American Academy of Pediatrics (ICAAP) has developed several office-based education programs that include developmental screening and other critical topics such as asthma, tobacco cessation, and immunizations. These programs reflect best practices in each topic area and are models that have been shown to improve both medical and psychosocial outcomes and decrease overall health care costs.
Each of these office-based programs is presented by trained pediatricians and provides varying amounts of free CME credit, depending upon the program's length. For more information or to schedule an office-based program for your office staff, go to the ICAAP web site.
With the incidence of autism currently at 1 in 250-500 children, early detection and referral to early intervention programs is critical. In the recent State and Local Area Integrated Telephone Survey survey on Children with Special Health Care Needs, only 5% of families and adolescents felt that they received adequate information about transition. For these reasons ICAAP is planning future office-based educational programs on early detection of autism and transition to adult health care.
Characteristics of care that is comprehensive:
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Coordinated care assures that families are linked to other needed service providers, including specialty physicians, therapists, support services, educational services, and other community-based services. All services can be in place for a child, but if they are not linked through communication, much will be lost. Information needs to be shared freely, with the family’s permission, among all professionals involved with the child.
For instance, if a child is receiving early intervention services, efforts must be made to assure the primary physician receives the initial evaluation and progress reports so that appropriate medical decisions can take place. The "medical home" serves as a centralized source of information about the child and facilitates coordination of services.
Liptak and Revell (1989) have described the following components of case management that reflect the competencies for good secondary level health services:
" Comprehensive case management includes identifying and assessing the needs of children and their families (needs assessment), planning and arranging for medical and non-medical services (comprehensive care planning), facilitating and coordinating services (including the training of community providers), monitoring services and patient progress (follow- up), and counseling, educating, training, and supporting parents and their families (empowerment). The successful implementation of case management requires knowledge about the patient and his or her family as well as the systems involving them."
Care coordination can be strengthened and made clearer to the family if the physician provides a written Care Plan developed jointly and shared with the family. The Plan should reflect the needs and priorities of the child, as perceived by the parents, and address all of the necessary medical services that require future attention or follow-up. Short-term and long-term goals, with detailed plans for follow-up and reassessment, should also be taken into account. The Plan should be continuously updated, as changes occur, and shared with all of the Medical Home Team members coordinating or providing care for the child. Due to time and cost constraints, implementing a process like this can be perceived as a major barrier for many physicians.
The Physician's Guide to Caring for Children with Disabilities and Chronic Conditions, edited by Robert E. Nickel, M.D., & Larry W. Desch, M.D., provides a list of downloadable resources and template forms for developing coordinated care plans for many chronic health conditions.
DSCC has developed a Coordinated Care Record to help families document and organize information for their child with special health care needs. It can also be used to help bring together and coordinate the many services and providers of care that are involved in the child's life.
One important and unique component of care coordination for children with special health care needs is the transition from adolescent health care to adult health care. Public Law IDEA states that:
"transition services means a coordinated set of activities for a student with a disability that is designed within an outcome-oriented process that promotes movement from school to post-school activities, including post-secondary education, vocational training, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation."
This law omits an important transition component for adolescents with special health care needs: health care services. Assisting adolescents with special health care needs to make the transition to adult health care must be coordinated by the Medical Home Team, which includes the youth and his or her family. ICAAP has published two brochures; one for assisting physicians to discuss the issue of transition with adolescents, and the other to assist adolescents and their families to understand the importance of starting early to prepare for adult health care. Medical Home training programs sponsored by the AAP and Shriners Hospitals include a training component on Transitioning to Adulthood.
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self-care activities and knowledge of independence skills; these areas both relate to developing independence in health care management;
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promotion of socialization and participation in clubs and activities;
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raising the level of awareness and increasing the knowledge about laws pertaining to young adults with disabilities;
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access to information and resources that will promote planning for the future and foster independence.
The DSCC web site has many additional transition resources available.
Characteristics of care that is coordinated:
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Compassionate care demonstrates concern for the child and family without being judgmental. Breaking bad news to a family is one of the most challenging things a physician must do on a day-to-day basis. Families remember how they felt when they were told the bad news and whether the giver of the news was compassionate in their approach. They remember little of the specific medical details.
Characteristics of care that is compassionate:
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Culturally Competent Care Resources: Cultural Competence (Presentation to the Ambulatory Pediatric Assn., Dec. 2001) National Center for Cultural Competence The Center for Linguistic and Cultural Competence in Health Care |
Culturally competent care recognizes, values, and respects the family’s cultural background. Increasingly, children and families come from other countries and often do not speak or comprehend English. Awareness of one’s own cultural heritage and values is the first step in recognizing and respecting other cultures and their values. Resolution of issues can only take place with mutual respect and learning. A Medical Home provides for the availability of interpreters, translation services and written materials in the languages pertinent to the ethnic heritage of the people and communities served.
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Characteristics of care that is culturally competent:
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AAP Physician Survey: Providing a Medical Home
The AAP conducted a survey (Periodic Survey #44) in 2002 to explore pediatricians' provision of the elements of a medical home to all children - those with special needs and those with no special needs. The survey also explored the effect of various practice characteristics, including practice location, setting and participation in managed care on the provision of these services. The data was collected to help identify areas of focus for educational programs and policy initiatives to improve pediatricians' ability to provide medical homes to all children. This survey revealed:
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Less than one-fourth of pediatricians reported they always contact the school about a child's health and education needs as part of care coordination, meet with the hospital discharge planning team to assist in a child's transition back to the community, and schedule time with the family to discuss the results of a visit to a specialist.
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The frequency with which most care coordination services are provided to children in both groups varies by pediatricians' practice location and setting; however, the proportion of patients in managed care had no effect.
- Fewer pediatricians reported their practice provides an interpreter for families for whom English is a second language, has a systematic method of obtaining feedback from patients/parents, and translates written materials into the families' primary language.
- The frequency with which pediatricians reported providing many family centered services varied somewhat by proportion of patients in managed care, pediatricians' practice location and setting.
- While barriers to providing family centered health care services to all children varied by service, overall, the most frequently cited barriers included: lack of time, lack of medical staff to provide the service, lack of administrative support, and lack of community/government agency services in these areas.
State-Specific Enhancing Elements Resources: National Center of Medical Home Initiatives for Children with Special Health Care Needs |
STATE-SPECIFIC
ENHANCING ELEMENTS OF THE MEDICAL HOME MODEL
As previously described, the foundation and supporting elements of the medical home model are common to every state. The foundation represents the family-professional partnership. The supporting elements represent the policies and best practices documented by professional organizations for providing care that is accessible, coordinated, comprehensive, community based, culturally competent and family-centered.
The third element of the Medical Home Model defines the unique activities occurring within each state, district and U.S. territory. The National Center of Medical Home Initiatives for Children with Special Health Care Needs has a comprehensive web site that provides information about the initiatives underway within each state, district and territory in the U.S.
The provision of a Medical Home for children with special health care needs is becoming increasingly recognized across the United States as an important public health objective. One of the goals in the U.S. Dept. of Health and Human Services' "Healthy People 2010" agenda is that "all children with special health care needs will receive regular ongoing comprehensive care within a Medical Home. Title V programs in each state are now required by the Maternal Child Health Bureau to work towards this goal.
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THE ILLINOIS
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The Title V program in Illinois, the Division of Specialized Care for Children (DSCC), has a three-fold approach to promote the Medical Home Model in Illinois:
- Increasing awareness through presentations to families and professional
groups, information brochures for families and physicians, articles
in journals and newsletters, and as a subject for discussion at DSCC
support group meetings.
- Providing facilitators for practices and pediatric/family physician
residency-training programs to develop Quality Improvement Teams and
integrate the Medical Home Model into residency curricula as described
below.
- Integrating the Illinois Medical Home Model within the routine care coordination activities provided by DSCC professionals (care coordinators with backgrounds in nursing, social work, speech pathology and audiology) in the 13 Regional Offices throughout Illinois.
DSCC regional office staff provide care coordination, including financial assistance and health insurance benefits management services, for nearly 25,000 Illinois families per year. The Medical Home Model is integrated into DSCC activities by:
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Providing care coordination with a written care plan for children with special health care needs.
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Ensuring good communications among providers on the Medical Home Team. Parents are given a Provider Notes form for physicians and other health care providers to complete. This information is shared with the DSCC care coordinator who adds the information to the written care plan developed for each DSCC client.
- Approving primary care physicians with training in the Medical Home
Model.
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Reimbursing primary care physicians for care coordination activities, including telephone consultations.
DSCC has collaborated with other statewide partners, including the Illinois Chapter of the American Academy of Pediatrics, Illinois Academy of Family Physicians, and The Ounce of Prevention Fund, to develop an online Illinois Provider Directory database. The directory offers information about the specialties and services provided by pediatricians, family physicians, pediatric specialists, mental health providers, therapists and other allied health care providers throughout Illinois. Online enrollment forms are available for providers interested in joining the free directory.
DSCC has been a strong proponent for assisting private practices and residency training programs in the primary health care setting to develop a quality improvement process. Integral to the process is involving families, working together with professionals, to improve access to quality health care for children with special health care needs. This approach enables families and professionals to assess the entire spectrum of Medical Home components and prioritize improvements for their community. Rather than the state Title V program defining one or two major Medical Home issues to promote throughout the state, this approach promotes individualized improvements in health care delivery.
Quality improvement is a lifelong process. It is often time consuming. However, it is essential to implement the process slowly and conscientiously, with continual momentum and commitment to move forward.
Quality Improvement Team Resources: The Medical Home Index Validation Process Quality Improvement Team Facilitator's Guide Medical Home Indices: Practice Assessment Results
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The Quality Improvement Team
The team structure can be flexible, but should include as a minimum:
- a physician who has an interest in managing children with special health care needs
- a nurse or other staff member who provides some care coordination activities, and
- at least 2 parents of children with special health care needs.
A DSCC Medical Home project staff member provides facilitation for the team process by coordinating meetings, developing agendas and maintaining minutes, and keeping the momentum going so that systematic changes within the practice can be achieved. Physicians and their office staff are often very busy and do not have the time needed to organize quality improvement meetings. Dr. Carl Cooley, director of the Center for Medical Home Improvement, explains that this is "like fixing a bicycle while you are riding it".
One of the first activities for the Quality Improvement Team is to complete two practice assessment tools developed by Dr. Cooley:
These tools are intended for use by practices that would like to candidly assess their current "medical homeness" and then plan a process of change toward a higher level of "medical home" achievement.
This process of practice assessment allows the identification of areas most in need of improvement or areas in which a relatively small change might have a large impact. When the two tools are used together, the areas of most concern to consumers can be targeted. The Indices identify where strengths in the practice exist as well as areas that could be considered for further improvement. The DSCC facilitators have developed a Facilitator's Guide that outlines the procedures for identifying and prioritizing improvement areas.
A presentation that outlines one Quality Improvement Team's practice assessment results demonstrates the value of both the practice and the family indices in providing identification of areas for future improvement. The results provide a starting point for identifying goals and defining the specific activities necessary to effect change.
Why should families be partners with physicians in helping to bring about improvement in quality health care? Based on a survey reported by Liptak and Revell, both parents and physicians were asked what services families most needed. The following table displays the comparative differences in priorities between physicians and parents.
Survey Results: Physicians’ and Parents’ Ranking
of Needed Services
Services |
Physicians |
Parents |
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Respite care |
1 |
9 |
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Day care |
2 |
21 |
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Parent support groups |
3 |
3 |
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Help with behavior problems |
4 |
10 |
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Financial information or help |
5 |
2 |
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After-school child care |
6 |
20 |
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Assistance with physical household changes |
7 |
15 |
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Vocational counseling |
8 |
6 |
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Psychological services |
9 |
5 |
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Homemaker services |
10 |
22 |
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Recreational opportunities |
13 |
4 |
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Information about community resources |
14 |
1 |
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Dental treatment |
16 |
8 |
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Summer camp |
19 |
7 |
Families who participated in the survey listed "information about community resources" as the number one need whereas physicians listed "respite care". Families focused on information and the physicians on services. The important point to remember is that without family involvement, a practice may focus on changes that represent different priorities than those of the parents they serve.
What type of quality improvement changes to a practice are we talking about? There are many possibilities. Here are some examples:
- Since parents are seeking more information about community resources, a community resource directory could be helpful.
- Many parents are seeking medical information about their child’s condition; a lending library might be an appropriate addition to your office practice.
- Access to the Internet with "favorites" highlighted for various medical conditions would be another suggestion.
- An information bulletin board could be hung in the waiting area that lists possible family support group meetings and other announcements of community health-related events.
- A computer database that identifies children with special health care needs within the practice could cue the person making appointments to ask the parent if the child or family has any special needs that the office should address. For example, a child with autism might prefer to be placed in an exam room when they arrive, rather than sitting in the waiting room.
The list can go on and on. The important fact to remember is that these suggestions require the input of families within your practice to identify and meet their relative needs.
The Medical Home is not a destination but a journey one takes with a child and family. A physician who takes on this challenge will meet many barriers but also find allies who will help ease the burden. Many of the barriers can be surmounted by:
- education about chronic health condition management, the role of community and state agencies, school-related issues, and
- reimbursement and practice management strategies.
This journey will also provide benefits for physicians, including increased satisfaction with their role as a physician and a closer relationship with the families they treat.
The Illinois Medical Home Model initiative provides pediatricians and family physicians with a great opportunity to provide "medical homes" for children with special health care needs.
Practices that are interested in developing a Quality Improvement Team can contact DSCC to organize such an activity. There are two main reasons why a practice would want to establish a Team:
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To improve the quality of care, through systematic changes, for children with special health care needs.
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To involve families in the process of making change within the practice. A Parent Partners guide is available to help families better understand their important role in partnering with professionals to improve care for children with special health care needs.
Residency training programs are also interested in integrating the Medical Home Model into their training curricula. The Accreditation Council for Graduate Medical Education (ACGME) is responsible for the accreditation of post-MD medical training programs within the United States. Accreditation is accomplished through a peer review process and is based upon established standards and guidelines. At its February 1999 meeting, the ACGME endorsed general competencies for residents in the areas of:
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Patient care
- Medical knowledge
- Practice-based learning and improvement
- Interpersonal and communication skills
- Professionalism
- Systems-based practice
These competencies clearly fit with the Medical Home Model. DSCC is introducing a series of slide presentations for pediatric and family physician residency programs in Illinois that describe the Medical Home Model and how it can enhance access to quality health care in a primary health care setting. In addition, a Primer on the Medical Home Model for Physicians is available as a CME monograph for residents.
Some residency training programs in Illinois have elected to develop Quality Improvement Teams within their clinic rotations. With this quality improvement process in place, residents will be able to actively participate in the clinic Quality Improvement Team along with care coordinators and family members. The integration of the Medical Home Model in residency training programs and actual participation on a Quality Improvement Team will have a direct influence on how young pediatricians and family physicians enter practice and monitor quality of care for children with special health care needs and their families.
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For more information on how to arrange an in-service on the Illinois Medical Home Model and/or establish a Quality Improvement Team in your practice or clinic setting, please contact Rita Klemm by email (rkklemm@uic.edu) or phone at 800-322-3722. For more information about what other states are doing to implement the Medical Home concept, visit the National Center for Medical Home Initiatives web site. Dr. Carl Cooley also hosts a web site, The Center for Medical Home Improvement, where Medical Home improvement kits and assessment tools can be viewed and downloaded. |
last modified: 6 July 2007