"Coming together is a beginning;

keeping together is progress;

working together is success."

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This quote best describes the goals that families of children with special health care needs want when working with professionals who manage the care of their child. As parents, we want to work together with all professionals to create a successful environment in meeting our children's needs.

The term "Medical Home" refers to a partnership between the Primary Care Physician and families of children and youth with special health care needs. A Medical Home is a way of providing access to quality health care in a cost effective way in your child's primary care physician's office. It sounds good, doesn't it? So, where do I sign up! It doesn't require any additional application to fill out; every family with a child with special health care needs can participate in a "Medical Home". There are no special fees you have to pay. A Medical Home does not change your health insurance coverage. Then you might say, tell me what does a Medical Home mean for my child and family?

First, a Medical Home means a "family-professional partnership" is established with your child's primary care physician. This relationship can best 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 the child's concerns and involves them in decision-making,
• share a trusting, collaborative relationship with the family, and
• 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, and
• 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.

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How does the Illinois Children with Special Health Care Needs Program, called the Division of Specialized Care for Children (DSCC), support this family-professional partnership? With 13 Regional Offices throughout the state that serve over 20,000 families each year. DSCC staff, called care coordinators, help develop a “care coordination plan” for your child. This comprehensive plan is based on what you identify are the needs of your child and the priorities that you feel need to be addressed.

The care coordination plan promotes good communication among the health care professionals caring for your child and you by keeping everyone informed about what each partner is doing. Typically, physicians in this type of partnership have a passion and commitment for working with families and children with special health care needs. You and your child, along with your physician and DSCC care coordinator, create the beginning of this family-professional partnership.

Your child’s primary care provider (PCP), whether a family physician or a pediatrician, usually takes care of your child for such common problems as head colds and earaches; they give immunizations and advise on routine health care problems. Your child’s PCP will work with you, your child, and your DSCC care coordinator to add the “medical details” to your child’s care coordination plan. In other words, for each health care need you have identified for your child, your PCP will suggest and discuss with you how that need can be met.

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For example, you may be concerned that your child has a seizure problem and needs help. Your child’s seizures may be causing learning problems in school, school absence, and behavior problems at home. The PCP may order some blood tests, a brain wave test and refer your child to a pediatric specialist, called a pediatric neurologist, and a behavior specialist, called a psychologist. In this example, the family-professional partnership is growing and now includes the family, a pediatric neurologist, a psychologist, as well as the PCP and DSCC care coordinator. All of the people making up the family-professional partnership can also be called the “Medical Home team” for your child. These two additional “team members” will add their areas of expertise to the care coordination plan. Your DSCC care coordinator can help you identify the members of your child’s Medical Home team and how they contribute to the overall care of your child.

Families can be directly involved in a Medical Home in their primary care provider's office by encouraging the development of and participation in a Medical Home Quality Improvement Team (QIT). A QIT has a physician, an office staff member and at least two families who meet regularly. The reasons for developing a quality improvement team within a primary care practice are:

• To improve access to quality health care through systematic changes for all children, including children and youth with special health care needs.
• To involve families in this process of making change within the practice.

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If you are interested in finding out additional information or learning how to start a Quality Improvement Team in your child’s physician’s office, contact the DSCC Medical Home Team at 1-800-322-3722 or e-mail the team at dscc@uic.edu.

The degree to which all members of the team provide a Medical Home can be called “Medical Homeness”. Let’s look at some of the many elements that can add to medical homeness:

• A primary care provider (your child’s pediatrician or family physician) is available 24 hours a day, 7 days a week. That means you can call your doctor and arrangements are made that your child can be seen or questions answered 24 hours a day, 7 days a week.
• You have a trusting and good working relationship with all members of your child’s Medical Home team. You feel comfortable sharing your concerns about your child and know that the team members respect you.
• The care coordination plan that is developed by all of the medical home team members is comprehensive; the written care plan includes all your child’s needs and how they are going to be taken care of.
• Your child’s care coordination plan should contain a timeline so that immediate needs are addressed as well as future needs, like transition to adulthood. You may need to think about things like health insurance, employment, education (college or vocation), living in the community (by themselves, in your home, etc) and community recreation.
• Communication occurs among all members of the team. DSCC care coordinators can help to make sure that, with your permission, all reports and other information from team members are shared.
• All members of the team show compassion for your child’s problems and sensitivity to your individual cultural background.
• Health care providers (your pediatrician or family physician and pediatric specialists - like the psychologist and pediatric neurologist) need to have offices that are accessible by wheelchair, have office staff who are aware of your child’s special needs, and give you appointments that allow you to express your concerns and have your questions answered.

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All of the above are important parts of Medical Home. The extent to which they are practiced determines the amount of “Medical Homeness” that you and your child experience. DSCC wants to work with all the professionals who make up your child’s Medical Home team so that you experience the maximum “Medical Homeness” in a Medical Home . Changing a little of Henry Ford’s quote:

“ Coming Together is a beginning;

keeping together is progress;

working together,
to establish a Medical Home,
is success.”

Other Medical Home web-based resources:

The American Academy of Pediatrics (AAP) has developed the National Center of Medical Home Initiatives for Children with Special Health Needs web site that provides a wealth of information about the medical home initiative and what each state and US territory is doing to promote the medical home.

The Center for Medical Home Improvement has developed a Parent Partners Guide to help parents (and physicians) better understand the critical role of parent partners on the Medical Home Quality Improvement Team.

DSCC has developed a web-based slideshow to help explain what a medical home is and how it can help to establish a partnership for families and professionals caring for their child. You will need the free Real Player to view the video clips. (The show includes accessibility options for those using screen readers.)

For more detailed information about the Illinois Medical Home Model and to learn more about how DSCC is working with Primary Care Providers to promote medical homes:
Creating a Medical Home: The Foundation for Primary Care

For more information about Title V programs and the services they provide to families and children with special health care needs:
What is Title V and How Can it Help You?

If you are interested in additional information about Medical Home you can contact a DSCC care coordinator at one of the thirteen DSCC regional offices.

developed by:
Bob Cook,
DSCC Family Liaison
rjcook@uic.edu

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