From the 2011 Chicago SOFT Conference

This workshop, presented by Larry W. Desch, MD, FAAP Advocate: Hope Children’s Hospital focuses on the need for special needs children to have a Medical Home.

Children with Special Health Care Needs

There are children with special health care needs, who are at an increased risk for or who currently have a chronic physical, developmental, behavioral or emotional condition that necessitates health and related services in kind or degree beyond what children generally require. These children make up 18% of the population, including those with asthma, autism, cerebral palsy, genetic syndromes and many other disorders. Demographically, there are a disproportionate number of older children, boys, children from low income and single parent households and African American children needing a plan for interventions to optimize development and support families.

These children have three times as many days in bed and absences from school than other children. About 11% are uninsured and 6% do not have a medical home, necessary for continuity of care. (Newacheck and Taylor, 1992). The medical home model developed by the American Academy of Pediatrics provides an approach that emphasizes quality, safety and enhanced access to health care in a collaborative approach. A medical home is supported by care that is accessible, family-centered, comprehensive, continuous, coordinated, compassionate, and culturally effective. The pediatrician shares responsibility. This medical service model developed in the late 1990s and expanded and defined in 2002 provides acute, chronic, preventative and end of life care by a team led by the primary care physician, that works collaboratively with the family. Before the 1970s there was a general practitioner or pediatrician. Later, there were family physicians, pediatricians and pediatric specialists.

The more recent, more comprehensive model of a medical home for the child and family includes connections with medical specialists, educational services including Early Intervention, mental health services, financial assistance, parent support services, and religious or spiritual support.   The medical home model takes care of both the whole child and the family, so the child can be best supported.

Being Accessible

Being accessible means philosophical accessibility in which the needs of all patients and families are met. This includes geographical accessibility, so care is provided locally. This also includes financial accessibility with all insurance including Medicaid accepted with changes in insurance accommodated. Being family-centered means recognition that the family is the principal caregiver and the main strength and support for the child.

Physicians acknowledge that parents are the experts when it comes to their children and an important source of information about their children. They join, even lead health professionals in making decisions. It is critical that complete, unbiased information is shared continuously with the parents, who are an integral part of the team. This means that information available to physicians should be readily available to parents.

Continuity means that the child has the same health care professionals from infancy through adolescence. Pediatricians are available to assist with such transitions as hospital to home, home to school, school to job or independent living and from primary to secondary to tertiary medical care.

The Medical Home Model

The medical home model includes comprehensive care, including preventative and primary care by pediatricians with knowledge of the full range of health problems in children. The pediatricians are knowledgeable about resources within the community. They are able to provide illness or emergency care 24 hours a day, seven days a week.

It is important that care be compassionate with concern for the child and the family being expressed and demonstrated by all health professionals. Pediatricians must respect the values, beliefs and behaviors of the family and both actively listen to family members and validate their feelings. There must be coordinated care, linking families to appropriate support, including both educational and community based services. Information from service providers should be centralized, and primary care pediatricians must effectively communicate with all the service providers listed on the child’s written care plan.

Pediatricians must be culturally effective, including recognizing, valuing and respecting the family’s cultural background, providing materials in the family’s language and providing translation services as needed.

Pediatricians must share responsibility for the child’s care. Each must accept responsibility for the services provided. Pediatricians should both maximize quality of care, while minimizing cost, ensuring that all needed services are delivered, while avoiding duplication of services.

The Primary Care Managing Physician

The primary care managing physician strives for a trusting collaborative relationship with the family. He or she develops an overall management care plan during a care coordination process that considers the priorities and needs of the family and involves  Title V consultants. The primary care managing physician authorizes all referrals to pediatric specialists and coordinates other needs and services. The secondary care managing physicians manage care and problems within their specialty, including referrals for evaluation and management of services.

Each develops a management care plan within the specialty, which includes family priorities and needs and Title V consultation. The specialist may request that some more routine aspects of care be monitored by the primary care physician, such as drawing blood. In Illinois there are also pediatric facilitators for telephone consultation to offer advice and enhance the primary care physician’s ability to manage children with special health care needs.

The vision of collaborative care is important, because it ensures that family members are active participants in the planning and implementation of appropriate therapies and medical services of the highest quality possible. Families are an essential, active part of the process. There is a reason for this. Collaborative care and shared responsibility lead to optimal developmental outcomes. This includes establishing and maintaining meaningful relationships between patient, professionals providing services and family members, gathering experiences,  expanding knowledge and carrying out routines to enhance development and maintain health. Family members who are involved in determining the best treatment plan are more likely to be involved in carrying activities with the child.

The goal of the medical home model is to achieve the best functional abilities of each child. The competencies hoped for include independent mobility, functional self care, interactive communication, acceptable social behavior and emotional stability. The outcomes of medical and therapeutic intervention activities must be functional skills that are important to the family and to the child’s development.

The medical and therapeutic intervention activities should be part of an organized, single, comprehensive plan of the child’s care. This plan must include written home instructions for activities to be done by the family daily. Providers working together will avoid duplication of services or gaps in what is provided. Monitoring the interventions and measuring outcome regularly will assure that the prescribed activities are achieving the desired outcomes.

Guiding Principles for Therapy Services

There are guiding principles for therapy services. All therapeutic intervention strategies should include an educational focus that supports the family in facilitating social interaction, curiosity, exploration, learning and autonomy. The inclusion of specific therapies in the intervention plan should not be based only on the medical diagnosis but should take into account the individual child and family. Also, the frequency of therapy should not be linked to the severity of the child’s impairment. More is not always better.

There is a difference between habilitation and rehabilitation. Habilitation means therapy so children are supported in developing new skills they never had before. Rehabilitation is regaining skills the child once had. Habilitation recognizes that developmental progress will occur spontaneously with maturation. Therapy sessions with reinforcement at home will support the developmental process.

Three Models of Therapy

There are three models of therapy: direct therapy, monitoring, and consultation. Direct services includes one-to-one interaction with specialized techniques and approaches that occur more than once a month. This would be the time the child spends working directly with a physical therapist, speech pathologist or occupational therapist. Monitoring, which occurs once a month to twice a year includes periodic evaluation and checking the home program to ensure optimal participation and developmental gains. Consultation is evaluation and advice focusing on a specific problem. This is a one time interaction, usually between professionals.

Several factors influence the interventions provided, including the child’s age, specific medical or health conditions, the overall developmental status of the child, specific functional deficits, the knowledge and experience of family members and the family’s resources. All interventions should be family-centered with family members encouraged to participate in all the decisions regarding the care and treatment for their child.

The priorities for the interventions should be defined by the family. It is critical that families choose what will be done, because the intervention process is enhanced through their direct and active participation. Success comes through the efforts of the family members engaging the child to carry out what is introduced in therapy sessions. Interventions are directed at the family unit, not just the child. Early Intervention, the educational program that focuses on skills that typically developing infants and toddlers learn in the first three years of life, is available for children from birth to age three, who currently have diagnosed disabilities or are at risk for developmental delays. Early Intervention has an Individual Family Service Plan with the child part of the family. This same inclusive, collaborative model works well for medical care, as well.

Sometimes, additional intervention services are considered. At that time questions should be asked before new services are provided: What results are expected from the additional intervention? What factors influenced the team in deciding that additional intervention is necessary? What will new therapists be providing that current therapists cannot? The current service plan should be the context in which new services are considered in terms of priorities, feasible scheduling and the child’s developmental level.

The intervention team and not any one individual should determine if additional services are added to the plan. The additional services should be added after determining why the child is different from other children with similar delays or diagnosis and therefore requires different intervention. Alternative resources should be explored to support the new services. An example might be hippotherapy for muscle and postural control, socialization and stimulation, for which grants from community programs might be available.

Success of Children with Special Health Care Needs

The success of children with special health care needs depends on service providers and families working together as a team, all communicating openly to develop, carry out, monitor and adjust medical and therapeutic interventions. It is important that all medical and service providers be sensitive to and respectful of the cultural, social and personal needs of each family. The key participants are family members and the primary care providers. The service providers help parents and caregivers learn creative ways to include developmental activities in the daily routines of their children.

This is an educational model in which therapists model interventions with the expectation that the child will continue to work on the skills throughout the week. Functional improvement cannot occur during therapeutic sessions alone. It occurs through seizing opportunities to modify behavior throughout each day, through repetition, practicing developing skills in new contexts and with different family members.

A child who might show some reluctance to engage in new activities, stretching or strengthening routines, walking, fine motor activities or using an augmentative communication device during a half hour with a therapist, might readily engage when the same skill or therapy is incorporated into play, turn taking games, leaving a room with a sibling, or other routine activities at home with family members. In the right context skills can be practiced without the child feeling burdened. Skills practiced throughout the day develop faster, meaning new skills can be introduced sooner, which means competence grows.

Working Collaboratively

Working collaboratively, with family members learning from therapists and taking responsibility for on-going therapeutic interactions, will foster development in children with trisomy and other disorders. The medical home is important in helping each child attain optimal developmental gains and in strengthening the family unit, so optimal support can be provided for children with special health care needs.

The medical home model allows for the physician to address acute and chronic health care issues common to children with chromosomal anomalies. Team members promote the therapeutic interventions provided to enhance both development and the ability to engage with others.  This enhances the child’s quality of life.

With the medical home model in which parents have an important voice in medical interventions, parents are less likely to feel at odds with the medical community and more likely to feel competent to carry out therapies at home. It may be that even without a medical home model in place, knowledge of the program might help parents insist on being given access to their child’s records, persist with demanding greater collaboration and accept the importance of reinforcing therapy at home.

More Information

Please visit to find out more about medical home initiatives for children with special needs. The goals and objectives of the program are to contribute to changes in and development of policies that benefit children with special health care needs; to increase knowledge and skills among health care professionals, who care for these children; to demonstrate outcomes of the medical home concept; and to support and expand a national network of child health professionals, who provide and who are involved in efforts to ensure that children with special health care needs have access to a medical home.

Participants in Dr. Desch’s workshop were given forms, including notes to take to a doctor’s visit (what brings you to the doctor today, how long has this been a problem, what has been tried, etc.), notes for the parent to take after the doctor’s visit (what was discussed, what we will do, when will a change be evident, where information can be obtained, etc.), a form for the doctor to complete when meeting with the child and parent, and referral forms. All forms are available at the medical home website.

This workshop, with information adapted from material by the American Academy of Pediatrics and Andrew Morgan, MD, a pediatrician specializing in neurodevelopmental disabilities, was informative, applicable to SOFT families and both thought and action provoking. It provided details about, rationale for and examples of a collaborative model that should be helpful for families with children with trisomy.

Dr. Larry Desch directs both the clinical and educational aspects of Developmental Pediatrics at Hope Children’s Hospital, a teaching affiliate of Chicago Medical School, where he is also a clinical associate professor. His publications have focused on growth assessments of children with special needs, developmental neurophysiology and the use of assistive technology. He has been actively involved with state agencies dealing with children with disabilities and special health care needs. Within the American Academy of Pediatrics, Dr. Desch is involved with the development of the Medical Home for Children with Special Health Care Needs project and is involved with work with autism.