Quite simply we plan to change the way health care is delivered to children with all chronic illness. We intend to achieve this rather grandiose goal by starting small. Currently, we are in the process of sharing our idea and raising awareness of the plight of children with chronic illness. We are clear the current health care system is badly broken and frankly beyond repair. Rather than pump large amounts of time, effort and money into a faulty and ill-conceived model we have decided to create a new paradigm for delivering care that is more child friendly, family centric and cost effective. We intend to build and staff a facility designed to demonstrate and showcase this new model. This small facility will host families in a residential setting for two weeks. In this place the child, the parents and the siblings will get the services they dearly need.

The first phase of our treatment is assessment. The existing health care system is based upon the diagnostic label. At the Center for the Whole Child the system will be based on each child’s unique individuality. We will assess many facets of the ill child including: educational needs, cognition, physical issues, emotional functioning, social influences, spiritual concerns and family dynamics. This process will take most of the first week in residence. The child will be monitored, assessed and observed in a classroom, relaxing with peers and interacting with family members. Treatment records will be reviewed and individual testing will also occur as needed.

This interactive process will be led by a team of professionals who are focused on exploring the uniqueness of each child. The purpose is to reach a shared common understand. Wholeness, not fragmentation drives this process. We are strengths based and use the innate gifts and talents of the child to formulate the path to health.

The same process occurs for the family. We will gather lots of history before they arrive. We will spend a great deal of time with the parents and the whole family to assess their style, strengths, skills and current stressors. Once we understand their story we will use the family’s own preferred style and strengths to plan for how they will manage the enormous challenge of a chronically ill child.

Parents will learn mind-body skills, relaxation techniques and basic nutritional support. Families will participate in group cooking classes and shared meal times. We will teach parents how to advocate for their children’s needs n the fragmented and procedure driven American health care system. Perhaps most importantly, we will provide them an opportunity to enjoy each other and have fun. Unfortunately, this is one of the first attributes of a healthy family to fall away when confronted with chronic illness.

A significant component of our work will involve aftercare and support. We will create a comprehensive treatment plan that incorporates both existing and new information. We plan to stay in touch with each family for two years to monitor progress and problems. Our ongoing partnership with each family will provide them support as well as guide our programmatic continuous quality improvement process. We will utilize the Internet to create online support groups and educational list serves.

To eliminate the fragmentation, stress and chaos of the current system, we must develop a cohesive collaborative team of child and family experts. This group will include an on site child psychiatrist, pediatrician, nutritionist, family system therapist, child psychologist, educational psychologist, physical therapist, master teacher, occupational therapist, mind-body therapist, health coach and adaptive physical education teacher. Adjunct practitioners will be on call to participate in the onsite evaluations and treatment planning meetings. These professional disciplines include orthopedic surgeon, pediatric neurologist, physiatrist, neurophysiologist and developmental pediatrician. Most lab work and tests will occur onsite. Rarely will we have to arrange for a brief local hospital visit as part of the assessment process.

Our ability to assess and treat the whole child will require a campus that includes classroom space, assessment space, recreational play area, family residential space and administrative space. We hope to place our center in a suburban/rural setting with ample room for growth, activities and space to interact with nature. Our initial vision includes three classrooms, each serving eight children, with connected family short stay suites, dining and recreational facilities. We imagine a central administration building for our staff to work. We are developing animation to present you some conceptual ideas about how this might look. Our goal is to find partners who share our vision. We plan to find people who join with us and participate in this process of creation and development.

This facility simply cannot exist in our current health care system. We decided against adapting to a very broken system, one that only partially addresses the needs of children with chronic illness. We have consciously decided to think and operate differently than our dysfunctional health care system. We plan to build something better from the ground up. We will utilize our hard earned knowledge and wisdom we have gained from years of working with children and families. We will harness our passion and frustration to build what should be, not what is.

The only method to initiate this fundamental change is philanthropic support. Our hope is to find a visionary partner(s) who shares our concern and vision. Someone who would like to co-create a model of effective, sensitive and cohesive care for the whole child and family encountering chronic illness. This flagship facility will become a beacon for the evolving treatment of children across the country.

We have found nothing like our concept. Internet searches and countless telephone calls have not turned up a program we could replicate. The Center for the Whole Child represents a coherent and practical vision of the future. Together we can make it happen and reduce needless suffering. We can start today.

We anticipate three specific areas of financial support.

1. Ongoing professional services. Existing fee for service billing for those families with insurance will offset 30-40% of our annual operating budget.
2. Construction costs. Depending on our shared vision the cost of creating a flagship setting capable of creating a powerful and lasting legacy varies considerably. This crucial decision will be made with those who partner with us.
3. An endowment will make the Center for the Whole Child a lasting legacy and evolving center of excellence. Once fully endowed, the Center can operate in perpetuity serving many generations of families in need.

One of our most powerful aspirations is to serve children and families in need equally and without reference to their financial status or socioeconomic status. We believe that the financial faults of our current system must be addressed. Our goal will be to treat every child and every family with compassionate and comprehensive care regardless of their ability to pay. We will demonstrate that it is truly cost effective to provide comprehensive quality care to families with a chronically ill child. This is true prevention. It is our belief that the cost savings of keeping these children out of the hospital, out of the emergency room and enhancing everyone’s productivity will more than offset the expense of this deeply preventative front-end care. Our aftercare system will track those numbers and generate publishable studies to document this.

We have a dream. Although large in scale it is more practical than grandiose. While deeply innovative, it uses existing gems within our health care system. In many ways it just seems like common sense. We need to take better care of children. Everyone benefits. We hope you agree and would like you to join us in this venture of compassion, care and creation.