A Promise of Resilience

A Promise of Resilience – Children with Special Health Care Needs

• Public Health’s Role
• Discovering Protective Factors
• Creating a Healthy Bio-Psycho-Social Balance
• Primary Prevention via a Multi-System Enhancement Model
• A Public Health Policy and Language That Works
• Optimizing Quality-of-Life Outcome Measures
• Negotiating Resources for Resilience
• Historical Documents in ABLE’s Development
• Family Health Promotion Plan
• Quality-of-Life Outcome Measures Form
• Negotiating Resources for Resilience Handout

Public health is charged with promoting whole-child/family health. It works in partnership with extended families and the community using available strengths and resources. Public Health will improve health care by going beyond medical care and seek equity in access and quality of health.

Public Health is in a Unique Position

• Public health professionals have the critical tool of epidemiology and evaluation. They search for what actually works to improve client outcomes in the broad scope.
• Public health educates the community, promoting health and disease prevention.
• Public health is ideally suited to oversee and coordinate non-traditional approaches that improve health behavior and prevent violence and abuse that can often be experienced by disabled victims.
• Public health has the tools of risk-determination, community observation and public policy interface at their disposal. These all contribute to better understanding of the complex and interactive factors in the lives of special-needs children from low resource families.

Using Public Health to Help Families

The public health advantage described in following pages includes a resource and social support model, which is proactive and family-needs driven. It provides a multi-systems appraisal that assesses current client-family capacities, styles, and gifts, as well as challenges and deficits. It elicits personal resources and identifies social networks. It promotes health and education and is family advocacy and children’s rights-based. This model has a strong emphasis on coping, and solutions, as well as traditional problem finding. It is a multi-systems approach.

A Multi-System Approach

Multi-System interventions are directed toward helping people with stressors on one side, and strengths and resources on the other side. The focus is the whole-child/family in its contextual environment, including extended family and the social community. This approach is used by the ABLE Team. (The ABLE acronym represents adapting and activating healthy behavior from the child’s learning environments.) This approach can also be used in other health care settings.

The Goal of This Multi-System Approach

With a need for multi-faceted Multi-System intervention, direct clinical services are focused more on a client within a complex-family context. These services need to be coordinated with currently involved personnel and other available resources in the community. A primary goal for this more complex clientele is ample support and advocacy for the family from the community. This is done through collaboration, education, and coordination of resources.

Advantages of a Multi-System Approach

• When using this approach help-seeking families are highly regarded and enabled within a context of cultural sensitivity and respect. ABLE’s attempt at a comprehensive approach engineers for the client/family’s gaining more of a sense of connection with the community than is generally thought possible with the conventional or traditional single-emphasis programs.
• This systemic public health model can be extended from the individual client to his or her family and then onto the community setting as a whole.
• The client/family is viewed as potentially an enhancing and strengthening contributor and vice versa.
• This is a team approach that also provides a protective mechanism for the team’s individual member. It guards against the inevitable encroachment of burnout and vicarious trauma that can be created by constant exposure to the often-overwhelming personal problems of needy families.
• Administratively, shifting to a teaming approach can take place with no increase of funding or personnel. Services are extended from the individual and family to groups of individuals by care-teams created in community settings. These settings include public schools, physicians, public service providers, parent advocacy groups, and other organizations. The domino effect can then touch the lives of many other children and families.
• The distinguishing benefit of this kind of community health practice is that client-family complexity is dealt with more holistically, comprehensively, and with improved social networking.

Comparing Multi-System with Traditional Approaches

The traditional privatized delivery approach is generally focused on single problems and unlikely to deal with the social determinants of these problems. A sobering reality is that in Utah alone, there are some 70,000 children with disabilities. Problems of complexity in these families will not go away with mere payments and guaranteed care access. Interventions for such special-needs youth, from overloaded families generally lacking support, often require coordinated and ecologically-based services. These children require a whole-systems model to affect a positive, functional and whole-life outcome. A traditional, private-delivery care system needs to be complemented by non-traditional approaches when treating high-risk families, in order to have a successful delivery of services.

Discovering Protective Factors

Deficits in children and youth at risk can be buffered by protective interventions early in life that are based on assets already present in the child and her environment. We value especially the social capital created by the power of social networks and relationships.

Many school-age children with disabilities operate at levels below their chronological age. While they may have age-appropriate cognitive and physical strengths, they often suffer from learning- processing deficits, arrested emotional development, and poor social integration. With the combination of numerous biological, psychological, symptoms possible, these high-risk children often have few resources and exhibit multi-determined etiologies. Clearly, the traditional narrow-focused treatment approaches work poorly for these children because of the wide range of problems involved.

Utilizing the assets in the child’s surroundings in a broader and more innovative approach can help buffer the deficits. For example, capitalizing on existing strengths in a special-needs child’s life, such as the life forces from cultural traditions, a positive temperament, a good teacher, an involved grandparent among many other possibilities, will likely reduce that child’s level of risk.

The ABLE team believes that early interventions in a child’s life are likely to lead to more healthful lives if based on assets already present. For example, a cohesive family can be an effective buffer for a child who is socially ostracized from peers because of his or her special needs. The absence of risk factors in a child’s surroundings can be perceived as a reservoir of adaptive health from which to tap for positive change. A traditional deficit model of intervention usually looks only at vulnerability; it doesn’t take advantage of the complementary resources in the lives of special-needs children. On the other hand, such protective features will be seen in a bio-psycho-social and cultural assessment, and alternatives to problem stories can also be drawn to activate these lifelines.

Creating a Healthy Bio-Psycho-Social Balance

Good health, especially in children and youth at risk, requires an integral balance of mental, social, physical and other components. Stories of a child’s positive experiences and accomplishments can develop understanding, beliefs, and a sense of worth and meaning.

Illness is more than the lack of physical health. Rather, it is a disturbance of the balance of mental, social, and physical relational components within a whole. For many years, the World Health Organization’s definition of health has included the relational components of mental, social, and physical well-being. In the late 1970s, George Engle promoted the idea that good health is a state of bio-psycho-social and cultural integrity. He maintained that the determination of health includes sufficient psycho-social functioning along with physical components. Health is as much a social-political-cultural construct or combination as it is a biological one. People live and experience both illness and well-being around subjective interpretations, which compose the social, emotional and spiritual aspects or stories of their life events making for a more full description of their lives.

Preferred stories of people’s lives include their hopes, dreams, wishes and desires, and give purposeful direction. These stories are felt in the accomplishments of day-to-day functions in being loved and having a sense of belonging with friendships, and in having productive and satisfying work, school, and leisure experience. It is out of bio-psycho-social cultural contexts that people acquire knowledge, skills, and understanding of their religious-cultural history, identity, and a sense of social, economic, and political forces. It is out of these contexts that they develop understanding of the effects of their own agency regarding self-care, nutrition, exercise and body needs. These contexts also include a person’s sense of worth, self-esteem, significant beliefs and meaning systems. They are the origin of a person’s sense of efficacy, empathy for others and social problem solving. All of these protective factors can be mobilized toward successful development and negotiation of a person’s daily life and character. They are foundational assets in primary prevention of stress-related experience, and promote quality of life. They support the will to master and achieve required for many children in the community.

Primary Prevention via a Multi-System Enhancement Model

One of ABLE’s goals is to prevent detrimental secondary consequences for those at risk by going beyond the traditional disease/treatment model. We use powerful and proactive whole-child practices such as discovering and mobilizing often small and resilient moments for everyday use in ways that expand into and impact family and community for greater health protection, resilience, and resistance to adverse conditions.

The ABLE team concurs on the use of both potentially-curative biomedical understandings, as well as ecological habilitative practices mediated holistically. This invites indirect and contextual approaches to helping. Some of these non-linear or whole-child practices include concepts that secure relatively small inputs into the system, but which impact large outputs, outputs which in turn lead to even greater health protection, resilience, and resistance to adverse conditions. ABLE’s practices extend beyond disease treatment models to practicing primary prevention interventions. This is done by mobilizing ways that protect existing resources, by promoting new resources, which by preventing detrimental secondary consequences, and are further developed under appropriate public health practices.

ABLE focuses on positive and solution-generated factors contributing to health, rather than solely on conditions fostering disease. Aaron Antonovsky promoted ideas on the social origins of wellness as a continuum between health and disease. So we ask, in spite of universal pathology on one side, “What well-being factors and positive forces of life enable some populations to survive, and even thrive, on the other wellness side of the continuum?” Part of the answer is in the use of proactive, multi-faceted and powerful ideas promoting relational social capital and environmental interventions. Other factors include competent collaboration toward positive change-based outcomes which encourage the use of inquiry, with open-ended questions, metaphors, and the use of imagination. A multi-systems approach encourages ideas of positive feedback and the recognition that many pathways can lead to a similar end. It recognizes that the whole product or sense of being is more than the sum of the parts. These ideas all belong and are brought together under the umbrella of public health.

Illness and Repair vs. Promotion and Enhancement of Wellness

Many children with health and developmental-related illness and disability come from complex and multi-problem circumstances. Traditionally, clinicians who are trained more in pathology and Western European medicine problem-solve, using logical methods in search of pathology.

However, it is also from complexity and differences and the diversity of the parts, that alternative solutions to problems also arise. In fact, such differences should be considered potential resources; they can provide solutions for existing deficits and create both new and strengthened abilities aside from the problem. Wellness promotes health, optimizes development, and evokes hope and confidence.

One of ABLE Program’s major wellness goals is to discover and mobilize resilient moments for everyday use. Discussion follows on ways to motivate a family to not only utilize external resources, such as the Directory of Utah Resources, but to also recognize the child/family’s internal natural resources, and to highlight positive strengths of the body, mind, and heart to better encourage the use of available community resources.

A Public Health Policy and Language That Works

Public health’s broad mandates include responsibility and advocacy for those with high risk, chronic and disabling conditions. This requires coordinated, comprehensive, and culturally-sensitive community care in non-traditional, innovative and prevention-based treatment approaches.

Public health, with its mandate of protection, prevention, and promotion, has a large responsibility in a context of addressing chronic and disabling conditions. The public health aim is to ameliorate or eliminate established risks to the population by promoting a strong emphasis on family and community care that is coordinated, comprehensive, and culturally sensitive.

The authors of this paper suggest that non-traditional approaches may be necessary when working with special-needs children living in families that are overloaded with problems and lacking in support. The community can be served more effectively by adopting innovative and prevention-based treatment approaches which, in alignment with the Department of Health, will seek to protect existing resources, prevent secondary detrimental consequences, and promote protection factors. Following are key strategies and resources for building in the community:

• Multi-disciplinary circles of care-teams, such as many service teams, child study teams and wrap-arounds, provide a whole-child assessment which is family-centered, specific to the education of the client-family and in the context of primary medical care. The end result is aimed at affecting a “goodness of fit” between the child, school, family and the health community.

• Such teams discover and make use of latent strengths in the child’s current circumstances, to include family, heritage, culture and other previously-mentioned assets, to build a more healthy environment for the child.

• Able has used its Family Health Promotion Plan, which is an identified composite of individual, family, school, and community needs and goals. Intervention is directed at integrating the various biological, psychological, and social-functional dimensions. It looks for family-owned and family-conceived solutions (arranged from left to right on the page). The first of these on the left demonstrates more prevention and primary care, whereas on the right side there are more tertiary and intense options. For example, with treatment-resistent juvenile diabetes, good medical control would involve interventions in the family domain, on the left side of the FHPP form, that may include more parent time in teaching self-care, thus enhancing confidence. However, on the right side of the form there would be listed tertiary treatments such as increasing insulin. The suggested approach enables the team to think of the child and family’s lifestyles and generative experience as a product of environmental as well as genetic transactions. A person’s development is continually being formed by his or her experience. This health plan could be thought of as a way to evoke resources right from the child and his or her context. It is actually through this plan that community and school resources are identified to the families and encouraged to be utilized.

Optimizing Quality-of-Life Outcome Measures

When families reflect on their changes revealed in outcome measures and scales, they often experience a sense of progress, encouragement, and well being. This in turn inspires in the child such attributes as strength, confidence and self-mastery which can be drawn upon throughout life.

Public health speaks of wellness accountability by demonstrating positive change on behalf of client-families. It is an ethical imperative that the people served consciously perceive themselves achieving a positive difference. If outcome language revealing the contrasting distinction between pre and post measures aren’t used, the outcomes are likely to become obscure and diffuse.

Over the last few years, ABLE Program has been using scales to determine quality-of-life measures, incorporating five subjective units on a scale of 1-10. These five scales include several dimensions of life with variables related to health fitness, and the ecology of child-environment transactions. When reflecting on the scales, families often experience a sense of progress, encouragement and well being. When these transactions of wellness occur, they give strength to the child’s mastery of creative interests, self-help, coping, and relationships in daily living.

Creative experiences and meaningful opportunities are drawn and formed from the local cultural and living contexts of the child, family, school, and community domains (See Family Health Promotion Plan). From this, a positive change in living, if not just a small step for new perception is noted. The special meaning from these changes gives a feeling of power and strength, inspires confidence, and can be brought forth and later drawn upon when needed. Many other possible attributes, such as a sense of empowerment and confidence, contribute major life-giving resources for a child.

These biological, psychological, and social lifelines become accessible to and from the child, family and community by the forces of good fit or congruence, well-being energy, and comforts and routines in everyday life. These lifelines subsequently create momentum for new meaning and positive change. They pertain to the collective, as well as the individual.

Negotiating Resources for Resilience

ABLE Program has an instrument that assesses the effect of multiple interventions on components of adaptive function, well being, and comprehensive quality of life over time, particularly for children in families with multiple health-related burdens. It brings together the transactional assets of the child’s past, with his current strengths and family well-being, and then mobilizes regenerative resources for living solutions.

Whether we are individuals or members of a social group or tribe, we all strive tounderstand the world, and define ourselves around meeting and understanding our needs and goals. By turning these needs into goals, and then achieving those goals, vital capacities are created. Such capacities are a humanistic outlook and perceived strengths around a hierarchy of satisfied needs. Resilience and character is also sensed in a person’s expression of family and cultural identification in the face of adversity. Consequent knowledge of solutions will assure that strong and effective adaptation will result, to include improved wellness, quality of life, progress towards goals, and changed health and developmental status for the patients and their families.

Initially, ABLE Program strives to create a setting for change that includes a collaborative relationship with mutual respect, two-way shared communication with patient satisfaction, and partnered compliance with a culturally-determined assessment and treatment plan. In terms of measurements, the above document (Negotiating Resources for Resiliency) specifies resilient resources stemming from transactional or interactive processes by measuring quality-of-life dimensions. These subjectives scales give evidence to a family’s momentum, the positive direction being taken, and the outcomes of its partnerships with client families (see Quality-of-Life Outcome Measures Form).

Finally, ABLE takes individually the highlighted personal qualities, and deeply-held emotional beliefs that come from identity, relations, and daily experience in the change processes, and measures them on a 1-10 scale. This is a way to gauge the family’s sense of power to make something happen (see Confidence and Progress Scale Form). It is at this point that families receive great strength in witnessing the scores that reflect the progressive strides they have been making.

Able’s Historical Documents Reference

For the past twenty-five years, ABLE Program has been refining its vision of creating ability and resilience for children and youth at risk, and has printed historically corresponding documents in the process to include a comprehensive and organized list of special-needs resources.

• “Adaptive, Behavioral, and Learning Evaluation” (ABLE)
  Clinic Mission Statement, 8/25/86

• Resource Manual for Families with Special Health Care Needs
  Sterling H. Redd, L.C.S.W., 1988, 2004 (updated)

• “Pediatric Developmental-Behavioral Clinics in Salt Lake—a continuing innovation on multiple themes as it relates to disability in the family context and the impact on public and personal health”
  Pediatric Preschool Management Clinic (PPM)
  Adaptive Behavioral and Learning Evaluation Clinic (ABLE), 7/8/93

• “Merging Educational, Medical and Mental Health Services to Ensure School Success”
  Gail Brown, Ph.D. et al, July 1999

• “Engaging Natural Assets to Solve Public Health Problems”
  AdaptaBility in Learning Environments (ABLE)
  Team, December 1999

• “Able Program’s Narrative Solutions Approach:
  An Effective Model for Supporting Families”
  Louis Allen, , M.D. – Gail Brown, Ph.D. – Sterling H. Redd, L.C.S.W., 2000

• “Building Biopsychosocial Lifelines"
  (Adapting Biopsychocultural Lifelines from Living Experiences, ABLE)
  Ison Case Study – Louis Allen, M.D. – Sterling H. Redd, , L.C.S.W., 8/6/003

• Combining Families
  (a personal treatise addressing successful relationships in combined families) – Sterling H. Redd, , L.C.S.W., 2004
• “Early Childhood Separation from Parents”
  (General Guidelines for Emotional Well-being)
  Julia Mathews, Ph.D., 2005