Services and Program Activities

Have you explored long term planning with the caregiver/adult client about professional development and self-sufficiency?

• “Do you picture yourself back in the workforce at some point? If so, do you have an interest we could explore?"
• Have you considered work training/support or going back to school? You qualify for benefits being a parent. Do you know about Financial Aid?
• Have you thought about establishing Credit or exploring debt relief?
• Does the parent qualify or possibly qualify for DD services or TANF even if they are not accessing?

• Transfer to kindergarten or schools (ex: IFSP to IEP)
  
• Are they able to complete an ASQ and ASQ-SE independently and advocate for needed services?
  
• Can they verbalize the safety issues with the next age/stages?
  
• Example: learning to crawl/walk and needing to babyproof
  
• Transitioning to solids and learning about choking hazards and family style eating
  
• Preparing for the transition to preschool or kindergarten
  
• Do they have family rules and routines established?
  
• Have you explored discipline techniques and what to do when there is conflict?
  

These 5 pieces can be thought of as puzzle pieces that are changing in size at each visit. Using the pieces does not have an order (non-linear), and all the pieces may not be used together at every visit. These pieces are consistently implemented with family empowerment at the core.

Using the 5 pieces of a home visit: in the words of a Babes First! Nurse Home Visitor

Pre-Meeting Check-in

• Appointment reminder
• Home Visitor preparation:
• Chart review
• Gathering anticipated materials –educational handouts, referral forms, HV supplies
• Client screen for symptoms of illness (e.g., cough or sore throat), as indicated by local and state policy for infection control.
  

Check-in Soft Opening

Entering a neighborhood and household is always a time to do a quick and friendly safety check. Usually, this starts by introducing yourself and asking permission to enter or proceed with visit (even if it's implied, and even if you have been there multiple times).  When entering a household, it's always a good idea to greet everyone present. This helps you know who else is in the house, promote community engagement, and can support the client with transitioning into the visit safely.

Set the stage

• Offer non-choking toys, or for older children, coloring or puzzle
• If a TV is on, ask permission to turn it off. Consider using this opportunity to engage in teachable moments, parallel play with the child, and promoting parent/child interaction and bonding. 
• Ask permission and then set out prompts for the activity on the visit schedule, like a baby scale, blood pressure cuff, or educational material you are planning to share. This acts as a visual to identify the next task that is coming during the visit.
• Use the FAN approach
  
• Start with routine opening questions that center the client
  
• Check in about “in the moment" needs.

Case Management/ Care Coordination

After a soft check-in, home visitors may use a variety of technique to keep the visit client centered and conversational in format. This collaborative process of using the nursing process for assessments, planning and interventions is also known as case management, and often used interchangeably with the term care coordination.

Care coordination involves deliberately organizing patient care activities and sharing information among all the participants concerned with a patient's care to achieve safer and more effective care (Agency for Healthcare Research and Quality). Care coordination is identified by the Institute of Medicine as a key strategy that has the potential to improve the effectiveness, safety, and efficiency of the American health care system. Well-designed, targeted care coordination that is delivered to the right people can improve outcomes for everyone: patients, providers, and payers. The Babies First! and CaCoon programs have utilized an approach that incorporates evidence informed Nurse home visiting activities with Targeted Case Management.

“Home visiting activities" is a family centered way we can define some of the nurse case management interventions. These activities can be filtered into three broad buckets: 

• Assessments
• Education, and
• Advocacy 
  

Assessment, Education, Advocacy: These three broad terms are often used to refer to other PHN interventions listed in Figure 1. For more details about specific nursing interventions and evidence that guides these activities, please review Public Health Interventions: Applications for Public Health Nursing Practice. 

Assessment

Every enrolled client needs an initial nursing assessment and plan completed and documented. It is important to note that some assessments, like breastfeeding or environmental exposure, may overlap for your clients. In these cases, an overarching assessment is appropriate, but individual client assessment should also be documented. 

Figure 4 below shows major assessment topics by population groups. Likewise, the Activities Section Table 1 (further below on this page) includes a detailed chart of assessment by population and frequency. Assessments should be done in a HOPE-informed way. 

Figure 4: Major assessment topics by population group

Education

According to Oxford dictionary, education is defined as “an enlightening experience." For the purposes of home visiting, client education occurs during “educational moments" when the client is engaged and participating with the home visitor in learning. The Public Health Nursing Wheel defines some of these moments more specifically as: Counseling, Health Teaching, and Consultation. For instance, Counseling is defined as “establishing an interpersonal relationship at an emotional level, with the goal of increased or enhanced capacity for self-care and coping" and “explores the emotional response to integrating new health information into life's circumstances" (pg. 142). 

Recommended topics to address by population (e.g., pregnancy, post-partum, childhood) are covered in Activities Section Table 1 (scroll down to view table).

Advocacy

Advocacy is defined by Public Health Interventions: Applications for Public Health Nursing Practice manual as the act of promoting and protecting the health of individual and communities by collaborating with relevant stakeholders, facilitating access to health and social services, and actively engaging key decision-makers to support and enact policies to improve community health outcomes. Possible advocacy roles are:

• Accompanying: Speaking with people
• Representative: Speaking for people
• Empowering: Enabling people to speak for themselves
• Mediating: Facilitating communication between people
• Modeling: Demonstrating practice to people and policymakers
• Negotiating: Bargaining with those in power
• Networking: Building coalitions with other individuals or organizations
  

Major components of care coordination involve ensuring that families are aware of services and how to access them. The care coordinator should be familiar with a wide range of community resources, including (but not limited to):

• Primary, secondary and tertiary health care (including mental health and behavioral health services)
• Speech, language, vision and hearing resources; early intervention programs
• Respite care and childcare services
• Financial assistance programs
• Parent groups
• Advocacy groups
• Transportation services
• Local, state and federal offices 
  

Referring families to services involves much more than just giving families a brochure or number to call or a form to fill out. They may need information, support and/or follow up to navigate services and comfortably make decisions about care. In addition, the nurse or CHW need to be certain that the agency to which the family is being referred is the right one to meet the need (are they accepting clients? Are they trauma informed?). More harm than good will be done by referring already stressed families to an agency whose services do not or will not match the need. Provide follow up for families to ensure they are not experiencing barriers in receiving services to which they have been referred. An identification of new barriers usually indicates a need for additional assessment, documentation, and possible change or shift in goals. 

Family Leading

Family leading is at the heart client centered case management for our home visiting programs. This trauma informed approach explores and appreciates the client and family perspective of health and needs. This approach also demands that the home visiting staff and program agency have a practice in exploring and supporting cultural humility and addressing implicit and explicit bias.

Ways home visitors can support clients/families:

• Supporting and advocating for client preferences, such as pronoun use.
• Using strength-based approach and language, like the HOPE framework.
• Learn and strengthen your individual and agency's Trauma Informed Approach with support from Trauma Informed Oregon.
• Stay familiar with National resources for family-centered approaches, including assessments, reports, and approaches.  
  

The major population groups are:

1. Prenatal 
2. Postpartum  (up to one year post birth)
3. Newborn (under 1)
4. Young Child (1-5 years of age)
5. Child/Youth (5-21 years of age)
6. Caregiver 
7. Community
   

Table 1. Activities Table

Additional Health Education Topics and Resources

Working with Interpreters

Interpretation services must be provided to all clients with limited English proficiency. All people acting as interpreters must be certified by the Oregon Health Authority, per House Bill 2359. See this website for more details. A CHW may act as an interpreter at a visit if they are certified and competency validated to do so. Use best practices for working with interpreters: detailed information on best practices can be found at the Center for Excellence of for Immigrant Child Health and Well Being, 9 Best Practices for Using an Interpreter for ASQ, and Association of American Medical Colleges Guidelines for Use of Medical Interpreter Services. 

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Considerations for CaCoon or clients with disabilities and/or special health care needs

This section focuses on some of the unique considerations required for providing high-quality, evidence-based care to this population. The guidance provided aligns with the National Care Coordination Standards for CYSHCN. The National Care Coordination Standards for Children and Youth with Special Health Care Needs (CYSHCN) serve as a critical framework for guiding high-quality care delivery to this vulnerable population. Published in 2020 by the National Academy of State Health Policy, these standards are designed to ensure that care coordination for CYSHCN is consistent, evidence-based, and holistic. They are anchored in foundational principles that emphasize health equity, family involvement, cultural competence, and the use of evidence-based practices. These standards are of paramount importance because they offer a unified approach for healthcare professionals, enabling effective collaboration across various sectors including medical, educational, behavioral, and social services. 

There are 6 Domains:

1. Screening, Identification, and Assessment

   This domain focuses on the early and accurate identification of special health care needs through various screening methods and assessments. It sets the foundation for all subsequent care.

2. Shared Plan of Care

   This domain emphasizes the development of a comprehensive, family-centered care plan that is shared among all stakeholders, including healthcare providers, educators, and family members. The plan outlines the objectives, roles, and responsibilities for each party involved.

3. Team-Based Communication

   This area stresses the importance of effective and open communication among all team members involved in a child's care. It ensures that everyone is on the same page and collaboratively working towards the child's well-being.

4. Child and Family Empowerment and Skills Development

   This domain aims to actively involve families in the care process and empower them with the necessary skills and knowledge to manage their child's condition effectively.

5. Care Coordination Workforce

   This domain deals with the training, skill set, and continuous development of the healthcare workforce involved in coordinating care for CYSHCN. It underscores the need for professionals to be well-versed in best practices and emerging trends.

6. Care Transitions

   This last domain addresses the challenges and strategies involved when CYSHCN move from one care setting to another, such as from pediatric to adult healthcare, or from school to the workplace. It highlights the importance of a smooth and well-prepared transition to avoid gaps in care and maintain optimal health outcomes.

Understanding these domains enables home visitors to provide more comprehensive, effective, and coordinated care for CYSHCN and their families. You can read more in depth about these Standards here.

Core Knowledge 

Home Visitors need not be experts in every disability or chronic condition, but they should be knowledgeable about commonly occurring ones, understanding their potential impacts on child and family development. Home Visitors should know how to connect families with the appropriate specialists and resources.

Understanding the “diagnostic odyssey" 

The journey to diagnose a child's disability or special health care needs varies greatly among families, both in how it begins and how it unfolds. For some, the process starts as early as during pregnancy, while for others, it might occur later in life due to an injury or noticeable developmental delays. This period of seeking answers is often termed the "diagnostic odyssey," a phase that can be emotionally taxing and prolonged, sometimes stretching over weeks, months, or even years. In some instances, families never arrive at a definitive diagnosis. The path of this diagnostic journey is highly individualized; some families may opt not to pursue a diagnosis at all, or to delay the quest for answers until their child is older. Home visitors can play a crucial role in supporting families during the "diagnostic odyssey." With their unique vantage point into the family's day-to-day life, home visitors can offer emotional support, share observations, and provide valuable resources or referrals to specialized services. They can also help families navigate the complex healthcare system by assisting with paperwork, offering guidance on questions to ask healthcare providers, or even attending medical appointments to serve as an advocate for the family. By providing a consistent presence and a knowledgeable perspective, home visitors can help alleviate some of the stress and uncertainty that families experience during this challenging time. Moreover, they can empower families with the tools and information they need to make informed decisions, whether that means pursuing further diagnostic tests or considering alternative support services.

Importance of a “Medical Home" 

The concept of a Medical Home, particularly a Patient-Centered Primary Care Home (PCPCH), is of immense significance for people with disabilities and special healthcare needs. Given the higher frequency of appointments, medications, and treatments required by CYSHCN, a strong, collaborative relationship with a primary care provider is essential for coordinating and managing care effectively. The elements of a PCPCH, such as accessibility, accountability, comprehensiveness, continuity, and coordination, serve to streamline this process and ensure that families receive the holistic care they deserve.

Home visitors can act as crucial facilitators in helping families access and maintain a Medical Home. Because of inequities, economics, and other social determinants of health, not all families will have access to a permanent primary care provider. Home visitors can help identify and bridge this gap for families by participating in conversations about community needs, advocating for more support, discussing obstacles with local health care administrators, and helping reduce barriers to care. To learn more about PCPCH click here. 

Importance of Cross-Systems Care Coordination 

Cross-systems care coordination is essential for children and youth with special healthcare needs (CYSHCN) because their care often involves multiple sectors, such as healthcare, education, social services, and behavioral health. Effective coordination among these diverse systems is crucial for holistic care and optimal health outcomes. It helps to prevent the fragmentation or duplication of services, eases the family's burden of navigating complex care networks, and ultimately promotes a more efficient and impactful approach to care. Home visitors play a pivotal role in this coordination. They act as a liaison between the family and various service providers, helping to bridge gaps in communication and understanding. With their unique vantage point—being familiar with both the family's needs and the offerings of different systems—home visitors can identify potential resources, make referrals, and assist in developing a comprehensive, shared care plan. Through regular home visits, they can also monitor how well services are being coordinated and where adjustments may be needed, ensuring that the child's care remains cohesive across all involved systems.

A child's care team may be diverse, including doctors, therapists, public health nurses, home visitors, case managers, school staff, social workers, interpreters, and others. Given the diversity and potential complexity, effective cross-systems care coordination becomes paramount. You can help families create and manage a care map, which can serve as a visual guide to keep track of all providers involved in their child's care.

Leveling Up with Shared Care Planning 

Shared care plans are pivotal in establishing a structured, yet flexible roadmap for families and professionals who are collectively working to meet the healthcare needs of a child. Unlike other types of care plans, shared care plans are collaborative documents that spell out families' goals and articulate how these objectives will be reached. These comprehensive documents often include key components such as the child's brief medical history, strengths and assets, current and past interventions or treatments, recommendations, preferences, and most importantly, a well-defined plan of action specifying roles, responsibilities, and timelines.

In instances where children may have multiple care plans from different organizations, it's crucial to cross-reference these documents to ensure consistency and avoid duplication of efforts or contradictory recommendations. As a home visitor, you can facilitate this process by asking families for copies of all existing care plans. You have a unique opportunity to identify overlaps and gaps, and to liaise with other service providers to harmonize the various plans. Such coordination ensures a more cohesive, effective approach to care, eliminating redundancies and aligning efforts toward common objectives. If you notice the potential for such alignment, it's important to communicate this opportunity to your supervisors for further action.

Shared care planning, therefore, is not just a document; it is a dynamic process that fosters communication, collaboration, and shared responsibility among all stakeholders. It empowers families and streamlines the care journey, making it a vital tool in the management of children with special healthcare needs. For more information on shared care planning click here.

Transition Support 

Transition support is an essential component of care coordination for CYSHCN. Transition here refers to the crucial shift from pediatric, family-centered healthcare to adult, patient-centered healthcare. This transition process usually kicks off around the age of 14 and can extend through ages 18, 21, or even older. It involves not just changing healthcare providers—from a pediatrician to an adult-focused provider like a family practitioner—but also equipping the young adult with the skills needed to independently manage their healthcare.

Contrary to popular belief, young adults with disabilities don't indefinitely continue to see their pediatricians. Even if they are unable to manage their own care, there will be a point when transitioning to an adult healthcare provider becomes necessary. This process requires thoughtful planning and effort, which is where home visitors play an invaluable role.

Home visitors can start by helping families understand their current pediatric clinic's transition policies. Around the age of 14, families should be encouraged to inquire about the anticipated age for transition and the preparations required. Home visitors can also utilize tools like the transition checklists developed by Got Transition, a part of The National Alliance to Advance Adolescent Health. These checklists can be reviewed periodically to monitor progress and can serve as discussion aids during medical visits.

The Oregon Family-to-Family Health Information Center also provides many resources  for families and professionals navigating the health care transition process. 

Transition support is more than a mere administrative change; it's a complex process that demands emotional, cognitive, and logistical preparation. Your role as a home visitor can facilitate this process, ensuring a smoother, more prepared transition that sets the stage for young adults to take ownership of their health in a new healthcare setting.

Additional Training for working with clients with disabilities and/or special healthcare needs

OCCYSHN developed a self-paced, online course for Community Health Workers, to train them on addressing the particular needs of CYSHCN and their families. Supporting Families: Navigating Care and Services for Children with Special Health Needs teaches the fundamentals of partnering with Oregon families to get what they need for their children's health and development. While the course is part of a larger Community Health Worker program, it is also available as a stand-alone training. While OCCYSHN initially designed it for CHWs, the content is relevant to a variety of professionals who work with CYSHCN, including pediatric care coordinators, home visitors, family navigators, and case managers. If you haven't already taken the course, we highly recommend doing so to enhance your skills and understanding in this critical area. Home visitors interested in taking the course can contact OCCYSHN at occyshn@ohsu.edu to request access at no cost.