Children with Special Health Care Needs – Annual Report FFY19

In FFY19, the Division of Child and Community Health (DCCH) supported coordinated, comprehensive and family-centered Systems of Care, including implementing and enhancing the National Consensus Standards for Systems of Care for CYSHCN 2.0. The plan included emphases on the Foundational Standards of 1) Health Equity and 2) Family Partnership (Family Participation and Engagement).This effort was designed to align with the DCCH vision to assure a systems-oriented approach to care through: 1) Integration of Services, including enhanced infrastructure for quality care coordination and telehealth; 2) Medical/Health Home Approach; and 3) Transition to Adult Health Care. Specifically, DCCH focused on assuring family- centered care through goal setting approaches; expanding access to care through telehealth; documenting impacts of health inequity and providing recommendations for improvement; building family leadership capacity; expanding access through primary care capacity for treating CYSHCN; and building systems to support transition to adult health care.

Priority Need

Integration of Services (October 1, 2018-September 30, 2019)

This arm of the Integration of Services priority area was built on the Access to Care domain from the Standards for Systems of Care 2.0. Pertinent standards include Access to Care standard number 1: CYSHCN have geographic and timely access to primary and specialty services" and number 4: "Satellite programs, electronic communications, and telemedicine are used to enhance access to specialty care."

SPM 6: Percent of CYSHCN with parents who are very satisfied with the communication among doctors and other health care providers

In FFY19, the Integration of Services priority area focused on two arms: improving staff capacity to provide quality care coordination and improving access to pediatric specialty care through a telehealth infrastructure.

Access to Care: Care Coordination

Communication and trainings for implementation of goal setting and Shared Plans of Care (SPoC)

To increase the quality of care coordination, a focus of FFY19 was on refining the process of implementation for the Shared Plan of Care (SPoC), building on lessons learned from Iowa's 2014 HRSA-funded D70 grant program, "Enhancing the System of Services for CYSHCN through Systems Integration." Efforts focused on goalsetting for all families seen in Child Health Specialty Clinic Regional Centers. A full-time Program Coordinator and dedicated time from a Family Navigator led Iowa's care coordination efforts in order to assure the spread of the highest quality services through a family-centered care team approach. Bi-monthly emails provided staff with updates, reminders, and announcements concerning the SPoC as well as the ACT.md platform. ACT.md is a cloud-based platform, compliant with the Health Insurance Portability and Accountability Act (HIPAA), to promote care coordination through online plans of care. ACT.md connects care teams, promotes family-professional partnerships, enables collaborative care planning, and drives action across Systems of Care for CYSHCN.

Expand the use of the ACT.md platform

ACT.md was used as a platform for centralized care coordination and goal setting until September 30, 2019. DCCH’s contract with ACT.md was cancelled for several reasons, including barriers for staff entering data into the platform, an extremely low family participation rate with the ACT.md interface, and limited outside provider participation.

In preparation for this transition, a similar workflow was built within the DCCH Electronic Medical Record. This produced efficiencies by 1) reducing double documentation of goals by staff 2) allowing families to more easily access their information within their existing University of Iowa Health Care account, 3) increasing cost effectiveness, and 4) allowing for more efficient data collection for goal setting and transition program initiatives.

Access to Care: Telehealth

This arm of the Integration of Services priority area was built on the Access to Care domain from the Standards for Systems of Care 2.0. Pertinent standards include Access to Care standard number 1:

CYSHCN have geographic and timely access to primary and specialty services" and number 4: "Satellite programs, electronic communications, and telemedicine are used to enhance access to specialty care."

Access to pediatric specialty services through telehealth

A full-time Program Coordinator led the Iowa MCH Title V CYSHCN telehealth effort to assure that CYSHCN have timely access to specialty services through telemedicine. Regional Center locations in communities across the state allowed families, especially those living in rural areas, to access many pediatric specialty services without having to travel long distances. Using HIPAA-compliant live videoconferencing, families were connected with specialists from the University of Iowa Stead Family Children's Hospital in the areas of psychiatry, developmental and behavioral pediatrics, neurology, genetics, neonatology, Intellectual Disability-Mental Illness (IDMI) services, nutrition, and psychology. DCCH expanded into two additional areas for telehealth during FY19: Hematology/Oncology and some CHSC ARNP clinical services. The following table shows the number of appointments by specialty:

 

Telehealth Appointments by Specialty    10/1/18- 9/30/19
Psychiatry	1613
CHSC ARNP	765
Dietitian	651
Behavioral Pediatrics	49
Genetics	12
Neurology	9
Neonatology	6
Endocrinology	2
Hematology/Oncology	3
IDMI	5

 

During FFY19, except for nutrition services, telehealth services were all delivered to families through CHSC Regional Centers, with the support of staff including registered nurses, family navigators, and clerical staff at each center. Some visits were also supported by nurse practitioners or social workers. The table below shows the location of the telehealth patient and provider sites. Most services provided by dietitians were delivered directly to patients in their homes.

 

Telehealth patient and provider sites, CHSC FFY19

Investigate and document health equity issues in the context of telehealth services

DCCH worked with an MD/MPH trainee from Iowa’s LEND program on a research project that focused on reviewing existing literature related to health equity issues that might be addressed through telehealth. Although there is limited information on this topic for pediatric populations, several potential areas were identified where telehealth could benefit individuals from a health equity perspective: increased access to subspecialty service in non-traditional places; decreased cost for families due to less travel and lost work time; reduced ED or urgent care service utilization; increased quality of care through coordination with primary care providers; and addressing stigma in seeking care. This trainee also completed a practicum project through DCCH for the University of Iowa College of Public Health’s MPH program that addressed health equity and the delivery of pediatric mental health services. This project is further described in the Medical Home section of this report.

Priority Need

Care Coordination for CYSHCN

NPM 11: Percent of children with and without special health care needs having a medical home

Iowa's Title V CYSHCN program focused medical home efforts on goal-setting initiatives with families and on the dissemination of information about the use of evidence-based screening tools for primary care providers (PCPs). For FFY19, efforts also included two additional areas of focus: the development of family leadership capacity to strengthen family advocacy efforts within Iowa in working with the health care systems; and the development of training and education activities to build the capacity of PCPs to treat CYSHCN within their practices.

Strengthen care coordination for DCCH families by using the ACT.md platform to collect and disseminate goals

Patients and families receiving care coordination or clinical services through Regional Centers were introduced to ACT.md, a HIPAA compliant, cloud-based platform to capture the goals of families and their healthcare team. Staff worked with families to develop and enter goals into ACT.md and invited them to log into the platform to review and share these goals with other providers. In FFY19, DCCH staff entered new goals for 1336 patients. ACT.md was used until September 30, 2019. Patient goals were added to the platform and regularly updated. Other entities involved in a child’s care were often invited to the platform, but outside provider interaction with the platform was found to be relatively low. As noted in the Integration of Services section previously, the contract with ACT.md was cancelled at the end of FFY19 and goal setting initiatives are now documented directly in the patient’s Electronic Medical Record.

Strengthen programs to enhance CYSHCN family leadership capacity and workforce

In FFY19, DCCH strengthened Iowa’s family leadership capacity and workforce through the expansion of the Iowa Family Leadership Training Institute (IFLTI). This program provides training to parents and caregivers of CYSHCN. The goals of this training are to: understand how to work with partners; develop a path to leadership; and discover strategies for advocacy. All training participants are also required to complete a Community Service Project.

In FFY19, there were 13 training participants, including two members of the DCCH Family Navigator Network. Community Services Projects completed by this cohort are listed below:

• Formed the Southwest Iowa Autism Support Group, which planned a sensory-friendly holiday event.
• Researched caregiver resilience and advocated with several providers to implement a caregiver resilience screening tool.
• Created a social media group for gender nonconforming children on the autism spectrum.
• Formed a support, empowerment, and advocacy group for families of children with disabilities living in the participant’s area.
• Developed a “Places to Play” list, recreational areas accessible to children with special needs and their families.
• Developed a Facebook page for families of children with Cerebral Palsy, filling a gap in Iowa.
• Created a resource guide for parents whose premature children are being discharged from a hospital Neonatal Intensive Care Unit.
• Created a plan to provide guidance to school districts on how to consider a student’s IEP when administering a good conduct violation in extracurricular activities.
• Created a plan to make the Home- and Community-Based Services waiver application process more understandable for families who may apply for them on behalf of their children with special needs.

In summer 2019, interviews were conducted to determine the level of growth in leadership and advocacy among previous participants. Pre/post assessment data were analyzed, and a poster was developed and accepted to the AMCHP 2020 conference. Conclusions from this study were:

• Participants learned to recognize and develop their own leadership skills and expertise as parents of CYSHCN.
• Participants gained the confidence and skills to develop community and system-level partnerships. The IFLTI encouraged continuing connectedness among cohorts.
• While family training positively impacts the System of Care for CYSHCN, more research is needed to measure impact over time.

This program also sponsored a series of evening trainings that were held at or in conjunction with CHSC Regional Centers and partnering organizations. The table below shows information about the IFLTI Regional Trainings:

IFLTI Regional Trainings, FFY19

Date	Location	Number of trainees	Topics	Partners
October-18	Spencer	12 trainees, 3 Regional Center staff, 2 Iowa City staff	Family Centered Care, Good Communication	Sponsored by RAP
November-18	Oelwein	14 trainees, 2 Regional Center staff	Family Professional Partnerships, Good Communication	Sponsored by RAP
March-19	Clinton	15 trainees, 3 Regional Center staff, 2 Iowa City staff	Family Centered Care, Good Communication	Sponsored by RAP
September-18--May-19	Coralville	Varied	El Grupo Manantial Trainings, various topics	Partnered with ChildServe to provide monthly trainings to Spanish-speaking parents.
September-19	Independence	12 trainees, 3 staff	Good Communication, Alternatives to Legal Guardianship	MHDS training: Collaboration with East Central MHDS Region and CDD
November-18	Iowa City	20 trainees in three trainings	Various topics	Family Peer Support Specialist Trainings
April-19	West Des Moines
August-19	Coralville

 

Another component of the Care Coordination strategy was the continuation of the Family Peer Support Specialist Training Program (FPSS) that provides comprehensive training for Iowa's family peer support workforce including the development of statewide networks and continuing education opportunities. This program is a collaboration among DCCH, the University of Iowa National Resource Center for Family Centered Practice, ASK Resource Center (Iowa's Family Voices affiliate), and the National Alliance on Mental Illness Iowa. A Family Peer Support Specialist is a parent or primary caregiver of a child with an emotional, behavioral, or mental health disorder. They work with families who also have children with serious mental health disorders. The Title V program provides the infrastructure for this Iowa Department of Human Services funded project as part of a broader Peer Support Specialist training program.

In FFY19, program staff developed a credentialing process through the Iowa Board of Certification based on the training curriculum in collaboration with the Midwestern Public Health Training Center. A comprehensive exam was developed and approved by the Iowa Board of Certification as part of this credentialing for the new FPSS certification in the state of Iowa. Other components of this process include the completion of online and in-person training sessions, including assigned homework, a score of 70% or higher on the exam, and completion of an eight-hour Youth Mental Health First Aid training.

In FFY19, FPSS trained 20 Family Peer Support Specialists and developed a protocol for all DCCH Family Navigators to complete the FPSS certification process. The Family Navigator Network includes 31 DCCH Family Navigators located in Regional Centers around the state. The Network Coordinator facilitates monthly trainings, securing speakers and arranging for FPSS continuing education certificates. To date, 22 Family Navigators have received FPSS certification through the Iowa Board of Certification.

Three in-person training sessions were completed in FFY19 in November 2018 (Iowa City), April 2019 (West Des Moines), and August 2019 (Coralville). Prior to being admitted to this training, participants were required to complete 30 hours of online training including homework and a final exam. Topics included the System of Care for CYSHCN, the FPSS role, laws and regulations, ethics and professionalism, overview of childhood diagnoses and typical treatment protocols, communication, cultural competency, advocacy, special education, goalsetting and change theory, and wellness and trauma-informed care.

Conduct outreach to organizations statewide that serve families from underrepresented populations

CHSC Regional Center staff have been working to create and enhance relationships with community-based organizations serving underrepresented populations in Iowa. For example, the Sioux City Regional Center strengthened partnerships with two agencies that serve underrepresented populations: Mary Treglia Community House, serving families new to the Sioux City area, including immigrants and refugees; the Crittendon Center, a multi-disciplinary agency designed to give children and families the support they need to feel cared for, nurtured, healthy, safe, and to lead successful self-sufficient lives.  The Dubuque Regional Center staff have partnered with the Crescent Center FQHC to support efforts to hire a family navigator to assist with serving Marshallese families.  Iowa City staff began conversations with EMBARC after EMBARC requested family navigation for a Burmese family. EMBARC is an organization that was started by refugees in Iowa to serve refugee families.

Provide access for CYSHCN and their families to care coordination

All families who receive services through DCCH have access to care teams that include Family Navigators, RNs ARNPs, Dietitians, and specialty providers. Some teams also include Social Workers and Program Coordinators. The DCCH System of Care approach includes gap-filling clinical services; care coordination; and family to family support. In FFY19, families of 7405 CYSHCN were directly served through this model.

Develop a program to enhance Primary Care Provider capacity to treat CYSHCN with mild- to- moderate special health care needs

Most of Iowa's children have a community-based primary care provider (PCP). In FFY19, DCCH received funding from HRSA for the Pediatric Mental Health Care Access Program to develop the Iowa Pediatric Mental Health Collaborative. This program builds on foundational support from Title V and aligns with DCCH’s Title V goal to enhance the capacity of PCPs to treat CYSHCN with mild- to- moderate special healthcare needs within their medical home. This enables greater availability of pediatric specialty providers to treat patients with more complex healthcare needs. The program’s advisory board met three times in FFY19 and includes representatives from the Iowa Chapter of the American Academy of Pediatrics (IA-AAP) and the Iowa Association of Nurse Practitioners (IANP), the Director of the University of Iowa Physician Assistants Program, primary care providers, a family representative, and staff from state programs such as 1st Five. In FFY19, three in-person conferences were held for primary care providers with a total of 173 participants. The table below lists the locations, dates, and attendees present at each conference.

Pediatric Mental Health Primary Care conferences

Conference	Date	Attendees
Ottumwa Critical Conversations	4/24/19	49
Fayette Critical Conversations	5/8/19	67
Spencer Critical Conversations	8/28/19	57
Total		173

 

Topics presented at the conferences varied by location and included:

• Introduction to the Iowa Pediatric Mental Health Collaborative

• Treatment of anxiety disorders

• Understanding disruptive behaviors

• ADHD in children and adolescents

• Learning disorders in children and adolescents

• Depression management in children and adolescents

• Suicide risk assessment

• Caring for the health of LGBTQ+ youth

• Infant and early childhood mental health

• Evaluation and behavior management of severe self-injurious behaviors

• Bipolar disorder in children and adolescents

• Transition to adulthood for individuals with an intellectual disability

 

The program also hosted six webinars with a total of 213 participants. The following table lists the webinar topics and number of attendees at each:

Pediatric Mental Health Primary Care Webinars

Webinar	Presenter	Date	Attendees
Orthorexia: From Research to DSM-6	Susan Pike, MD	2/2/19	32
Integrative Approaches for the Autism Spectrum	Suzanne Bartlett-Hackenmiller, MD and Todd Kopelman, PhD	4/17/19	68
Cultural Humility in Pediatric Mental Health Care	Tanzeh Metzger, MD/MPH Candidate	5/29/19	20
IoWA-PCIT: Integration of Working Models of Attachment into Parent-Child Interaction Therapy	Beth Troutman, PhD, ABPP	6/19/19	38
Behavioral Interventions in Primary Care	Erin Olufs, PhD	8/13/19	31
Affirmative Care: Working with Teens who are Transgender and Gender Non-Conforming	Caroline Woods, MS, PA-C	9/18/19	24
Total			213

 

An online resource and referral database were also developed that includes information for primary care providers and families. An MD/MPH trainee practicum student worked with program staff to complete a project focused on issues of Health Equity when providing training and education to PCPs. Among other activities, the student facilitated the following health equity trainings for PCPs as part of the webinar series listed above:

• Cultural Humility in Care: Addressing Health Disparities in Pediatric Mental Health Care
• Affirmative Care: Practicing Cultural Humility and Working with Teens who are Transgender and Gender-Nonconforming

Collaborate with Iowa's public health programs that support the use of evidence based preventive health assessments

DCCH has a longstanding relationship with the Iowa Department of Public Health (IDPH) 1st Five Healthy Mental Development Initiative. The role of DCCH in this contractual relationship builds on the foundational support of the Title V funding. DCCH worked with IDPH and 1st Five sites at local public health agencies to complete 17 training events. These included presentations, webinars, and peer-to-peer consultations with PCPs across the state. Primary care focused events were on issues relevant to early childhood development including developmental screening and surveillance, Adverse Childhood Experiences, the implementation of Ages and Stages Questionnaires (ASQ), and the Modified Checklist for Autism in Toddlers (M-CHAT). DCCH offered CME and CEU credits for many of these events.

DCCH activities during FFY19 also included service coordination for Iowa's Early Intervention program, Early ACCESS, continued support of Iowa’s Act Early Ambassador, and collaboration with Iowa's Regional Autism Assistance Program (RAP). The RAP program provides a broad array of services to improve systems of care for children and youth with autism spectrum disorder. RAP supports CHSC providers in administering the Screening Tool for Autism in Toddlers and Young Children (STAT) and supports community providers in administering the Autism Diagnostic Observation Schedule for diagnosing and assessing autism.

Priority area:

Transition to Adult Health Care (October 1, 2018-September 30, 2019)

NPM 12: Percent of children with and without special health care needs who received services necessary to make transitions to adult health care

Transition to Adulthood Planning Tools.

Transition to Adulthood Planning Tools were developed using a transition workgroup and went through several rounds of revisions. In FFY18, DCCH created tools utilized in CHSC Regional Centers to support transition planning for youth with special health care needs (YSHCN) and their families. In FFY19, DCCH enhanced these tools and added additional resources. Youth and families received an introductory transition checklist to assess family and adolescent preferences for topics to initiate the transition planning process. Staff members continued to work with youth and families over time to make progress on goals, overcome obstacles, and identify new priorities. A protocol for implementing the Transition Checklist was last edited in March 2019. This included information about how to introduce the transition checklist to families seen in CHSC Regional Centers and the roles of Regional Center staff when discussing transition with families. This protocol also included information about how to document transition goals within the patient’s Electronic Medical Record and ACT.md and how to follow up discussions about transition with patients and their families. This protocol was re-evaluated in September 2019 and ways of more efficiently documenting transition to adult health care were discussed with DCCH staff. The transition to adulthood checklist is now available on DCCH electronic welcome tablets for all patients who are 12 years of age and older who are seen at a Regional Center. During the clinic visit, the patient, patient’s family, or both are invited to complete the transition checklist on the welcome tablet. This information is then stored in the patient’s medical record and is available to the provider to discuss specific concerns during the appointment. This tool is also now available electronically for staff to send to patients prior to their appointment, if desired.

Data are regularly collated and reported back to staff to assure compliance with the developed transition protocol. In FFY19, 62% of youth over age 12 years served by CHSC had an initiated transition plan.

State plan to coordinate transition efforts

Multiple state, regional, and local agencies have developed policies and programs that impact YSHCN and their families during the transition to adulthood, yet these organizations are often unaware of the needs in the community and the services offered by other organizations. This results in a duplication of some services, gaps in others, and no comprehensive state plan to coordinate efforts to assist YSHCN in the transition to all areas of adult life. In FFY2019, the Transition to Adulthood Program Coordinator took another position and broader plans to expand DCCH transition efforts were put on hold. The position was filled in May 2019.

Regionally based resource directory of transition services

In FFY18, content was added to the DCCH website to assist YSHCN and their families in preparing for adult health care. This included a list of Frequently Asked Questions, information about making the most of a visit with a health care provider, and guidelines to determine if a YSHCN will need support making decisions as an adult. In FFY19, this content was expanded to include information about understanding health insurance, guardianship and alternatives for decision-making support, transition and education, and planning for a health emergency. The following link is where this information can be found:

https://chsciowa.org/programs/health-care-transition-adulthood

Health equity issues in the context of transition to adulthood.

Inequities exist in all aspects of health care, including transition to adulthood. Factors related to health insurance, community resources, and socioeconomic factors can all contribute to inequities in preparation and outcomes for transition to adulthood. In FFY19, DCCH compiled information about the influence of race, ethnicity, geography, and diagnoses on the preparation for transition to adult health care.

Findings from this investigation showed disproportionate poverty and subsequent lack of resources; gaps in preventive primary care; disproportionate levels of health literacy exacerbated by complexity associated with special health care needs; language barriers including reports by Spanish-speaking families that their provider did not adequately teach them about diagnosis and management of their child’s care; few online resources in languages other than English; cultural gaps at all levels of health care delivery; stigma and misconceptions about culture/religious traditions and values; implicit biases among providers; and lack of a culturally diverse workforce. The concept of a medical home is a valuable and effective approach for care and transition, but many black and Hispanic CYSHCN have never had this System of Care. Among all CYSHCN: 56.7% receive medical home transition services, with 59% among non-Hispanic white children, 45.5% of black children, and 44.6% of Hispanic children. Recommendations from this study included incorporating equity-based interventions transition to adulthood; early education on transition to adulthood services for all CYSHCN and particularly for traditionally underserved populations; cultural humility education for providers; advocacy for the medical home model; promoting the use of telehealth services; and encouraging more research on the topics of disparities within transition to adulthood and telehealth services in the CYSHCN populations.

Share Transition-related resources outside of DCCH as appropriate.

In June 2019, DCCH Title V and Regional Autism Assistance Program (RAP) staff partnered with Iowa’s UCEDD to sponsor a retreat for families of transition-age youth. UCEDD funding was available to cover most costs for families, including registration, meals, and an overnight hotel stay. The agenda included a young adult and parent panel, Life after High School and Leaving Home, Legal and Financial Rules of the Road, a Caregiver and Parent Café, and a keynote speaker. Forty-eight parents and caregivers of transition aged CYSHCN attended the retreat. Evaluation data showed that participants most appreciated the young adult panel, the opportunity to be with other parents with similar challenges, and an increased understanding of the resources that are available for transition-aged youth.