Arkansas Title V Maternal and Child Health Services Block Grant

2022 Report and 2024 Application

 

III.E.2.c.  State Action Plan Narrative by Domain

CSHCN Health 2022 Annual Report

Infrastructure building activities continued in 2022 that aligned the Title V Children with Special Health Care Needs (CSHCN) Program’s policies and goals with those of Health Resources and Services Administration (HRSA) and the Association of Maternal and Child Health Programs. When the CSHCN program policy was promulgated in 2020, Arkansas prioritized enabling services over direct service provision. Program categories of assistance and funding amounts remained the same in 2022. Outreach efforts to inform parents, health care providers, and other agencies continued. These outreach efforts highlighted the benefits of the program to CSHCN and their families in accessing needed resources and in planning and preparing for transition from pediatric to adult health care systems. Strategic planning in 2022 was based on analysis of stakeholder input and needs assessment results. The program developed and rewrote procedures for staff as part of this ongoing program improvement through infrastructure building. The Title V CSHCN program is in the Arkansas Department of Human Services (ADHS) in the Division of Developmental Disabilities (DDS). Lead Agency internal reorganization during the summer of 2022 moved the program from “Children’s Services” into DDS Community Services Federal Grants Programs for unified leadership of related programs: Title V CSHCN, First Connections (Part C Early Intervention), and Therapeutic Services (Occupational, Physical, Speech, and Applied Behavioral Analysis Therapy). This internal shift fostered enhanced collaboration with these programs that also serve families of children with special needs.

 

Additional Lead Agency infrastructure changes included the formation of an online referral portal and a DDS central Intake and Referral Unit to serve as a single point of entry for all DD services. The DDS Central Intake and Referral Unit includes referral to the Title V CSHCN Program as appropriate for children with complex needs. To ensure appropriate referrals, Title V CSHCN Program administration collaborated with DDS Intake and Referral Unit and other DDS programs to ensure that children with needs above those of their typically developing peers are referred to the program. Title V CSHCN Program staff also support families of children referred in completing the application process to access care.

 

The Title V CSHCN Program adjusts to modifications in Arkansas’s health care delivery system. March 2022 marked the third year of operation of Arkansas’s Medicaid-funded Provider-Led Arkansas Shared Savings Entity (PASSE). PASSEs changed how services for high-need beneficiaries with behavioral health (BH) disorders or intellectual developmental disabilities (IDD) are provided and funded. PASSE providers receive global payments per enrolled beneficiary to cover the total medical cost of benefits, including medical and specialty support for IDD patients, rather than a fee-for-service system. Arkansas’s four PASSEs currently serve approximately 55,000 (ADHS website) members. Children enrolled in a PASSE receive care coordination through the PASSE as well as an array of supportive services covered by the Medicaid State Plan, the Community and Employment Supports (CES) Waiver, therapy services and medically necessary services through the Early Periodic Screening Diagnosis and Treatment (EPSDT) Program. Children enrolled in a PASSE were no longer eligible for the Title V CSHCN program. Analysis of program data indicated a need for Title V CSHCN case management services to be expanded to support families of CSHCN who are not Medicaid-eligible as well as Medicaid-eligible children not served in a PASSE. The PASSE system provided an opportunity for the Title V CSHCN Program to expand case management services to families of CSHCN who have no access to care coordination services through other channels. The system supports these families in accessing care and transitioning adolescents to adult health care services.
 

Arkansas submitted a proposal to the National MCH Workforce Development Center to host Summer Interns in 2022. Arkansas’s Title V CSHCN Program benefitted from collaboration with two MCH Interns from the University of Iowa and the University of South Florida. During their eight-week internship, the Interns supported the program’s work around key program goals of access to care and transition to adult health care and assisted with Health Care Transition surveys of medical practices to collect, enter, and analyze program data. Additionally, the Interns conducted outreach to medical professionals, sharing program information to the Arkansas Academy of Pediatrics. The Interns’ outreach to education professionals on ways school nurses, special education coordinators, mental health professionals, and coordinators of migrant and homeless youth services can collaborate with the CSHCN program to support youth and children through access to care and planning for transition. The Interns’ summer outreach projects with medical and education professionals have rippled on beyond their time in Arkansas, the Title V CSHCN program continues to grow these connections.
 

Arkansas’s CSHCN Program has strong partnerships with families, stakeholders, and colleagues who work together to achieve program goals and objectives. To meet federal guidance and requirements and to reach program goals, the Title V CSHCN program’s focus has been on increasing the number of families of program-eligible children receiving care coordination, increasing referrals for children under the age of five, and increasing the number of children with developmental disabilities the program serves. Outreach efforts to primary referral sources for these populations ensures that families of all children with needs beyond those of their same-aged peers have access to support and services. Collaboration with the State’s Part C and Part B-619 programs for children birth to five with disability and/or developmental delay has supported the program in increasing referrals of preschool aged children and children with disabilities. Other key activities include building on the Interns’ outreach work to school nurses, special education coordinators, coordinators of migrant and homeless youth services, and school-based mental health service coordinators. To increase referrals of children with disabilities and/or developmental delays over the age of 5, Title V CSHCN staff shares program information with regional CoBALT teams (Community-based Autism Liaison and Treatment), UAMS diagnostic clinics, Early Intervention Day Treatment (EIDT) day habilitation programs for children birth to age six, and the James L. Dennis and Schmeiding Developmental Centers. Program information is promoted on the ADHS website with the CSHCN section being continually updated.

To ensure that the Title V CSHCN Program continues to support eligible families, nurses and area managers conduct outreach to medical professionals and primary care providers to explain benefits of the Title V CSHCN Program’s case management and transition planning and support. In addition to increasing referrals, ongoing outreach fostered collaborative relationships with clinicians across the state. This outreach further enables families of CSHCN to access needed resources.

 

Priority Need: Transition to Adulthood for Children with Special Health Care Needs

NPM 12:  Percent of adolescents with and without special health care needs, ages 12 through 17, who received services to prepare for the necessary transition to adult health care.

 

NOM 17.2:  Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system. Data from the National Survey of Children’s Health (NSCH) 2020-2021 indicates 14.8% of CSHCN in Arkansas receive care in a well-functioning system, compared to HRSA Region VI at 12.4%, and to the nation at 13.7%.

 

NPM 12 was chosen by both the AR Title V Children with Special Health Care Needs and Adolescent Health population domains.

 

The 2020-2021 National Survey of Children’s Health indicates that, nationally, 20.5% of adolescents with and without special health care needs receive services necessary to transition to adult health care. Arkansas’s 2022 annual objective of 15.0% was met, with the State’s data demonstrating 20.5% of adolescents with and without special health care needs received transition supports and services. To increase the percentage of adolescents with and without special health care needs who are supported in their transition to adult care systems, Arkansas’s Title V CSHCN Program continued implementation of the following strategies:

 

Strategy 12.1 (CSHCN): Percent of PCP practices of transition-aged children (12 through 17) receiving Title V CSHCN services that participate in the Six Core Elements of Health Care Transition self-assessment.

 

The Title V CSHCN Program provided outreach and training to health care professionals on the importance of transition and elements of transition for CSHCN using the Six Core Elements of Health Care Transition Self-Assessment Tools for Practitioners for Children With and Without Special Health Care Needs, released July 2020 (https://www.gottransition.org). Got Transition is a collaboration between the National Alliance to Advance Adolescent Health and the Adolescent and Young Adult Health National Resource Center.

 

 

Title V efforts in this reporting period focused specifically on primary care physicians (PCP) of children ages 12 through 17 receiving services from the Title V CSHCN Program. The Current Assessment of the Six Core Elements of Health Care Transition Activities was distributed to 56 primary care practitioners in the state identified as the medical home for CSHCN aged 12-17 enrolled in the Title V CSHCN program. Thirty-eight of the 56 primary care practitioners completed the Current Assessment of the Six Core Elements of Health Care Transition Activities for transitioning to an adult health care provider (76.3% pediatricians) and eighteen of the 56 primary care practitioners completed the assessment for transitioning to an adult approach to health care without changing providers (23.7% family practice). In the past, the Program mailed paper Got Transition self-assessments tools to medical practices but, beginning in 2022, the self-assessment was set up as two separate online surveys for ease of data collection and analysis. Information about the importance of the survey and the appropriate survey link was sent to the Primary Care Practitioners at Pediatricians’ Offices and to Family Practices serving adolescents enrolled in the CSHCN Program. The MCH Interns followed up with these medical professionals to ensure survey participation to collect adequate data. To further encourage busy medical practices to participate in the survey, an internship primary preceptor (from CSHCN Program staff) worked with the MCH Interns to develop an infographic to be sent out to any practices that had completed the self-assessment for 2021 but had not yet completed the assessment for 2022. The infographic shared their prior year data with them (in a bar graph comparing their self-assessment ratings to State averages in implementing each of the six core elements of transition) and linked to the online assessment. The outreach effort included information about a free online continuing education credit for PCP’s and Advance Practice Nurses titled “Transitioning to Adult Care for Youth with Chronic Health Conditions and Disabilities” sponsored by the University of British Columbia.

 

As a result of persistent and personal outreach by the MCH Interns, the program achieved a 67.9% response rate, which is a significant increase from the 59.3% response rate in 2021 and which met the 2022 annual objective of 60.0% of primary care practitioners serving CSHCN Program-eligible adolescents participating in the survey. Of the 38 primary care practitioners who completed the Health Care Transition self-assessment survey in 2022, 73.7% completed the transition practices self-assessment checklist by email, 15.8% by fax, and 10.5% by phone.

 

An analysis of the data collected from primary care practitioners in their Health Care Transition self-assessment indicated an overall increased rate of implementation for most of the core elements of transition in both Pediatric and Family Practices from 2021 to 2022. State data indicates that ongoing support is needed by Pediatricians in the beginning earlier to support youth in transition to an adult clinician (Transition and Care Policy/Guide). Family Practices could benefit from assistance in implementing the core element of Transition Readiness by encouraging youth to begin to have time alone during office visits without parents/caregivers present and assessment of youths’ transition readiness skills. The Title V CSHCN will continue interaction with clinicians in implementation of Health Care Transition process.

 

To close the feedback loop and to support practitioners who participated in 2022 or in both 2022 and 2021 in assessing “where they stand” in relation to State averages in implementing each of the six core elements of Health Care transition, the MCH Interns emailed each practitioner their survey results in the form of an infographic that informed them of how the data is used as part of the MCHBG Annual Performance Report.

To begin collecting State data on practices that are not the medical home of a CSHCN Program-eligible adolescent, the MCH Interns expanded outreach to include a presentation to the Arkansas Chapter of the American Academy of Pediatrics PCPs in June 2022. The Pediatricians and Family Practice PCPs were supported by the educational content to transition CSHCN in their practices from Pediatric to the Adult Health Care System. In addition to explaining the Six Core Elements of Health Care Transition, practitioners in attendance were provided links to the online Health Care Transition self-assessments.

 

Strategy 12.2 (CSHCN):  Percent of key stakeholders and referral sources who participated in the Title V CSHCN Health Care Transition training with increased knowledge of Health Care Transition and Health Care Transition services provided by Title V CSHCN.

 

Title V CSHCN Health Care Transition presentations in 2022 primarily used virtual platforms including Zoom and Microsoft Teams due to the ongoing public health emergency, although some hybrid events with a mix of in person and virtual were facilitated. A barrier to collecting data to assess “increased knowledge” in virtual events is identifying the total number of attendees when participants participate in a shared location/shared computer or device. To overcome this difficulty, the pre and post tests were scaled back to a smaller number of key questions and were provided as brief polls for online participants to complete before information was shared and again afterwards. The comparison of pre-test poll data to post-test poll data shows that the 2022 Annual Objective of 29.0% was met, with program data demonstrating that participants increased their knowledge of Health Care Transition and Title V CSHCN services by an average of 43.8%.

 

After a webinar was presented July 2022 by MCH Interns for Educational Professionals, such as Special Education Coordinators, school nurses, and McKinney-Vento Coordinators, these professionals averaged a 50% increase in knowledge of the Title V CSHCN Program. Since children and youth served by the CSHCN Program also attend schools, these families are jointly served by Educational Professionals and Title V CSHCN, so a portion of the outreach presentation included ideas about how Education Professionals could work with Title V CSHCN to improve both health and educational outcomes for the State’s children. As a result of this outreach, Title V Care Coordinators have been asked to share information at school transition fairs and school staff development days to share CSHCN program information and resources to Education Professionals and to parents. This additional outreach included:

• Participated in Transition Fairs at Harber High School and Pulaski County Special School District (both in person) and Guy Fenter Educational Co-operative as a virtual event by providing program brochures including the CHC Assistance Program Guidelines and answers to questions about available resources for local educational agencies.
• Attended a Health Fair in Sharp County coordinated by the Sharp County Cooperative Extension Office as many communities in the wind down of the pandemic began to host Health Fairs.
• Provided transition tip sheets from the state’s Parent Advisory Council (PAC) to parents, students, and school personnel.
• Emailed CHC Assistance Program Guidelines for Parents, in English and in Spanish, and CHC Assistance Program Guidelines for Professionals.

 

Other outreach to Education Professionals includes the collaborative partnership with the State’s Office of Special Education Programs-funded (OSEP) Parent Training and Information Center (PTIC), The Center for Exceptional Families (TCFEF). TCFEF’s mission is to “improve educational opportunities for students with disabilities, including students transitioning to adult life beyond high school.” With similarly aligned missions, TCFEF and the CSHCN make a logical partnership. To support CSHCN in reaching their goal of helping families access services and plan for and prepare for transition, TCFEF invited the CSHCN program to share program information in a Facebook Live Webinar with families across the state. Additional collaboration between the two programs included Title V nurse care coordinators referring 19 families to TCFEF for education support with their child’s Individualized Family Service Plan (IFSP) or Individualized Education Plan (IEP). The Title V CSHCN Program anticipates additional collaboration as a result of TCFEF administration designating one staff member to serve as a 0-5 Liaison to Part C, Part B-619, and Title V CSHCN. The four programs began having quarterly planning meetings (fall 2022) to identify ways to work together in ways that effectively support children and families. Additionally, having a “go to” person at TCFEF will streamline collaboration and support the CSHCN Program in reaching its goal to increase referrals for children under the age of five.

 

Strategy 12.3:  Percent of transition age CSHCN (ages 12 through 17) served by the Title V who received transition services and supports in the past 12 months. “Inactive”

To assess transition services and support provided to transition aged CSHCN (12 through 17) served by the Title V Program in the past 12 months, the CSHCN Program obtained an unduplicated report of youth served by the program. The Program updated the internal audit tool in August 2022. Area managers audited each community-based office under their direct supervision using the Transition Quality Improvement Audit Worksheet to determine whether CSHCN Program-eligible youth between the ages of 12 through 17 received at least one Title V health care transition service. In the audit, area managers reviewed records for progress notes or other documentation in electronic records documented that transition services were provided. “Health care transition services” documentation included:

• Transition goals and objectives were added to the child’s Title V Service Plan.
• The family received the Title V Health Care Transition Protocol.
• Families of 12- and 13-year-olds received the Health Care Transition letter with the anticipatory guidance enclosed.
• Program staff conducted a six-month follow-up, as outlined in the Title V Health Care Transition Protocol, with the family and youth, if their condition allowed.
• Health Care Transition Readiness Checklists were completed by youth aged 14-17.
• CSHCN aged 12-17 were provided age and diagnosis appropriate health care transition resources.
  • Resources from Got Transition’s A Family Toolkit: Pediatric-to-Adult Health Care Transition used by Title V Staff include:
    • Health Care Transition Timeline for Youth and Young Adults.
    • Health Care Transition Timeline for Parents/Caregivers.
    • Charting the Lifecourse Tool for Exploring Decision Making Supports.

 

These detailed audits provide quality assessment of internal processes to ensure that Program staff are providing children aged 12-17 with one or more transition services annually. The 2022 annual objective of 93.0% of CSHCN (12-17) received at least one transition service in the past 12 months was not met. Program data demonstrated that 89.8% received at least one identified health care transition service or support. ESM 12.3 was made inactive and was replaced when the block grant was submitted in August 2022 as it did not align with a specific evidenced-based strategy measure and was considered an outcome measure. However, the program intends to continue improving internal processes to ensure that the program does support all youth ages 12-17 in planning and preparing for transition. To meet this goal, regional Program staff completed ongoing personnel development training in June 2022 to emphasize the importance of a planned and structured approach to health care transition. Additionally, the Program updated the Title V Service Plan to expand the goals and objectives in the health care transition section, the program provided training ensured program staff had the knowledge, skills, and abilities to support youth and families in creating individualized service plans. The 90-minute training was recorded with program staff being provided with the link to the recording and a copy of the training slides.

 

The Title V CSHCN Program’s efforts to increase the percentage of CSHCN who receive transition support also included strategies to support program staff, families, and stakeholders. Strategies to support program staff included:

1. Training by Area Regional Manager on Health Care Transition audit results for each community-based office and training for the regional program staff.
2. Utilizing transition flowsheet outlining for each group what the youth and parent/caregiver should receive.
3. Maintaining separate internal written procedures for staff for health care transition from the protocol.

 

Strategies to support families included:

1. Ensuring the Title V CSHCN website included the most recent Health Care Transition Protocol
2. Having conversations with families on preparing for their child’s transition to adult health care while the child is in early adolescence.
3. Informing parents how important they are to their child’s successful health care transition and in securing long-term benefits for their child.

Strategies to support stakeholders included:

1. Training primary care and specialty care providers (including AR Chapter of the American Academy of Pediatrics PCPs) on the process of health care transition.
2. Training key stakeholders and referrals sources to support youth with special health care needs as they prepare for the transition to adult systems of care.

 

To further help families prepare for transition, the Title V CSHCN Program focused on informing and preparing families using parent letters for parents of youth aged 12 and for parents of youth aged 13. These letters introduce families to the concept of health care transition. Each letter lists topics parents may want to discuss with their 12- or 13-year-old. Parents received copies of two guidance documents: Positive Parenting Tips for Healthy Child Development Young Teens (CDC, 2017) and Bright Futures, Early Adolescence, 11-14 Years, Patient and Parent Handout (2019). Bright Futures is a national health promotion and prevention initiative led by the American Academy of Pediatrics and supported in part by the HRSA Maternal and Child Health Bureau.

 

Strategy 12.4:  Number of School District Special Education Teachers, General Education Classroom Teachers, ad District Professionals attending professional development training that complete a Title V Health Care Transition Readiness Assessment Survey.

 

Planning continued in 2022 to partner with school systems to prepare youth with and without special health care needs ages 12-17 for health care transition. The Title V CSHCN Program collaborated with Arkansas Transition Services, a consultant group that works with school districts in association with the Arkansas Department of Education’s Division of Elementary and Secondary Education Special Education Office. Arkansas Transition Services’ mission, “to effectively assist students with disabilities, educators, parents, agency personnel, and community members in preparing students to transition from school to adult life and reach positive post-school outcomes,” makes them a logical partner in the Title V CSHCN Program’s outreach to education professionals.

 

In 2022, 76 special education professionals completed a survey in a required professional development training session, during which Arkansas Transition Services offered the survey on behalf of the Title V CSHCN Program. The 2022 Annual Objective of 46 Education Professionals completing the Health Care Transition Readiness Assessment Survey was met, as 76 Special Education professionals attending professional development training completed a Title V Health Care Transition Readiness Assessment Survey.

 

The participation of these Special Education Professionals provided useful data for the Title V CSHCN Program. The results of the 76 completed Health Care Transition Readiness Assessment Surveys indicate that some Arkansas school districts are promoting Health Care Transition Readiness Assessments with their special education students. Survey results indicate that only 10.5% report doing so on a consistent basis with 13.2% reporting doing so on an inconsistent basis. Special education professionals in attendance indicated that Health Care Transition Readiness Assessments for CSHCN in public schools are most often completed by parents or by IEP Team members, and the remainder by students (with or without support).

This information indicates there are many opportunities for supporting these key stakeholders in implementing organized transition activities consistently with all children receiving special education services in the public school system. The Title V CSHCN program anticipates further collaboration with Arkansas Transition Services to support education professionals in using a planned, structured approach to health care transition for this population.

 

ESM 12.5: Number of School-based Health Center Coordinators that complete a Title V Health Care Transition Readiness Assessment Survey with questions regarding the school district’s health center.

 

See State Action Plan Narrative by Domain- 2022 Adolescent Health Annual Report.

 

Priority Need: Access to Care

SPM 3:  Percent of families with children with special health care needs served by Title V CSHCN who report that their child received the health care services needed.

 

NOM 17.2:  Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system.

 

Data from the NSCH 2020-2021 demonstrates that 14.8% of CSHCN in Arkansas receive care in a well-functioning system, compared to 12.4% in HRSA Region VI, and 13.7% nationally.

 

The Title V CSHCN Program relies on a statewide network of partners to serve families of CSHCN and to ensure access to needed and continuous systems of care. Networking with existing partners and forging new working relationships with related agencies, programs, and groups serving families of CSHCN is an essential part of improving families’ access to care. In this reporting period, partnerships were strengthened with the State’s OSEP-funded Parent Training and Information Center, The Center for Exceptional Families (TCFEF) to share information with families of CSHCN through TCFEF’s family education program. The Title V CSHCN Program formed stronger working relationships with other programs and agencies serving youth with special needs such as the Arkansas Department of Health’s (ADH) Infant Hearing Program’s Early Hearing Detection and Intervention Program (EHDI); Maternal, Infant, and Early Childhood Home Visiting’s (MIECHV) Nurse-Family Partnership (NFP) and Following Baby Back Home (FBBH) programs; the State’s Part C early intervention program First Connections; Arkansas’s Part B-619 Early Childhood Special Education (ECSE) program; Early Head Start/Head Start, and Family 2 Family (F2F) Health Information Center within the Arkansas Disability Coalition. Improved collaboration with these programs increased CSHCN referrals, which will improve these families’ access to care.

 

The Title V CSHCN program’s active involvement in two collaborative partnership initiatives with the Part C Program and MIECHV Home Visiting Network, supports families’ access to care. The focus of these multi-agency initiatives is working together in new ways to support families in accessing desired resources to advocate for their child and family, smooth transitions into preschool and kindergarten for CSHCN 0-5, and improved health and early learning outcomes for children. Participating in these two early childhood initiatives has resulted in increased referrals of children under the age of five as well as better cross agency collaboration to support families of children enrolled in two or more initiative programs. The new ways of working together with the State’s Part C early intervention program allows (with parent consent) a regional CSHCN Program care coordinator to be part of a child’s Individualized Family Service Plan (IFSP) Team. When a child is turning three and preparing to exit early intervention, a Title V nurse care coordinator is an asset to families identifying and planning “what’s next” and what resources, programs, and supports are available for their child’s preschool years and to provide care coordination when the family’s service coordination through early intervention ends on the child’s 3rd birthday. Collaboration with the State’s Part B-619 Early Childhood Special Education Program makes it possible for the Title V nurse care coordinator to be a part of the child’s Individualized Education Plan (IEP) Team to support transition to kindergarten and beyond. This partnership with early education programs creates a more well-functioning system to support families in accessing care.

Collaboration through the initiatives has also forged effective working relationships with two of the state’s MIECHV Home Visiting programs, Nurse-Family Partnership (NFP) and Following Baby Back Home (FBBH). Through streamlining collaboration across programs for children who are jointly enrolled in the CSHCN Program and a MIECHV Home Visiting Program, the Title V CSHCN program’s nurse care coordinators receive results of developmental screenings and/or evaluations completed by the Home Visiting Program and can continue supporting the child and family after the child ages out of the Home Visiting program at age three or four. Developing effective partnerships with these early learning and Home Visiting programs has helped the CSHCN program increase referrals of children under the age of five while creating a more well-functioning system to support families in accessing care.

 

To build on these exiting early childhood partnerships in 2022, key Title V staff began meeting with Arkansas Children’s Hospital Natural Wonders’ Partnership Council and workgroups. Arkansas’ Kids Count data (https://datacenter.aecf.org/data#AR/2/0/char/0) provides statistics on children, youth, and families in Arkansas from the Annie E. Casey Foundation and Arkansas Advocates for Children & Families. Kids Count data measures overall well-being of children and families in 100 different indicators of health, safety, and educational well-being can be aggregated by school district or county, by age, by demographic group, and by specific indicators or measures, and the data shows huge disparities for children in rural areas and certain demographic groups. Natural Wonders brings programs and agencies together to understand these challenges of Arkansas’s young children in underserved areas. The First 2,100 Days Workgroup focuses on the first five years of a child’s life as the foundation for health, development, growth, happiness, and learning achievement. Title V CSHCN has participated in the work of this group to revise State goals (through 2024) to improve results for children and families.

 

 

Utilizing the ideas and energy of the two MCH Interns, the Title V program revised and updated the 2018 parent survey into an online parent survey in which parents who participated could identify program strengths as well as areas that could be improved. Since the Interns’ time with the State was very limited, survey information and a link was sent out to each parent of a child who at that time was currently receiving Title V CSHCN Program services who had an email address on file (n=384). The MCH Interns emailed the parent of each child a flyer stating the importance of parent feedback to identify Program strengths and areas that could use improvement around care coordination and health care transition services and supports. The flyer included a link to the online survey and invited parents to provide feedback to the program to improve the quality of services to families. Parents were given Title V staff contact information (email or phone) if they had any questions about the survey or voluntary survey participation.

 

384 emails with survey links were sent to parents of CSHCN, and 78 parents completed the online, anonymous survey (20.3% response rate). 2022 Family Survey data helps the Title V CSHCN Program identify programmatic areas of strengths and need. For example, 79.5% of families responding to the survey indicated that the Program’s care coordination (like case management) is helpful to the child/family (62 of 78) and 70% of parents of children 12—17 who completed the survey received information to help prepare for the child’s transition from child to adult health care systems and services. The program can use this information as baseline data and work to increase the percentage of families who report that care coordination was helpful to their family and helped plan for transition.

Family Survey data also provides a way to identify from family report whether the State system is well functioning or not. 2022 online Family Survey data demonstrates that 71% (55 of 78) of families indicate that they always or usually receive as much help as they need in arranging or coordinating their child’s health care and that 82.1% (64 of 78) have not experienced a time that their child needed health care, but it was not received. 94.9% (74 of 78) of parents responding indicated that their child’s health insurance covered the cost of services the child needed always or usually.

 

Another way the CSHCN Program ensures that parents of CSHCN the program serves can access care and navigate a complex health system is through parent education, information, and training. The long-standing work of key stakeholders that make up the Parent Advisory Council (PAC) supports the CSHCN Program in this work. Arkansas’s PAC is one of the oldest in the nation and has been in operation since 1990. The PAC is a diverse group of parents and guardians of CSHCN that provides support, information, and education to families, government agencies, and health care professionals on CSHCN issues. Parent representatives on the PAC support outreach efforts by facilitating at least one regional parent support group meeting or workshop annually. PAC parent representatives share information with families in their regions using email distribution lists, social media, and parent support group activities.

 

In April 2022, the Arkansas PAC held the 9th Annual Famous Family Bistro Conference through the virtual platform Whova. The Family Bistro is an annual event featuring out-of-state and local experts, program representatives, vendors, and other sources of information on topics of parent-identified interest, including the following:

 

1. Respite Care: The Need, the Benefits, and Best Practices, ARCH National Respite Network and Resource Center
2. Struggles to Successes, Autism Mentor and Advocate
3. About the Governor’s Council on Developmental Disabilities
4. Empowering Families
5. Tools for a Self-Determined Life
6. Learning LEND and Arkansas Resources
7. Respite in Underserved Populations
8. Arkansas Governor’s Commission on People with Disabilities
9. The Impact of COVID on Children and Families
10. Feeding Struggles and Food Selectivity in Children with ASD
11. Providing the Ingredients to Successful Access to Care
12. School-based Mental Health Resources for Students and Families.

 

The Whova platform reported 79 attendees, 438 messages, 39 community posts, and 81 photos shared during the conference. Ten exhibitors provided information and resources through Whova. Collaborating partners included the Division of Workforce Services, ARCH National Respite and Resource Center, Arkansas School for the Deaf, AR Governor’s Commission on People with Disabilities, Disability Rights of Arkansas, Governor’s Council on Developmental Disabilities, F2F Health Information Center, University of Arkansas for Medical Sciences, First Connections’ program under Part C, and the state’s Early Childhood Special Education program under Part B-619. The Title V CSHCN Program develops and maintains collaborative partnerships with other agencies, programs, and entities that support the state’s CSHCN population.

 

While the use of telemedicine during COVID decreased travel expenses for many families, it did not eliminate travel. One element of a well-functioning system that supports families in accessing care includes Title V CSHCN support to assist families in covering the expense for travel to appointments or other needed care services in which Title V care coordinators referred 140 families to non-Medicaid transportation brokers for transportation in 2022. For families in Southeast and Southwest Arkansas lacking technology and resources to utilize telehealth services, Family 2 Family and a technology grant from the Black Hall of Fame supported families in accessing care via telehealth by providing tablets. Family 2 Family supported tablet recipients in how to prepare for a telehealth visit by learning to use the equipment, preparing questions for health care providers in advance, and basics of recordkeeping.

 

Care Coordination supports families in accessing the resources and care they need. Title V CSHCN Program’s care coordinators made 14 referrals for other DDS special needs services. Care coordinators helped families access DDS Special Needs Program services by providing direction on how to access, complete, and submit the DDS Special Needs Program’s application packets which helped families of CSHCN access needed respite services funded through the DDS Special Needs Program. Nineteen CYSHCN under age 21 were awarded DDS Special Needs services in 2022 for a total of $9,046.00. The average amount awarded per child was $476.11.

Title V CSHCN Program’s care coordinators made 42 referrals to the DDS Intake and Referral Unit for the Community and Employment Supports (CES) Waiver. The CES Waiver helps recipients live in their communities with support for activities of daily living. Title V CSHCN care coordinators’ knowledge of state and local resources enabled them to make referrals to appropriate agencies and programs that supported families of CSHCN through case management.

 

To improve access to care, the Title V CSHCN Program provides gap-filling services to families of program-eligible children with identified needs when no other funding source exists, in addition to care coordination and case management support. In 2022, the program paid for direct medical services not covered by insurance or other funding sources for eligible CSHCN whose family gross monthly income was under 350% of the federal poverty level. Services fall into seven assistance categories: Medically Necessary Item or Equipment, Deductibles/Coinsurance/Co-pays, Parent Education, Medical Camps, Adaptive Equipment, Respite Services, and Vehicle Modification. An eligible child may receive assistance in more than one category.

 

Many CSHCN services are covered by public or private insurance or other state funding, and case management provided by the Title V CSHCN Program supports these families in accessing needed medical services and resources for planning for transition to adult care. Program expenditures totaling $48,842.47 in 2022 provided gap-filling services for 24 unduplicated children when no other pay source existed.

 

The Family 2 Family Health Information Center is an important partner in the work of the Title V CSHCN Program. The F2F Program, funded by HRSA through a Title V subgrant, is part of the Arkansas Disability Coalition. F2F provided family support by completing applications for benefits, providing information on COVID testing centers, transportation, vaccination education, family engagement, finding adult dental and primary care providers, and early screenings for children. F2F reported that parents were provided with information at drive through events, health fairs, and community-based events such as music festivals and food banks.  During 2022, F2F regional coordinators provided direct services to 2,413 families and 2,676 professionals. Regional F2F coordinators distributed 22 Health Care Plan books to families. The books help parents understand and navigate the health care system and access available resources. The Title V CSHCN Program will continue to rely on PAC and F2F input on health care access needs.

 

The Arkansas Disability Coalition, as a Family Voices Affiliate Organization for Arkansas, provided two training courses in 2022 to families on record keeping, advocacy, and leadership building. Arkansas Disability Coalition supported the Title V CSHCN Program’s goals by offering the “Leadership Gym” leadership training for families. Although leadership skills were taught through collaborative efforts with other organizations, the Leadership Gym will provide an essential foundation for parent advocacy skills building and parent leadership and mentoring. When families develop self-advocacy skills, they are better able to access needed services.

 

In 2022, Title V CSHCN Program staff made 97 referrals to the Arkansas Autism Partnership Waiver to support parents of young children with an autism diagnosis in accessing autism-specific supports and services. The Title V CSHCN Program will continue to support families in accessing educational services by making referrals to early intervention or early childhood special education to support the learning and development of children aged 0 to 5 with a disability and/or developmental delay.

 

Strategy 3.1:  Increase the percent of CSHCN who receive case management to support them in accessing needed services.

 

Program data on care coordination activities provided to families and CSHCN the Program serves is measured by reviewing case management billing compared to the total number of program-eligible children served. By collecting data and comparing to previous years, the program can monitor progress toward reaching the goal outlined in Strategy 3.1 to increase the number of CSHCN receiving case management services (NOM 17.2; SPM 3). Increasing case management services ensures that families of CSHCN are supported in navigating the state and local care systems to access care and plan for their child’s transition to adult health care systems.

 

Care coordination improves child and family outcomes. For example, care coordinators provided 172 families (2022) with information about Arkansas Health Insurance Premium Payment Program (ARHIPP) when many families were struggling financially due to COVID. ARHIPP is a resource for families with private health insurance and Medicaid in which eligible families receive Medicaid reimbursement for out-of-pocket expenses such as health insurance premiums. In 2022, Title V nurses referred 187 families of CSHCN to the state’s TEFRA program to increase access to care. TEFRA can help families of eligible children under age 19 receive care at home rather than in an institution while paying for all or part of the cost of services depending on family income.

 

Increasing the number of CSHCN that the program serves is a key strategy to ensuring access to care. Through collaboration with the statewide TEFRA Unit, the Title V CSHCN Program was asked to present program information to TEFRA workers in March 2022. Comparison of pre- and post-test scores of attendees demonstrated a 31% increase in knowledge. As a result, the number of referrals to the Title V program from TEFRA has increased as TEFRA workers communicate with parents of CSHCN and learn of needs that could be met with Title V care coordination and/or the assistance program.

 

Outreach to related agencies and potential referral sources is a critical component of increasing the percentage of CSHCN referred to the program and who receive case management services. A brochure and infographic explaining the program were updated in 2021 by the DHS Office of Communications. These documents are shared with referral sources, families, and health care professionals to educate them about the program and available services. The brochure and infographic are on the Title V CSHCN Program website in English, Spanish, and Marshallese (added in 2022) at https://humanservices.arkansas.gov/about-dhs/ddds/childrens-services-information/title-v. The CSHCN Program conducts outreach by sharing a brief program overview presentation at state conferences, interagency collaborative meetings, or as part of related agencies’ staff development.

 

Increasing Program referrals relies on partnerships with other programs and agencies who serve the CSHCN population, and the program networks to form new partnerships. When changes in Arkansas’s Medicaid program opened access to Medicaid for the Marshallese population in 2018, the program collaborated with the ADH and the Arkansas Minority Health Commission to develop a letter to Marshallese parents informing them of the Title V CSHCN Program and how to apply for services. A Title V CSHCN brochure and infographic in Marshallese were added to the Title V CSHCN program website in 2022. Title V staff have participated in the Marshallese Interpreting for Community Inclusion (MICI) training specific for Disability Service Providers. The training is a project of the University of Arkansas’s Partners for Inclusive Communities to better understand this community’s values and culture relating to disability and government-funded services. Further planning and collaboration with MICI on strategies to increase awareness of the Title V Program in the Marshallese community is needed.

 

The Title V CSHCN Program has a long-standing positive working relationship with University of Arkansas for Medical Sciences (UAMS), Arkansas Children’s Hospital (ACH), and the Dennis Developmental Center. One of the most significant contributions resulting from this partnership is the CoBALT (Community-based Autism Liaison and Treatment) project, a joint venture between the UAMS Department of Pediatrics and the Title V CSHCN Program. CoBALT teams are trained to screen, evaluate, and in some cases diagnose autism and to route these children and their families to available developmental, health, and medical services in rural areas of Arkansas where specialized services may be difficult to access. The Title V CSHCN program participates in annual training of CoBALT teams. 2022 training of a new CoBALT team in NW Arkansas resulted in an 11% increase in CSHCN Program knowledge (in a comparison of pre- and post-test scores). CoBALT teams are one of many sources of referrals to the Program. From January through June of 2022, 276 families were seen by regional CoBALT teams for autism-specific testing and diagnosis so that these families and children accessed care without a prolonged wait and travel to the state capitol for these services.

 

An important way that the Title V CSHCN Program conducts outreach to medical professionals is through monthly participation in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program trainings. The LEND program educates future health care professionals about family-centered care through long-term, graduate level interdisciplinary training on the complex needs of children with neurodevelopmental and related disabilities and their families. The goal of LEND training for future health care professionals is to enhance their understanding of families’ complex needs as well as their clinical expertise and leadership skills. Title V staff, including the Parent Consultant, participated in the following LEND Trainings in 2022:

 

1. Leadership in Family and Professional Consultation
2. Arkansas Medicaid Programs
3. Introduction to Policy US Government
4. Special Education IDEA, 504, and Legal Aspects Overview
5. Transition to Adulthood
6. Autism Signs, Screening, and Assessments
7. Social Determinants of Health

 

LEND participants include advocates and graduate students from three universities: UAMS, the University of Arkansas at Little Rock, and the University of Central Arkansas. The LEND program has used collaborative partnerships to enhance outreach efforts by participating in other agencies’ professional development activities to share information about the importance of Title V CSHCN Program’s care coordination to support families in accessing needed care and preparing for transition.

 

The Title V CSHCN Program contracts with the Arkansas Disability Coalition to fund Project DOCC (Delivery of Chronic Care). Project DOCC is a requirement for pediatric residents during their training and includes a Grand Rounds panel presentation, a home visit, and a parent interview discussing the child's chronic illness history. Project DOCC trained 35 medical residents in 2022 through 105 encounters. Due to restrictions on in-person meetings, visits via Zoom and telephone were used to carry out Project DOCC activities. Parent comments about this collaboration included:

• “It is so refreshing that the pediatric residents want to hear our story. It makes me feel like the information we are sharing will impact their work in serving the needs of our children.”
• “The doctor was very engaged and asked many questions about social and medical issues.”
• “I had a great visit with the doctor. She had lots of questions and was very interactive. She stated that she has been looking forward to this part of her training.”
• “The doctor really wanted to know what resources families need. He knew a little about TEFRA but was unaware of insurance challenges/limitations families face.”
• “The doctor asked a lot of questions. She was interested in insurance, social activities, and transition.”
• “The residents and trainees were very interested in resources ranging from supportive services like respite to transition services.”
• “I did the Parent Interview with two doctors. They had great questions and different questions about how diversified Medicaid is and seemingly divided on treatment options and coverage. They are interested in how they can help families now and in the future.”

 

 

Pediatric residents’ comments about this collaboration included:

• “It can be hard to share so many details, but it was amazing to learn from the parent and it is a privilege to learn what a family goes through.”
• “Thank you for your family story! I loved learning about resources, in particular, respite.”
• “I loved hearing about your family! I learned so much and enjoyed the experience. The information is very valuable.”
• “We appreciate the parents for all that they do. It seems like they are good advocates for their kids. I am excited to work with families like this.”

 

The CSHCN Program’s contract with UAMS provides opportunities for the Title V CSHCN nurses to provide ongoing support to the communities in which they work by participating in diagnostic clinics in four regions of the state. Regional diagnostic clinics provide access to care for many CSHCN who otherwise would not have local access to pediatric specialists. Under the contract, the Title V CSHCN Program provides a nurse at each outreach clinic to ensure that each child is screened for Title V CSHCN services, including case management, at each quarterly clinic visit. Through participation in these regional diagnostic clinics, Title V nurses referred children to other appropriate services as well, which also supported families’ access to care. During the reporting period, some regional diagnostic clinics held in-person visits at facilities where social distancing was possible, but many operated through a blend of telemedicine and in-person visits. To support families in this virtual format, the Title V CSHCN Program mailed Title V application packets, a program overview brochure, and contact information for the CSHCN Program’s nurse affiliated with the clinic the family was scheduled to attend. Also, the Program’s nurse care coordinators contacted each family prior to the regional diagnostic clinic to help them prepare for their telemedicine appointment and to screen for Title V CSHCN services and to assess any gaps in services or care. The Program’s nurse care coordinators also contacted families after the visit if a child received a diagnosis to offer information, support, and access to care coordination. These efforts increased the number of CSHCN the Program serves.

 

In 2020, UAMS began hosting a statewide tele-education series, Connecting Across Professions (CAP), to provide live and recorded training and information to pediatric professionals about programs supporting children with developmental disabilities. The CAP tele-education series Learn on Demand ended in February 2022. By July 2022, all CAP lectures were uploaded to the Learn on Demand website and are available for professionals from a variety of fields to access “on demand.” Program information recorded in the Learn on Demand series supports referral sources across the state and across fields in making referrals to the Title V CSHCN program.

 

Building relationships with hospitals and clinicians ensures that these important referral sources know about the support available to CSHCN and their families. Outreach to medical professionals is not limited to sharing program information in professional development or conference settings. The Program’s regional nurse care coordinators build working relationships with primary care physicians and area hospitals and clinics to support CSHCN and their families in accessing care. Physicians become aware of families’ needs for services not covered under the Arkansas Medicaid state plan, such as respite, education, care coordination, or medically necessary services covered through the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program. These working relationships provide primary care physicians a go-to person in their community to whom they can reach out to for information or when they need assistance obtaining Medicaid services such as personal care and durable medical equipment for CSHCN clients. Title V CSHCN nurse care coordinators ensure that families have support to access needed care by assisting families in completing required documentation. Partnerships between the Title V CSHCN Program and medical professionals create a more well-functioning system that helps families access care.

 

Serving as a stakeholder representing the Title V CSHCN Program in the State’s Infant Hearing Program’s (IHP) advisory council meetings formed an effective working relationship with the IHP’s Early Hearing Detection and Intervention (EHDI) program. Title V CSHCN staff collaborate with the EHDI program to identify ways to work together to better support children who are deaf or hard of hearing and their families and operate under a Memorandum of Agreement (MOA) between EDHI and the Title V CSHCN Program (revised September 2020). This collaborative work supports the Program’s goal of increasing referrals of young children and children with disabilities and developmental delays and supports Arkansas’ families in access to care. Collaboration in 2022 with IHP/EHDI included:

• Title V CSHCN Program staff participating in the IHP Learning Community and IHP Advisory Council. These monthly meetings provide an opportunity to identify existing family support services and to explore expansion of these services to promote access to care. The meetings provide an opportunity to share Program information and network with related programs that may serve as referral sources, such as Arkansas Hands and Voices and Children and Youth with Sensory Impairments (CAYSI) that serve as new sources of referrals.

 

• The updated MOA facilitated Interagency collaboration so that the Arkansas Department of Health (ADH) was able to send parent contact information from birthing hospitals for 97 infants who failed their newborn hearing screening to the Title V CSHCN Program in 2022. Title V staff training on details of the MOA and written protocols can support the work of the EHDI program by reaching out to these families to reduce the number lost-to-follow-up after birthing hospital discharge. The IHP also referred 48 infants with confirmed diagnosis of hearing loss to the CSHCN program in 2022. This collaboration supports families in accessing care and supports the CSHCN Program in increasing referrals of children under age three and children with developmental disabilities.

 

• Collaboration with the IHP included training Title V CSHCN Program staff on how to document support and services provided to these families in the ADH’s Electronic Registration of Arkansas Vital Events (ERAVE) database.

 

The Program reviews data from the Social Security Administration (2022) which shows that 21,336 children under the age of 18 in Arkansas were SSI recipients. According to 2022 data from an Arkansas Integrated Eligibility System (ARIES) Medicaid report, 6,888 children under the age of 19 were recipients of Tax Equity and Fiscal Responsibility Act (TEFRA) benefits. The number eligible for TEFRA benefits increased from 6,724 in the calendar year 2021 to 6,888 in 2022. Combining the data for SSI and TEFRA recipients, approximately 28,224 children in Arkansas were categorized as being in a Medicaid disability category. A Therap report indicates that the total number of Title XIX (SSI and TEFRA) recipients served by the Title V CSHCN in 2022 was 400 which represents 1.4% of children with disabilities in the state. Having this baseline data supports the Program in measuring its effectiveness at reaching program goals of serving more children and families.

 

An analysis of Program data (2022) sorted by child’s age indicates that the program predominantly serves CSHCN who are 5-12 years old (50.6% of current clients), followed by children 3-5 years old (26.9%), followed by CSHCN 12-18 years old (13.7%), with only 8.8% of children currently receiving case management services under age 3. The percentage of children served under age 3 has increased slightly from 8.1% in 2021, indicating that strategies to work more closely with the State’s Part C Early Intervention program and MIECHV home visiting programs to increase referrals appear to be effective.

 

After Lead Agency infrastructure changes that put the Title V CSHCN Program and the state’s Part C early intervention program (First Connections) under the same leadership and direction, collaboration between the two programs has been streamlined. As a result, some Title V CSHCN staff members have taken an active role in learning more about the early intervention program and networking with representatives of related agencies by attending quarterly meetings of the Arkansas Interagency Coordinating Council (AICC). The AICC is the advisory council to the state’s Part C Program. First Connections now requires regional service coordinators to refer all children with an active IFSP to the CSHCN regional care coordinator serving the area. This strategy is expected to increase referrals of young children under age 3.

 

The partnership with First Connections resulted in an opportunity for the Title V CSHCN Program to be included on the roster of lecturers for the pediatric residents on rotation at the James L. Dennis Developmental Center at Arkansas’ Children’s Hospital. The training enables future pediatric professionals to be aware of the Title V CSHCN Program, supports and services the program offers, who and how to refer a child, and why planning for transition is important. Comparison of pre- and post-test scores of pediatric residents trained by Title V staff in 2022 demonstrated a 36.5% increase in knowledge. The monthly lecture also provides program handouts and the opportunity for pediatric residents to ask questions about the program and services provided so that these professionals can make referrals to the program to increase families’ access to care.  James L. Dennis Developmental center provided autism-specific evaluation and diagnosis to 185 children between January and June of 2022 and referred man of these families to the Title V CSHCN program for support because of this collaboration.

 

Additional collaboration with First Connections to increase referrals of children 0-5 included partnering with the early intervention program and the State’s MIECHV Home Visiting Network of Programs, Part B-619, Family 2 Family, and Early Head Start/Head Start for the 0-5 Community Partnership Initiative. The Initiative’s goals are to improve outcomes for young children by supporting parents in knowing their rights, knowing how to advocate for their child and family, and knowing how to promote their child’s health and early learning. Monthly Initiative meetings in 2022 built effective work relationships between program administrators of the multiple participating programs and among in-the-field workers to support working together in new ways to ensure that families can access care in the 2 rural counties of the pilot (Crittenden and Van Buren counties). In monthly meetings, in-the-field staff from all programs report high-level collaborations such as joint home visits (or virtual meetings with families to streamline processes and support families in developing individualized plans and accessing services, and planning transition to preschool services when early intervention ends at age 3 or to kindergarten at age 5). Also reported are mid-level collaboration such as (with parent consent) record sharing and staff from programs in which a child is jointly enrolled reviewing records or evaluation results together for the purpose of planning and/or making referrals that support the family in accessing care. A result of this collaboration has been the inclusion of CSHCN nurse care coordinators (with parent consent) being included on families’ Individualized Family Service Plan (IFSP birth to 3) and Individualized Education Plan (IEP 3-graduation) teams.

A related and similar 0-3 Initiative between one MIECHV-funded Home Visiting Program, Following Baby Back Home (FBBH), First Connections, and the Title V CSHCN Program has scaled up from an 8-county pilot to Statewide. The 0-3 Community Partnership Initiative also has monthly team meetings. Teams are the in-the-field staff from all three partner programs in the various geographic regions of the State. All Title V CSHCN Program nurse care coordinators attend the monthly team meetings to share updates on implementation of strategies that support families in accessing care, knowing how to promote their child’s health and early learning, and supporting smooth transitions to programs and services for preschool aged children 3-5. FBBH and First Connections staff make referrals to Title V CSHCN to support parents of 3-year-olds in transitioning to preschool or other appropriate services for children when Home Visiting and early intervention ends. The collaboration across programs ensures that young children access needed services to support health and early learning.