CYSHCN – Annual Report, October 1, 2021 – September 30, 2022

 

Priority Need: Increase the Number of Children, Both With and Without Special Health Care Needs, Who Have a Medical Home

 

NPM 11: Medical Home

 

There are many challenges to providing comprehensive health and social services to children, youth, and families living in Georgia including the rurality of the state, a fast-growing population that outpaces the growth of the health care system and having approximately one in four children under the age of 18 who are living in poverty. According to the 2020 - 2021 National Survey of Children’s Health, 21% of Georgia children and youth, ages zero to 17, have a special health care need but only 16.6% of those children and youth receive care in a well-functioning system. Among children with special health care needs ages 0-17, only 48.5% of children with special health care needs, have a medical home.

 

The Office of Child Health includes autism services, children and youth with special health care needs, developmental screening and monitoring, early intervention, evidence-based home visiting, high risk infant follow-up, and newborn screening programs. These programs provide critical services and support for children from infancy to young adulthood and their families. Working collaboratively across programs provides enhanced opportunities to leverage resources including subject matter expertise, funding, and trainings. Programs also provide leadership and guidance in health policy development and implementation, needs assessments, workforce development, strengthening family engagement, enhancing community partnerships, expanding telehealth services, and addressing social determinants of health.

 

Increasing the number of children with and without a medical home was identified as a priority need in the 2020 five-year needs assessment. Child health services are offered statewide and administered through local child health programs available in Georgia’s 18 public health districts. Nurses, social workers, care coordinators, service coordinators, developmental specialists, early intervention specialists, therapists, and medical providers are responsible for providing direct services to children and youth with special needs and their families. Timely and ongoing screening and access to a continuum of health care services is critical to achieving optimal outcomes for children including children and youth with special health care needs.

 

Children’s Medical Services

Children’s Medical Services (CMS), Georgia’s CYSHCN program, provides services to families caring for children and youth, birth to 21 years of age, through a statewide network of 18 public health district who implement CMS services. The CMS program partners with primary care providers, pediatric subspecialists, health care vendors, state agencies, and community-based organizations to coordinate timely access to health care services and supports for eligible CYSHCN and their families. Services include physical evaluations, diagnostic tests, inpatient/ outpatient hospitalization, medications and other medical treatments, post-op therapy, durable medical equipment, hearing aids for eligible conditions, as well as genetic counseling.  97% of children and youth enrolled in CMS services receive care within a medical home.

 

Pediatric specialty care clinics were offered for children and youth living in rural counties where there is limited pediatric subspecialists. The CMS program offered pediatric specialty clinics in nine public health districts and coordinated services with more than 30 specialty providers for face to face as well as telemedicine clinic visits. During 2022, approximately 364 clinics were scheduled. Of those, 140 were provided via telemedicine, and 3,011 children and youth were served via the specialty clinics. Specialty clinic types included endocrinology, nephrology, cardiac, chronic lung, genetics, hematology/sickle cell, orthopedic, hearing, neurology, and cystic fibrosis.

 

The CMS telemedicine clinics received an upgrade during this reporting period when migration was completed to a web-based platform, Pathways. Prior to this upgrade, telemedicine clinics depended on the utilization of telemedicine carts which required a designated location, space for the cart and ongoing maintenance. Pathways can be accessed with only a laptop with internet connectivity and therefore offers more flexibility as to the location of the telemedicine visit. Pathways is also more cost-effective since it eliminates the need to purchase a cart or provide a dedicated circuit.  

 

Telemedicine clinic satisfaction surveys are completed by patients and families after each clinic visit. The survey assesses individual experiences with scheduling the visit, connecting to the visit and communicating with the care coordinator and medical provider during the telemedicine visit. Overall, survey results indicate satisfaction with the telemedicine visit and most patients and families would schedule their next visit using telemedicine.

 

CMS serves as the payer of last resort for health care and medical expenses for families that do not qualify for Medicaid, SCHIP programs, or those who are without insurance during CMS program enrollment. In addition to filling in the health care coverage gap, CMS supported CYSHCN and their families by coordinating appointments, identifying resources, and assisting with social supports such as transportation and support groups. Helping CYSHCN and their families gain confidence in managing their health care needs and navigating complex social needs is an important goal for the CMS program.

 

During this reporting period, families enrolled in CMS received care coordination services by public health nurses and social workers and the program continued to implement its continuity of operations plan to ensure families had access to essential services. Annual and six-month care planning was primarily conducted via the phone following verbal consent. Home visits were not provided but health departments began offering office hours for families and care coordinators to address care plans and other care coordination needs. The primary focus of care planning addressed current and immediate medical and family support needs, promotion of well child visits and immunizations, transition planning and preparation, and assistance with medications and medical supplies.

 

During the latter part of 2020, the CMS program expanded telemedicine services to include care planning and eligibility determination for families. Cisco WebEx, the Department’s secure videoconferencing platform, was utilized to assist with improved engagement and coordination of services. DPH also received funds from the Association of Maternal and Child Health Programs to support telemedicine expansion. The funding provided equipment for families and staff to access and utilize the Cisco WebEx platform.

 

Funding for Georgia’s Family to Family Health Information Center, Parent to Parent of Georgia (P2PGA), is provided by CMS and the early intervention program. P2PGA maintains the Special Needs database that provides resources for children and youth, birth to 26 years, with developmental delays, disabilities and chronic health care conditions. The database houses more than 6,000 resources to assist families with navigating the health care and special education systems. The Special Needs database offers users the opportunity to search for information and referral resources online or receive one on one assistance from bilingual staff over the phone.

 

Increasing the number of children with and without a medical home was identified as a priority need in the 2020 five-year needs assessment. The American Academy of Pediatrics specifies seven qualities essential to medical home care: accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective care. In Georgia, only 40.3% of children and youth with a special health care need met the medical home criteria when accessing care. For children and youth, aged zero to 17, a greater percentage of non-Hispanic White (46.9%) reported access to care within a medical home than the same aged non-Hispanic Black (38%) children and youth. Furthermore, according to the National Survey of Children’s Health only 12.4% of children and youth with special health care needs in Georgia received care in a well-functioning system compared to 14.1% percent of children and youth with special health care needs nationwide.

 

Current Year:

The CMS program partners with primary care providers, pediatric subspecialists, health care vendors, state agencies, and community-based organizations to coordinate timely access to health care services and supports for eligible CYSHCN and their families. CMS also provides a statewide network of genetic services that include evaluation, treatment, and disease management for children diagnosed with heritable disorders. The CMS program’s care coordination services support patient/family access to health care financing, linkage to community-based services and resources, health care transition planning, and linkage to pediatric specialty care in addition to reduction in service duplication, service gaps, and access to care and services barriers.

 

The CMS program provides specialty clinics in nine public health districts and coordinates services with more than 30 specialty providers for face to face and telemedicine clinic visits. Telemedicine clinic services are offered in seven of those locations and as the presenting site, are eligible for Medicaid reimbursement. All families accessing telemedicine have access to free language assistance services. Specialty clinic types included endocrinology, nephrology, cardiac, chronic lung, genetics, hematology/sickle cell, orthopedic, hearing, neurology, and cystic fibrosis.

 

An annual satisfaction survey is distributed by local public health CMS programs to families and patients over 18 years to learn what’s working well and where improvements should be considered. Responses are collected from 5-10% of active caseloads and are available in English, Spanish, Burmese and Nepali. The survey asks whether families received the help they needed with finding and getting medical services and supports for their child. The survey asks respondents to rate service provision and staff responsiveness as well as experience accessing providers and resources. Overall, survey results indicate that participants are satisfied with their care coordinator and the services provided to them.

 

Eighty percent of children enrolled in the CMS program have fee for service Medicaid. Since the fall of 2022, the program provided monthly updates on the proposed Medicaid redetermination process to the local public health district CMS program leads. During the spring of 2023 in preparation for the redetermination process, local care coordinators cross-referenced contact information for families against Georgia Medicaid Management Information Systems. Any discrepancies in contact information warranted a follow-up with families. Many families expressed appreciation of the follow-up and being made aware of what to expect for their upcoming redetermination. Georgia Medicaid created and distributed an impressive campaign named, Stay Informed Stay Covered. There is a dedicated website for the campaign that provides communication materials in several languages for Medicaid recipients, providers, and the public. Local public health care coordinators utilized the materials to increase awareness among program participants and families through newsletters, flyers, social media messaging, website postings, and clinic area postings.

 

The Medicaid redetermination process is expected to take 12 -14 months. Redeterminations will take place on the Medicaid member's anniversary date and those potentially eligible for the Pathways to Coverage 1115 Waiver, will be redetermined last. Families have 90 days to provide information for their redetermination. CMS care coordinators will verify Medicaid eligibility status and discuss redetermination at six-month and annual reviews as well as at specialty clinics visits. For families experiencing challenges with coverage, the CMS program serves as the payor of last resort for health care and medical expenses for families that do not qualify for the state’s Medicaid, SCHIP programs, or those who are without insurance during the time of CMS program enrollment.

 

The Georgia Autism Initiative implemented the Board-Certified Behavioral Analyst (BCBS) Training and Supervision Program which allows children with autism spectrum disorder to receive behavioral support services from supervised trainees completing their filed hours required to become BCBAs. This initiative has provided field experience for approximately 12 professionals pursuing national certification and approximately 200 children have received behavioral support services through this initiative.

 

The Parents as Partners project is funded jointly by the CMS and BCW programs and administered by Parent to Parent of Georgia (P2PGA), Georgia’s Family to Family Health Information Center. Parents as Partners are parents of a child or youth who has a special health care need who provide support to other parents of children with special health care needs. The partnership with the Department’s Refugee Health program presented an opportunity to collaborate with a community-based organization (CBO) supporting the refugee/immigrant population in the city of Clarkston. The Parent Partner for the CBO supports families with accessing public health services and linkages to early intervention and CMS services. The program’s participation in this year’s Family Voices Community of Practice identified several strategies for improved engagement with the refugee population. This includes plans to create a seamless transfer from the CBO to the public health district CMS program in DeKalb County.

 

Early Hearing Detection and Intervention (EHDI)

The EHDI program continued to make progress in several key areas that included increasing collaborations and engagement with key stakeholders, completing modifications to the SendSS database used for surveillance and tracking of new data elements, and expansion of the state’s capacity to provide teleaudiology services.

 

Stakeholder collaboration and engagement flourished, in part as a result of the passage of a legislatively mandated framework for collaborations. The Official Code of Georgia Annotated (O.C.G.A) § 30-1-5, the Language and Literacy Initiative, requires that DPH work with DECAL and DOE to improve educational outcomes of children who are deaf or hard of hearing (DHH); developing an actionable individualized birth to literacy plan for every child who is DHH in the state from birth through the third grade. The goal of OCGA 30-1-5 as amended by Act 462 is to create an individualized, child-focused system that supports a seamless provision of services for children and families as they move through the seven key transactions necessary for age-appropriate language and literacy outcomes. Seven key transaction points were identified based on best practices that provide guidance for families on their journey from birth to literacy. Georgia children who are DHH will be able to achieve proficient language and literacy skills in significantly greater numbers when every DHH child can complete these transactions in a timely and coordinated manner.

 

Key transaction points include:

1. Newborn hearing screening
2. Diagnostic evaluation
3. Early Hearing Orientation Specialist (EHOS) visit
4. Early Intervention
5. Transition
6. Preschool services
7. School-based services

 

Data from the EHDI program are reported in the first three transaction points and positions. Since August 1, 2018, for every infant identified as DHH, the EHDI program requests a Georgia Testing Identification (GTID) number from DOE to facilitate monitoring progress of children once they transition from infancy and early childhood into DOE services. DOE assigns every child enrolled in the Georgia public school system a GTID that remains with the student through high school. This number allows educators and evaluators to identify and map the progress of every child identified as DHH enrolled in public school. Through the Language and Literacy initiative, DOE is now able to assign GTIDs at the time hearing loss is diagnosed (several years before school entry). To date, 1,191 children who are DHH have received a GTID through EHDI program requests. Each year, a report is submitted to the Governor and the Georgia Commission for the Deaf and Hard of Hearing. The 2021 report focused on Georgia’s “Diagnostic Dilemma” regarding the lost to follow-up and loss to documentation from the newborn hearing screening to the diagnostic evaluation. In the Official Code of Georgia Annotated (OCGA) § 30-1-5 Year 1 Report, authors identified the need to break down specific risk factors, or health determinants, that may contribute to lower outcomes for children who are DHH. The Year 3 Report (2021) addressed these risk factors. Demographic data including race and ethnicity were also analyzed to understand their impact on diagnostic outcomes.

 

Collaborations with the newly developed Georgia Mobile Audiology (GMA) program progressed well during the first year of the program. Georgia’s Legislature and DOE recently funded GMA, which launched with limited services in 2020. GMA includes a fully outfitted mobile audiology unit that will travel to rural areas to provide screening, audiological care, early intervention, and hearing aids to children who are DHH. Two pediatric/educational audiologists and a patient care coordinator plan to establish a routine schedule in underserved areas in Georgia. The focus of GMA is to provide gap-services in audiology to infants and school children in underserved areas throughout the state. GMA is working with the EHDI program to provide outpatient follow up services for infants referred from newborn hearing screening, infant hearing assessments, and assistance with professional development, training, and in-services for providers. Services expanded from collaborations for follow up audiology services in four health districts, Fulton, Valdosta, Rome, and Gainesville, to eight health districts and include Macon, Waycross, Albany, and LaGrange.

 

Webinars, grand rounds, presentations, and virtual meetings were conducted with stakeholders to engage, educate, and inform them about the EHDI system and their role in ensuring that infants and families receive timely and appropriate services. The EHDI program has two Ear, Nose, and Throat Physicians engaged as Chapter Champions, Dr. Paula Harmon for the GA-AAP and Dr. Nandini Govil for the GAFP. Webinars were conducted for audiologists to address reporting requirements and updates to the audiology portal within the EHDI program data base. The webinars also included information and guidance on using the audiology portal in SendSS. Monthly teleconferences are being conducted with district EHDI coordinators to provide technical assistance and learn district updates on EHDI activities.

 

The EHDI program obtained a roster of audiologists licensed in Georgia from the Board of Examiners for Speech-Language Pathology and Audiology. The Audiology Roster was used as the foundation for developing a statewide email distribution list for audiologists. The roster listed 642 active audiologists in the state, with 498 of those on the list holding a Georgia address (Audiology Portal users of the state EHDI database must be providing services in Georgia). As the list does not include email addresses, the program worked to identify audiologists and facilities serving infants and young children to develop the email distribution list. Emails were located for 257 of the 498 licensed audiologists (52%) in the state, accounting for all known reporting facilities (100%) plus other audiologists not reporting to the EHDI program. Dr. Kathleen Toomey, DPH Commissioner and State Health Officer, distributed a letter reminding audiologists of the importance of reporting follow-up results and all newly identified children with Permanent Childhood Hearing Loss (PCHL) through age five, per Georgia law within seven days of testing (hearing loss is a notifiable condition in Georgia). The letter was distributed to 257 licensed audiologists on September 27, 2021. At that time, a baseline of 120 Audiology Portal accounts was measured (103 audiologists and 17 additional reporters). As of October 21, 2021, there was an increase of 18 audiology portal accounts in the SendSS database (16 audiologists and two additional reporters) for a total of 138 users. A dramatic increase in the number of infants reported with hearing loss was reported in the months after the letter was distributed, with 52 children through age five reported with hearing loss in October 2021 and 34 in November 2021 compared to a monthly average of 26.

 

Over the last year of the project, the EHDI program worked with DPH IT to make numerous updates and modifications to the EHDI program module within the SendSS database. The changes made facilitate reporting and tracking, performing follow up activities, and promote progress towards meeting the 1-3-6 EHDI benchmarks. In addition, the modifications provide a means of documenting program progress towards referring families of infants with confirmed hearing loss for family-to-family support and for deaf adult to family support. During the reporting year, the EHDI program worked in collaboration with the Georgia Chapter of Hands and Voices (H&V) on a data elements group called Families and EHDI (FEHDI). Georgia, Illinois, Oregon, and Utah FEHDI participated along with state coordinators, and a family-based organization representative involved with EHDI. FEHDI developed and defined a data set that can be used as a tool for other states for reporting and data sharing between programs in response to HRSAs aim for the EHDI program to increase the number of families enrolled in DHH adult-to-family support services by 10 percent by no later than nine months of age. Data elements, definitions, and a model database were shared with state EHDI staff, federal partners, and Family Leadership in Language and Learning (FL3) members. CDC EHDI program adopted several of the data elements and definitions from the FEHDI workgroup for inclusion in the annual Hearing Screening Follow-Up Survey.

 

The impact of the COVID-19 pandemic was a concern for follow up for infants not passing the initial hearing screening prior to hospital discharge. While initial hearing screening was minimally impacted, outpatient services were interrupted, particularly in non-metropolitan regions of the state. District EHDI coordinators worked to educate families on the importance of newborn hearing screening and are exploring outpatient options to refer families for testing but some families are electing not to pursue follow up for their infants. The EHDI program presented on the receipt and timeliness of newborn hearing screening and follow-up services before and during the COVID-19 pandemic at the 2022 EHDI Annual Conference in March 2022. Findings of the study suggest while most infants continue to receive their initial hearing screening, referral rates decreased overall during the pandemic. In addition, receipt of diagnostic evaluations was delayed in time, and families were less likely to complete diagnostic evaluations as an overall decrease in the number of infants receiving follow up evaluations was reported.

 

House Bill 1186 was passed during the 2022 Georgia Legislative session to allow persons who are not licensed audiologists to use otoacoustic emissions (OAE) or auditory brainstem response technology as part of a screening process for the initial identification of communication disorders in individuals up to age 22, subject to certain conditions. Individuals using OAE for hearing screening must be under the oversight of audiology and must be trained by an audiologist. Training opportunities for use of OAE screening will be available for school nurses, public health nurses, speech language pathologists and associated early childhood care providers.

 

Increasing availability of providers that are permitted to use OAE as a screening tool should provide positive outcomes such as decreasing the demand on pediatric audiologists, increasing the availability of providers for hearing screening in early childhood, decreasing wait times for hearing screenings for speech/ language services, and increasing identification of early onset hearing loss in young children. Providers using OAE for screening will still be required to report all follow up results from newborn hearing screening, all newly identified suspected and confirmed permanent childhood hearing loss through age five, sensorineural and permanent conductive mixed auditory neuropathy to EHDI.

 

Several persistent challenges remain for EHDI as the program works to meet the 1-3-6 benchmarks for all infants who are DHH and their families. Loss to documentation/loss to follow up, staff turnover, and lack of institutional memory are challenges. COVID-19 continues to impact the Georgia EHDI program. To address these challenges, three new district EHDI coordinators have been hired and ongoing provider engagement and education is provided to address loss to follow-up and loss to documentation. State and district stakeholder meetings have resumed to promote engagement, as well as postings on the Georgia Pediatric Audiology Network (GPAN), and outreach to individual practices to discuss Georgia EHDI policies and procedures.

 

Current Year:

In the current year, the EHDI program has worked to improve the system of care through strategies to decrease loss to follow-up and documentation, maintain and document hearing screenings for 95% or more of Georgia’s occurrent births, increase timeliness and receipt of diagnostic evaluations for infants who do not pass the newborn hearing screening, improve data sharing between EHDI, family support and Early Intervention providers, improve change management, and improve stakeholder and family engagement.

 

The EHDI program has continued the work that was enhanced by Legislative Act 462, which brings into focus the academic landscape for DHH children. EHDI and Part C programs are working more collaboratively with DECAL and the DOE to monitor and strengthen the systems that support early identification, intervention, language development academic achievement for DHH children across the continuum of service they receive from birth to third grade.

 

EHDI has been collaborating with key stakeholders to enhance the quality and timeliness of the EHDI system and continue to promote activities that result in access to needed resources and interventions to promote language acquisition and optimal social, emotional, and cognitive development for children who are deaf or hard of hearing. EHDI has engaged two family support programs through Georgia H & V: Guide By Your Side and Advocacy Support and Training. Collaborations with GMA, Children’s Health Care of Atlanta, and audiologists throughout the state will also expand this year to focus on surveillance of hearing status throughout early childhood.

 

The EHDI program also supports the Georgia PINES Deaf Mentor program to provide families who have children with hearing loss with family-centered, home-based, and curriculum-led early education, focusing on visual communication, American Sign Language, and Deaf Culture.

 

The EHDI program implemented two learning communities within the Augusta and Athens health districts to educate providers about the importance of meeting the 1-3-6 EHDI benchmarks (screen for hearing loss before one month of age, diagnose hearing loss before three months of age and enroll in early intervention programs before six months of age) and promoting care coordination in their district. Learning community members include DPH staff, audiologists, family members of children who are deaf or hard of hearing, hospitals, early intervention providers, and medical home providers. Learning Communities are targeting areas for improvement of service provision specific to their district based on the feedback received from the members and from performance measures shared by the state EHDI program.

 

Babies Can’t Wait (BCW)

BCW is committed to increasing the percentage of infants and toddlers who are nearer to, or meet age expectations, for positive social-emotional skills including social relationships. For the past several years, BCW continued to provide service coordinators and special instructors with training and coaching to implement evidence-based practices for providing positive behavior supports to children identified with behavioral concerns.

 

In collaboration with the Georgia Department of Education (DOE) and the Department of Early Care and Learning (DECAL), the 2022 Annual Report on Language and Literacy Outcomes for Children who are Deaf and Hard of Hearing (DHH) was completed. The Report highlighted the progress made on critical measures to promote better outcomes for Georgia’s children who are DHH. The collaboration started with the passage of 2018 legislation, Official Code of Georgia Annotated (O.C.G.A) § 30-1-5, Birth to Literacy Collaborative. A multi-agency task force was created consisting of DPH, DECAL, and DOE to carry out the goal of the legislation as amended by Act 462 to create an individualized, child-focused system that supports a seamless provision of services for children and families as they move through the seven key transactions necessary for age-appropriate language and literacy outcomes. The seven key transactions are: 1) newborn hearing screening; 2) diagnostic evaluation; 3) Early Hearing Orientation Specialist (EHOS) visit; 4) Early Intervention; 5) transition; 6) preschool services; and 7) school-based services. In September 2022, Georgia Mobile Audiology was added to the task force to collaborate on this report and to further inform strategies.

 

As a result of this collaboration, the BCW/Part C and EHDI programs are working more collaboratively with DECAL and DOE to monitor and strengthen the systems that support early identification, intervention, language development, academic achievement for DHH children across the service continuum from birth to third grade.

 

Due to COVID-19, concentrated efforts were made to ensure that families continued to receive Early Intervention services through enhancing remote services via telemedicine. On March 1, 2022, families had the choice to receive in-person visits or continue with remote services. Many providers and families elected for a hybrid model of both in-person and remote visits. Early intervention services that occur within the family’s natural environment (i.e., family home, childcare center) are prioritized when possible while making remote services available when needed. By continuing to provide remote services, the program can provide services to families in areas of the state who do not have access to certain providers for in person services. The continued utilization of remote service delivery has resulted in an increase of referrals to the program.

 

Current Year:

The BCW program is Georgia’s Part C early intervention program that serves children birth to three with a diagnosed medical condition that places the child at risk for developmental delays or a significant developmental delay in at least one area of development or two moderate delays.

 

The program realized an increase in referrals after the implementation of remote service options and continues to make concentrated efforts to address the state’s provider network shortage by focusing on increasing the number of providers and addressing the strengths and challenges within the program. The BCW Provider Relations Manager has formed partnerships with colleges and universities across the state to recruit contract providers. In addition, the program has ongoing job postings listed on the agency website and on the nationwide collegiate job board, HandShake. The program is working with DPH Communications to incorporate provider recruitment into the program’s upcoming marketing campaign.

 

To ensure that BCW policies and procedures are streamlined across the state, the program has implemented a policy workgroup that consists of both agency and district staff. The purpose of the workgroup is to review and clarify program policies and procedures related to consistent implementation of the BCW/Part C program. As policies are updated, related training is developed and provided to district staff and contract providers to ensure understanding of program requirements and expectations. Some of the recent training offered by the program include Individualized Family Service Plan, outcome writing, child interest activity plan, Infant Early Childhood Mental Health endorsement, and billable documentation training. The BCW Regional Manager and Program Consultant has developed a data monitoring plan across all 18 district BCW programs to ensure that all local programs are maintaining compliance and improving outcomes for children and families. Quarterly data monitoring reviews are conducted by the DPH BCW staff to monitor and promote regular program data reviews so that the Annual Performance Report (APR) of required federal program compliance and performance indicators will increase in efficiency and accuracy. Along with the new data monitoring plan, the program has recruited members from the State Interagency Coordinating Council (SICC) to aid and support in the form of reviewing processes and providing feedback prior to the implementation of data monitoring plans.

 

The BCW program continues to collaborate with other state agencies, stakeholders, and community organizations who provide services and support to similar populations (Birth – 36 months). The collaboration between the Department of Public Health 9DPH), the Department of Education (DOE), and the Department of Early Care and Learning (DECAL), to strengthen the transition process between state agency programs. The BCW program works with the 619/Part B Lead Agency (DOE) and the Early Head Start/Head Start Director (DECAL) to ensure a consistent understanding of the federal transition requirements/regulations between programs. BCW, 619/Part B, and Head Start programs are planning to relaunch transition forums across the state, allowing opportunities for BCW local program coordinators, Local Education Agencies (LEAs), and Head Start programs to come together to discuss transition expectations and local implementation plans. Regular meetings will be held to discuss challenges and next steps to ensure effective and compliant transitions. These transition forums will take place across the state in different districts to ensure that representatives from each state program agency (in the area) are able to attend the forum.

 

Recently, BCW has partnered with Georgia Infant and Early Childhood Mental Health (IECMH) and the Georgia Association of Infant Mental Health (GA-AIMH) to address the growing issue of childhood trauma in the state of Georgia. Recent studies have shown that approximately 3 out of 5 children in Georgia experience at least one adverse childhood event (ACE), such as witnessing or experiencing abuse, living with a caregiver who uses substances, or having a parent who is incarcerated. Georgia Infant and Early Childhood Mental Health (IECMH) focuses on the earliest experiences of a child’s life from the prenatal period through age 5.  The promotion of IECMH supports the nurturing of relationships and environments that can help prevent ACEs and mitigate the negative impacts when a child does experience trauma. Evidence-based, relational treatments, such as Child-Parent Psychotherapy (CPP), promote IECMH and support families and communities in creating nurturing and safe environments. Knowing this, BCW has partnered with GA-AIMH to identify opportunities to support infants and toddlers’ mental health.  Georgia State University (GSU) and the Department of Early Childcare and Learning (DECAL) has also joined this partnership to pilot BCW’s ability to provide CPP services to eligible families.

 

Child-Parent Psychotherapy (CPP) is an evidence-based, relational treatment approach for young children from birth to 5 years of age who are currently or are at an increased risk of experiencing behavioral and mental health concerns because of exposure to traumatic events, environments, or relationships. The CPP approach is designed to promote physical and emotional safety for the family and support attachment between young children and the caregivers in their lives. Treatment focuses on the dyadic parent-child relationship and family factors as well as contextual factors such as cultural norms and the social-political environment. The CPP service approach is being piloted in three local health districts which are Athens, Macon, and DeKalb. Supporting the implementation of the CPP pilot are Licensed Clinical Social Workers (LCSW) who have completed 18 months of training and supervision to become certified to provide CPP to BCW families. These licensed clinicians are partnered with the local BCW program to incorporate CPP on the Individualized Family Support Plan (IFSP) for children who have experienced trauma. Evaluation and assessment of the CPP pilot initiative is assessed, the clinician’s ability to successfully complete the required training is monitored, and the family’s satisfaction in participating in the pilot is assessed and the results are shared with the program.

 

In addition, BCW is collaborating with the University of Georgia (UGA) to conduct an Environmental Scan of Georgia’s BCW System with input from stakeholders including families and providers to provide an understanding of patterns of usage across regions and demographics, information about barriers interfering with enrollment, and supportive factors that facilitate enrollment. Nationally, research shows that less than 15 percent of children eligible for Early Intervention services access intervention and that minority groups disproportionately enroll in early intervention programs. Data gathered from the Environmental Scan will inform the development of a health equity plan to increase access to services in communities with low referrals and high needs. Data will also be used to create a provider engagement plan to increase BCW program awareness among colleges and universities. Data from the environmental scan will be shared with all members of the BCW program including local program leaders, the SICC, and other stakeholders.

 

Priority Need: Improve Systems of Care for CYSHCN

 

NPM 12: Transition to Adult Care for Children with and without special health care needs

 

Children’s Medical Services

 

Children’s Medical Services (CMS), Georgia’s CYSHCN program, provides access to a comprehensive system of health care services, linkages to community- based resources and supports, financing for medical expenditures and health care transition planning for youth/young adults and their families moving from pediatric to an adult model of care. Services also include pediatric specialty clinical care, where patients are seen by a provide face to face or via telemedicine, in rural areas of the state as well as periodic home visiting for families caring for children and youth with special health care needs.

 

Through a statewide network of 18 local public health district CMS programs, public health nurses and social workers provide care coordination services for more than 6,000 families annually. The care coordination provided to families is patient- and family-centered, assessment-driven, team-based and meets the needs of children and youth with special health care needs while enhancing the caregiving capabilities of families. Care coordination services addresses and incorporates health care transition planning.

 

The CMS program implements the Six Core Elements of Health Care Transition, an evidence-driven approach to successfully transition youth and young adults from a pediatric to adult model of health care. The CMS program supports youth in acquiring independent health care skills, preparing for an adult model of care, and transferring to new providers without disruption in care. On an annual basis, more than 1,200 youth/young adults are engaged in the CMS transition planning process. 

 

Due to the Covid 19 pandemic, transition planning was limited to over the phone vs. in-person, readiness assessments were sent and returned via mail and many young adults were not able to attend the annual review visit to develop health care goals. There were four (4) local public health district CMS programs that utilized videoconferencing for care coordination services.

 

The Title V State Action Plan for CYSHCN outlined the following key strategies to improve the services necessary for children with and without special health care needs to successfully transition from pediatric to adult health care; transition planning quality improvement, implementation of condition specific transition protocols, transition education for youth and families, transition advisory group, transition outreach and awareness and Six Core Elements of Health Care Transition education for health care providers.

 

Current Year:

To improve organizational support, the CMS program onboarded a full-time dedicated Family Engagement Manager in June 2023 and Youth Engagement Coordinator in October 2022. With additional program support, the program is exploring various opportunities to enhance youth and family engagement practices especially in rural and underserved communities across the State. The Family Engagement Manager position will focus on quality improvement activities for the Parents as Partners project, develop community resource navigation trainings and tools, identify and coordinate parent leadership training opportunities and convene family advisory groups for CYSHCN-related issues.

 

The Youth Engagement Coordinator is a CDC Public Health Associate and will remain with CMS until early 2025. This position will coordinate and support various activities associated with the Health Care Transition Outreach and Engagement Campaign including planning, development, implementation and evaluation. Responsibilities will also include coordinating the youth advisory group, expanding partnerships with youth-led organizations and developing peer to peer transition education training modules.   The goals of the HCT Campaign are to increase the number of youth/young adults that receive health care transition information and the number of community partners and stakeholders that are engaged in health care transition planning and implementation activities.

 

Health Care Transition Planning Quality Improvement

The CMS program quality improvement efforts focused on transition to adult care data collection and community resource navigation. A revised data collection process for health care transition performance measures was developed and implemented to ensure a streamlined process across all 18 local public health district CMS programs. The process resulted in revised program data collection tools, updated guidance on patient record documentation and training for CMS coordinators. CMS also conducted quarterly transition case review audits to ensure health care transition planning procedures and documentation were being met. Technical assistance included sharing strategies on engaging and partnering with adult providers, parent mentors, and education transition specialists as well as presentations and program materials on community transition resources. To assist young adults with continuity of care as they age out of public benefits, resources were provided on community safety net clinics, federally qualified health centers, Medicaid services for adults, prescription assistance programs, and adult services available in the health departments.

 

The CMS program provided funding for transition services to the Adult Disability Medical Healthcare (ADMH), a non-profit organization that provides medical care to youth and young adults with intellectual and developmental disabilities. ADMH services are based on the patient centered medical home model and is supported by a multi-disciplinary team. ADMH provides transition planning and counseling, utilizes an age based and developmentally appropriate transition readiness assessment and planning tool and discusses emergency preparedness planning with families. The contractual partnership with ADMH began in 2016. The number of funded transition clinics increased from three to seventeen. More than one hundred individuals are served annually. The number of physicians supporting the transition clinic grew from two to four physicians, which made an impact in the ability for the clinic to serve more patients.

 

CMS worked closely with ADMH to incorporate telehealth services in their standard of care. DPH provided telehealth technology and training to ADMH. The program used the technology for program planning and connecting with the behavioral analysts for consultation services. With the impact of COVID-19, ADMH provided their comprehensive transition clinic visit remotely with patients in their home. ADMH’s capacity to serve the community and individuals with developmental disabilities has grown considerably over the years and their model of care proves to be effective, compassionate, and supportive.

 

Leveraging Preventative Health Block Grant funding, Child Health partners with the Emory Autism Center (EAC) Education and Transition Services program on an initiative entitled Individualized Transition to Adulthood Plan (ITAP). This initiative supports the iterative development of a model of transition planning best practices for students with autism spectrum disorder (ASD). This model is strongly aligned with the Taxonomy for Transition Planning, developed by Kohler and colleagues (1996). The person-centered approach combines individualized Transition Assessment, educator training and technical assistance, parent engagement, collaboration with State agencies and schools, and infrastructure development. Emory Autism developed materials and resources for health care providers to offer services aimed at helping young people with autism spectrum disorder adopt a more independent and empowered lifestyle as they transitioned into adulthood. In collaboration with the CMS program, education was provided to pediatricians and family physicians on supporting young adults in transitioning to adult healthcare services through various training modalities; which included webinars, lectures presentations, and grand rounds for medical residents.

 

Current Year:

The CMS program quality improvement efforts focused on revising the health care policies and procedures as well as documentation to ensure care coordinators have the tools necessary to better support young adults with medical complexities and their families. The revisions will help to streamline the transition planning workflow and offer more guidance on required documentation and linkages to community supports. The transition policy statement, progress tracking form, readiness assessments, emergency care plan, medical summary and transition resource sheets were all updated. The transition feedback survey is now included with the readiness assessment and easy to complete via survey link or QR code. The transition feedback survey will assess the family’s experience and offer opportunity to provide feedback on the support and education received from the program. Young adults and parents/caregivers will receive copies of the readiness assessment which includes the jointly developed transition goals as well as QR codes and hyperlinks to community resources and supports.  

 

Got Transition’s annual self-assessment profile documents Georgia’s progress with incorporating the Six Core Elements of Health Care Transition™ over the past five years. In 2022, Georgia’s total score is 23 out of 28, a 64% increase from a score of 14 at baseline. Results collected at baseline was completed in 2017. The assessment is self-reported and includes the following benchmarks, levels ranging from 1 (basic) to 4 (comprehensive), with a total possible score of 28. The CMS program transition efforts earned Level 4 for Transition Policy, Tracking & Monitoring, Readiness, and Planning. Level 2 was achieved for Transition Transfer of Care and Transfer Completion. To improve level 2 status for Transition Transfer of Care, the CMS program will work on adult provider outreach and engagement to ensure care coordinators can refer and share transition plans with patient’s new provider(s). Currently, 46% of CMS young adult program participants ages 18 to 21 have transferred to an adult provider or adult model of care. Level 3 was achieved for Youth & Family Engagement and will continue to improve to level 4 with additional staff support and transition campaign activities.

 

Adult Disability Medical Healthcare (ADMH) received continued funding to provide transition services for youth and young adults with intellectual and developmental disabilities. ADMH provides transition planning and counseling, utilizes an age based and developmentally appropriate transition readiness assessment and planning tool and discusses emergency preparedness planning with families. The number of funded transition clinics increased from 17 to 24. With the increase in the number of clinics provided, more than 160 individuals are served annually. ADMH became a member of the National Association of Free & Charitable Clinics (NAFC) whose mission is focused on the issues and needs of the medically underserved. This partnership leverages medication access and discounted supplies for patients, training as well as opportunities for grant funding.

 

The Behavioral Health and Development program continues to conduct Transition Assessments with students across two pilot sites of the Individualized Transition to Adulthood Plan program. Tapestry Public Charter School (Tapestry) is an inclusive charter school within the Atlanta metro area (i.e., DeKalb County School System); the second pilot site is Tift County Schools. The ITAP team completed 10 comprehensive Transition Assessments with students enrolled at pilot sites. Of these individuals, seven students and families have participated in Transition Assessment feedback meetings led by the ITAP team. The program expects to complete the remaining feedback meetings early in the FY24 ITAP Project year.

 

The ITAP assessment model includes multi-source interviews, behavioral observations, behavioral rating scales, and a review of available records/reports (e.g., student IEP, psychological evaluations). As project operations continue to transition from COVID-19 related public health policies, all Transition Assessments were conducted virtually and in-vivo student observation did not occur. Each student who participates in an ITAP Transition Assessment receives a personalized report with goal and activity targets in all available areas of the IEP Transition Plan (i.e., Education/Training, Development of Employment, Community Participation, Adult Living Skills and Post-School Options, Related Services, and Daily Living Skills).

 

The ITAP team conducted several trainings for educators at two pilot sites, in conjunction with Georgia Learning Resources System, and by request from partners and colleagues. Each training focused on general transition planning for students with ASD and on specific strategies for writing meaningful, individualized transition plans. When possible, the program included opportunities for guided practice (e.g., writing workshops, small group learning activities, and low stakes knowledge checks).

 

Family Partnerships and Youth Engagement

There are 7 Parent Partners available in local district child health programs and pediatric specialty clinics ready to support other parents that are going through the process of supporting their youth with the move from pediatric to adult care. The Parents as Partners project is funded by the CMS program and administered by Parent to Parent of Georgia (P2PGA), Georgia’s Family to Family Health Information Center. Parents as Partners are parents of a child or youth who has a special health care need and provide support to other parents who have children with special health care needs. The Parents as Partners are paid as part-time employees of P2PGA. Parent Partners provide one-on-one assistance, information, guidance, and referrals on educational and health-related issues to families as well as maintain ongoing communication with staff at the designated site to share challenges and barriers experienced by families receiving services. Parent partners organize transition related trainings for families across the 7 sites they support. On an annual basis, more than 4,000 families of children and youth with special health care needs ages birth to 26 access to P2PGA’s special needs database and hotline which provide information and resources including transition to adult care.

 

The CMS program increased the number of community partners to include Georgia HOSA- Future Health Professionals (HOSA), Georgia Advocacy Office (GAO), Amerigroup 360, Georgia Campaign for Adolescent Power & Potential (GCAPP), Department of Family and Children Services (DFCS), and Georgia Family Connections. These partnerships allowed the program to expand engagement with youth through educational activities and provide opportunities for youth feedback on health care transition topics. The CMS program facilitated five virtual focus groups with 48 youth between the ages of 14-23. The focus groups gathered information from youth on their understanding of health care transition, general health and wellness topics, transition messaging, and marketing strategies. The information provided was instrumental in developing the communication and dissemination plan for increasing the number of youth/young adults that access health care transition information and resources.

 

Current Year:

Since the initiation of the Parent as Partners project, there have been 17 parent leaders trained and providing support to families receiving BCW and CMS services. Parent Partners provide one on one assistance to more than 700 families on an annual basis and coordinate more than 70 trainings in the areas of early intervention, transition planning, special education services, and Medicaid Waivers.  Parent Partners received Six Core Element training to help improve one on one assistance with families in the areas of health care transition planning and provided feedback on the program’s revised transition policies. Parent Partners are also participating in the Family Voices Title V Community of Practice (CoP) and provided several recommendations to improve communication, trainings, leadership development and partnering with program staff at their designated sites.

 

The CMS program also partners directly with youth to support planning activities associated with the Health Care Transition Outreach and Awareness Campaign. In collaboration with Georgia HOSA, the program received more than 50 applications from interested youth to participate in the CMS Steps Up for Youth summer workgroup. After careful consideration, 10 youth were selected for the workgroup to participate in the inaugural CMS 2023 summer workgroup. This workgroup consists of 8 weekly sessions in which youth will learn about health care transition concepts and are compensated for their participation and involvement with creating digital marketing content for the Campaign.

 

Health Care Transition Planning and Six Core Elements Training

Through contractual partnership with the Georgia Academy of Family Physicians (GAFP) and the Georgia Chapter of the American Academy of Pediatrics (GA-AAP), the CMS program provided continuing education on the Six Core Elements of Health Care Transition to pediatricians, family physicians, pediatric nurses, as well as medical students. Trainings were offered via webinar as well as face-to-face at the member organization’s annual Fall and Summer Conferences. There were 281 medical providers that received training on health care transition and the Six Core Elements framework. Both GAFP and GA-AAP also included health care transition related articles and resources on their webpages and newsletters for physician members to access.

 

In partnership with Parent to Parent of Georgia (P2PGA), parent/caregivers had access to annual workshops on Preparing Your Adolescent for the Transition from Pediatric to Adult Health Care. Parent leaders facilitated the workshops and utilized the curriculum adapted from the Waisman Center and had accompanying workbooks for families to document their transition goals as well as activities to help their youth practice independent health care skills such as setting appointments, scheduling transportation, and filling prescriptions. Six workshops in English and Spanish were funded through the contract with P2PGA and 182 parent/caregivers participated in the trainings. Due to COVID-19, workshops were provided to families virtually. Workshops also included subject matter experts from the Marcus Autism Center and the Georgia Advocacy Center to focus on supporting individuals with intellectual and developmental disabilities and promoting self-determination skills.

 

ADMH provided trainings to families on how to support the transition needs for youth and young adults with intellectual and developmental disabilities. Trainings were offered on community and independent living, as well as person-centered planning. ADMH also developed and piloted a Developmental Disability Sensitivity Training: Guidelines for Professionals and Health Care Practices. The training addressed the challenges to providing primary medical care for adults with ID/DD before, during and after the visit, integrating health care transition planning and preparation with the patient and family and shared tips and resources to improve care for patients with ID/DD within a practice. ADMH provided trainings to 163 families and health care professionals.

 

Additional training opportunities were provided for youth through partnership with Georgia HOSA’s Annual Spring Conference. More than 175 middle school, high school and college students learned about health care transition. Georgia HOSA has state and local chapters that provides opportunities for knowledge, skill and leadership development of health science education students.

 

Current Year:

Through contractual partnership with the GAFP and the GA-AAP, the CMS program provided continuing education on the Six Core Elements of Health Care Transition to pediatricians, family physicians, pediatric nurses, as well as medical students in the current year. Trainings were offered via webinar as well as face-to-face at the member organization’s annual Fall and Summer Conferences. There were 184 medical providers that received training on health care transition and the Six Core Elements framework. Both GAFP and GA AAP also included health care transition related articles and resources on their webpages and newsletters for physician members to access.

 

In partnership with Parent to Parent of Georgia (P2PGA), parent/caregivers had access to annual workshops on Preparing Your Adolescent for the Transition from Pediatric to Adult Health Care. Seven workshops in English and Spanish were funded through the contract with P2PGA and 349 parent/caregivers participated in the trainings. Workshops were provided face to face as well as virtually and all were facilitated by a parent leader. Families also participated in the Life Skills Training series hosted by ADMH. Information on SSI & Medicaid, Guardianship, Medicaid Waivers and Family Support were provided to more than 100 families.

 

Community Outreach and Awareness

To assist with efforts to educate families, youth/young adults, and professionals on health care transition, the CMS program revamped the DPH transition from pediatric to adult care webpage. The webpage has questionnaires and links to feedback surveys incorporated throughout to assess transition readiness and satisfaction with the transition information presented on the site. There is also the collection of transition materials specifically developed for families and youth. These materials are marketed at annual outreach events such as health fairs, expos, school transition fairs, and conferences and are now hosted on the revamped webpage.

 

The health care transition communication and dissemination plans were developed to help inform youth/young adults, families, health plans, medical providers, state agencies, and community partners on health care transition Six Core Elements framework, services, resources, and tools. The plan has four phases: The Phase I: Youth Health Care Transition and Health Care Coverage.  Marketing and communications tools developed for youth/young adults to understand the importance of taking charge of their health care, knowing their health insurance status, how to access health care coverage, and how to access health care if uninsured. Phase II: Health Care Transition Linkages to Resources and Services for Families. Marketing and communication tools developed for parent/caregivers to increase their awareness of the services and resources available to assist in their long-term planning and supports for their youth/young adult. Phase III: Health Care Transition Practice Tools for Physicians. Marketing and communications tools developed for pediatric and adult medical providers to begin operationalizing transition protocols for the adolescent well child visit. Also, tools to help collect, assess, and disseminate information on providers that are implementing transition protocols, require technical assistance, and resources for their patients. Phase IV: Health Care Transition Tools for Health Plans and Care Management Organizations. Marketing and communications strategies and recommendations for health plans to utilize for youth engagement for maintaining coverage through 26 years of age, promote youth independence, and appropriate linkages for adult providers and health care resources. The communication plan will be used to drive the Health Care Transition Outreach and Engagement Campaign.

Current Year:

School districts began hosting face to face transition fairs this year and the CMS program developed materials for local public health district CMS programs to distribute. The materials included the transition timeline and QR codes for the CMS transition webpage, health care transition quiz and planning for adult care workbook. CMS staff provided information to more than 980 high school students across four public health districts.

 

The Health Care Transition Outreach and Awareness Campaign is underway. The campaign will address the four phases outlined in the communication plan. The CMS STEPS Up for Youth summer workgroup will help to inform Phase I activities within the next few months.

 

CMS provides health care transition education, resources and planning for program participants 12 years of age and older and their families. The Six Core Elements of Health Care Transition framework is used for developing and implementing program policies and procedures, communication tools and training materials for youth, families, community stakeholders and health care providers. The CMS health care transition policies and procedures creates a roadmap for care coordinators to effectively support youth/young adults and their parent/caregivers with the move from pediatric to adult care. CMS care coordinators receive ongoing training, technical assistance, quality assurance monitoring as well as access to transition resources and community supports.