Aligning the Title V Children with Special Health Care Needs (CSHCN) Program’s policies and goals with those of the Health Resources and Services Administration (HRSA) and the Association of Maternal and Child Health Programs to prioritize enabling services over provision of direct, one-on-one services continued in 2021. Earlier infrastructure-building activities to support this work occurred in 2020 when CSHCN Program policy was promulgated. Program policy adjusted program categories and funding amounts for direct services. In 2021, the program updated the guidelines distributed to parents, professionals, agencies, health care providers, and related agencies. The updated included coverage of co-pays in addition to insurance deductibles and coinsurance. The Title V CSHCN Program communicated this information through outreach efforts to educate parents and stakeholders about the value of the program to families of CSHCN. Other key activities in this reporting year included analyzing procedures, developing, and analyzing needs assessments, and strategic planning based on results of needs assessment and stakeholder input.
Modifications in Arkansas’s health care delivery system resulted in a need for analysis of the Title V CSHCN Program’s internal framework. In January of 2019, Arkansas’s Medicaid-funded Provider-Led Arkansas Shared Savings Entity (PASSE) 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. Children enrolled in a PASSE have access to 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. The Division of Developmental Disabilities (DDS) formed a 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 part of their intake process as appropriate for children with complex medical needs. The PASSEs provide both direct services and care coordination; Arkansas’s four PASSEs currently serve approximately 54,000 members. Some families of CSHCN formerly receiving case management through the Title V CSHCN Program moved to a PASSE. Data analysis indicated a need for 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.
To meet federal guidance and requirements and to reach program goals, the Title V CSHCN program has focused on increasing referrals and the number of children under the age of 5 served as well as increasing the number of children with developmental disabilities. Outreach efforts to primary referral sources for this population ensures that families of all children with needs beyond those of their same-aged peers have access to support and services. Key outreach activities geared toward increasing referrals for these populations include partnering with the State’s Part C early intervention and Part B-619 early childhood special education programs, school nurses, and special education coordinators. The program also shares program and referral information with the DDS CES Waiver Intake and Referral Unit, regional CoBALT and UAMS diagnostic clinics, Early Intervention Day Treatment (EIDT) day habilitation programs for children birth to age 6, and the James L. Dennis and Schmeiding Developmental Centers.
Other broad outreach efforts to increase referrals to the program involved updating program information on the ADHS website in 2021.
Arkansas’s CSHCN Program has strong partnerships with families, stakeholders, and colleagues who work together to achieve program goals and objectives. To ensure that the Title V CSHCN Program continues to support eligible families, nurses and area managers conduct outreach to local 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 special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care.
Strategy 12.1: Increase the percentage of primary care provider practices of transition age 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 2021 focused specifically on primary care physicians (PCP) of children ages 12 through 17 receiving services from the Title V CSHCN Program. To begin this work, the program gathered information on all transition-aged children served by the program along with a report of the primary care practitioners serving this group. Pediatric care providers serving this population (n=91) included pediatricians, family practice doctors, or advanced practice registered nurses. The Got Transition self-assessment materials were provided to these practitioners along with a cover letter explaining the project and requesting their participation.
An identified barrier to engaging PCPs in the Transition Self-Assessment project was limited access to meet with clinicians during the pandemic. Title V CSHCN Program nurses called clinicians’ offices to engage them in the project. As a result of personal outreach by program staff, 83% of the 91 primary care practitioners identified completed the self-assessment checklists by telephone. The remaining self-assessments were completed by email (13%) or postal mail (4%).
The Current Assessment of the Six Core Elements of Health Care Transition Activities was distributed to 91 primary care practitioners in the state identified as the medical home for CSHCN aged 12-17 enrolled in the Title V CSHCN program. Fifty-four of the 91 primary care practitioners completed the Current Assessment of the Six Core Elements of Health Care Transition Activities either for transitioning to an adult health care provider (63% pediatricians) or for transitioning to an adult approach to health care without changing providers (37% family practice).
Seven self-assessments were completed and submitted via email and two by postal mail. To increase clinicians’ participation in this assessment, program staff conducted outreach by phone to clinicians’ offices. Forty-five self-assessment checklists were completed by phone through personal outreach. The 2021 annual objective of 34.0%, was met with program data demonstrating a 59.34% response rate. The 59.3% rate of response in 2021 is a significant increase from the 33.9% response rate in 2020.
To encourage practitioners who participated in 2020 to work with the Title V CSHCN Program in 2021, the program mailed each clinic that participated in the previous year a letter with their practice’s Six Core Elements Self-Assessment total. The mailout included information about a free online training titled “Health Care Transition for Adolescents and Young Adults” sponsored by Health Services for Children with Special Needs, Inc. (HSCSN), the National Alliance to Advance Adolescent Health/Got Transition, and DC Health. Those attending received continuing education credits.
Strategy 12.2 Increase the percentage of key stakeholders and referral sources who participate 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.
The collaborative partnership with the State’s Office of Special Education Programs (OSEP) Parent Training and Information Center (PTIC) continued in 2021. Arkansas’s PTIC is 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.” TCFEF and the CSHCN program worked together to support parents of youth. Title V referred 15 families to TCFEF for support with a child’s Individualized Family Service Plan (IFSP) or Individualized Education Plan (IEP). TCFEF’s work with the State’s Part C Program, First Connections, also benefitted families of children served by the Title V CSHCN program. TCFEF and First Connections co-facilitated two workshops in October 2021 that Title V CSHCN regional care coordinators could attend and invite CSHCN families. One workshop was geared directly for case managers on how to explain IFSP or IEP dispute resolution options. The second course was a parent training, information, and education workshop on Dispute Resolution Options for Families. Both workshops were presented by Tiffany Kell of the University of Arkansas at Little Rock’s Bowen School of Law and Mediation Program.
Additional outreach to stakeholders and referral sources included sharing information and collaborating with school nurses, special educators, and paraprofessionals. CSHCN staff completed the following:
- Provided transition tip sheets from the state’s Parent Advisory Council (PAC) to parents, students, and school personnel
- Participated in Virtual Transition Fairs for Rogers High School and Cabot High School by providing program brochures including the CHC Assistance Program Guidelines, a video about Title V services, and answers to questions about available resources for local educational agencies
- Emailed CHC Assistance Program Guidelines for Parents, in English and in Spanish, and CHC Assistance Program Guidelines for Professionals
Strategy 12.3: Increase the percentage of transition age CSHCN (age 12 through 17) served by the Title V Program who received transition services and supports in the past 12 months.
In August 2021, the CSHCN Program obtained an unduplicated report of youth served by the program and updated the audit tool used internally. Area managers audited each community-based office under their direct supervision using the Transition Quality Improvement Audit Worksheet to assess whether CSHCN 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 documentation of provided “health care transition services” identified as the following:
- 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.
- CSHCN aged 12-17 were provided age- and diagnosis-appropriate health care transition resources.
- 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.
- Progress notes of electronic records documented health care transition activities.
These detailed audits provide quality assessment of internal processes to ensure that children aged 12-17 served by Title V received one or more transition services in a reporting period. The 2021 annual objective of 72.0% was met, with program data demonstrating that, of the 111 records of transition-aged youth who were audited, 92.8% received at least one identified health care transition service or support.
Additional personnel development to familiarize program staff with best practices in transition included group reflection and discussion (January 2021) after staff independently viewed the Got Transition webinar accompanying the new Family Toolkit. With staff input, the program updated the Title V Health Care Transition Protocol to incorporate the following components of the toolkit specific to the age of the youth:
- Parents and Children or Youth with Special Health Care Needs (CYSHCN) reaching age 14 or 15 will receive Health Care Transition Timeline for Youth and Young Adults and Health Care Transition Timeline for Parents/Caregivers.
- Parents and CYSHCN reaching age 16 will receive Charting the Lifecourse Tool for Exploring Decision Making Supports.
- Parents and CYSHCN reaching age 17 will receive Health Care Transition Tip Sheet #11 from the Parent Advisory Council, Turning 18: What it Means for Your Health.
- Parents and CYSHCN reaching age 18 will be mailed the timeline for young adults and parents or caregivers mentioned above.
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:
- Separating the internal written procedures for staff for health care transition from the protocol
- Creating a transition flowsheet outlining for each age group what the youth and parent or caregiver should receive
Strategies to support families included:
- Updating the Title V CSHCN website to include the most recent Health Care Transition Protocol
- Ensuring that families prepare for their child’s transition to adult health care while the child is in early adolescence
- 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:
- Training primary care and specialty care providers on the process of health care transition
- 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 (new in block grant submitted September 2021): Increase the number of School District Special Education Teachers/Professionals attending professional development training that complete a Title V Health Care Transition Readiness Assessment Survey.
Planning continued in 2021 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 July 2021, 45 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 participation of these Special Education Professionals provided baseline data for the Title V CSHCN Program. Baseline data exceeded the 2021 Annual Objective of 19.0%, with program data demonstrating that 45 special education professionals participated.
Special education professionals in attendance indicated that Health Care Transition Readiness Assessments for CSHCN in public schools are most often completed by parents, followed by IEP Team members, and the remainder by students (with or without support). In the survey, the special education professionals were asked to indicate to what degree an assessment is completed for special education students. Eleven of the 45 respondents stated that they provided assessments with all special education students on a consistent basis, and four of the 45 respondents indicated they provided assessments with all special education students but not on a consistent basis.
The survey results indicate that some school districts are promoting Health Care Transition Readiness Assessments with their special education students either on a consistent or inconsistent basis. 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.
Priority Need: Access to Care
SPM 3- (new in block grant submitted September 2021) Percent of families served by Title V CSHCN Program who report that their child received the health care services they 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 from the NSCH 2019-2020 was 14.6% for Arkansas, compared to HRSA Region VI at 17.6, and to the nation at 22.5.
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; Early Hearing Detection and Intervention Program; 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; Family 2 Family (F2F) Health Information Center in the Arkansas Disability Coalition, and the State’s OSEP-funded Parent Training and Information Center. 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 has resulted in an increase in referrals of young children under the age of 5 and to better cross agency collaboration to support families of children enrolled in two or more initiative programs.
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 their access to care. In this reporting period, partnerships were strengthened with the State’s Parent Training and Information Center, The Center for Exceptional Families (TCFEF) and with two of the state’s MIECHV home visiting programs, NFP and FBBH. Through a streamlined collaboration between the two initiatives, when a parent of a child dually enrolled grants consent, the Title V CSHCN nurse receives results of developmental screenings and/or evaluations completed by home visitors. The Title V CSHCN nurse can also be an active part of the IFSP or IEP team and help the family and the team to plan for transition to ECSE or to kindergarten. One initiative is being implemented statewide with a focus on infants birth to age 3. The second initiative focuses on birth to age 5 and involves all MIECHV home visiting programs, Part C and B-619, Early Head Start/Head Start, CSHCN, and F2F in a two-county pilot. Goals of both initiatives are to support children in transitioning to preschool programs or kindergarten and to ensure that families know how to promote their child’s health, early learning, and development. These newly formed partnerships are anticipated to improve both child and family outcomes while increasing referrals of children aged 0-5 to the CSHCN Program.
Strategy 3.1: Increase the percent of CSHCN who receive case management to support them in accessing needed services.
Data from the Social Security Administration (2021) shows that 22,016 children under the age of 18 in Arkansas were SSI recipients. According to data from an Arkansas Integrated Eligibility System (ARIES) Medicaid report, in 2021, 6,724 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 5,881 in calendar year 2020 to 6,724 in 2021. Combining the data for SSI and TEFRA recipients, approximately 28,740 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 2021 was 341, which represents 1.2% of children with disabilities in the state.
An analysis of data on children served by the Title V CSHCN Program sorted by child’s age indicates that the program predominantly serves CSHCN who are 5-12 years old (52.9% of current clients), followed by children 3-5 years old (21.5%), with only 8.1% of children currently receiving case management services under age 3. The percentage of children served under age 3 has increased slightly from 7.9% in 2020, 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.
The Title V CSHCN Program partnered with the state’s Part C early intervention program (First Connections) and began taking a more active role by having some Title V CSHCN staff members attend quarterly meetings of the Arkansas Interagency Coordinating Council, the advisory council to the state’s Part C Program. First Connections invited the Title V CSHCN Program to share a program overview so that members could carry this information back to their constituents. By building on the shared goals of supporting transitions, helping families advocate for their children, and helping families access needed resources, First Connections and Title V CSHCN programs began exploring new ways to work together. First Connections required 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.
Additional planning that began in 2019 continued in 2021, and the Title V CSHCN Program implemented the following strategies:
- The Title V CSHCN Program joined First Connections in a 0-5 Community Partnership Initiative with the MIECHV-funded Arkansas Home Visiting Network, Early Head Start/Head Start, the state’s Early Childhood Special Education program under Part B-619, and F2F. The initiative began as a pilot in two underserved counties (Crittenden and Van Buren) in April 2021. Program representatives shared information about their program to increase referrals between programs. Numbers of children enrolled in two or more partner programs are reported in monthly meetings. In the field, staff from all programs also report the number of joint planning meetings, Part C transition conferences or Part B kindergarten transition conferences attended, joint home visits made, and referrals to partner programs. With parent consent, CSHCN plans of care are shared with home visiting or early education programs, and CSHCN nurses are invited to be part of families’ IFSP and IEP teams.
- The Title V CSHCN Program joined the 0-3 Community Partnership Initiative between First Connections and FBBH in the scaleup to statewide implementation in May 2021. All Title V nurses attend monthly team meetings to share updates on implementation of strategies to reach initiative goals. FBBH and First Connections staff refer to Title V CSHCN to support parents of 3-year-olds in transitioning to preschool or other appropriate services.
Program data on care coordination activities provided to families and CSHCN is analyzed 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 178 families with information about Arkansas Health Insurance Premium Payment Program (ARHIPP) when many families were struggling financially due to COVID-19. ARHIPP is a resource for families with private health insurance and Medicaid in which eligible families receive Medicaid reimbursement of out-of-pocket expenses such as health insurance premiums. In 2021, Title V nurses referred 189 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. While the use of telemedicine during COVID-19 decreased travel expenses for many families, it did not eliminate travel. To assist families in covering the expense for travel to appointments or other needed care services, Title V care coordinators referred 330 families to non-Medicaid transportation brokers for transportation in 2021. Title V CSHCN Program’s care coordinators made 40 referrals for other DDS special needs services and 60 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. Case management also helped families of CSHCN access needed respite services funded through the DDS Special Needs Program. 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. Sixteen CYSHCN under age 21 were awarded DDS Special Needs services in 2021 for a total of $8,546.00. The average amount awarded per child was $534.13. 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.
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 and Spanish 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.
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 2021, 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 and Coinsurance, Parent Education, Medical Camps, Adaptive Equipment, Respite Services, and Vehicle Modification. In November 2021, insurance co-pays were added to the deductible and coinsurance category. A program-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 $72,980.30 provided gap-filling services for 29 unduplicated children when no other pay source existed.
Referrals to the program rely 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. 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 long-standing work of key stakeholders that make up the PAC supports the CSHCN Program’s work. Arkansas’s PAC is one of the oldest in the nation and has been in place 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 2021, the Arkansas PAC held the 8th 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:
- We Can and Must Do Better Reducing Restraint and Seclusion Across Arkansas and the Nation
- Brain Health: The Early Years (0-21)
- Parents as Partners in Early Developmental Surveillance
- To Puberty and Beyond: Resources for Families on Providing Sexuality Education for Youth with Disabilities
- An In-Depth Overview of Fetal Alcohol Spectrum Disorders
- Newborn Screenings: Good News for Arkansas Babies?
- Cyber Safety Education
- A Family Toolkit: Pediatric-to-Adult Health Care Transition
- Project Search Arkansas Initiative
- Partners for Inclusive Communities: Arkansas Autism Partnership
- What is Telehealth and How to Help Families With It
- Plan for Any Emergency with Smart911
- Inclusion in Early Childhood Education: Why it Matters
- The Center for Exceptional Families
The Whova platform reported 104 attendees, 508 messages, 50 community posts, and 57 photos shared during the conference. Twenty-two exhibitors provided information and resources through Whova. Collaborating partners included the Arkansas Learn the Signs—Act Early Ambassador, Disability Rights of Arkansas, Governor’s Council on Developmental Disabilities, F2F Health Information Center, Partners for Inclusive Communities, Arkansas Down Syndrome Association, Children and Youth with Sensory Impairment, Arkansas Autism Resource and Outreach Center, Community Connections, Project SEARCH, SMART911, 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.
The Family 2 Family Health Information Center is an important partner in the work of the Title V CSHCN Program. In March 2021, the Title V CSHCN trained F2F regional that coordinators about the program. A comparison of pre- and post-test scores shows that participants increased their knowledge of the program by 54%. F2F coordinators participate in regional community of practice sessions. The F2F Program, funded by HRSA through a Title V subgrant, is part of the Arkansas Disability Coalition. The Arkansas Disability Coalition was honored by being named the Family Voices Affiliate Organization for Arkansas in 2021. A Family Voices mini-grant was given to F2F as part of the 2020 CARES Act to support the training of families of CSHCN in telehealth. CARES Act funding improves access to care by equipping families in need with a tablet (including a camera) and 12 months of Internet access (if needed) to receive telehealth care services. In 2021, 23 families received the equipment. F2F regional coordinators partner with the CSCHN Program and the PAC to provide joint training for parents across the state. F2F coordinators supported the Title V CSHCN Program’s goals by creating two online YouTube videos, “Transition to Adult Health Care” and “Health Care Record Keeping,” posted on F2F’s YouTube channel.
Title V staff continued to work closely with F2F to provide information and support to families with CSHCN. Because of the COVID-19 pandemic, trainings and parent support groups were offered virtually. F2F reported that more families were able to attend virtually than they did in past in-person events. F2F provided family support by completing applications for benefits, providing information on COVID-19 testing centers, vaccination education, mask mandates, and early screenings for children. One coordinator reported that a mom was in tears after receiving an email containing resources. The mom stated, “People need this.” Coordinators creatively used drive-through events to help parents at health fairs, food banks, and music fests.
During 2021, F2F regional coordinators provided direct services to 2,239 families and 1,574 professionals. Regional F2F coordinators distributed 29 Health Care Plan books to families. The books, revised in 2021, 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 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 primary goal of the CoBALT project is to reduce wait times for screening, evaluation, and diagnosis of children suspected of having autism.
- The Title V CSCHN Program will continue to make referrals to early intervention or early childhood special education to support the learning and development of children age 0 to 5 with developmental concerns and/or autism.
Title V CSHCN Program representatives participate annually in CoBALT training to ensure that families utilizing CoBALT clinics are referred to the Title V CSHCN Program. In June 2021, CoBALT data presented at the November ACH Grand Rounds indicated that 1,090 children were referred and seen at the Dennis Developmental Center in Little Rock, while 157 families were seen by a regional CoBALT team and were diagnosed without a prolonged wait and travel to the state capitol. In April 2021, Title V staff attended a Dennis Developmental Center virtual staff meeting and presented an overview of the Title V CSHCN Program, with pre- and post-tests indicating that participants increased their knowledge by 33%.
An important way that the Title V CSHCN Program shares information 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, with the goal of enhancing their clinical expertise and leadership skills. 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 transition with pediatric and other professionals. For example, 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. As part of outreach, the Title V CSHCN Program was one of ten featured CAP lectures presented statewide and archived on the UAMS Learn on Demand website for access by health professionals for the next three years. The first Title V lecture was January 2021 on care coordination, with pre- and post-test results demonstrating an increase in knowledge of how families benefit from coordinated care by 25%. The Title V parent consultant also participated in the CAP Learn on Demand program by presenting Title V CSHCN Program Health Care Transition in December 2021.
In 2020, discussions began between the UAMS Department of Pediatrics (Developmental and Rehabilitative) and the Title V CSHCN Program about implementing a family-centered interdisciplinary network funded through Title V. An evidence-based case management approach would be used to assist parents newly referred through the evaluation and assessment process. UAMS hired a family navigator to support and engage families in navigating the health care system. Monthly Zoom meetings featuring interdisciplinary medical representation from the UAMS Department of Pediatrics (including a developmental/behavioral pediatrician, a psychologist, and a speech/language pathologist) and a Title V CSHCN nurse manager allowed families to ask questions on topics such as seizures, Applied Behavioral Analysis, medications, and TEFRA applications. These virtual family meetings were titled Guiding Parents Through Systems (GPS) sessions. GPS virtual meetings held in 2021 were attended by seven parents representing five families. The Zoom meetings were suspended in September due to changes in the COVID-19 pandemic and children returning to daycare or preschool/school settings either in person or virtually. GPS rerouted and began planning videos on topics of interest to be recorded with links added on the UAMS Dennis Developmental Center website.
In 2021, ACH requested that the Title V CSHCN program provide training on support for families of CSHCN who are not Medicaid-eligible to their partners in audiology, social work, Children’s University Medical Group, billing and financial assistance, discharge planners, and Arkansas Children’s Care Network. Training provided to 31 ACH staff included detailed information on the Title V CSHCN assistance program and the guidelines for parents (available in English and in Spanish) and professionals. The ACH outreach resulted in additional referrals to the Title V CSHCN Program.
Building relationships with hospitals and clinicians is not limited to sharing program information in professional development or conference settings. Working relationships between primary care physicians and the Title V CSHCN nurses support CSHCN and their families. Primary care physicians have a go-to person in their community to whom they can reach out for information or when they need assistance obtaining Medicaid services such as personal care and extension of Medicaid benefits for CSHCN patients. Additionally, these 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. Title V CSHCN supports these families by assisting them in completing required documentation. These activities help families of CSHCN access care and build positive working relationships with providers who feel confident in referring CSHCN to the program.
The Title V CSHCN Program provided outreach to the ADH’s Universal Newborn Hearing Advisory Board in 2021 to provide program information. Many of the children served by Title V CSHCN also receive ADH services. Comparison in participants’ pre- and post-test scores demonstrated a 7% increase in knowledge of the Title V CSHCN Program.
- Title V CSHCN Program staff served on the IHP Advisory Council and the IHP Learning Community. IHP Advisory Council meetings provide an opportunity to discuss collaborative efforts to strengthen the EHDI system’s capacity to provide family support and engage families of children who are deaf or hard of hearing. The discussion includes opportunities 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. These programs provide parent mentorship, support, training, and education to families of children who are deaf or hard of hearing or who have a dual sensory impairment.
- The MOA allowed the ADH to send parent contact information from the birthing hospital on 445 infants to CSHCN program for possible contact information updates for lost-to-follow-up activities. Analysis of hospital records identified five infants with co-occurring medical issues (risk factors) to refer to a Title V nurse. Title V staff were provided training on details of the MOA and written protocols to ensure that the ADH refers children who are deaf or hard of hearing to the Title V CSHCN program after diagnosis to reduce the number lost-to-follow-up after birthing hospital discharge. The IHP referred 46 infants with confirmed diagnosis of hearing loss to the CSHCN program between April and December 2021.
In 2021, enhancement to the IHP’s Electronic Registration of Arkansas Vital Events (ERAVE) database allowed Title V CSHCN staff to document which Title V services were provided to children who are deaf or hard of hearing and their families.
The partnership with First Connections resulted in an opportunity for the Title V CSHCN Program to be included on the roster of guest lecturers presenting information to pediatric residents on rotation at the Dennis Developmental Center. The training enables future pediatric professionals to be aware of the Title V CSHCN Program and how to make referrals. Comparison of pre- and post-test scores of pediatric residents trained by Title V staff in 2021 demonstrated a 31% 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.
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 39 medical residents in 2021 through 120 encounters. Due to restrictions on in-person meetings, visits via Zoom and telephone were used to carry out Project DOCC activities. Comments received from these visits include the following:
- “We appreciate the parents taking the time to talk with us about their kids. They are doing a great job of parenting. Thanks!”
- “The parent is the expert! I am so glad that I had the opportunity to talk to these ladies about their families and what all they do to make it work. I feel more prepared to be a part of the partnership.”
- “I cannot imagine being a resident during the pandemic. She asked questions about the Emergency Department and COVID screenings. She wants to be helpful now and in the future.”
- “The doctor asked a lot of questions about insurance options and what happens when a person transitions to adult care. I am glad so many questions were asked about my experience.”
The CSHCN Program’s partnership 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. The regional clinics provide access to care for many CSHCN who otherwise would not have local access to pediatric specialists. The outreach clinics include developmental clinics, physical medicine and rehabilitation clinics, and CoBALT clinics. 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 76 children to other appropriate services. In 2021, some children at regional diagnostic clinics participated remotely via telemedicine. Some clinics held in-person visits at facilities where social distancing was possible, and many operated through a blend of telemedicine and in-person visits. Title V CSHCN Program staff followed the DDS’s travel policy during the pandemic, which reduced in-person clinic participation to only one clinic in June 2021. To support families in this new virtual format, CSCHN Program nurses contacted families prior to the regional diagnostic clinic to screen for Title V CSHCN services and to assess any gaps in care. Nurses also contacted families after the visit if a child received a diagnosis. Families participating in the diagnostic clinics were mailed Title V application packets, a program overview brochure, and contact information for the CSHCN Program’s nurse affiliated with the clinic. The program increased the number of CSHCN served through this collaborative effort.
In 2021, the Title V CSHCN Program increased the number of staff attending health equity training to build their capacity to improve access to care for all CSHCN.
Title V CSHCN nurses providing case management services and members of the management team had many opportunities to engage in virtual webinars on health equity in calendar year 2021. All Program staff (100%) completed health equity training, with an average number of 12 webinars. The topics and trainings most often attended by Title V CSHCN staff included:
- LEND program health equity training during both semesters in 2021
- UAMS CAP lectures on social, economic, and environmental factors that affect health
UAMS’s Partners for Inclusive Communities provided training on Marshallese history and culture for disability providers. Some staff members participated in the National Workforce Development Center’s “Strengthening Skills for Equity” four-session training in March 2021. During the Association of Maternal & Child Health Programs Annual Conference, the nurse manager attended “Fathers Matter for Diversity, Inclusion, and Equity” as well as “Organizational Opportunities to Address Racial Inequities.”
Six Title V nurses virtually attended the 22nd Annual Chronic Illness & Disability Conference held in October 2021. Conference sessions covered improving outcomes and highlighted many health and social inequities. None of the trainings attended by Title V staff provided training evaluation results to be shared with leadership.
Additional strategies included communication and planning with the state’s Part C early intervention program’s staff development coordinator to discuss providing ongoing professional development credit to service coordinators and Part C direct service providers and home visitors who complete the training. The program will continue working with home visiting programs to support home visitors in using culturally competent strategies to engage families of CSHCN.
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