2020 Children with Special Health Care Needs Annual Report

 

Aligning the Title V CSHCN Program’s policies and goals with those of the Health Resources and Services Administration and the Association of Maternal and Child Health Programs, which emphasizes the importance of increasing enabling services rather than providing direct, one-on-one services, continued in 2020. Infrastructure activities included analyzing policies and procedures, developing, and analyzing needs assessments, and strategic planning. CSHCN Program policy was promulgated in 2020 and includes an adjustment to program categories and funding amounts for direct services. The program created guidelines to be distributed to parents, professionals, agencies, health care providers, and related agencies. 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.

Modifications in Arkansas’s health care delivery system generated a need for an analysis of the Title V CSHCN Program’s internal framework. In January of 2019, Arkansas’ Medicaid-funded Provider-led Arkansas Shared Savings Entity (PASSE) changed how services for high-needs 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 administrative costs and benefits for IDD patients, rather than a fee for services system. The PASSEs provide both direct services and care coordination; Arkansas’s three PASSEs serve approximately 40,000 members. 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. A centralized Division of Developmental Disabilities Services (DDS) Intake and Referral Unit was created as part of a move to managed care through the PASSE. This infrastructure change is expected to increase referrals to the CSHCN Program.

An analysis of data indicated a need for care coordination to be expanded to support families of CSHCN not Medicaid-eligible as well as Medicaid-eligible children not served in a PASSE. State infrastructure changes created by the phasing in of the PASSE system provided an opportunity for the Title V CSHCN Program to expand case management services to clients who do not have care coordination services available to them through other channels to support these families in accessing care and transitioning adolescents to adult health care services. To ensure that the CSHCN Program meets federal guidance and requirements, the program has focused on increasing the number of children with IDD and DD served in accordance with the federal definition of CSHCN as children who require services beyond those required by a typical peer. Outreach efforts to primary referral sources for this population includes sharing 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 - six years of age, and the James L. Dennis and Schmeiding Developmental Centers. Changes in the state system prompted program-specific changes that allow the program to be more closely aligned with the national objective of providing “family-centered, community-based, and coordinated care” to CSHCN.

Arkansas’s CSHCN Program has strong partnerships with families, stakeholders, and colleagues who all work together to achieve program goals and objectives. To ensure that the Title V CSHCN Program continues to support families of children with significant needs who meet program eligibility, nurses and area managers provided outreach to local primary care providers to explain benefits of the Title V CSHCN Program’s case management to ensure referrals. In addition to increasing referrals, ongoing outreach fostered collaborative relationships with related agencies that supported the CSHCN Program in reaching the goals outlined below.

 

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.

The 2018-2019 National Survey of Children’s Health revealed that 13.8% of adolescents with special health care needs in Arkansas received services necessary to make transitions to adult health care compared to 22.9% across the nation. To increase the percentage of adolescents with special health care needs supported in transition to adult care systems, Arkansas’ Title V CSHCN Program continued implementation of the following strategies:

• 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 about the importance of transition and elements of transition for CSHCN using the Six Core Elements of Health Care Transition tool and 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 2020 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=124) included pediatricians, family practice doctors, or advanced practice registered nurses. The Got Transition self-assessment materials were provided to these practitioners with information requesting their participation.

When the program received few completed self-assessments back from PCP offices (17%), program staff made phone calls to these clinics to engage them in the process. One barrier to engaging providers was limited access to be able to speak with them. A successful strategy involved phone calls to practices that included letting the practice know that their office serves as primary care practitioner for a CSHCN served by the Title V program. This successful approach was shared with the other area program managers. As a result of personal outreach by program staff, 83% of the 124 primary care practitioners identified completed the self-assessment checklists over the phone.

Forty-two 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 (57% Pediatricians) or for transitioning to an adult approach to health care without changing providers (43% Family Practice). The 33.9% rate of response in 2020 is a significant increase from the 25% response rate in 2019.

The program anticipated that the COVID-19 pandemic would create a barrier to implementing new policies and processes that support transition because primary care physicians’ attention was diverted to more urgent public health issues. However, the program revisited outreach, training, and other support to pediatric professionals in an ongoing fashion.

In 2020, all participating practitioners from 2019 received a letter with their practice’s Six Core Elements Self-assessment total. A simple, yet effective, health care transition resource was sought out on Got Transition due to the practitioners’ time limitations during the pandemic. The Medical ID Information for health management for iPhones and Android Phones was mailed to the practices as a resource to be given to youth and young adults.

• 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 Title V CSHCN Program provided outreach via “Transition Training.” Training conducted face to face in January and February of 2020 and one training conducted via a virtual platform included pre and post-tests, which provide a mechanism for measuring increase in knowledge from training. The three Transition Trainings conducted with pre and post-tests demonstrate that recipients of these trainings increased their knowledge of Health Care Transition and Title V CSHCN services by 23.2%.

However, by March 2020, travel restrictions due to COVID required that stakeholder and referral source outreach and training be conducted virtually. Title V CSHCN gradually gained skills in virtual platforms such as Zoom, Microsoft Teams, and Whova.

The NE Arkansas Area Manager through outreach formed a collaborative partnership with the State’s Parent Training and Information Center (PTIC), The Center for Exceptional Families (TCFEF). TCFEF’s mission is to “improve educational opportunities for students with disabilities, including students transitioning to adult life beyond high school.” The CSHCN Program provided live, virtual Transition Training to TCFEF staff (pre and posttests were not completed). TCFEF and The CSHCN program worked together to support parents of youth; Title V referred 38 families to TCFEF for support with a child’s Individualized Education Plan.

Additional outreach to stakeholders and referral sources included sharing information and collaborating with school nurses, special educators, and paraprofessionals. CSHCN staff:

• Provided Transition tip sheets from the state’s Parent Advisory Council to parents, students, and school personnel

• Participated in transition fairs at high schools in person during the first quarter of 2020 at Bryant, Cabot, and West Memphis

• Participated in a Virtual Transition Fair for North Little Rock High School

• Provided brochures and a video about services that Title V provides and the CHC Assistance Program and brochures to the North Little Rock High School for the Virtual Transition Fair

• Mailed Title V packets of program information to 21 Special Education Coordinators in Northwest Arkansas

• Presented CSHCN program information to nurses at Springdale Schools.

In addition to the outreach efforts to share program information with stakeholders and referral sources, the Title V CSHCN Program coordinated other activities to support health care transition for CSHCN. Program staff work and live in the communities they serve and network with related agencies and programs to provide a variety of community outreach to disseminate information about the CSHCN Program to families, referral sources, and providers.

 

• 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.

 

Efforts to increase the percentage of transition-aged CSHCN (age 12 through 17) served by the Program who receive transition services and supports annually began by collecting data on the percentage of children between the ages of 12 through 17 served by the program who received transition related services/supports during a 12 month period from the prior year’s birthday to the current year’s birthday.

The CSHCN Program updated the audit tool used and obtained an unduplicated youth report in August 2020. The Title V Health Care Transition Protocol was updated early in 2020 adding guidance on entering progress notes on transition activities in specific rather than generic terms. The program’s area managers audited each community-based office under their direct supervision using the Transition Quality Improvement Audit Worksheet. During this interval, each CSHCN between the ages of 12 through 17 years of age should have received at least one Title V health care transition service. In the audit, area managers reviewed records for documentation that:

• Transition goals and objectives had been added to the child’s Title V Service Plan for children in this age range.

• Families were sent a copy of the Title V Health Care Transition Protocol.

• Health Care Transition letter, with the anticipatory guidance enclosed, around transition planning was sent to parents of 12-year-olds, and 13-year-olds, as described above.

• CSHCN 12-17 were provided age and diagnosis appropriate health care transition resources.

• A six-month follow-up, as outlined in the Title V Health Care Transition Protocol, was conducted with the family and youth, if their condition allowed.

• Health Care Transition Readiness Checklists were completed for youth beginning at age 14 through age 17 years.

• CSHCN staff entered results of Health Care Transition Readiness Checklists into Survey Monkey.

• Progress notes of electronic records documented health care transition activities.

These detailed audits determined the number of children between the ages of 12 through 17 who received one or more transition services in a reporting period. Of the ninety-six records of transition-aged youth that were audited, 71.9% received at least one identified health care transition service or support.

Title V Community-based Office Staff were trained on the statewide audit results; seventeen Title V Nurses and Administrative Specialists were trained. Comparison between pre and posttest results demonstrates that 23.2% of those trained increased their knowledge.

Area program managers discussed the audit results individually with each community-based office and trained their regional program staff using audit data from their area. Using the quality improvement audit to measure program progress, the audit demonstrated that the percentage of families receiving health care transition services and supports increased by 13.88% from 2019.

In November 2020, staff were given a work assignment to view the webinar from Got Transition for their new Family Toolkit that was released the previous month. Title V CSHCN Team members were to prepare for an open discussion to talk about what they learned from the webinar or what was reinforced by the webinar that they already knew. Each team was to make recommendations of how the program can implement the Family Toolkit to help families in Arkansas. Some recommendations from the open discussion will be integrated into the Title V Health Care Transition Protocol in 2021.

The CSHCN Program’s efforts to increase the percentage of CSHCN who receive transition support also included:

1) Updating the Title V CSHCN website to include the most recent Health Care Transition Protocol.

2) Ensuring that families prepare for their child’s transition to adult health care while the child is in early adolescence.

3) Informing parents how important they are to their child’s successful health care transition and in securing long-term benefits for their child;

4) 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; and

5) Training primary care and specialty care providers on the process of health care transition.

An important step toward reaching the goal of increasing the percentage of CSHCN (age 12 through 17) served by Title V CSHCN who receive transition services is helping parents understand transition and its importance to their child and family. To help families prepare for transition, the Title V CSHCN Program utilized two parent letters, one for parents of youth aged 12 and another for parents of youth aged 13. These letters introduce families to the concept of health care transition. Each letter lists topics the parent might want to discuss with their 12 or 13-year old. The parents of the 12 and 13-year olds were mailed 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. Bright Futures is a national health promotion and prevention initiative led by the American Academy of Pediatrics and supported, in part, by the U.S. Department of Health and Human Services’ Health Resources and Services Administration’s Maternal and Child Health Bureau.

 

• Strategy 12.4: Increase the percentage of Title V families participating in the Title V Family Survey to identify family training needs surrounding health care transition.

Due to the public health emergency in 2020, the program was unable to connect with families to complete health care transition surveys about training needs. Training conducted virtually in this reporting year focused on topics identified from prior years’ surveys of families of CSHCN. The program will continue to distribute the Title V Family Survey to families and providers as well as to referral sources and other key stakeholders to assess ongoing needs for information on issues impacting the smooth transition of CSHCN to adult healthcare. These identified health care transition training needs will be incorporated into future trainings with parents and other key stakeholders.

 

Priority Need: Access to Care

SPM 3 Percent of CSHCN receiving care in a well-functioning system.

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-2018-2019 was 16.2 % for Arkansas, compared to 14.1% nationally.

Infrastructure development and strategic planning in 2020 improved access to care for families of CSHCN. Specifically, the Title V CSHCN Program developed strategies to form a stronger working relationship with other programs and agencies serving youth with special needs such as the Arkansas Department of Health’s Infant Hearing Program; Early Hearing Detection and Intervention Program; Nurse-Family Partnership and Following Baby Back Home visiting programs; First Connections/IDEA early intervention program; Arkansas Department of Education’s Early Childhood Special Education program; Family 2 Family, and the Parent Training and Information Center. Improved collaboration with these programs will increase referrals of CSHCN, improving these families’ access to care through the Title V’s care coordination services.

The Title V CSHCN Program relies on a state-wide network of partners to serve families of CSHCN and ensure access to needed and continuous systems of care for CSHCN. 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, new partnerships were formed with the State’s Parent Training and Information Center, The Center for Exceptional Families (TCFEF) and with one of the State’s MIECHV Home Visiting Programs, Following Baby Back Home (FBBH). In 2020, FBBH, Part C, and CHC programs worked together to plan a new birth to age 3 initiative (to launch in the spring of 2021) with a goal of improving families’ access to care and ability to promote their child’s health, early learning, and development. In a separate 0-5 initiative pilot in two underserved counties, the CSHCN program will partner with all MIECHV Home Visiting Programs and educational programs: Early Head Start/Head Start, and the State’s Local Educational Agencies providing Early Childhood Special Education (ECSE) programs serving preschool aged children with DD and/or special health care needs. These newly forged partnerships are anticipated to improve both child and family outcomes while increasing referrals of young children 0-5 to the CSHCN Programs.

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

To increase the percentage of CSHCN who receive case management, the program had to determine what percentage of CSHCN in the State eligible to receive case management vs the number of children currently served. The Title V CSHCN Program defines program eligibility using the following two disability categories of Medicaid for children: 1) Supplemental Security Income (SSI) and 2) Tax Equity and Fiscal Responsibility Act (TEFRA). The SSI Program pays benefits to individuals with disabilities who have limited income and resources. TEFRA is a Medicaid Program that helps families of eligible children cover the cost of care provided in home and community settings.

Data from the Social Security Administration (2020) shows that 23,802 children under the age of 18 in Arkansas were SSI recipients. According to data from an Arkansas Medicaid report, 5,701 children under the age of 18 were TEFRA recipients in 2020, with an additional 180 TEFRA recipients between 18 up to the age of 19 years, for a total of 5,881 under the age of 19. Combining the data for SSI and TEFRA recipients, approximately 29,683 children in Arkansas were categorized as being in a Medicaid disability category. A Therap report indicates that the total number Title XIX (SSI and TEFRA) served by the Title V CSHCN in 2020 was 329, which represents 1.11% of children with disabilities in the state.

An analysis of children served by the Title V CSHCN Program divided by age demonstrates that the age group predominantly served are CSHCN 5-12 years old (45.8% of current clients), followed by children 3-5 years of age (20.5% of current clients). Only 7.91% of children currently receiving case management services are under the age of 3. According to this data, program efforts to increase the number of eligible children served could focus on increasing referrals of children under the age of three by working more closely with the State’s early intervention program.

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 the quarterly meetings of the Part C Program’s advisory council meetings (Arkansas Interagency Coordinating Council). First Connections invited Title V CSHCN Program to share a program overview of information with the council so that AICC members could carry this information back to their constituents. By building on the shared goal of improving access to needed resources, the Title V CSHCN Program and First Connections’ regional service coordinators are strong potential referral sources for infants and toddlers with developmental delays and/or chronic health conditions. Planning that began in 2019 continued in 2020 to implement the following strategies:

• The Title V CSHCN Program will join First Connections in a 0-5 Community Partnership Initiative with the Arkansas Home Visiting Network, Early Head Start/Head Start, and the State’s Early Childhood Special Education program under Part B-619 and the Arkansas Department of Education. The initiative will pilot in two underserved counties in April of 2021.

• The Title V CSHCN Program will join the 0-3 Community Partnership Initiative between First Connections and Following Baby Back Home in the scale up to Statewide implementation in May of 2021.

• First Connections will implement a change in their process to refer every child with an active Individualized Family Service Plan (IFSP) to the Title V CSHCN Program prior to exiting early intervention at age three.

• The Title V CSHCN Program will collaborate with UAMS, CoBALT, First Connections, and other partners to form a cross-agency initiative in the Delta Region to support access to screening, evaluation, diagnosis, and support for children ages zero to five with suspected developmental delay so that these children and families can be routed to appropriate services.

Additional strategies to focus on increasing the number of children under the age of three to the Program include sharing information with and building relationships with Early Head Start, neonatal home visiting programs (Following Baby Back Home, Nurse-Family Partnership, SafeCare, and Healthy Families America), and the HIPPY two year old program to ensure that potentially eligible infants and toddlers are referred. The Statewide 0-3 Community Partnership Initiative with Following Baby Back Home and the State’s Part C early intervention program and the 2-county Pilot Initiative with MIECHV Home Visiting Programs, EHS/HS, and Early Childhood Special Education, both launching in the spring of 2021 will support the Program in increasing the number of children 0-5 referred to the program whose families will benefit from case management.

To support increased access to care for existing Title V CSHCN clients, the Program’s Care Coordinators provide case management services to families of program eligible CSHCN to support families’ access to services and to support CHSNCN in transitioning from pediatric to adult service systems.

The CSHCN program continues to expand the provision of case management for eligible children in Arkansas to align with federal goals for MCH Block Grant funded programs. Care coordination provided by the Title V CSHCN program is defined in the Arkansas Medicaid Provider Manual, as targeted case management, which are services that assist recipients in accessing needed medical, social, and other support services appropriate to the recipient’s needs. The Title V CSHCN Program must provide the following targeted case management activities:

1. Needs Assessment- a written comprehensive assessment of the child’s needs, including analysis of recommendations regarding the service needs of the child. The needs assessment includes:

a. Reviewing of records of medical/psychological evaluations to assess the child’s needs.

b. Developing a service plan with the family.

c. Assisting the recipient in accessing needed services by making referrals to service providers through telephone, written, or personal contacts.

2. Service Plan- a written plan developed with the family around identified needs that is used to:

a. Track the child’s appointments.

b. Perform follow-up on services rendered.

c. Monitor child’s progress.

d. Perform periodic reassessments of the child’s changing needs (including reviews of the child’s medical records).

3. Documentation- a written record of case management activities that support the child and family in accessing needed services. Care Coordinators prepare and maintain case records to include:

a. Documenting contacts with the family

b. Documenting referrals made on behalf of the recipient as well as contacts to providers to follow up on services provided.

b. Documenting service provided.

c. Ensuring that all reports, assessments, and the child’s progress notes are up to date in the child’s record.

Program Data on care coordination activities provides the total number of case management billing progress notes and the total number of children receiving case management annually. By comparing this data across 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 ensures that families of CSHCN have assistance in navigating the state and local care systems to access care and plan for their child’s transition to adult health care systems, but care coordination also improves child and family outcomes. For example, Title V CSHCN care coordinators provided 124 families with information about Arkansas Health Insurance Premium Payment Program (ARHIPP) in 2020 when many families were struggling financially. 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. Title V Nurses referred 183 families of CSHCN to the State’s Tax Equity and Fiscal Responsibility Act (TEFRA) program to increase access to care during calendar year 2020. Although the expansion 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 for appointments or other needed care, Title V Care Coordinators referred 171 families to a non-Medicaid transportation broker for transportation reimbursement in the form of mileage for medical appointments in 2020. Case management helped CSHCN families access respite services funded through the Division of Developmental Disabilities Services’ (DDS) Special Needs Program by providing direction on how to access, complete, and submit respite applications. Twenty-seven CSHCN under the age of 21 were awarded DDS Special Needs services in 2020 for a total of $22,626.61.00 (average dollar amount awarded: $838.00).

In 2020, the Title V CSHCN Program made referrals to the 87 DDS Intake and Referral Unit for the Community Employment Supports (CES) Waiver and 40 for DDS Special Needs.

The CES Waiver provides services and supports for persons with a developmental or intellectual disability of all ages. DDS administers the Home and Community-Based Waiver which assists recipients to live in their community while supported in their activities of daily living.

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 Title V CSHCN brochure explaining the program and services was updated in 2020, along with a program infographic. 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 both English and Spanish at  https://humanservices.arkansas.gov/about-dhs/ddds/childrens-services-information/title-v.

In addition to care coordination/case management, 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 the State. These direct assistance services improve access to care when no other funding source exists. In 2020, the program paid for direct medical services not covered by Medicaid, other insurance, or other programs/state funding sources for program eligible CSHCN whose family gross monthly income was under 350% of the federal poverty level, after their health insurance. These 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. A program-eligible child may receive assistance in more than one category, but in 2020, Program expenditures of $51,823.84 provided “gap filling services” for thirty unduplicated children.

Not all children served by the Program in 2020 received Title V CSHCN direct-funded services. Many program participants’ 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 and planning and preparing for their child’s transition to adult care systems.

To reach parents of CSHCN, the Program relies on partnerships with other programs and agencies who serve the CSHCN population; the Program also networks to form new partnerships. When changes in the State’s Medicaid program opened access to Medicaid for the Marshallese population, the Program collaborated with the Arkansas Department of Health and 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. In the next reporting period, the program strives to enhance outreach efforts to the Marshallese population by collaborating with the State’s Office of Special Education Programs (OSEP) funded Community and Parent Resource Center (CPRC) which specializes in Marshallese outreach.

A unique partnership with the Arkansas Foundation for Medical Care (AFMC) resulted in recording information for primary care physicians in Arkansas to learn more about the Program. The audio recording of Title V Children with Special Health Care Needs (CSHCN): Children with Chronic Health Conditions (CHC) Case Management Services is available at https://www.youtube.com/watch?v=XBt7pshBSzQ&feature=youtu.be.

The long-standing work of key stakeholders that make up the Parent Advisory Council (PAC) supports the Program’s work. The PAC is a diverse group of parents and guardians of CSHCN that provides support, information, and education to families, government agencies, and healthcare professionals on issues related to CSHCN. Arkansas’s PAC is one of the oldest PACs in the nation and has been active for 30 years. Parent representatives on the PAC support the Program’s outreach endeavors by facilitating at least one parent support group meeting or workshop in their region annually. PAC Parent Representatives share information with other families in their respective regions using an email distribution list, Facebook, and parent support group activities.

In August 2020, the Arkansas PAC held the 7th Annual Famous Family Bistro Conference in the virtual platform of Whova. The Family Bistro is an annual event featuring state and local experts, program representatives, vendors, and other sources of information on topics of parent-identified interest, that included:

1. History of the PAC

2. Advocacy 101

3. Encouragement for your Marriage

4. Inclusion: What It Is and Why It Matters

5. Components of IEP/Dispute Resolution

6. Understanding Social Security Disability

7. Newborn Screenings- Good News for Arkansas Babies?

8. Transitioning to Community-based Employment

9. What’s Happening in Children with Chronic Health Conditions

10. Response to Intervention (RTI) for Families

11. Center for Exceptional Families

12. Arkansas Alternative Pathway to Graduation.

The Whova virtual platform reported 109 attendees, 700 messages, 40 community posts, and 106 photos shared. Twenty-one exhibitors attended the 7th Annual Famous Family Bistro Virtual Conference event to provide information and resources. Collaborating partners in the event included the Disability Rights of Arkansas, Governor’s Council on Developmental Disabilities, Arkansas Department of Workforce Services, the State’s Parent Training and Information Center (The Center for Exceptional Families), Family 2 Family Health Information Center, Partners for Inclusive Communities, the First Connections early intervention program and the State’s Part B-619 program under IDEA.

The Title V CSHCN Program develops and maintains collaborative partnerships with other agencies, programs, and entities that support the state’s CSHCN population. Descriptions of collaboration with partners includes:

The Family 2 Family (F2F) Regional Coordinators partner with the Program and the PAC to provide joint training for parents across the state. The F2F Program is funded by the U.S. Department of Health and Human Services’ Health Resource Services Administration under a Title V sub-grant. 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. F2F Coordinators will participate in Regional Community of Practice sessions. The F2F CARES Act funding improves access to care by equipping families in need with a tablet (with a camera) and 12 months of Internet access to receive care for their child via telehealth. In 2020, six families received the equipment for telehealth.

The Title V staff continued to work closely with F2F to provide information and support to families with CSHCN. With COVID, 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 in creative ways, such as attending drive through events such as health fairs and distribution of food bank boxes and by providing families information on COVID testing sites in their area, obtaining masks, hand sanitizer, and advice regarding prescription refills. The 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 the F2F YouTube channel.

During 2020, the F2F regional coordinators provided direct services to 1573 families and 1031 professionals. Regional F2F coordinators distributed 59 Health Care Plan books to families. The Health Care Plan books are organized around available resources that are helpful to families and help parents to understand and navigate the health care system. 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 had a long standing positive working relationship with University of Arkansas for Medical Sciences (UAMS), Arkansas Children’s Hospital, and Dennis Developmental Center. One of the most significant contributions resulting from this partnership is CoBALT (Community-based Autism Liaison and Treatment) project, a joint venture between the UAMS Department of Pediatrics and the Title V CSHCN Program. CoBALT provides regional teams in rural area of the state where specialized services may be difficult to In ; CoBALT teams are trained to screen, evaluate, and in some cases diagnose autism and route these children and their families to available appropriate developmental, health, and medical services. The primary goals of the CoBALT project are to:

1. Reduce wait times for screening, evaluation, and diagnosis of children suspected of having autism.

2. Make referrals to early intervention or early childhood special education to support the learning and development of children ages zero to five with developmental concerns and/or autism.

Title V CSHCN Program representatives participates annually in CoBALT training to ensure that families participating in CoBALT clinics are referred to the Title V CSHCN Program. One RN, a staff member of the Title V CSHCN Program, stated, “helping families with the paperwork, allowed me to get to know the family and their needs, and immediately connect them with resources while they were waiting for their appointment.” Data from CoBALT indicates that 270 children were referred and seen at the James L. Dennis Developmental Center in Little Rock, while 156 families were seen by a regional CoBALT Team and were diagnosed without a prolonged wait and travel to the state capital.

In 2020, UAMS began hosting a Statewide tele-education series, Connecting Across Professions (CAP), to provide information to pediatric professionals about programs supporting children with developmental disabilities. The Title V CSHCN Program was one of ten featured CAP lectures presented Statewide and archived on the UAMS Learn on Demand for access by health professionals for the next three years.

In September of 2020, discussions between the UAMS Department of Pediatrics (Developmental and Rehabilitative) and the Title V CSHCN Program began 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/assessment process to accessing needed services.  A Family Navigator was hired in November 2020 to support and engage the family in navigating the health care system. Monthly Zoom meetings that featured interdisciplinary medical representation from UAMS Department of Pediatrics (Development Behavioral Pediatrician, Psychologist and Speech Language Pathologist) and a Title V CSHCN Program Nurse Manager were conducted so that families could ask questions about issues of concern on topics such as seizures, Applied Behavioral Analysis, medications, or applying for TEFRA. In December, these virtual family meetings were given the official name of Guiding Parents through Systems (GPS).

Arkansas Children’s Hospital (ACH) requested that a Program Manager train ACH referral coordinators, nurses, hospital admissions staff, interpreters, and social workers on the Title V CSHCN Program, particularly on support for families of CSHCN who are not Medicaid-eligible. Outreach and training provided to ACH staff included detailed information on the 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.

The Title V CSHCN Program provided outreach to the Arkansas Department of Health’s Nurses and Health Services Specialists in 2020 to provide program information. Many of the children served by Title V CSHCN receive services from the health department as well. The Stone County Department of Health was given information about the services and supports provided by the Title V CSHCN Program and how to make a referral.

Title V CSHCN collaboration with First Connections resulted in new connections with other programs serving families of infants and toddlers that are potential referral sources for the Title V CSHCN Program, such as Early Head Start and Head Start, Arkansas’ Early Childhood Special Education under Part B-610, SafeCare Home Visiting program, and the State’s Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program which includes:

• Following Baby Back Home

• Nurse-Family Partnership

• Health Families America

• HIPPY.

A Title V CSHCN Information Sheet to share with partnering programs was developed with available services, target population served, referral information, and program contact information.

The Program’s partnership with First Connections in 2019 led to a connection with the State’s Infant Hearing Program (IHP)/ Early Hearing Detection and Intervention (EHDI) program. In 2020, Title V CSHCN Staff collaborated with the State’s Early Hearing Detection and Intervention (EHDI) program to identify ways to work together to better support children who are deaf or hard of hearing and their families. The Memorandum of Agreement between the Arkansas Department of Health’s (ADH) Infant Hearing Program and the Title V CSHCN Program was revised in September of 2020 to reflect new goals and to solidify how the programs will work together in coming years. Additional progress in collaborating with IHP/EHDI included:

• Title V CSHCN Program staff serving on the Infant Hearing Program’s (IHP) Advisory Council and IHP Learning Community. IHP Advisory Council meetings provide an opportunity to discuss collaborative efforts to strengthen the Early Hearing Detection and Intervention system’s capacity to provide family support and engage families who have children who are deaf or hard of hearing. The discussion includes opportunities to identify existing family support services as well as exploring opportunities for expanding these services to promote families’ access to care. The meetings provide an opportunity to share program information and network with other programs that may serve as referral sources, such as Arkansas Hands and Voices and CAYSI (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.

• Planning to develop a written protocol to ensure that children who are deaf or hard of hearing are referred to Title V after diagnosis.

• Enhancement to the IHP’s Electronic Registration of Arkansas Vital Events (ERAVE) database to allow Title V 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 program information to pediatric residents on rotation at the James L. Dennis Developmental Center as part of the residency training so that future pediatric professionals are aware of the Title V CSHCN Program, who and how to refer, and CSHCN Program goals. The monthly lecture also provides program handouts and the opportunity for pediatric residents to ask questions about the program and services provided.

Later in their monthly rotation, pediatric residents participate in Project DOCC (Delivery of Chronic Care). Project DOCC is an education program that strives to improve the quality of life for children who are chronically ill and/or have a developmental disability and their families. Using their experiences, families train medical residents by inviting them into their homes and talking with them about their needs and experiences. Medical residents learn firsthand from families about the impact of chronic illness and/or disability on the families of CSHCN. Project DOCC provides a platform for parents of CSHCN to shape the future of health care service delivery.

The Title V CSHCN Program contracts with the Arkansas Disability Coalition to fund Project DOCC. Project DOCC is a mandatory requirement for all 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 31 medical residents in 2020 during 93 encounters. Due to restrictions on in person visits and other COVID challenges, Zoom and telephone visits were used to carry out Project DOCC activities via TeleVisits beginning in April of 2020. Take-aways from some of those visits include:

• “I appreciated their time and commitment [comment from a resident].”

• “The residents I had in my home visit asked lots of questions. They were eager to hear my experiences. One resident has a family member with special needs. The resident wants to plug in to our community and keep learning. This is exciting!”

Being illuminated by the family’s experience in Project DOCC builds on the information gained from the one-hour lecture so that these future practitioners will make referrals to the program to support families of CSHCN.

The Program’s partnership with UAMS provides opportunities for the Title V CSHCN Program’s Nurses to provide ongoing support to the communities in which they work by participating in diagnostic clinics in four regions of the state in partnership with UAMS; the regional clinics provide access to care for many CSHCN who otherwise would not have access to pediatric specialists in their community. The outreach clinics include Developmental Clinics, Physical Medicine and Rehabilitation, 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. As part of their participation in these regional diagnostic clinics, Title V CSHCN nurses referred 67 children to other appropriate services. During 2020 some regional diagnostic clinics were suspended during the early stages of the pandemic but later began to see children via telemedicine. In the fall of 2020, some clinics re-commenced in-person clinics 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 Division of Developmental Disabilities restricted travel policy during the pandemic and did not attend any clinics in-person. To support families in this new virtual format, Program nurses contacted families prior to the regional diagnostic clinic to screen for Title V CSHCN services and to assess any gaps in care after reviewing services the child is currently receiving. Program nurses also contacted families post-diagnostic clinic 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 RN affiliated with the clinic. The program increased the number of CSHCN served through this collaborative effort. Approximately 30 children were seen in clinics held in January/February 2020 for an initial appointment or follow-up in the four quarterly outreach clinics.

The Title V CSHCN Program participates in monthly Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program trainings to share information about the CSHCN program and how it supports families of CSHCN. Goals of the LEND program are to:

1. Train graduate/doctoral/postdoctoral students on the complex needs of those with neurodevelopmental and other related disabilities, including autism, in an interdisciplinary manner.

2. Increase the number of trained providers available to diagnose and treat those with complex neurodevelopmental and other related disabilities, including autism.

3. Enhance the clinical expertise and leadership skills of practicing professionals and families dedicated to caring for children with neurodevelopmental and other related disabilities, including autism.

Arkansas’s LEND program is comprised of advocates and graduate students from three universities: University of Arkansas at Little Rock, University of Central Arkansas, and University of Arkansas for Medical Sciences. The LEND Program educates these future health care professionals about family-centered care through long-term, graduate level interdisciplinary training. Disciplines represented in the Arkansas LEND Program include:

• Applied behavior analysis

• Audiology

• Developmental behavioral pediatrics

• Family advocacy

• Genetic counseling

• Health administration

• Nursing

• Nutrition

• Occupational therapy

• Physical therapy

• Psychiatry

• Psychology

• Public health

• Self-advocacy

• Social work

• Speech language pathology

• Special education.

When primary care physicians contact the program, the Title V CSHCN Program’s nurses provide information and assistance. Primary care physicians with whom the program has formed working relationships reach out to the Program’s nurses when they need assistance obtaining Arkansas Medicaid state plan services such as personal care and extension of Medicaid benefits for the CSHCN patients they serve. Additionally, these physicians become aware of families’ need 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 paperwork. These activities not only help families of CSHCN access care but also build positive working relationships with local primary care providers who feel confident in referring CSHCN to the Program when these children are identified in their medical practice.

Title V CSHCN staff share existing resources, links, and information with families who contact the program and those already receiving Title V case management services. Information and resources shared include:

• The CoBALT website (https://cobaltar.org), which provides information about a variety of developmental disabilities and co-morbidities to parents and Arkansas providers.

• The Arkansas Department of Human Services website, which lists the programs available in each of the Department’s divisions. Title V CSHCN updated the information on their website in 2020.

• The Arkansas Disability Coalition and F2F website, which provides links to a variety of events, organizations, and resources around the state to support families of children with chronic medical conditions and/or developmental needs.

• The First Connections website, which provides information on how to refer when a child is suspected of having a developmental delay. The site includes an online portal where anyone can make a referral. The program’s website has a Parent Page for families of infants and toddlers birth to age three with links to national resources: https://dhs.arkansas.gov/dds/firstconnectionsweb/#fc-home.

• The Arkansas Medicaid web page, which can be used while parents are on the phone to look up Medicaid enrolled providers by program using the city and state.

• The PAC Facebook page with many resources for parents of CSHCN can be found at https://www.facebook.com/Official.pac.

• The Title V Program works with Vocational Rehabilitation Services’ counselors.

SPM 4- Partner with ADH Family Health Branch and Arkansas Home Visiting Network to offer the National Center for Cultural Competence’s Unconscious and Conscious Bias in Health Care course to staff as ongoing professional development. (REVISED)

Steps to ensure that Program staff used best practices in cultural competence in their work with families in order to reach this goal began internally with some Title V CSHCN staff and some members of ADH Family Health Branch completing the following courses in 2020:

• Cultural Humility and Implicit Bias webinar

• ARCH National Respite Network and Resource Center Cultural and Linguistic Competency Training in Respite

• LEND Lecture-Cultural Competency

• Meet Families Where They Are: Strategies and Inclusive Formats to Engage Diverse and Medically Underserved Families

Activities implemented in 2020 to reach the goal of Home Visiting Program staff completing the National Center for Cultural Competence’s Unconscious and Conscious Bias in Health Care course involved forming a working partnership with the Arkansas Home Visiting Network (MIECHV programs) which the program intends to grow during joint work on two initiatives with these programs and future planning around providing this course as part of the MIECHV program’s ongoing personnel development offerings.

Additional steps to implement strategies to reach this goal 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/home visitors who complete the training.

The program will continue working with partnering home visiting programs to support home visitors in using culturally competent strategies to engage families of CSHCN.