Children with Special Health Care Needs

2018 Annual Report

 

In 2018, the Children with Chronic Health Conditions Program (CCHCP) engaged in infrastructure development to more closely align the program’s goals with HRSA’s and the Association of Maternal and Child Health Programs’ emphasis on providing more enabling services rather than focus on direct, one-on-one service provision. Infrastructure development activities included needs assessment, infrastructure analysis, reorganization, and strategic planning. Infrastructure development and strategic planning, while critical to a program’s current success and future growth, often do not result in the types of activities that are reported as specific strategies to meet previously stated program objectives. For this reason, efforts toward infrastructure development and strategic planning that do not specifically align with 2018 plan objectives and strategies are described in the 2020 Annual Plan.

 

The needs assessment conducted in 2018 resulted in the development of a strategic plan designed to:

 

1. Expand the CCHCP case management model to include all CSHCN who are eligible to receive case management services.
2. Limit the amount and types of direct care services that are available to CSHCN through the CCHCP and shift funding “down the pyramid” to provide more enabling services in line with national directives.
3. Ensure all activities funded by the MCH block grant and the required state match funds are tied into the written grant objectives and goals. 

 

Changes in the health care delivery system in Arkansas created a need for an analysis of and change to CCHCP’s infrastructure. In February 2018, the Provider-led Arkansas Shared Savings Entities (PASSEs) assumed care coordination duties for over 40% of the children on the CCHCP’s case load. Beginning in 2019, these children will no longer be eligible to receive case management from CCHCP nurse case managers, as this would be a duplicative service to the one being provided by the PASSE. In 2018, CCHCP leadership began transitioning these children off the caseload and focusing on expanding the CCHCP case management model to include all eligible children. 

 

Internal analysis revealed that Title V nurses and clerical assisted 1,122 families in completing the Community Employment Supports (CES) Waiver program’s enrollment packet, which enables eligible children to get on the CES Waiver wait list. While this work did support families in accessing care, completion of another program’s enrollment packet took Title V staff away from other activities. The lead agency, the Division of Developmental Disabilities Services (DDS) decided to form a centralized Intake and Referral Unit to track incoming requests for services. The Intake and Referral Unit be responsible for processing all CES Waiver enrollment packets by the end of 2019. 

 

The timing of these changes created the 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. These changes allow the program to be more closely aligned with the national objective of providing “family-centered, community-based, coordinated care” to CSHCN. 

 

The CCHCP is planning to expand caseloads to include more children with developmental disabilities and delays. This is in accordance with the federal definition of CSHCN that includes children with developmental conditions who require services beyond those required of a typical child. The DDS’s Intake and Referral Unit, Early Intervention Day Treatment clinics, and the Dennis and Schmeiding Developmental Centers will serve as referral sources for children who would benefit from receiving CCHCP care coordination services.

 

To ensure that the CCHCP is offering services to families of children with significant medical needs who meet eligibility, the CCHCP area managers will make monthly contact with local primary care providers to explain case management services and encourage referrals. In addition to increasing case management referrals, these regular contacts will foster relationships with physician practices and will support the Title V staff in reaching the goals outlined below.

 

 

The 2016-2017 National Survey of Children’s Health reports 21.2% of adolescents with special health care needs in Arkansas received services necessary to make transitions to adult health care compared to 16.7% nationally. The Survey does not include state level transition data.

 

Transition to Adult Health Care Objectives

 

In 2018, the CCHCP continued to:

 

1. Increase the percentage of pediatric primary care providers who have knowledge of transition tools for CSHCN, know how to use the tools, and have a written health care transition policy or approach that: 
   1. Includes expectations for age of transfer;
   2. Emphasizes the practice’s adult approach to care and what the legal changes are at 18 years of age; and
   3. Clarifies the transition support offered by the practice.
2. Develop training protocols for families of CSHCN to educate them on all levels of transition and how to obtain needed information from various providers.
3. Develop training protocols for school nurses in pre-K through higher education.

 

Efforts to increase the percentage of CSCHN who receive transition support included the following components:

 

1)  Preparing families for their child’s transition to adult health care while the child is still in early adolescence and informing parents how important they are to their child’s successful health care transition and in securing long-term benefits for their child;

2)  Training school nurses, special education teachers, and professional support staff in schools to support youth with special health care needs as they prepare for the transition to adult systems of care; and

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

Health care professionals were trained using the Six Core Elements of Health Care Transition tool (https://www.gottransition.org/resourceGet.cfm?id=206) from Got Transition’s (https://www.gottransition.org/providers/index.cfm).  

 

Current Activities Related to Transition to Adult Health Care

 

Objective 1

 

Increase the percentage of pediatric primary care providers who have knowledge of transition tools for CSHCN, know how to use the tools, and have a written health care transition policy or approach that: 

 

1. Includes expectations for age of transfer.
2. Emphasizes the practice’s adult approach to care and what the legal changes are at 18 years of age.
3. Clarifies the transition support offered by the practice.

 

In 2018, specialty care providers were removed from this objective, as the CCHCP does not have a mechanism to identify each child’s pediatric specialty care providers. Instead, CCHCP efforts focused on the known primary care practitioners working with CSHCN.

 

Strategies that support this objective include:

 

1.           Developing and sending a new brochure that introduces the CCHCP along with a cover letter to all primary care physicians across the state. Educate through outreach and providing access to materials and tools.
2.           Collecting data from Medicaid initiatives to identify the percentage of the patient population who are CSHCN.
3.           Collaborate with pediatric tertiary care centers, the Leadership Education in Neurodevelopmental Disabilities (LEND) program, the Early Childhood Comprehensive Systems Medical Home workgroup, and the Arkansas Children’s Hospital’s Grand Rounds to present the topic of transition to all attendees.
4.           Collaborate with Got Transition to provide technical assistance to pediatric clinicians who are developing a transition policy using the Six Core Elements.

 

Strategy 1.1: Develop and send a new brochure that introduces the CCHCP along with a cover letter to all PCPs across the state. Educate through outreach and providing access to materials and tools.

 

In 2018, the CCHCP continued to use brochures and the cover letters that were previously developed. See the 2020 Action Plan for information on the development of new materials.

 

 Strategy 1.2: Collect data from Medicaid initiatives to identify the percentage of the patient population who are CSHCN.

 

The CCHCP defines its’ patient population using the following two disability categories of Medicaid for children: 1) Supplemental Security Income (SSI) program and 2) Tax Equity and Fiscal Responsibility Act (TEFRA). The SSI Program pays benefits to disabled adults and children who have limited income and resources. The TEFRA Program is a Medicaid Program that helps families with children younger than 19 years’ old who have a disability and receive care in their homes rather than an institution. The TEFRA program can help pay for the cost of these services for eligible children. Some families pay a TEFRA premium on a sliding scale, depending on family income.

Data from the Social Security Administration (2018) shows that 24,597 children under the age of 18 in Arkansas were SSI recipients. According to data from the Arkansas Medicaid Enterprise, Decision Support System report, 5,659 children under the age of 18 were TEFRA recipients in 2018. Combining the data for SSI and TEFRA recipients, approximately 30,256 children in Arkansas were categorized as being in a Medicaid disability category.

Using the Therap case management system, the total number Title XIX (SSI and TEFRA) served by the CCHCP in 2018 was 2,173, which was 7% of the children who were disabled.

 Strategy 1.3: Collaborate with pediatric tertiary care centers, LEND, the Early Childhood Comprehensive Systems Medical Home Workgroup, and Arkansas Children’s Hospital’s Grand Rounds to present the topic of health care transition to all attendees.

 

The LEND trainings were held monthly during the 2018 school year to educate future health care professionals about family-centered care. 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.

 

In 2018, Title V nurses attended LEND trainings on screening and diagnosis of Autism; cultural competency; Autism intervention and supports; intellectual disability and behavioral health conditions; and the genetics of developmental disabilities.

 

The Early Childhood Comprehensive Systems Medical Home Workgroup is now known as the Early Childhood Collective Impact Group. Members of the group are stakeholders who represent various agencies and organizations as well as individuals who work with the families of CSHCN. A representative from Arkansas Children’s Care Network is a workgroup member. The Arkansas Children’s Care Network is a statewide network of pediatricians, including pediatricians from Arkansas Children’s Hospital. The Network’s aim is to implement health care pathways that lead to behavioral and environmental changes to improve outcomes for children, youth and families. The Division of Child Care and Early Childhood Education is also represented at the Early Childhood Collective Impact Group. The Division led the workgroup in providing input to changes to the Arkansas Better Beginnings Program, which works to improve the level of quality in child care and early childhood education programs across the state. The Better Beginnings program rates the quality (1-, 2-, or 3-stars) of each child care facility using Arkansas’s Quality Rating Improvement System. The Early Childhood Collective Impact Group has been discussing how to better serve CSHCN through efforts focused on behavior guidance, mental health, early childhood special education, family engagement, nutrition/childhood obesity/physical activity, and care environments. One focus of the Collective Impact Group is to improve the transition process for CSHCN through all life stages. As a result, the CCHCP staff presented on the importance of transition to members for the Early Childhood Collective Impact Group in October 2018.

 

The CCHCP staff were not able to get on the schedule for Arkansas Children’s Hospital’s Grand Rounds in 2018.

 

Strategy 1.4: Collaborate with Got Transition to provide technical assistance to pediatric clinicians who are developing a transition policy using the Six Core Elements of Health Care Transition, which are:

 

1)  Establishing a policy to support transition to adult health care systems;

2)  Tracking progress;

3)  Administering transition readiness assessments;

4)  Planning for adult care;

5)  Transferring to adult care; and

6)  Integrating into an adult practice.

 

In January of 2018, the CCHCP staff shared tools from Got Transition with pediatric providers. The Current Assessment of Health Care Transition Activities for Transitioning Youth to Adult Health Care Providers and the Current Assessment of Health Care Transition Activities for Integrating Young Adults into Adult Health Care, Six Core Elements of Health Care Transition 2.0 from Got Transition were hand delivered, mailed, or emailed to the 164 pediatric and family practice physicians with which the CCHCP has developed a working relationship. Thirteen percent of the assessments were completed and returned to the CCHCP.

 

These qualitative self-assessment tools were designed for practices to use to determine the level of transition support it provides to youth and families. All participating practitioners/practices were mailed the results of the qualitative assessment from their practice and aggregate data from all respondents’ assessments (Chart 1). A resource document, Incorporating Health Care Transition Services into Preventive Care for Adolescents and Young Adults: A Toolkit for Clinicians (2018), was included along with survey results. The resource document was developed by Got Transition, in collaboration with the National Alliance to Advance Adolescent Health and the Adolescent & Young Adult Health National Resource Center.

 

Objective 2

 

Develop training protocols for CSHCN families to educate them on all levels of transition and how to obtain needed information from various providers.

 

Strategies that support this objective include:

 

2.1 Utilize information obtained from the Transition Checklist, Family Quality Measurement Tool, Happy Birthday 14 Surveys, and the Consumer Needs Assessment to build the training curriculum.

2.2 Collaborate with the CSHCN Parent Advisory Council (PAC) to identify effective transition tools to use in family training sessions.

2.3 Collect data from family surveys and needs assessments to determine whether primary care providers are discussing transition with families.

 

 Strategy 2.1: Utilize information obtained from the Transition Checklist, Family Quality Measurement Tool, Happy Birthday 14 Surveys, and the Consumer Needs Assessment to build the training curriculum.
 

Before presenting at outreach events in 2018, the CCHCP reviewed results from the three Health Care Transition Readiness Checklists (for families, youth, and children with complex medical needs). Eighty-six families, fifty-six youth, and twenty-one families with children with complex medical needs responded to the survey. The results follow:

 

1. This checklist is helpful in planning for my child’s Health Care Transition.
   • 81% of families stated they agree or strongly agree
   • 86% of youth stated they agree or strongly agree
   • 96% of families with children with complex medical needs stated they agree or strongly agree
      
2. You will be able to do everything that was discussed on the checklist.
   • 76% of families stated they agree or strongly agree
   • 73% of youth stated they agree or strongly agree
   • 98% of families with children with complex medical needs stated they agree or strongly agree

 

3. Health Care Transition is important to my child and family.
   • 85% of families stated they agree or strongly agree
   • 91% of youth stated they agree or strongly agree
   • 95% of families with children with complex medical needs stated they agree or strongly agree.

 

4. Youth were asked “on a scale of one to ten, how ready are you to make a change, what is your number today?” Only 49 of the youth responded. Only 42% rated themselves at a 6-10 (1 being least ready and 10 being most ready) on the readiness scale.

 

For the 2018 Title V Needs Assessment/Family Satisfaction Survey, a committee reviewed the 2016 Title V Needs Assessment/Parent Satisfaction Survey and the 2016 National Survey of Children’s Health for questions to include on the survey. The CCHCP parent consultant was a member of the committee that selected the survey questions.

 

For the 2018 Title V Needs Assessment/Family Satisfaction Survey, postcards were mailed to 788 families receiving CCHCP case management services, direct medical services, or gap filling services. The postcard gave families a link to the survey and an option to call the CCHCP to get a paper copy of the survey mailed to them. The postcard mailing label was supposed to contain a tracking number for community-based office level data. Commercial mail omitted the tracking number from the mailing label. Families were unable to continue with the survey without the tracking number, which was a required question. This omission was realized and a random sample of 323 postcards with the tracking number in the mailing address was mailed. Families had the option to call the CCHCP to get the tracking number to continue the survey using Survey Monkey. Despite these efforts, only 18 out of 788 or 2.28% responded. Given the low response rate, the results of the survey will not be considered in making future program decisions. Instead, the CCHCP is exploring methods to increase the response rate in 2019, including having staff call the families to complete the survey by phone.

Other family information, training, and outreach activities supporting objective 2.1 included the 2018 Famous Family Bistro, which was held in Little Rock in April and was attended by 39 families and 14 professionals. The CCHCP nursing coordinator and the parent consultant presented Transition to Adult Health Care. Evaluations were completed by 20 attendees with 70% rating the presentation as excellent.

 

Parents were paid a stipend to attend the July 2018 PAC Outreach Event in Hope, Arkansas. Eleven parents of CSHCN attended, with one being a PAC member, one Family-to-Family (F2F) representative, and two fathers of CSHCN. The ages of the children represented ranged from ages 2-18. This age range represents all stages of preparing for transition to the adult health care setting. Parents were given an overview of the CCHCP and a presentation on Transition to Adult Health Care by the CCHCP’s nursing coordinator and parent consultant.

 

The Executive Director of the Arkansas Disability Coalition, which administers F2F and Project DOCC (Delivery of Chronic Care), invited the Title V nursing coordinator and the Assistant Director of the Division of Developmental Disabilities (Tier 1 services and policy lead), to present at the Coalition’s October 2018 staff meeting. The nursing coordinator gave an overview of the CCHCP, including Transition to Adult Health Care. The Assistant Director gave an update on the PASSE, an organized care model of health care delivery for individuals who have a high level of need for services due to a behavioral health diagnosis or a developmental or intellectual disability or diagnosis. 

 

Additionally, the CCHCP’s northwest Arkansas area manager gave a presentation on transition at two parent workshops hosted by Arkansas Vocational Rehabilitation Services in 2018.

 

Strategy 2.2: Collaborate with the PAC in order to identify effective transition tools to use in family training sessions.

 

Arkansas’s PAC is one of the oldest PACs in the nation, active for 29 years. Parent representatives on PAC are required to facilitate at least one parent support group meeting or workshop in their region every year. Parent representatives also are required to share information learned at quarterly meetings with other parents in the region they represent. PAC parent representatives share information with other families in their respective regions using an e-mail distribution list, Facebook, parent support group activities, and other face-to-face meetings. Transition-related resources are available on the PAC website at:

https://humanservices.arkansas.gov/about-dhs/ddds/childrens-services-information/title-v-children-with-special-health-care-needs-cshcn.

 

In collaboration with the PAC, the CCHCP began a discussion of what transition tools were needed by families. The result was two new Transition Tips Sheets (10 and 11), bringing the total number of Transition Tip Sheets to 11. All of the tip sheets are available in English and Spanish.

 

Transition Tip Sheet 10 is For Youth & Young Adults: Questions to Ask Your Doctor about Transitioning to Adult Health Care. The first section is questions for the youth to ask their doctor during their adolescent years, such as “when do I start to meet with you on my own for part of the visit to become more independent when it comes to my own health and health care?” The second section of this tip sheet contains questions to ask when making their first appointment with a new doctor, as an adult. The third section has questions to ask the new adult doctor before their first appointment.

 

Transition Tip Sheet 11 is Turning 18: What it means for Your Health. The tip sheet tells the young person that although they may not feel any different, turning 18 means they are legally considered an adult. The young adult is given resources for extra support in decision making, told about their responsibilities and right to confidentiality, and that doctors will be talking to them about their health instead of talking with their parents.

 

The CCHCP developed two parent letters, one for parents of youth aged 12 and another for parents of youth aged 13. These letters introduce the concept of Health Care Transition. Each letter lists topics the parent might want to discuss with their 12- or 13-year-old. Both groups of parents were mailed copies of anticipatory 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.

 

In the spring 2018, the Arkansas PAC hosted the 5th Annual Family Bistro Conference. Keynote speakers for this event were the Director and Assistant Director of the Department of Special Education, who discussed special education in Arkansas. Over twenty vendors set up displays. The CCHCP’s parent consultant and nursing coordinator presented information to attendees on the topic of Transition to Adult Health Care.

 

Partners in the Family Bistro included the state’s Parent Training Institute, Center for Exceptional Families, Institutes of Higher Education, Partners for Inclusive Communities, Medicaid, Arkansas None for Nine (fetal alcohol spectrum disorders), and a representative of the CES Waiver program. These partners presented conference breakout sessions on the following topics:

 

1. Awareness and advocacy skills for CSHCN
2. Special education rights and Section 504 (anti-discrimination)
3. Special education discipline procedures and rights
4. Disability policy: What you don’t know can hurt you
5. CES Waiver
6. PASSE Medicaid after age 21
7. The importance of advocacy (Medicaid Saves Lives)
8. Understanding the strengths and challenges of individuals living with fetal alcohol spectrum disorders

 

Strategy 2.3: Collect data from family surveys and needs assessments to determine whether primary care providers are discussing transition with families.

 

Responses to the Health Care Transition Readiness Checklists were keyed into Survey Monkey. The existing checklists are for families, youth, and families with children with complex medical needs. In 2018, 184 checklists were received: 93 from families, 62 from youth, and 29 from families with children with complex medical needs. The respondents represented 28% of the 665 transition-aged youth served by the CCHCP in 2018. The response rate from families of transition-aged youth increased by 2% over 2017, going from 26% to 28%.

 

Thirty-one youth responded to the Happy Birthday 14 Survey. Result are shown in Charts 2 and 3.

 

Additionally, the CCHCP surveyed parents of CSHCN ages 12-17 using the 2018 Title V Needs Assessment/Parent Satisfaction Survey. Eleven responses were received.  When asked about whether their child’s doctor or health care provider worked with the child regarding transitions to adult health care, the respondent’s indicated the following:

 

• 45% worked with the child to think about a plan for his/her future
• 64% worked with the child to make positive choices about his/her health
• 36% worked with the child to gain skills to manage his/her health and health care
• 27% helped the child understand changes in health care that happen at age 18
• 27% indicated the child was able to speak privately with the doctor or health care provider at his/her last preventive check-up
• 18% indicated that the doctor or health care provider worked with them to create a written plan to meet the child’s health goals and needs
• 18% stated that the plan identifies specific health goals for the child, health needs or problems the child has, and how to get those needs met
• 27% stated that they did receive a written copy of this plan of care
• 18% said the plan is currently up to date for their child

 

The survey also asked questions related to transitioning health care insurance. Only 36% of respondents indicated that anyone had ever discussed with them how to obtain or keep health insurance on their child as he or she becomes an adult.

 

Objective 3

 

Develop training protocols for school nurses, pre-K through higher education.

 

 Strategies that support this objective include:

 

3.1 Network with state school nurses, college health services and staff, physician’s offices, and support personnel through face-to-face interactions and provide training seminars on health care transition in relation to CSHCN.

3.2 Distribute the CCHCP brochures and literature with attached cover letter of introduction to all school nurses and clinics as well as the Arkansas Department of Health’s local health units.

 

Strategy 3.1: Network with state school nurses, college health services and staff, physician offices, and support personnel through face to face interactions and provide training seminars on health care transition in relation to CSHCN.

 

In 2018, the CCHCP took advantage of many networking opportunities with our partners at schools. Our focus was broadened to include local education agencies or the educational cooperatives serving large catchment areas, special education teachers and paraprofessionals (pre-K through high school).

 

The CCHCP nursing coordinator attended the Arkansas Interagency Transition Partnership’s Summer Connections conference for school nurses and paraprofessionals to present an overview of the CCHCP including information about the importance of Health Care Transition.

 

Networking in various parts of the state resulted in an invitation for the nursing coordinator and parent consultant to attend the Special Education Administrator’s Academy in September to present Title V Overview: What Special Education Administrators Really Want to Know! The session was a break-out session at the end of the conference and was attended by 51 of the 200 school personnel at the conference.

 

The CCHCP was asked to come to the South East Arkansas Education Cooperative meeting in October 2018 to speak with representatives from eight of ten schools in the cooperative. The northwest Arkansas area manager spoke at two cooperative’s School Nurse Development Days, a school’s Special Needs Staff meeting, and at Stepping Stone Developmental Day Treatment Program, an early intervention day treatment program for children with developmental or intellectual disabilities or delays. The northeast Arkansas area manager and the nursing coordinator trained the Arkansas Department of Health’s nurses in December 2018 and distributed transition resources to those in attendance. The northeast area manager presented Title V Transition to local education agencies in St. Francis County across the Delta. The south Arkansas area Manager presented to educational cooperatives in southwest Arkansas.

 

The Arkansas Interagency Transition Partnership’s Summit was held in November 2018 with transition teams from 45 schools in attendance. The nursing coordinator and the parent consultant, both members of the Partnership, facilitated training for transition teams from Newport, McCrory, Drew Central, and Southwest School.

 

The CCHCP nurses made 16 visits to schools across the state on the behalf of transitioning youth who do not have individualized education plans. These regional nurses also attended 12 individualized education plan meetings.

 

Strategy 3.2: Distribute brochures, literature, and letter of introduction from the Division of Developmental Disabilities Services to all school nurses and clinics (pre-K through college) as well as the Arkansas Department of Health’s local health units.

 

The CCHCP staff attended ten transition fairs at local high schools and one transition fair held at an elementary and middle school. Resources provided to parents, students, and school personnel included the CCHCP’s Transition Tip Sheets.

 

Resource information was given to an Arkansas Department of Health representative to share at the School Kick-off Expo in August 2018.

 

Title V set up information booths at the following events: Arkansas Interagency Transition Partnership’s Summer Connections, Special Education Administrator’s Academy, Rainbow of Challenges Festival for Children & Adults, 2018 McCommons Institute Educational Seminar, Special Olympics (statewide and Area 11), Pocahontas schools, Batesville Community Expo, and Jonesboro Youth MOVE.

 

Information about transition and other Title V services was sent to school nurses in the Smackover and Tuckerman school districts.

 

Other Activities Related to Improving Transition

 

The CCHCP hosted a downlink site at the University of Arkansas for Medical Sciences for Baylor College’s 19th Annual Chronic Illness and Disability Conference. The conference, Transition from Pediatric to Adult-based Care, recognized the need for physicians to have the knowledge and skills to facilitate a successful transition from pediatric to adult-based care and services. The conference noted the lack of a prepared workforce to support transition to adult-based health care as one of the major hurdles for CSHCN to make an effective transition. Nurses, LEND faculty, students, and other health care professionals attended the two-day downlink event in October 2018. 

 

Access to Care Objectives

 

The CCHCP has long relied 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. 

 

Infrastructure development and strategic planning completed in 2018 improved access to care for families of CSHCN. Specifically, CCHCP began planning 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, newborn screening, and two federally-funded home visiting programs (Nurse-Family Partnership and Following Baby Back Home); the State’s early intervention program, First Connections, and the Arkansas Department of Education’s Early Childhood Special Education program. Improved collaboration with these programs will increase referrals of CSHCN, improving these families’ access to care through the CCHCP’s care coordination.

 

Objective 1

 

To ensure access to needed and continuous systems of care for CSHCN.

 

Strategies that support this objective include:

 

1.           Collaborate with pediatric and family practice Medicaid providers to determine the number of CSHCN currently receiving care in their clinics.
2.           Develop a brochure of local health care facilities/clinics to be distributed to all families receiving the CCHCP’s services.
3.           Use data obtained from family and youth readiness surveys to find families needing help with access to services.
4.           Work with the PAC to identify areas with poor access and develop training materials to empower families to seek out care when needed.

 

Strategy 1.1: Collaborate with pediatric and family practice Medicaid providers to determine the number of CSHCN currently receiving care in their clinics.
 

In 2018, the CCHCP’s nurses were contacted by primary care physicians to access services for individual CSHCN who were seen in their practice. The primary care physicians reach out to the CCHCP 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 families often need services that are not covered under the Arkansas Medicaid state plan, such as respite or medically necessary services covered through the Early and Periodic Screening, Diagnostic, and Treatment program. The CCHCP nurses helped families of CSHCN complete the required paperwork to access services from community partners and resources. Although these efforts did not assist in determining the number of CSHCN currently receiving care in Medicaid enrolled pediatric and family practice clinics, they did help the CCHCP’s staff build relationships with local primary care providers, which will help the program better serve CSHCN in Arkansas.

 

Strategy 1.2: Develop a brochure of local health care facilities/clinics to be distributed to all families receiving services from Title V.

 

A directory or guide of local health care facilities/clinics was not developed. Instead, the CCHCP staff shared existing resources, links, and information with families who contacted the program and those already receiving CCHCP case management services. Existing resources include:

 

• The CoBALT (Community-based Autism Liaison and Treatment) website, 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.
• The Arkansas Disability Coalition and F2F website, which provide 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 referral sources, pediatric professionals, and early intervention providers. The site also has links to national resources on the parents’ page and an online portal where anyone can make a referral.
• The Arkansas Medicaid webpage, which can be used while parents are on the phone to look up Medicaid enrolled providers by program using the city and state.
   

Strategy 1.3: Use data obtained from family and youth readiness surveys to find families needing help with access to services.

Questions about access to care concerns were asked on the 2018 Title V Needs Assessment/Parent Satisfaction Survey, the Happy Birthday 14 Survey, 2018 Famous Family Bistro, PAC Outreach Event, and at the Centers for Exceptional Families parent meeting.

The 2018 Title V Needs Assessment/Parent Satisfaction Survey included questions form the National Survey of Children’s Health. Seventeen families responded: 

• 100% indicated that their child had seen a doctor, nurse, or health care provider for medical care during the past 12 months. 
• 100% indicated they do have an office/clinic they usually go to for routine, preventive care; and that the same office/clinic is where they take their child when he/she is sick. 
• 18% indicated there was at least one time in the last 12 months when their child needed health care, but it was not received.

Factors that contributed to children not receiving needed health services included not being eligible for services, services not available, transportation problems, clinic/office being closed, and cost of services (Chart 4).

The Happy Birthday 14 Survey also asked questions of parents regarding their transition-aged child’s access to care (Charts 5 and 6). Thirty-two families responded.

Strategy 1.4: Work with the PAC to identify areas with poor access and develop training materials to empower families to seek out care when needed.

 

In November 2018, the PAC had seven members and many vacancies to fill in areas of the state where recruitment is a challenge. However, several new members brought their energy and enthusiasm to the PAC. The CCHCP will continue to elicit PAC and F2F input on health care access needs.

At the 2018 Famous Family Bistro, PAC Outreach Event, and the Centers for Exceptional Families parent meeting, parents were given a list of 23 identified needs for CSHCN in the state. Parents were given an opportunity to write in other needs that did not appear on the list. Parents were also asked to rank their five greatest needs from this list with one being their greatest need. Thirty-six parents completed the ranking and the top five greatest needs were:

1. Getting help with the Division of Developmental Disabilities Waiver program
2. Accessing respite care
3. Getting legal advice
4. Getting diagnosis-specific information on their child’s disability
5. Getting training on advocacy, systems, and parenting
    

The F2F regional coordinators partner with Title V and the PAC to provide joint training events for parents across the state.

 

Additional Activities Related to Access to Care

The CCHCP nurses and clerical staff helped 1,122 families complete the CES Waiver program’s enrollment packet, which enables an eligible child to get on the CES Waiver waitlist and be enrolled the PASSE.

The theme of the second annual Adverse Childhood Experiences and Resilience Summit (September 25, 2018) was “Every Child, in Every Community.” The purpose of the summit is to equip professionals to help children avoid early adversity and develop resilience. The content of the conference was focused on the importance of collaboration and sharing data in efforts to mitigate early life adversity and being more efficient across programs, agencies, and organizations that serve youth and families.
 

The CoBALT program was developed to1) reduce wait times for Autism-specific screening and diagnosis of children suspected of having Autism or other developmental delays or diagnoses and 2) provide access to early intervention (or early childhood special education) for pre-school aged children with developmental concerns in addition to Autism. The CoBALT program helps families by training mini-teams who operate clinics for Autism-specific screenings in rural areas of the state where specialized services may be difficult to access. The Title V CSHCN program supported eight CoBALT program teams (https://cobaltar.org) through trainings and informational videos.

 

At the 2018 CoBALT Update training, the CCHCP’s nurses from the areas in which CoBALT teams were trained participated in the two-day training event alongside teams from Mena, West Memphis, Batesville, and Little Rock. Over the course of the two-day training, many team planning sessions and activities occurred. Teams were trained on typical child development, behavior symptoms, sleep routines, gastrointestinal issues, the CCHCP, First Connections, and Early Childhood Special Education (Part B/619 of the Individuals with Disabilities Education Act).

 

The CCHCP contracts with the University of Arkansas for Medical Sciences to hold quarterly diagnostic clinics in four designated regions of the state to improve access to care. Under the contract, the CCHCP provided a nurse at each outreach clinic so that each child seen at the clinic was screened for CCHCP services, including case management. The CCHCP was able to increase the percentage of CSHCN served by its program through this referral source. Approximately 152 children were seen in 2018 for an initial appointment or follow-up in the outreach clinics.

 

Project DOCC (Delivery of Chronic Care) is a medical education program that strives to improve the quality of life for children who are chronically ill and/or have a developmental disability. The program highlights the needs of children that are chronically ill who are being cared for in the home. Using their experiences, families train medical residents by inviting them into their home and community and talking with them about their needs and experiences.

 

Project DOCC trained 33 medical residents in 2018 during 99 encounters. Project DOCC empowers parents of CSHCN and gives them a voice by providing training and support to the parents who participate. Project DOCC trained one new parent in 2018. Here are some direct quotes from medical residents and from the host families:

 

• “Wow! To be able to spend a little time with families gave me an invaluable experience.”
• “This part of my rotation has been my favorite experience.”
• “I saw the family in the Emergency Department but hearing their story would have been great before I saw them there.”
• “It means a lot to me that residents want to learn from my family to improve their practice.”
• “I love working with the residents and other families.”
• “I wish that all of my child’s physicians could have gone through Project DOCC.”

 

The CCHCP staff continued to work closely with F2F to provide information and support to families with CSHCN through five F2F regional coordinators. The F2F program is funded by the U.S. Department of Health and Human Services’ Health Resource Services Administration and a sub-grant from the CCHCP.

 

During 2018, the F2F regional coordinators provided direct services to 923 families and 627 professionals. The regional coordinators distributed F2F-developed Care Plan books to families. The Care Plan books are organized around available resources that are helpful to families. A parent that received the Care Plan book from her regional coordinator stated she had no idea that having a child with a hearing impairment would qualify them for a tax credit and the form was in the book. According to the parent, the Care Plan book is helping her to get organized and keep up with all of the specialists her child needs to see.

 

Additionally, the F2F regional coordinators set up displays for parents and professionals to get health care information and resources at many conferences and events in Arkansas.

 

Members and stakeholders of the Arkansas Lifespan Respite Coalition, staff from the Department of Human Services, and the public participated in the Coalition's event at the capitol to improve awareness of the need for access to respite services and respite information to family caregivers across all age and disability spectrums. The Coalition serves as a strong voice for respite throughout the state to promote awareness and help caregivers locate respite care services in their communities. The Coalition’s mission is to support and promote the development of a comprehensive statewide respite and crisis care system that is responsive to the needs of caregivers and their families and enhances the quality of life for all individuals.

 

Over the course of the year, the CCHCP’s nurses provided case management services to many families, including making many home visits and referrals to services. The CCHCP’s staff made 35 referrals to First Connections, the early intervention program in Arkansas for infants and toddlers zero-three years of age with developmental delays or disability. Other referrals were made for families to access transportation assistance, mental health counseling, free dental services, charitable medical clinics, legal assistance, housing and utility assistance programs, and adult waiver programs.

 

The CCHCP’s nurses participate in Mental Health Systems of Care meetings at the local and regional levels, as well as plan of care meetings for individual children. The CCHCP works with Vocational Rehabilitation Services’ counselors, hospital discharge planners, and social workers to access care and services for CSHCN. Families request help from the CCHCP to locate residential placement for their children who have become unmanageable at home.

 

Interpreter services are available through the Department of Human Services, Arkansas Children’s Hospital, the Center for Exceptional Families, the Minority Health Commission, some school districts, and other limited providers. Once the Marshallese population was eligible to apply for Arkansas Medicaid, the Arkansas Department of Health assisted the CCHCP in drafting a letter to the Marshallese parents informing them how to apply for services. The CCHCP’s staff presented at the Arkansas State Employees Association Annual meeting as a break out session “Understanding the Marshall Island Culture”. This session was conducted to educate state employees of the growing need for services by this population.
 

In August 2018, a statewide training was held for all Division of Developmental Disabilities Services employees. A brief Title V overview was presented to 91 employees who work with individuals with developmental delay and/or disability. In October of 2018, a Title V overview was presented to 142 members of the Developmental Disabilities Provider Association meeting. 

 

Primary caregivers of CSHCN need a temporary break from caring for their child. The CCHCP’s staff assisted families with respite application packets through the Division of Developmental Services’ Special Needs program and the 2018 Title V Family Support/Respite program. The number of CSHCN per program and the total dollar amounts awarded are as follows:

 

• Division of Developmental Services’ Special Needs Program:
  • 59 children, $95,651.88 (average dollar amount awarded $1,621.00).
• Title V Family Support/Respite Program:
  • 216 children, $163,309.00 (average dollar amount awarded $756.00).

 

The CCHCP paid for direct medical services not covered by Medicaid or other insurance for CSHCN whose families’ gross monthly income was under 350% of the federal poverty level, after their health insurance. Form 5a includes details for the expenditures on these services.

 

For children in the Title XIX category, $310,321.33 was paid by Title V for the following items/services (not covered by Medicaid):

 

• Bathroom modifications: $44,592.00
• Medical camps: (Camp Barnabas, Dream Street) $26,146.00
• Phenylketonuria (PKU) foods: $5,427.76
• Arkansas Children’s Hospital rehabilitative stays: $97,770.95
• Medication: $14,855.80
• Home modifications to allow for wheelchair access: $11,891.63
• Strollers: $18,838.08
• Van modifications: $49,618.51
• Ceiling lifts: $22,996.00
• Wheelchair repairs: $6,675.88
• Miscellaneous durable medical equipment: $11,508.72.

Services not covered by Title XXI:

• Orthotics, Scoliosis braces, hearing aids, medical camp, and insulin pumps: $17,697.97.

Medical services covered for private/other category:

• Medical evaluations, specialty care follow-up, hospitalizations, emergency department visits, emergency transportation, medical camp, medications, medical supplies, diagnostic imaging studies, etc.: $488,014.22.

Services covered for children with no health insurance or Medicaid:

• Medical services as described above: $771,639.30
  • Includes durable medical equipment: $ 27,863.07.
     

2018 Title V Children with Special Health Care Needs Unduplicated Count