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

 

Objective 1: Build upon existing Healthcare Transition Toolkit by adding ten additional family specific resources by 2023.

 

Data:

The Health Care Transition (HCT) Toolkit remained on the Sooner SUCCESS website.

 

In FFY21, three additional family specific resources were added to the HCT webpage. Data indicated that the HCT webpage was accessed 506 times.

 

Successes:

Sooner SUCCESS staff maintained the existing HCT Toolkit during FFY21 on the Sooner SUCCESS website. Content was added or updated based on newly identified resources and feedback received from providers and family members. During the FFY, three additional resources were identified that were specifically designed for families.

 

Oklahoma Family Network (OFN) staff participated in the Sooner SUCCESS HCT quarterly meetings by providing input on resources and experiences related to transition to adult health care. OFN staff shared transition resources received through national partners and other Family to Family Organizations with Sooner SUCCESS staff, families, and other professionals.

 

The Oklahoma Family Support 360°Center (OK FS360) collaborated with Sooner SUCCESS during the quarterly HCT committee meetings. OK FS360 staff actively attended the HCT committee meetings to bring expertise and the family voice of the Latinx/Spanish-speaking population and served as a liaison between families and the research team.

 

The Oklahoma Infant Transition Program (OITP) took a small toolkit for NICU parents and expanded it into a comprehensive toolkit specifically designed with approximately 18 resources for families in the NICU and those transitioning to a medical home. OITP worked on developing a website for NICU parents to use with up-to-date information and resources, as well as information about medical homes and frequently asked questions. The website was maintained by OITP staff to modify information as needed.

 

The Sickle Cell Clinic Disease Transition Program (comprised of a transition coordinator, social worker and psychologist) continued to meet with patients/families twice per year. During the FFY, the Sickle Cell Clinic added a second full time psychologist to assist with the Sickle Cell Disease Program. A Sickle Cell Disease specific toolkit was given to all patients upon entering the Transition Program and to all patients when they turned 18. Sickle Cell Clinic continued sickle cell disease educational activities at the Stephenson Cancer Center (where most patients transition to for adult care).

 

One new CSHCN grantee began providing services. Parent Promise was awarded a grant by CSHCN Title V beginning in August 2021. This funding supported a Community HOPE Center with a Family Services Navigator specifically focused on the CYSHCN population.

 

Challenges:

A limited number of minority voices attended the quarterly HCT committee meetings.

 

OITP worked with the University of Oklahoma (OU) and OU Physicians Information Technology Department for website approval. However, it took longer to make progress than anticipated, as OITP had to comply with the OU and OU Physician’s guidelines for branding and format.

 

OITP was limited on the number of families that could meet for the parent lunches and scrapbooking. Both have been excellent vehicles for information gathering and disbursement from/to parents in the past. Normal activities were slow to resume due to COVID-19 restrictions.

 

The Sickle Cell Clinic reported that there continued to be a lack of true Adult Sickle Cell Disease programs to transition adolescents to once they reached adulthood.

 

Objective 2: Increase number of families who are aware of need for provision of transition services from 32% in 2017 to 35% in 2022.

 

Data:

The 2019-2020 National Survey of Children’s Health data state 37% of families were aware of the need for transition services in Oklahoma. Sooner SUCCESS County Coordinators surveyed families of transition age CYSHCN in order to assess their level of awareness around timely preparation for transition of health care for their children. For FFY21, Sooner SUCCESS surveyed 142 families of which 30 (21%) of those families surveyed reported having a plan for transition.

 

Successes:

Sooner SUCCESS continued to host quarterly HCT committee meetings where collaborators, community partners and families had an opportunity to hear about Sooner SUCCESS’ work around health care transition. The attendees shared their own experiences and identified service gaps in the community. Sooner SUCCESS encouraged attendees to be part of the program’s efforts whenever possible. Any new resources mentioned or identified as meeting community needs were added to toolkits. OFN and OK FS360 both contributed to these meetings.

 

OK FS360 continued to bring opportunities of learning about adult health care transition to the families served through the Center and to the Spanish-speaking support groups in the area. OK FS360 provided individualized information, care coordination and family support to families with children 12 to adulthood. OK FS360 was the one stop center housed at the Center for Learning and Leadership, Oklahoma’s University Center for Excellence in Developmental Disabilities (UCEDD).

 

For FFY21, the OK FS360 Center distributed the one-page bilingual document created by the OK FS360 Center staff about health care transition, which included specific state resources that the families could utilize when helping their children transition from pediatric to adulthood medical services.

 

OITP provided weekly activities for the NICU families. Written and verbal information was provided relating to transitioning from care in the NICU to care in a medical home. This information included community resources, facts on transitioning care for their child, mental health and stress management. Parent lunches and scrapbooking sessions, when able to be held due to COVID-19, were well attended and provided an excellent forum for parents to ask questions and OITP staff to provide information.

 

As a result of parent feedback, OITP developed a “caregiver box” for the NICU families from out-of-town who did not bring much with them in terms of needed personal items when they were rushing to the hospital. The “caregiver box” included a toothbrush and toothpaste, ear buds, an electronic battery charger, deodorant, eye mask and ear plugs for sleeping, notebook and pen and a children’s book to read to their child in the NICU. This family success story was provided related to the caregiver boxes: OITP had one father from a rural Oklahoma town who followed Medi Flight in from the delivering hospital to OU Health. The father came with only the clothes he was wearing. OITP gave him a “caregiver box” and he expressed to staff that it was “a life saver”. He called his wife and expressed how glad he was that his baby was at a hospital that cared for the family as much as the baby.

 

The Sickle Cell Clinic encouraged the representation of families with Sickle Cell Disease to be on the Oklahoma Children’s Hospital Family Advisory Board and Jimmy Everest Center (JEC) Advisory Board.

 

Challenges:

OFN reported that families lacked understanding of the importance of beginning transition skills early. This lack of understanding limited OFN’s ability to gain their attention for attendance at trainings, conferences and other events promoting health care transition skills. Additionally, families were overwhelmed due to the last two years of virtual school, lack of in-home supports/services and trying to juggle it all.

 

During FFY21, the Saint Francis Family Advisory Council recommended educational handouts be provided to youth, ages 16 and over, with emergency room (ER) visits to educate parents and youth on the upcoming transition to the adult ER. Caregivers would be encouraged to speak with pediatricians and specialists on the importance of providers discussing the transition with their children. The group tasked with addressing transition from the Saint Francis Children’s ER to the adult ER did not meet because of a change in leadership and COVID-19 precautions.

 

OK FS360 continued to report challenges surrounding the COVID-19 Public Health Emergency and its effect on the families OK F360 served during FFY21. OK FS360 reported that many families had challenges accessing services due to a lack of knowledge, experience and technology in accessing the distance learning opportunities.

 

OITP reported some parents were hesitant about meeting in a large group due to their infant being immunocompromised. OITP provided information to these parents on a one-on-one basis. However, it was difficult to schedule time with each family.  

 

Objective 3: Increase number of families of CYSHCN who report receiving transition services from 21.8% in 2017-2018 to 24.4% in 2025.

 

Data:

The combined 2019-2020 National Survey of Children’s Health found that 37% of Oklahoma adolescents with special health care needs, age 12 to 17 years, received the services necessary for making the transition to adult health care. This is an increase from the 28.5% just over a year prior (2018-2019). This rate is higher than the national average of 22.5%.

 

Successes:

Sooner SUCCESS continued to host quarterly HCT committee meetings where collaborators, community partners and families had an opportunity to hear about Sooner SUCCESS’ work around health care transition. The attendees shared their own experiences and identified service gaps in the community. Sooner SUCCESS encouraged attendees to be part of the program’s efforts whenever possible. Any new resources that mentioned or discussed and that met identified community needs were added to toolkits.

 

Sooner SUCCESS County coordinators continued to navigate services for Oklahoma families to assist with health care transition for their kids. County coordinators reached out specifically to families who have transition age children to ensure that they had considered healthcare transition and were developing an effective transition plan.

 

The OK Transition Institute (OTI) was held October 26-28, 2021, and hosted online for 525 attendees. OFN promoted the OTI in multiple ways to increase family participation and there was no registration fee. Three OFN staff presented sessions which included Charting the LifeCourse (80 participants), Charting the LifeCourse in Spanish (10 participants) and Preparing Students to Transition to Adult Wellness (84 participants). Two OFN staff were on the planning committee for the OTI and were very involved with the planning and implementation. They remained on the planning committee for 2022 and attended all meetings.

 

OFN reported that Health Transition Training was also provided to 15 individuals during a Poteau young adult summer summit. OFN promoted the Houston Medical Transition Conference to families and professionals virtually.

 

OK FS360 reported that 30% of the children served in the program during FFY21 were able to apply for support and transitional services. Some examples included the Developmental Disabilities Services, Supplemental Security Income and State Supplemental Payment. That percentage was up by 4% from the previous fiscal year.

 

OITP scheduled and staffed weekly Oklahoma Transition Clinics (Clinics) for infants discharged from the NICU with special health care needs. OITP had 70 clinic days and reached 234 patients in NICU follow-up clinics. The neonatologist assigned to the NICU Follow-Up Clinic addressed any health care needs the infant may have had due to the NICU stay or any health care needs that the infant may have encountered since discharge. An OITP social worker performed a needs assessment for the infant and family. Referrals were made for any infant who needed additional services and the importance of the referral for the infant was discussed with the family. Referrals included SoonerStart, speech therapy, physical therapy, and/or referrals to other specialty physicians or clinics. Additionally, OITP social workers tracked the mother’s PHQ-9 score obtained during the NICU stay and compared the first PHQ-9 score to the score obtained after discharge in the follow-up clinic. Comparing the PHQ-9 scores allowed the team to assess the mother’s needs for additional mental health resources and counseling.

 

The Sickle Cell Clinic held the 1st Annual Sickle Cell Disease Patient/Family Networking Event for patients/families. Past patients who had successfully transitioned and current patients and their families attended the event. Educational sessions were held on disease modifying strategies, curative options (including bone marrow transplant), COVID-19 and Sickle Cell Disease, keys to successful transition, psychosocial impact of Sickle Cell Disease, genetic counseling, and life lessons learned in living with Sickle Cell Disease. The event was recorded for those who could not attend in person.

 

The Parent Promise Family Services Navigator worked on the creation of a community needs assessment outline seeking feedback to determine resource and service needs by the families of the CYSHCN population.

 

Challenges:

Health care transition remained a topic frequently not addressed by families until the actual transition point approaches.

 

OFN was not able to track the number of Oklahoma families who attended the Houston Medical Health Care Transition Conference.

 

OK FS360 reported that families continued to struggle with access to information in Spanish during FFY21. Many of the agencies that families relied upon lacked sufficient bilingual personnel. Some of the agencies did have translation services but not all staff were aware of those translation services to assist the families. Additionally, many agency websites were not available in other languages. All of this made it difficult for families to not only access the services but also to learn about the services that their child might benefit from.

 

COVID limited in-person meeting opportunities for the Sickle Cell Clinic.

 

Objective 4: Expand ongoing pilot study between Sooner SUCCESS and selected clinics at OUHSC to establish a system to help collect, analyze and report data from the pilot study by 2023.

 

Data:

Sooner SUCCESS worked with three clinics at OUHSC as part of their Pilot Study. The three clinics were the Child Study Center, Sooner Pediatric Clinic and the Sickle Cell Clinic. Sooner SUCCESS reported unforeseen challenges in FFY21 with the Pilot Study due to COVID-19. The Child Study Center was able to make some progress by implementing an HCT policy and setting a goal that all patients,16 and older, would complete the HCT readiness assessment so that providers could review and discuss results. The Sooner Pediatric Clinic had little progress and the Sickle Cell Clinic advanced their HCT policy and procedures. Sooner SUCCESS reported there were future plans in place to remain on track to report data by 2023.

 

Successes:

Sooner SUCCESS reported that procedures undertaken, via the pilot study, helped determine the count and percentages of children in participating organizations who received services necessary to transition from adolescent to adult health care.

 

Sickle Cell Clinic staff continued to provide support for any sickle cell disease related concerns to providers on the adult side, other sub-specialties and primary care physicians.

 

Challenges:

Sooner SUCCESS reported that the implementation of the pilot study was slower than expected due to COVID-19 protocols, which included increased telehealth visits instead of in-person visits.

 

The Sickle Cell Clinic continued to await transition to a new Electronic Health Record (EHR) system (for incorporation of standardized forms and templates, educational materials, order sets and algorithms used in practice) at an institutional level.

 

Objective 5: Complete a minimum of two provider trainings on Healthcare Transition by 2023.

 

Data:

A series of HCT provider trainings was developed (three modules per series) in order to provide training in the fall 2021. However, provider training could not be scheduled until May 2022 due to increased COVID-19 cases, staffing issues and difficulties obtaining Continuing Medical Education (CME) approval.

 

Successes:

Sooner SUCCESS successfully navigated the CME approval process and gained CME approval for three separate HCT provider training sessions in partnership with Dr. Terence Gipson.

 

OITP is affiliated with the University of Oklahoma School of Medicine and regularly hosted residents in both OITP clinics to allow future providers a specialized look into the need and mechanics of transitioning from the NICU to a medical home. Many residents cared for these infants in the NICU and in OITP follow-up clinics giving them the unique advantage of both inpatient and outpatient care and education.

 

Sickle Cell Clinic completed numerous provider training activities throughout the institution, all of which included at least some information on health transition for youth with sickle cell disease. Provider training included medical students, residents, fellows, Nurse Practitioner (NP) and Physician Assistant (PA) students, nursing staff, emergency room, pharmacists and providers.

 

Parent Promise Family Services Navigator attended Family Matters Virtual Conference on September 21, 2021 and September 23, 2021. This conference provided an opportunity for parents, caregivers, and service providers to build knowledge on how to support children and better manage challenges when caring for a child and/or young adult with special health care needs, behavioral health needs, or disabilities.

 

Challenges:

Sooner SUCCESS reported that the CME approval process required more time than originally anticipated which delayed the HCT provider training sessions initially scheduled for the fall. Part of the delays were due to the program waiting on OUHSC Marketing to develop and approve publicity materials.

 

OITP staff had a limited number of hours to have the resident care for NICU graduates in follow-up clinics. Residents cared for approximately 4-5 outpatients weekly.

 

One challenge for the Sickle Cell Clinic with provider training was the absence of a standardized program and the limited ability to offer CME credits for training.

 

Health Equity Objective 1: Develop a plan to increase healthcare transition awareness among the CYSHCN population, to include addressing health disparities for CYSHCN, by 2025.

 

Data:

OK FS360, in partnership with the Center for Learning and Leadership (CLL), created a step-by-step video in Spanish to assist families in applying for, renewing, and monitoring their benefits from the Oklahoma Human Services (DHS) agency. This included instructional assistance concerning SoonerCare for children receiving SSI.

 

Successes:

OK FS360 provided information in Spanish to parents and caregivers who were enrolled for their services. Information included activities, trainings and opportunities to learn about transition and adulthood. One of the major forms of assistance provided by OK FS360 was supporting the families for the continuation of benefits while they transitioned.

 

As a result of family inquiries, OITP scheduled and provided care conferences for families who had a child with complex medical issues (length of stay > 90 days or as requested by the physician) in the NICU. The care conferences began after 60 days, with consulting physicians invited to attend. Barriers to discharge were evaluated by a care team and plans were formulated to facilitate discharge home. OITP facilitated discussion of infant’s care between hospital staff and families and provided medical updates to the families. Anticipatory discharge guidance was provided approximately 14 days from the discharge home date in order to ensure parents were able to transition from NICU care to community care without difficulty. Care conferences were up from 27 in 2020 to 41 in 2021.

 

Many of the OITP families in the NICU came from rural areas in Oklahoma. OITP staff worked with rural agencies for resources and information when the infant was discharged home. One success story on these endeavors includes: OITP had a patient discharging home to a rural community who needed home health services, transportation assistance, pharmacy services for total parenteral nutrition (TPN), lab draws and weight checks. No home health agencies offered pediatric services in their community. OITP staff were concerned this barrier would not allow the infant to go home with his parents and would require him to be admitted to The Bethany Children’s Center for rehab. A small group of social workers, discharge planners and OITP staff were able to make inquiries and find the services this family needed to allow them to take their child home. OITP staff continued to keep in contact with the parents for further needs and to assess the family for stressors and needed coping strategies.

 

OITP staff continued to be members of the Oklahoma Family Support focus group to advise and to find appropriate resources for the needs of families in transition from the NICU to a medical home. OITP also continued to be members of the Transition Services Committee and the Fetal/Infant Mortality Review Committee, addressing the disparity of services for CYSHCN.

 

Many of the families in the NICU were Spanish-speaking only and needed an interpreter for updates, consents for medical procedures, and nursing updates. This need was met by the OITP Spanish-speaking interpreter who interpreted for physicians in the prenatal period, during the NICU stay, and in the OITP follow-up clinics. The Spanish-speaking interpreter also interpreted during phone calls to parents after discharge to check on their well-being. The OITP interpreter was a valuable asset for OITP’s underserved population of Hispanic families.

 

The Sickle Cell Clinic had a social worker available to help identify families who were able to work on developing a plan to address individual needs. The social worker remained actively involved in preparing patients for transition (discussing health insurance, life goals, jobs) and providing support services, referrals, help with school letters, medical accommodations, and financial issues. Follow-up with patients was provided in-between visits for those who needed more support.

 

Parent Promise Family Services Navigator attended and completed Circle of Parents training on August 4, 2021. The Circle of Parents training provided information and guidance on how to facilitate parent self-support groups.

 

Challenges:

The most commonly reported barrier staff faced was that families did not know who to contact for services for their child and needed help finding people who would advocate for them. Families lacked awareness of the services available to their children when unsatisfied with their current provider service.

 

OK FS360 reported that Hispanic families were often unaware of the services and tools that support children and youth at transitional age. Hispanics, in comparison to other communities, were disproportionately affected by COVID-19. During FFY21, OK FS360 lost caregivers to COVID-19, which made providing reliable information to keep the family and child safe, a priority.

 

OITP reported that once families discharged from the NICU, it was difficult to maintain current phone numbers and addresses. It was a time-consuming effort to contact parents who had moved, changed phone carriers or phone numbers and had not provided any email information for the file.

 

The Sickle Cell Clinic found more research needed to be done to understand the baseline when developing a plan to address individualized needs.

 

NPM 11: Percent of children with and without special health care needs, ages 0 through 17, who have a medical home.

 

Objective 1: Increase the percent of children with special health care needs, ages 0 through 17, who have a medical home from 39.7% in 2018 to 42.5% in 2025.

 

Data:

The combined 2019-2020 National Survey of Children’s Health found that 43.6% of Oklahoma children with special health care needs, age 0 to 17 years, have a medical home. This is slightly higher than the national average of 42.2%.

 

Successes:

OFN staff supported families in FFY21 and connected 773 cases to other families, support groups and resources in their community. The 2021 OFN Joining Forces Conference hosted 97 families and 200 professionals virtually. Speakers' presentations were made available on the OFN YouTube Channel with a total of 30 views during the reporting period. Accommodations were provided with live Spanish translation and captioning during each presentation.

 

During FFY21, OFN provided Transition Care Notebook Training to 9 individuals. A total of 630 Care Notebook and 258 Transition Care Notebook sets of documents, as well as 153 sets of the Genetic Module of the Care Notebook, were downloaded from the OFN website. OFN staff provided Community Resources Training to 56 individuals during FFY21. OFN provided HCT training during the OK Transition Institute for 84 individuals and 27 families during the Family Matters Conference. OFN posted flyers for the Chronic Illness and Disability Transition Conference to seven Facebook groups/pages. OFN provided registration information to Saint Francis Children’s Hospital, who included it in their newsletter to 800 families and providers. Two OFN staff were on the OK Transition Institute Planning Committee and were very involved with the planning and implementation.

 

OFN, in collaboration with the National Alliance on Mental Illness Oklahoma (NAMI), Developmental Disabilities Council of Oklahoma, and Pervasive Parenting Center, provided the Family Matters Conference, a conference for families of children and youth with special health care needs. The conference registration included 376 individuals, 39% were rural residents, 31% suburban and 30% urban. One hundred and forty-three (143) caregivers, 15 self-advocates and 50 professionals attended, while 256 received conference boxes with 20 resources and words of encouragement. Sessions were determined following a survey provided to families served by OFN and other partners in spring 2021. Keynotes were Dr. Jennifer Jones and Dr. Kami Gallus on “Fostering Belonging to Support the Ordinary Needs of Families”. Other topics included health care transition (27 participants), Parenting an Anxious Child (89 participants), Understanding TEFRA Coverage (15 participants), Health of the Caregiver (48 participants), Understanding IEPs (26 participants), Youth Independence (15 participants) and Making sense of Challenging Behaviors (68 participants). A total of 18 sessions were provided. The final Keynote, Mike Veny spoke on “How to Find Peace in Times of Uncertainty”. The feedback, from families and professionals alike, was very positive with 100% stating their knowledge had increased and 97% satisfied with the conference.

 

OFN, in collaboration with National Family Voices, developed Telemedicine Training in English and Spanish. OFN reported that posters were developed in English and in Spanish to direct families of children in NICUs to OFN support in order to improve access to care during a time that OFN staff cannot reach families in person at NICUs. The posters (with QR code to referral form and web site information) were placed at three of the largest NICUs in the state.

 

An example of OFN services provided and the impact for one family is: “A Spanish-speaking mother whose child was born with a genetic condition could not access needed services due to agencies closing to in-person services. The family had limited English proficiency and no technology capacity. Most of the services or programs from Oklahoma Human Services required a birth certificate, which the family did not have and required on-line applications. OFN staff supported the parent virtually by helping her apply for her child’s birth certificate and the services she desperately needed such as respite, the Family Support Assistance Payment, etc. OFN connected the family to a Spanish-speaking supporting parent with similar experiences via phone, and she has been connected to local support groups. The family is very grateful for the services provided.”

 

During FFY21, OK FS360 provided one-on-one support services for families served. Additionally, OK FS360 was able to reopen in-person in order to better serve the most vulnerable families with urgent support. CDC guidelines were followed, along with the OUHSC policy regarding social distancing, to reduce the risk of COVID-19 exposures.

 

OK FS360 continued to build capacity with the goal for families served to be more self-sufficient and better prepared to make wiser choices for their children and youth. Learning opportunities were provided through health care notebook training, adolescent and mental health training and Applied Behavioral Analysis trainings for Spanish-speaking families.

 

OITP began transitional instruction while the infant was still in the NICU. OITP provided information about a medical home, answered questions and addressed concerns parents had. OITP increased the percent of infants seen in the Oklahoma Transition Clinic with special health care needs in a medical home. In this clinic, OITP provided instruction and information regarding additional resources and programs the child may need for transitional care. In FFY21, 100 families were seen in clinic.

 

Sickle Cell Clinic continued to employ a nurse navigator to help coordinate discharge education and follow up appointments. Sickle Cell Disease educational packets were provided to each family and education was provided with families at each visit. Handouts/links were utilized to direct patients/families to appropriate educational resources.

 

The Parent Promise Family Services Navigator attended and completed Circle of Parents training on August 4, 2021. The Circle of Parents training provided information and guidance on how to facilitate parent self-support groups.

 

Challenges:

OFN referrals declined since staff were not in hospitals, at meetings or hosting trainings in person. Attempts were made to connect with partners but there is no replacement for relationships that are developed and nurtured in person.

 

OK FS360 access to information and services during COVID-19 moved to online rather than in-person or telephone contact and trainings were conducted through Zoom. Many of the families served did not have access to the technology needed or they did not feel comfortable using technology the way it was required in order to access the information. Subsequently, fewer families attended the meetings, in comparison to in-person meetings.

 

Many OITP families had a knowledge deficit regarding health needs for their child in the NICU. OITP stressed the importance of follow-through for their childs health care needs. Some families were unwilling to acknowledge need for services due in part to the stigma associated with a child with special health needs.

 

A challenge for the Sickle Cell Clinic was that many patients lacked a Primary Care Physician (PCP).

 

Objective 2: Develop at least 2 trainings for health care providers to improve care integration and cross provider communication using evidence-based tools by 2022.

 

Data:

In FFY21, OITP initiated 41 multidisciplinary care conferences for NICU patients with complex medical issues and their families.

 

Successes:

Sooner SUCCESS staff worked with the OUHSC Marketing Department to develop outreach materials for providers on an upcoming HCT Provider Training sessions, to include billing information. The three-session training received CME approval.

 

OK FS360 continued to have a strong relationship with OU Family Medicine clinic during FFY21. The relationship allowed the opportunity for the OK FS360Center staff to provide training to medical residents going through the Family Medicine rotation. Included in the training was information regarding the unique needs of families who speak Spanish, and those from other minority populations. Also included was the perspective of medical transition when a family has a child with a disability or special health care need.

 

Oklahoma Infant Transition Program scheduled multidisciplinary care conferences for NICU patients with complex medical issues and their families. Consulting physicians were invited to attend. The goal was to initiate a care conference for infants with a length of stay greater than 90 days in order to identify barriers to discharge and to formulate a plan of care to facilitate discharge to home or to a long term care facility. In FFY21, all care conferences scheduled while the infant was in the NICU were teleconferences for parents and for consulting physicians who were unable to attend in person. This allowed the parents to speak with physicians without arranging for transportation and/or child care. This appeared to be a success according to parent feedback.

 

The Sickle Cell Clinic continued to increase educational resources available to families and implemented an Annual Sickle Cell Disease educational event.

 

Challenges:

Sooner SUCCESS reported that increasing COVID numbers and the concerns associated with that, as well as waiting on approved publicity materials, delayed the HCT Provider Training, which was initially planned to begin in fall of 2021.

 

OK FS360 reported that training was limited to Zoom during FFY21. Zoom was a great avenue for training during a national Public Health Emergency but there were barriers associated with it. Staff reported that interaction was greatly reduced in a virtual format, rather than in-person, no matter how much students were encouraged to ask questions, interrupt or raise their hand.

 

OITP reported that some parents were intimidated about asking for a physician meeting. OITP worked with Child Life to break down those beliefs and barriers.

 

Sickle Cell Clinic had to limit in-person visits due to the COVID pandemic and rely on telemedicine.

 

SPM 3: The percent of families who are able to access services for their child with behavioral health needs.

 

Objective 1: Increase the number of children who receive behavioral and mental health services from 6.7% among children with Autism/ASD and ADD/ADHD disorders in 2017 to 7.8% by 2025.

 

Data:

The combined 2019-2020 National Survey of Children’s Health found that 56.5% of children in Oklahoma, ages 3 through 17, with a mental/behavioral condition received treatment or counseling.

 

Successes:

OFN continued to partner with NAMI Oklahoma, Parents Helping Parents and Evolution Foundation as a project of Oklahoma Mental Health and Substance Abuse Services in the CBHN, providing connections to supports and resources for families who have children with mental health concerns/diagnoses and training. OFN hosted 81 parents and 16 young adults at the Children’s Behavioral Health Conference in May 2021 for a variety of trainings and a lunchtime gathering for resource information. This allowed families to realize they were not alone in caring for a child with mental health concerns. They also learned skills for their own child and to share with other families in their area. In December 2020, CBHN also hosted a virtual family retreat for 127 caregivers which included self-help strategies for themselves as parents and for their children.

 

Oklahoma Mental Health and Substance Abuse Services, in collaboration with OFN, Systems of Care sites, Evolution Foundation and school districts in eastern Oklahoma counties developed Multi-Disciplinary Teams (MDT) to guide referral and treatment planning and practices with the Community Mental Health Centers and address individual student mental health needs. During this project, called EMBRACE, OFN provided professional development for school personnel including a virtual Summertime Summit for 72 teachers where the focus was trauma training with 12 different sessions. Teachers received their annual certification for human trafficking and suicide prevention. EMBRACE was focused on 14 schools in eastern Oklahoma, including 3 of the top 10 school districts in the state for numbers of students. OFN provided training to 54 caregivers and 127 school personnel to encourage calming for children experiencing anxiousness or problem behaviors.

 

OFN assisted in providing support and resources for 256 family cases related to mental health during this reporting period. Trainings were provided such as “Advancing Your Advocacy” for 32 caregivers and “Engaging Your Legislator with Sen. Julia Kirt” for 13 parents at the Family Matters Conference in September 2021. OFN co-hosted “Basics in Advocacy Training” with the Coalition of Advocates for Behavioral Health for 10 family members and 18 providers.

 

OFN provided registration for 15 families to attend the National Federation of Families Conference for Children’s Mental Health in November 2020. Families learned leadership skills including how to run a family organization.

 

Sooner SUCCESS hosted Wrightslaw Special Education Advocacy trainings for parents and professionals on September 14 and 16, 2021; 264 attended the trainings. Caregiver mental health and self-care bags across the state were provided during the summer of 2021 and in many counties during the fall of 2021 to reduce caregiver stress, anxiety, and isolation. Sooner SUCCESS staff supported multiple parent support groups, via zoom and in-person, to reduce social isolation. Additionally, Sooner SUCCESS hosted a 2-day statewide training for caregivers covering a wide array of topics relevant to caregivers across the lifespan.

 

To directly support CYSHCN, Sooner SUCCESS staff, as part of a local Autism Task Force, assisted with 2 weeks of sensory friendly summer camp for CYSHCN. Sooner SUCCESS staff provided fidget kits to some law enforcement and juvenile justice professionals to help reduce stress and anxiety experienced by children when they are removed from the home due to trauma or juvenile justice proceedings. Staff also facilitated holiday gifts and food boxes for those in need for multiple CYSHCN and their families.

 

To better support system-involved CYSHCN, Sooner SUCCESS staff provided multiple trainings on how to better support families impacted by disabilities in healthcare and child protective services settings. A staff member served as an ongoing member of a Multidisciplinary Team on a Child Abuse Response Team as a disability resource for the tea. The staff person was able to integrate education and mental health providers into the team to ensure a more inclusive and well-rounded team responses.

 

Sooner SUCCESS shared a family story where staff aided a family in their ability to cope with a stressful situation. Sooner SUCCESS staff also worked to improve systems change concerning the situation. “A provider at OU Children’s sent a referral to Sooner SUCCESS for a family. The family had a child with complex needs and had been receiving treatment out of state. Due to the licensing requirements in Oklahoma, telemedicine follow-ups must be completed by traveling out of state. The coordinator was able to assist with respite, medical equipment needs, and provide information on lodging assistance related to travel”. The coordinator contacted a local legislator who was learning about the issues and hoping to improve interstate licensing to educate them on how this impacts families.

 

The Family Partner and JumpStart Preschool Autism Evaluation Team provided assistance to a total of 120 families in accessing behavioral/mental health services for FFY21. This was similar to the prior year in which 127 families were directly served. The Family Partner/JumpStart Team participated in team evaluation/feedback sessions with

91 families seen in JumpStart Clinic for FFY21. The Family Partner continued to provide continuity of care through direct resource navigation to 29 families in other clinical programs at the Child Study Center, including the A Better Chance Prenatal Substance Exposure, JumpStart Follow-Up, and Developmental-Behavioral Medical Clinics. Many of these families were Spanish-speaking.

 

All families seen in JumpStart Clinic in FFY21 received a diagnosis/diagnoses (e.g. autism spectrum disorder, developmental delay, intellectual disability, receptive-expressive language disorder, anxiety, disruptive behavior disorder, ADHD) and a plan of action, referral recommendations, and resources. This process was maintained even when providing periodic virtual visits to meet the needs of families during the pandemic. Families were encouraged to call back after appointments with any questions, or if additional help was needed.

 

The Family Partner at JumpStart contacted several families after their visit to discuss follow-up concerns. This role was enhanced, given the Family Partner’s combined position serving 50% of their time as Family Partner at JumpStart Clinic and 50% of their time as an Oklahoma County Coordinator for Sooner SUCCESS. The Family Partner/JumpStart Team assisted with scheduling a 6-month follow-up with a Developmental Behavioral Pediatrician (DBP) physician for those children diagnosed with autism to check-in and determine if additional assistance was needed in accessing behavioral/mental health, school, medical and other community resources.

 

The Family Partner continued a monthly “Community Conversations” Zoom support session for Spanish-speaking families whose children were previously seen in JumpStart or other clinics. The Family Partner reported how grateful the families were for these meetings in helping the families better understand their child’s Individualized Education Plan, general resources, and all the respite programs that were available. Caregivers felt safe to open their hearts about their challenges and stressors. Caregivers asked questions and listened to the struggles of other parents and the methods that helped them.

 

The Family Partner shared this experience: “There was one caregiver who had no idea she could access the Family Support Assistance Program. She currently has an 8-year-old daughter recently diagnosed with intellectual disability and 4-year-old twins. She was unaware that this resource was available to her and was so excited. Within days, she filled out the application and submitted it. On the most recent call, she had just gotten the debit card in the mail and took the opportunity to thank all of us on our community conversation meeting for telling her about this resource. Now she has helped a friend learn about it, and her friend is planning to attend the next Zoom meeting. She could not stop thanking me.”

 

OK FS360 continued to bring awareness about behavioral and mental health services to families served and to the Spanish-speaking support groups in the community. OK FS360 utilized knowledge about the attitudes concerning mental health care within the Spanish-speaking community to help support understanding and acceptance. OK FS360 Center, in partnership with OFN and a community medical provider, who was skilled and knowledgeable on Applied Behavioral Analysis (ABA) intervention, offered informational trainings to families. The trainings included information about mental health and better ways to support children who may have a behavioral health need, autism, ADHD or any related condition. Four trainings were offered during FFY21 and all were translated into Spanish in real-time.

 

OK FS360 Center continued to refer/connect children for assessment, and also referred children to mental health and behavioral supports. OK FS360 offered translation when the provider was not bilingual.

 

OITP staffed and scheduled approximately 47 clinics in FFY21 which provided neurodevelopmental assessments at 1 and 2 years of age. Referrals were made for each child that may have had neurodeficits or behavorial opportunities. Parents were given resources and educational information for developmental, mental health and other needs as indicated. Social workers continued to assess mothers for any mental and/or mood disorders and were able to connect families with other Title V partners for counseling and resources. OITP screened mothers of our NICU patients, as well as mothers who brought their child to the NICU follow-up clinics, for mood disorders and offered counseling along with written or online resources. OITP used the PHQ-9 questionnaire in the NICU and follow-up clinic. Scores were compared to see if mothers were improving or facing different difficulties once they were home.

 

OITP scheduled care conferences at the physician’s request or if the patient was in the NICU for greater than 60 days. Parents were contacted to make sure they were receiving updates from the neonatologist and asked if they would like to meet with consulting physicians for an update. OITP scheduled care conferences for the purpose of discharge planning with consulting physicians, The Children’s Center, if needed, occupational and physical therapy, wound care, etc., to make sure the parents had all the resources they needed for a successful transition from the NICU to home. OITP also called parents within 72 hours of discharge to see how they were coping and if they needed additional resources.

 

OITP staff were members of multiple support and education groups throughout the county and outside of OU Health. The information and resources provided in these activities was utilized by OITP staff to enable NICU parents to have a successful transition home.

 

The Sickle Cell Disease social worker continued to meet with all patients/families at least twice per year. To better serve families, the Sickle Cell Clinic added a second full time licensed psychologist. Sickle Cell Clinic had a psychologist and licensed counselor available to all patients with Sickle Cell Disease for counseling services. They met with patients at least one time annually and provided behavioral and mental health services as well as referrals for neuropsychological testing, counseling services, cognitive behavioral therapies and psychiatry.

 

J.D. McCarty Center provided services for children birth to 21 years of age through a

Title V CSHCN partnership. J.D. McCarty Center provided free therapeutic services screenings to any family in Oklahoma that had a child that they believed may be in need of services for an intellectual or developmental disability. The total number of therapeutic screenings provided in FFY21 was 59. During therapeutic services screenings, J.D. McCarty Center assessed the needs of the child being screened, as well as their families, and identified any correlating services that may be available in the state of Oklahoma to assist the child and/or their family, including any necessary mental health services.

 

J.D. McCarty Center continued the C.A.R.E. program (Connecting With Families. Assessing Resources. Responding To Needs. Enhancing Lives.) that provided assessments and educated families about services. Staff visited with children and families out in the community rather than having the families come to the facility for the assessments. The C.A.R.E. program was a great marketing tool as it allowed staff to inform families of the different services the J.D. McCarty Center provides. It also allowed staff to help the family find services that were needed if the J.D. McCarty Center did not provide those services, including mental health services. The C.A.R.E. program served 89 families in FFY21.

 

Parent Promise Family Services Navigator attended and completed the Standards of Quality for Family Strengthening and Support training. This training provided information and guidance on using a multi-generational, strengths-based, family-centered approach working with families. Parent Promise Family Services Navigator staffed a resource booth at the Oklahoma Association for the Treatment of Opioid Dependence (OKATOD) Conference.

 

Challenges:

OFN reported that Infant and Early Childhood Mental Health Coalitions have disengaged during COVID-19 and have not resumed.

 

For most of the FFY21 period, the Family Partner position at JumpStart Clinic was a part-time (20 hours/week) position. Follow-up with all individual families seen in JumpStart Clinic was a challenge given the limited time constraints and other responsibilities. Resource navigation for families of children with autism substantially increased as ABA became covered by SoonerCare/Medicaid. These families were often overwhelmed in navigating the options for ABA in the community, ensuring insurance coverage, and identifying an agency with availability that was suitable to the family’s needs and safety, particularly given the ongoing impact of COVID-19. Title V CSHCN approved expansion of the Family Partner/JumpStart Clinic position to full-time at the end of the FFY21 period. However, the person in the Family Partner position left the role in August 2021 for another position. The Family Partner position remained vacant until after the FFY21 period. During that time, the JumpStart Team provided family support and navigation services, although their capacity was limited compared to that of the dedicated position.

 

The Family Partner “Community Conversations” Zoom sessions for Spanish-speaking families was put on hold when the position became vacant in August 2021.

 

OK FS360 reported that the term “mental illness” was stigmatized as a weakness in the Spanish-speaking community. Mental illness was not viewed as a medical condition. This attitude continued to be a barrier. Additionally, there were a limited number of bilingual mental health providers skilled at providing care to children and consequently, there were long waiting lists for those.

 

Many of the NICU families experienced denial regarding their child’s neurodevelopmental deficits and did not realize that developmental assessments were an important part of their child’s well being. OITP staff educated parents about the intricacies of the premature brain and the capacity to continue development due to neuroplasticity. For families, emphasizing the importance of early intervention to prevent some of the major neuromuscular deficits that develop in the prenatal and neonatal period due to brain injuries, was critical for buy-in.

 

The Sickle Cell Clinic cited lack of transportation as a reason that sometimes limited their patients from coming for their clinic visit.

 

COVID-19 continued to be the most prevalent challenge that J.D. McCarty Center encountered during FFY21. The respite program, which allowed caretakers to seek out support for mental health care, was put on hold during FFY21 due to the ebb and flow of community COVID-19 cases. As a result, the Center had difficulty retaining Direct Care staff since no new respite admissions were allowed during the project period in order to keep the current, vulnerable inpatient population safe. Additionally, the J.D. McCarty Center continued to face challenges in relation to a lack of marketing (a broad outreach) for the respite program.