Percent of adolescents with and without special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care.

 

Objective 1: Develop a toolkit for primary care providers by 2020.

 

Data: 

The Health Care Transition Toolkit has been developed and placed online.  Sooner SUCCESS continued to work towards adding additional resources for families.  During FFY20, Sooner SUCCESS provided psychosocial support and resources to the families of 810 children between 12 to 18 years of age.

 

Successes:

The Oklahoma Department of Human Services Title V program continued to collaborate with Sooner SUCCESS on Health Care Transition (HCT) with the ultimate goal being to provide the essential services required to assist the adolescent population with health care transition and the development of a toolkit for primary care physicians and families. Development and distribution of a toolkit to providers, partners and families will increase awareness of standard practices of health care transition in due time, fundamentally increasing the percentage of youth with special health care needs receiving necessary services to make transition to all aspects of life, including health care, work and independence. The HCT toolkit is available at the following link:  https://ouhscsoonersuccess.github.io/ok-hct-toolkit.github.io/

 

In FFY20, Sooner SUCCESS continued in the development/maintenance phase of the toolkit for primary care physicians and families of children between 12 years and 22 years of age. The knowledge periodically attained through utilization of appropriate resources helped to inform updates needed to the existing toolkit. During 2019-2020, Sooner SUCCESS also began distribution. Posters, brochures and flyers were handed out at doctor’s offices, conferences and workshops. Academic posters highlighting the resources were also presented.

 

The section on providers included resources such as readiness assessment tools, diagnoses fact sheets, relevant webinars and recently published yearly reports on health care transition. Other topics included provider billing and procedure manuals. The section on “Finding Health Care” included links for finding providers across different specialties from multiple organizations within Oklahoma. Under the “Provider Information Brief” domain, multiple topics with links to resources were included to help physicians and providers navigate families through HCT and connect them to community-oriented services in their community.

 

In early 2020, Sooner SUCCESS got an opportunity to receive guidance from Dr. Patience White from the National Alliance to Advance Adolescent Health. Based on her recommendations, Sooner SUCCESS revised the HCT toolkit as they procured more resources. Sooner SUCCESS also collaborated with Got Transition® for organized implementation of their HCT tools such as readiness assessments for youth and caregivers and tracking tools for progress documentation through the process of HCT. Implementation began for three pilot clinics at University of Oklahoma Health Sciences Center – Child Study Center, Sickle Cell Clinic and Sooner Pediatrics. Collaboration with other entities continued to provide means for further integration of variety of advanced topics surrounding HCT in the toolkit.

 

In FFY20, Sooner SUCCESS collaborated with a doctoral student from Health Promotion Sciences in the College of Public Health (COPH) at OUHSC to conduct a sub-study with Sooner SUCCESS families for assessment of their perception of the extent to which their children’s chronic health conditions were being managed in the current health care system. Once those results become available, they will significantly add to the family section of the HCT toolkit.

 

Sooner SUCCESS continued to coordinate and conduct quarterly Health Care Transition committee meetings where several community partners and representatives from clinics in the Children’s Hospital at OUHSC attended. Stakeholders from this group helped provide input regarding resources, new and revised, that needed to be included in the family section of the toolkit. Topics such as legal guardianship and decision-making, foster care, health insurance and SSI were included.

 

Oklahoma Family Support 360° (OKFS360°), a contractor for CSHCN, continued to participate at the quarterly Health Care Transition subcommittee meetings to give a voice to the Hispanic/Latino population perspective.

 

OKFS360° continued the conversation with pediatric residents during their practicum with CLL/OKFS360°/OUHSC (Center for Learning and Leadership/Oklahoma Family Support 360°/Oklahoma University Health Sciences Center).

 

Sickle Cell Clinic gave an annual educational presentation to first year medical students with participation of patients/families to provide a ‘face’ for sickle cell disease. Sickle Cell Clinic staff continued to provide educational talks to adult health care providers at the Stephenson Cancer Center.

 

As part of the contract with CSHCN, Sickle Cell Clinic also provided education and resources to the medical students, residents/fellows in training, nurses and nursing students as well as to Physician Assistant (PA) and Nurse Practitioner (NP) students during comprehensive sickle cell clinics and inpatient rotations. Sickle Cell Clinic developed sickle cell disease awareness materials and educational handouts were printed and distributed to Jimmy Everest Center (JEC) staff.

 

Challenges: 

Sooner SUCCESS reported that the varying complexity of scenarios where adolescents prepare and then transtion into aduthood requires coordination of multiple services. A variety of these needs were medical and many more were based in the community. Sooner SUCCESS reported that providng guidance and education to streamline a well-coordianted system of service navigation within and outside of medical world required discipline, organization and collaboration that is incentivized which was a difficult process to achieve given limitations posed by family dynamics and present resource availability. This included threats of sudden loss of services resulting from termination of benefits as adolescents became adults and came off of their parent’s health insurance plans. Sooner SUCCESS, with the help of its county coordinators and community partners, was able to find solutions to challenges such as this.

 

The COVID-19 pandemic slowed down usual business practices and the pace at which Sooner SUCCESS expected to further build on the HCT toolkit.

 

Oklahoma Family Support 360° (OKFS360°) reported a continued lack of communication about transitional services from medical providers to families and youth with developmental disabilities.

 

OKFS360° challenges included the COVID-19 pandemic and the deficit of information in their clientele’s primary language, Spanish. The pandemic produced a series of issues for families, which included basic needs, food, shelter, etc. Clinics cancelled visits that could wait for their current patients; however, most of the information was delivered in English so many Hispanic/Latino families were, again, without needed information.

 

Sickle Cell Clinic struggled with identifying and distributing educational materials/handouts to primary care providers. Sickle Cell Clinic collaborated with Oklahoma American Academy of Pediatrics (AAP) chapter to seek out their assistance.

 

Objective 2: Increase number of families who are aware of need for provision of transition services from 32% in 2017 to 35% in 2020.

 

Data:

Since October 2015, LEAD (Listen. Empower. Advocate. Database.) reports compiled by Sooner SUCCESS show that 3,127 children and youth with special health care needs (CYSHCN) have been supported through direct navigations efforts. Sooner SUCCESS County Coordinators continued to make efforts across time to survey families of CYSHCN’s in order to assess their level of awareness around timely preparation for transition of health care for their children. During FFY20, 144 HCT surveys were completed with children between 12 and 21 years of age. Thirty-four of the 144 (24%) report having a plan for transition.  

 

Successes:

Oklahoma Family Support 360° (OKFS360°) brought opportunities for learning about health care transition and services for a successful health care transition for all, including the Hispanic community, to the Hispanic support groups. The FS360° Center provided individualized information to families with children age 12 to adulthood enrolled at the Center. OKFS360° developed a solid relationship with an adult medical provider to bring awareness of health care transition to the Hispanic/Latino community served.

 

OKFS30° finalized the one page bilingual document for families and youth about health care transition, including information on different agencies that support this effort in the state of Oklahoma.

 

Oklahoma Family Network (OFN) staff participated in the Sooner SUCCESS Health Care Transition quarterly subcommittee meetings by providing input on resources and experiences related to transition to adult health care.

 

Sickle Cell Clinic Transition Coordinator participated in Healthcare Transition Committee meetings. Transition Coordinator was able to attend the meetings more regularly due to fact that the meetings were conducted via Zoom, after March 2020.

 

Another CSHCN contractor, the Oklahoma Infant Transition Program hosted two successful family activities weekly. One activity was a family luncheon where speakers provide inspirational or self-help topics. The speaker topics focused on transitioning home. OITP taught families to prepare for the transition home and what to expect once discharged. Parents also shared what they have learned. A total of 671 lunches were served which was a 62% increase. The second activity was a scrapbooking class where parents gathered and shared NICU experiences, tips for other parents or just pictures of their baby. Parents became a support system for other NICU families experiencing stress and anxiety. OITP hosted 535 family members in our scrapbooking class which was a 64% increase.

 

Challenges:

Oklahoma Family Support 360° (OKFS360°) continued to face a language barrier with their clientele and a lack of communication from medical providers to families about health care transition. The Public Health Emergency added to the difficulties faced by the Hispanic population as the delivery of services and supports for the families served changed to social distancing and virtual platforms. Many families served by OKFS360° did not have the technology or the knowledge to access opportunities of learning and awareness through these routes of delivery. OKFS360° worked with the families to access services virtually or by phone. OKFS360° attempted to teach the families about Zoom and other technologies. Clinics cancelled non-emergency appointments for patients, making basic care harder for families.

 

Oklahoma Family Network (OFN) reported that the cessation of in-person meetings, as a result of COVID-19, was challenging.

 

OITP outgrew their space for the family luncheons and scrapbooking class activities. OITP worked with the hospital to identify additional space that is close to the NICU. The COVID 19 pandemic limited OITP’s access to families in the NICU. The family luncheons shifted to a “Grab & Go” box lunch. OITP was still able to give parents printed information about available resources. OITP staff called NICU parents to reinforce the need for resources and assess any needs they had in order to offer appropriate resources.

 

Objective 3: Increase number of families of CYSHCN who report receiving transition services from 22.5% in 2017 to 23% in 2020.

 

Data: 

The combined 2018-2019 National Survey of Children’s Health found that 28.5% 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 rate is higher than the national average of 22.9%.

 

Successes:

During FFY20, Sooner SUCCESS introduced 6-core principals of health care transition at two pilot sites at Oklahoma University Health Sciences Center (OUHSC). These two clinical sites included Child Study Center (CSC) located in the section on Developmental and Behavioral Pediatrics (DBP) and Sooner Pediatrics. There was one other pilot clinic at Pediatric Hematology/Oncology Clinic in the Children’s Hospital.

 

Sooner SUCCESS signed an agreement with Got Transition to be able to use their HCT implementation tools, including the caregivers and youth readiness assessment tools and patients progress recording and reporting tools. These tools were used at all three pilot sites.

 

To date, the CSC has been at the center of most of the efforts around healthcare transition for the pilot. A written policy for HCT was developed for CSC. Additionally, readiness assessments were developed using REDCap and providers started the process of intake with their patients. Shortly into this intake process, providers realized it was better for children and their caretakers to complete the readiness assessments at the clinic on iPads prior to the visit.

 

The Sooner SUCCESS team began working with Dr. Demvihin UIhyembe to design an HCT module on the Electronic Medical Record (EMR) for patient’s monitoring and recording purposes. Module development remained in process.

 

All three participating pilot clinics were made aware of each other’s appointments and patients’ management procedures through the healthcare transition subcommittee meetings and created a great collaborative learning opportunity for clinic staff.

 

The Pediatric Hematology/Oncology Clinic has conducted health care transition for their patients for several years. During FFY20, this Clinic began using iPads for completing readiness assessments with their patient population.

 

In FFY20, 26.6% of the children enrolled in the Oklahoma Family Support 360° (OKFS360°) program were able to apply for the support and transitional services, including but not limited to, Developmental Disability Services, Supplemental Security Income and State Supplemental Payment.

 

Oklahoma Family Network (OFN) assisted Sooner SUCCESS (the lead) on this strategy by providing training around Health Care Transition (HCT). OFN trained 56 families and 71 professionals during FFY20 by providing a presentation of 75 slides that included resources intended to assist with young adults transitioning to adulthood. OFN also provided Transition Care Notebook and other transition related training to 25 families and 24 professionals. One hundred forty-one individuals downloaded the Transition Care Notebook documents from the OFN web site.

 

OFN collaborated with the Children’s Hospital at Saint Francis in Tulsa to webcast the Houston Chronic Illness and Disability Transition Conference for 5 families and 4 professionals. A number of good resources were shared during that event.

 

OFN played a role in planning and executing the statewide OK Transition Institute.

 

Sickle Cell Clinic continued Sickle Cell Disease transition program with identified transition coordinator. During this grant year, the Sickle Cell Clinic implemented a database to identity patients lost to follow-up.

 

OITP increased the number of families receiving services from 528 infants in FY 2019 to 535 in FY20. This was a 10% increase.

 

OITP staff offered NICU tours to families that had a high-risk pregnancy in which the baby, once delivered, might be admitted into the NICU. These tours included explanation of equipment, visitation, and procedures. They also included self-care practices for parents. OITP provided 72 tours beginning November 2019 up through April 2020 when they became virtual due to COVID precautions and the NICU limiting visitors.

 

OITP added several diagnoses to the criteria for services. These diagnoses include infants with hypoxic brain injuries and infants with complex cardiac disease.

 

OITP initiated and hosted individual care conferences for babies whose length of stay in the NICU was greater than 90 days. OITP would notify the neonatologist and family to see what topics needed to be covered and what the barriers were to discharging home. In each care conference, the attending neonatologist, nursing leadership, primary care nurses, specialist, family members and OITP staff assigned to the infant as well as other members of the baby’s care team were invited to discuss a plan for discharge. The team made sure the family was comfortable with the infant’s plan of care and OITP continued to facilitate a smooth transition home. Care conferences increased by 50% from 2018.

 

OITP facilitated a weekly developmental clinic for NICU graduates at 1 and 2 years of age. OITP provided a Bayley developmental assessment at the clinic. After the assessment was completed, the physical therapist and neonatologist reviewed the assessment and made recommendations for care during the next transition to childhood and beyond. The child’s PCP was notified of the Bayley results and recommendations so they could follow up during the child’s next visit. Therapists completed 62 Bayley exams.

 

Challenges:

The Sooner SUCCESS family study conducted with LEAD families cannot necessarily be generalized to all families of CYSHCN’s in the state of Oklahoma. Families were either reached in person or efforts were made to contact them via phone calls and emails. Many voicemail messages were left where connections were not made after several attempts. Many voicemails and emails were not returned. In some case, families were not interested in completing the survey. Other factors included invalid phone numbers, no English speaking family member or no contact information available after a move. Additionally, Sooner SUCCESS serves many families anonymously who are referred by service providers who only request coordination of services without giving any demographic information.

 

For Sooner SUCCESS, the COVID-19 pandemic posed some new challenges where both families and providers were faced with uncertainties and stress at a taxing level. This may have affected routine flow of service navigation and interpersonal coordination. The necessity of social distancing, quarantines and fear associated with the pandemic could also have been implicating factors.

 

Oklahoma Family Support 360° (OKFS360°) reported that some of the programs and/or agencies lacked bilingual professionals to assist with transition services. Additionally, some of the programs had long waiting lists for services.

 

Oklahoma Family Network (OFN) recognized from the collaboration with Saint Francis that physicians, other health care providers and families have historically not been open to attending a multi-day conference on health care transition, via webcast. More work needs to be done to increase awareness of the importance of health care transition among families and professionals alike. It was evident that a different method of generating awareness and knowledge needs to be identified in order to reach more individuals.

 

Sickle Cell Clinic limited in-person visits during the 2nd quarter of 2020 due to COVID. Sickle Cell Clinic had a high no show rate/lost to follow-up, which increased due to COVID.

 

OITP has increased patient load for each social worker by approximately 20 patients per year without increasing staff size.

 

OITP added several diagnoses to the criteria for services which included medically fragile infants needing a smooth transition from the hospital to home. The additional diagnoses increased the need for family dynamic counseling, education on medical needs of infant and depression and anxiety reducing methods for the entire family. OITP staff needed on-going education/training to meet the needs of the families who may be experiencing increased anxiety/depression.

 

OITP continually tries to seek out additional resources for families who are making the transition from hospital to medical home and beyond as their child grows. The challenge is to find resources that are culturally sensitive, age appropriate and available to this population.

 

Objective 4: Develop a plan to increase healthcare transition awareness among the CYSHCN population, to include addressing health disparities for CYSHCN, by 2020.

 

Data:

Oklahoma Family Support 360° Center, in conjunction with the Oklahoma Family Network, provided dissemination and translation support to the OKmama support group for Spanish speaking families. In response to the COVID-19 pandemic, all OKmama meetings went virtual. The OKmama private/closed Facebook group platform distributed information from respected sources to help teleworking families access services and resources that they needed. The Facebook group saw an increase of 15% over the last year with the total friends (parents, guardians and professionals) rounding out to 204 by the end of FFY20.

 

Successes:

Oklahoma Family Support 360° (OKFS360°) provided information in Spanish to parents and caregivers about activities, trainings and awareness about transition to adulthood.

 

An OKFS360° Coordinator supported the Oklahoma Transition Institute by presenting “Charting the LifeCourse” and by contacting bilingual speakers to present at the conference. This was the first time the OTI had several sessions in Spanish throughout their conference for families of transitional youth. Those activities were aimed at reducing health disparities specific to the Hispanic community. The trainings were made available on the OTI website as well.

 

OKFS360° partnered with the Developmental Disabilities Council of Oklahoma to share and promote the Youth Leadership Forum program which increased the involvement of youth from the Hispanic community.

 

OKFS360° continued to share information in Spanish provided by the Got Transition project through their website, www.gottransition.org.

 

Sickle Cell Clinic continued Sickle Cell Disease transition program with identified transition coordinator. Sickle Cell Clinic had a social worker available to all patients with sickle cell disease to facilitate referrals to outside community resources/services.

 

Sickle Cell Clinic increased Sickle Cell Disease awareness and transition awareness by providing resources and educational materials to the families. Due to COVID, Sickle Cell Clinic was not able to host any in-person educational events for patients/families; however, materials and resources were still provided.

 

Approximately 25% of all deliveries at OU Medical Center were to adolescents. Many of the adolescent mothers experienced the anxiety of their baby admitted to the NICU at The Children’s Hospital. OITP provided services to these adolescent mothers along with education and counseling regarding transitioning from hospital-based care to home care for not only their infant but for themselves. These adolescent mothers were making the developmental transition into adulthood with a medically fragile baby, adding stress and anxiety to their family unit. OITP staff educated these adolescent parents on how to use family support systems and to advocate for themselves and their baby. Many of the adolescent mothers had transportation issues. OITP helped these young women to access transportation resources so they could continue to bond with their infant and learn the necessary skills to transition home.

 

OITP provided services for one adolescent mother who delivered premature triplets. The mother had a difficult time transitioning from the NICU to a medical home. Each of her three children had special healthcare needs; such has oxygen dependency, immature feeding skills and decreased muscle tone. At two months of age, her family members who had been helping with the care of her children began to leave and she was left caring for the triplets alone. OITP followed up with her in the follow-up clinic. The young mother was not sleeping and had very little funds so she was not eating. OITP helped the mother with services in her home and provided parenting classes and respite care.

 

OITP learned during one of the follow-up clinics that a teen parent with a child dependent on oxygen was in danger of having the electricity in their home disconnected due to lack of payment. OITP staff contacted the electric company and was able to keep her power from being disconnected. OITP also helped her to develop a budget to keep this from becoming a problem in the future.

 

OITP staff were members of and participated in the Oklahoma Family Support Focus Group to advise and find appropriate resources for the needs of families in transition from the NICU to a medical home. OITP was also a member of the Children’s Health Group for the State of Oklahoma, Transition Services Committee and Fetal/Infant Mortality Review Committee, which addresses the disparity of services for CYSHCN.

 

Challenges:

Oklahoma Family Support 360° (OKFS360°) addressed priorities, such as basic needs like food and shelter, for the Hispanic community during the pandemic because Hispanic families are often unaware of the services and tools that support children and youth at transition age. Information in Spanish about the virus and how to access protections and to keep their family and children with disabilities safe was not readily available.

 

Sickle Cell Clinic challenges included patients/families difficulties in following up and/or coming to clinic for their appointments.

 

OITP continued to be challenged in continuing education for staff and having the funding to attend seminars and conferences that would increase knowledge to provide services to the adolescent parent.

 

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 67.7% in 2017 to 68.5% by 2020.

 

Data:

The combined 2018-2019 National Survey of Children’s Health found that 56.4% of children in Oklahoma, ages 3 through 17, with a mental/behavioral condition received treatment or counseling.

 

Successes:

During FFY20, Oklahoma Family Support 360° (OKFS360°) Center connected enrolled families who were in need of behavioral or mental health services with information and referral for evaluation, diagnosis and treatment, as needed. OKFS360° collaborated with a bilingual representative from the Oklahoma Department of Mental Health and Substance Abuse Services to provide information about their services through the Hispanic Support Group.

 

Oklahoma Family Network (OFN) supported 1,296 families in FFY20 by providing one-to-one peer support, matching them with other families and connecting them with training and behavioral health resources.

 

OFN continued partnering with the National Alliance on Mental Illness (NAMI) Oklahoma Parents Helping Parents as a project of Oklahoma Mental Health and Substance Abuse and the Children’s Behavioral Health Network (CBHN). OFN provided connections to support and resources for families who have children with behavioral health concerns/diagnoses. OFN and other CBHN partners were actively engaged in community coalitions, which included three infant mental health coalitions. OFN furnished stipends to family leaders in order to provide a family voice during meetings.

 

OFN hosted 29 family leaders, 22 of which received all registration and travel expenses,

to attend the National Federation of Families for Children’s Mental Health Conference in Phoenix, AZ during FFY20. This group, which includes members from across the state, had quarterly encouragement and leadership training, received emails and shared opportunities and encouragement via their private Facebook group. Additionally, OFN hosted a Family Leaders’ Facebook page with 113 members. Posts were made with leadership opportunities and training.

 

OFN hosted the Virtual Children’s Behavioral Health Conference on June 10, 2020.

OFN provided conference packets with resource information to 34 parents and 15 young adults. Both conferences allowed families to realize that they are not alone in caring for a child with mental health concerns and they learned skills for their own child and to share with other families in their area.

 

OFN held the Joining Forces:  Supporting Family/Professional Partnerships Conference via Zoom in March 2020 with 403 in attendance. Dr. Chan Hellman, author of “Hope Rising: How the Science of Hope Can Change Your Life” was the keynote speaker with a gathering of 84 families following.

 

The Family Partner in the JumpStart Developmental Clinic provided assistance to a total of 127 families in accessing behavioral and mental health services for FFY20. This was an increase from the 120 families in the previous federal fiscal year.

 

The JumpStart Family Partner participated in team evaluation/feedback sessions with 110 families at the JumpStart Clinic during FFY20. The Family Partner provided direct resource navigation for many families, particularly Spanish speaking families, for other clinical programs at the Child Study Center as well, including the multidisciplinary A Better Chance Prenatal Substance Exposure Clinic. The Family Partner saw follow-up JumpStart and other patients and families in the Developmental-Behavioral Medical Clinic. Services were provided for 17 families in these other clinics at Child Study Center. All families seen at the JumpStart Clinic in FFY20 were provided with a diagnosis/diagnoses (e.g. autism spectrum disorder, global developmentally delayed milestones, intellectual disability, mixed receptive expressive language disorder, anxiety, disruptive behavior disorder, ADHD) and with a plan of action, referral recommendations, and resources. These services were maintained even during virtual visits, which were necessitated by the COVID pandemic. Families were encouraged to call back after the appointment with any questions, further explanation, or if additional help was needed. Additionally, the Family Partner contacted several families after the visit to discuss further follow-up concerns. The Family Partner role was enriched as it is a combination half-time position with JumpStart Clinic and half-time position as Oklahoma County Coordinator with Sooner SUCCESS, another Title V partner.

 

The Family Partner at JumpStart Clinic assisted with scheduling 6-month follow-ups with the Developmental Behavioral Pediatrics (DBP) physician to check in and to allow the DBP to determine if additional assistance was needed in accessing behavioral/mental health, school, medical, and/or other community services/resources.

 

The JumpStart Family Partner developed and hosted a monthly Zoom support session for Spanish-speaking families whose children were seen in JumpStart or other clinics. This meeting became known as Community Talk. In this forum, families discussed what helped them and how they could help each other.

 

The JumpStart Family Partner shared a success story about one of the families she served during FFY20. A parent brought in her toddler for an Autism evaluation. The parent already had a teenage child with Autism. The parent was Spanish speaking and could not read or write in her own language. The Family Partner and team took extra time to explain the process and assessment. The toddler was ultimately diagnosed with Autism as well. The parent was extremely thankful for the assistance and happy to know there would be an interpreter at the clinic who could help meet her needs. The parent was able to not only obtain service navigation information in her own native language for her toddler but also for her teenage child.

 

Sickle Cell Clinic continued to employ a licensed counselor to provide counseling services to patients with sickle cell disease, as well as a psychologist. The psychologist and licensed counselor were available to all patients with sickle cell disease for counseling services and met with patients at least annually. They provided behavioral and mental health services to the Sickle Cell Clinic patients and families and provided referrals for neuropsychological testing, counseling services, cognitive behavioral therapies and psychiatry. A Sickle Cell Clinic social worker was available to all patients/families to provide resources and referrals.

 

The Sickle Cell Clinic database helped to identify and track patients who were lost to follow-up so that staff could reach out to them to identify barriers and to increase clinic visit rate in order to increase psychology and behavioral services provided.

 

J.D. McCarty Center provided respite services for children aged birth to 21 years of age through a partnership with Title V CSHCN. The respite program remained a valuable program that provided caretakers the opportunity to seek out support for mental health care. In FFY20, J.D. McCarty provided respite services for six families – one family in October 2019, three families in November 2019, two families in December 2019 and no families from January 2020 through September 2020 due to the pandemic.

 

J.D. McCarty Center provided free therapeutic services screenings to families in Oklahoma that has a child that they believed may be in need of services for intellectual or developmental disabilities. J.D. McCarty Center assessed the needs of the children screened, as well as their families, and identified any correlating services that were available in the state of Oklahoma to assist the child and/or their family, including any necessary mental health services. In FFY20, J.D. McCarty served 82 families with therapeutic screenings.

 

J.D. McCarty Center kicked off a separate pilot program in March 2020 primarily in Cleveland County where staff visited with a defined population of children and their families out in the community rather than having the families come into the facility. Staff were able to engage with 206 families to discuss not only their services, such as respite care, but also help the families to find other needed services, such as mental health care. J.D. McCarty Center’s recent past challenges have included a lack of awareness by families in Oklahoma about their services and this new program has been a successful marketing tool to make families aware, at least in the local vicinity for now, of their respite program and the need for mental health.

 

OITP added multiple layers to the mental health services for NICU families. OITP screened for maternal mood disorders in the follow-up clinics at one month and one-year post discharge from the NICU. OITP developed a resource kit for families needing mental health care.

 

OITP was a member of the Maternal Mood Disorder Work Group in conjunction with the Oklahoma Department of Health.

 

OITP continued to recognize that it is not just mothers who need mental health assistance. During a one-year follow-up, a single dad with a child with special health care needs expressed feelings of helplessness and depression. OITP helped the father with online and in-person resources along with respite resources. OITP found that one year later, the single father was coping with his child’s special needs and was able to keep his depression from ruling his life.

 

Challenges:

A challenge OKFS360° faced was families having limited understanding and knowledge of what behavioral health is or how it can help them or their family. Additionally, there was a lack of bilingual behavioral specialists as well as materials in Spanish for families of children with behavioral needs or dual diagnoses.

 

OKFS360° was unable to carry out partnerships with Advanced Behavioral Solutions due to a conflict of the trainer and the sudden close of the clinic due to the COVID-19 pandemic.

 

Oklahoma Family Network (OFN) lost several staff over FFY20, and prior, due to the need for a higher rate of pay, health insurance and retirement. In September 2020, a staff member from a frontier area resigned due to the struggle of caring for her children and teaching them at home during COVID-19. Other staff had difficulty working the number of hours needed to support families in their regular fashion. This was, and continues to be, a strain on the organization as valuable wisdom was lost and the remaining staff were over-taxed.

 

The JumpStart Family Partner position continued to be part-time (20 hours/week). Follow-up with all individual families seen in the JumpStart Clinic was challenging given the limited time constraints and other responsibilities. This challenge worsened as resource navigation for families of children with Autism substantially increased due to Applied Behavioral Analysis (ABA) recently becoming a covered service under Soonercare (Oklahoma’s Medicaid program). 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 in the face of COVID.

 

The JumpStart Family Partner’s capacity to assist families increased over the last FFY and families and other interested parties became more aware of that. However, the availability to serve all potential families in the full clinic remained limited by time constraints and other responsibilities. There was no dedicated case manager position to follow-up with families.

 

The JumpStart Family Partner had challenges related to the COVID pandemic, especially as related to Internet/technological connectivity difficulties during attempted family support interactions.

 

Sickle Cell Clinic reported that some patients continued to be lost to follow-up and the no show rate continued to be high.

 

The COVID pandemic was the most prevalent challege that J.D. McCarty Center encountered over FFY20. J.D. McCarty Center had difficulty retaining Direct Care Staff to provide care during respite services because no new respite admissions were allowed after January 2020 in order to keep the current, vulnerable inpatient population safe.

 

The free therapeutic services screenings to families in Oklahoma that have a child they believed may be in need of services for intellectual or developmental disabilities were down 56.6% (from 145 in FFY19 to 82 in FFY20) due to the COVID pandemic. Part of this was due to families who were concerned about taking the child out of the home for the screening and partly due to the facility taking more precautions to keep both families and staff safe.

 

Many NICU families had a knowledge deficit regarding behavioral and mental health needs. OITP stressed the importance of mental health to the whole family unit but many families were unwilling to acknowledge need for services due in part to the stigma associated with mental health needs.