NPM: 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 toolkit has been developed and is being reviewed for edits by partners. During federal fiscal year (FFY) 19, Sooner SUCCESS provided psycho-social support and resources using the draft toolkit to the families and/or providers of 909 children between 12 years to 18 years of age.
Successes:
The Oklahoma Department of Human Services’ (DHS) Title V program continued to collaborate with Sooner SUCCESS to assess, develop, and disseminate Health Care Transition plans.
The ultimate goal of this collaboration continued to be to provide the essential services required to assist the adolescent population with health care transition and the development of a final toolkit for primary care physicians and families. Distribution of this toolkit to providers and families will increase awareness of standard practices of health care transition over time, fundamentally increasing the percentage of youth with special health care needs who received services necessary to make transition to all aspects of life, including health care, work and independence.
In FFY19, Sooner SUCCESS completed the development phase of the toolkit for both primary care physicians and families of children between 12 years to 22 years of age. Sooner SUCCESS also started the distribution planning and began gathering feedback from partners. Posters, brochures and flyers on transition were handed out at the Health Care Transition subcommittee meetings, in doctors’ offices, and at conferences and workshops. Academic posters highlighting the resources were also presented.
For physicians, the toolkit included readiness assessment tools, diagnoses fact sheets, links to relevant webinars, and yearly reports on health care transition by gottransition.org. Other topics, including provider billing and procedure manuals were also included. The toolkit was tailored to individual clinical settings and the unique pediatric population served. Additionally, the toolkit included a list of family physicians, internists, and specialty physicians willing to accept patients with special needs who are transitioning to adult health care.
For families, the toolkit was structured based on findings from previous studies and feedback from stakeholders. The toolkit was designed to include topics identified as being important for families, including information on legal guardianship and decision-making, foster care services, health insurance options, and Supplemental Security Income (SSI).
Sooner SUCCESS continued to organize and facilitate a quarterly Health Care Transition subcommittee meeting. Several community organizations, including the majority of Oklahoma’s Title V CSHCN contractors, and clinics at the Children’s Hospital and the Oklahoma University Health Sciences Center (OUHSC) sent representatives to the subcommittee meetings.
OFN staff participated in the Sooner SUCCESS quarterly Health Care Transition subcommittee meetings and provided input on resources and experiences related to transition to adult health care.
Oklahoma Family Support 360° Center participated in the quarterly Health Care Transition subcommittee meetings to give a voice to the underserved, low-income Hispanic population in the ongoing development phase of the toolkit for families and providers.
Sickle Cell Clinic staff provided transition summaries to all patients transitioning from pediatric care to adult care. The American Society of Hematology Sickle Cell Disease transition summary form was utilized. Sickle Cell Clinic revised guidelines for routine care, emergency room visits and Sickle Cell complications and made them available to the team caring for Sickle Cell Disease patients at OUHSC.
Sickle Cell Clinic staff provided educational talks on Sickle Cell Disease at the Stephenson Cancer Center. Staff also provided ongoing education on Sickle Cell Disease to pediatricians, trainees and students rotating through the inpatient services and through the Sickle Cell Clinic, which included transition information.
Sickle Cell Clinic collaborated and participated in TeleECHO through the Heartland/Southwest Sickle Cell consortium.
Challenges:
Sooner SUCCESS noted that one critical challenge was the coordination of multiple services, both medical and community-based, for adolescents transitioning into adulthood. Addtionally, potential loss of services due to changes in health insurance that needed to be navigated separately create barriers for youth.
Sickle Cell Clinic struggled with outreach due to issues with the identification of primary care physicians in the community who treat patients with Sickle Cell Disease.
Oklahoma Family Support 360° Center reported one of the challenges in the ongoing development of the toolkit was less than optimal participation by Hispanic families in the planning process.
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 of 2015, LEAD (Listen. Empower. Advocate. Database) reports compiled by Sooner SUCCESS show that 2,947 children and youth with special health care needs (CYSHCNs) have been supported through direct navigation efforts. Approximately one-third (1,030) of those children served were between 12 to 21 years of age. Sooner SUCCESS County Coordinators made continued efforts 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. To date, health care transition surveys have been completed with 447 families of youth 12-21. Twenty-seven percent reported having a plan for transition to adult health care.
Successes:
During this reporting period, OFN connected with 124 youth and families and 61 professionals during transition resource fairs to increase the awareness of need for transition services. Additionally, OFN staff provided community resource training, in partnership with the Center for Learning and Leadership/University Centers for Excellence in Developmental Disabilities (UCEDDs), to 16 residents and 106 families and professionals.
OFN co-hosted a site for the Chronic Illness and Disability Transition Conference with
the Children’s Hospital at Saint Francis in Tulsa. Promotion to all Saint Francis pediatric health care providers, schools and families resulted in 11 participants, 5 parents of transition-aged youth and 6 professionals (1 pediatrician and 5 child life specialists).
OFN provided Transition Care Notebook Training to 60 individuals. Also, 630 Care Notebooks, 258 Transition Care Notebook documents and 153 sets of the Genetic Module of the Care Notebook were downloaded from the OFN website during this reporting period.
Sickle Cell Clinic continued to enroll all patients, age 13-21, with Sickle Cell Disease into the Sickle Cell Disease Transition Program and followed them at least twice per year. Sickle Cell Clinic increased systematic reporting, patient engagement and noted a 15.6% increase participation in the Transition Program.
Oklahoma Infant Transition Program (OITP) hosted a weekly family luncheon where speakers provided inspirational and/or self-help topics. The self-help topics included teaching families how to prepare for transition to home and what to expect once discharged. Parents shared what they had learned. The parent luncheon increased in participation by approximately 37%.
Oklahoma Family Support 360° Center reported that 100% of all their families served, that included a child 12 years of age or older, received information on Health Care Transition.
Challenges:
For OFN, challenges included helping families recognize how quickly transition to adult services happened and encouraging families to develop a health care transition vision and plan.
Sickle Cell Clinic was challenged by the identification of patients lost to follow-up.
OITP outgrew their space for the weekly luncheon due to increased participation.
They are working with the hospital to identify additional space, close to the NICU, for future luncheons.
Oklahoma Family Support 360° Center reported that access to qualified medical clinics skilled in understanding the unique needs of the Hispanic population continued to be a barrier due to a lack of adult medical providers, including specialty clinics, that will take CYSCHN. The challenges included the language barrier for caregivers/parents working through health care transition with their youth as well as a lack of information in Spanish about the need for provision of transition services.
Objective 3. Increase number of families of CYSHCN who report receiving transition services from 22.5% in 2017 to 23.0% in 2020.
Data:
The combined 2017-2018 National Survey of Children’s Health found that 21.8% of Oklahoma adolescents with special health care needs, age 12 to 17 years, received the services necessary for making the transition to adulthood care. This rate is higher than the national average of 18.9%.
Successes:
In partnership with multiple state and local agencies, Oklahoma Family Network (OFN) was actively involved in the Oklahoma Works for ALL (OWFA) Pilot Project. OWFA is a cross-sector, human-centered pilot initiative with two components: 1) working with youth aged 14-24 years with an intellectual disability (IQ of 70 or below) on training, work experience and customized employment opportunities, and 2) working with the families, caregivers, and public schools using the Life Course model to ensure that Individualized Education Plans (IEPs) for students with intellectual disabilities support their vision for a good life and assist with transition to adult services. During this reporting period, training was provided to 18 teachers in Lawton and 12 teachers in Chickasha to prepare them for the project and encourage family and student participation.
Sickle Cell Clinic continued to provide transition services through the Sickle Cell Disease Transition Program twice per year at comprehensive clinic visits.
OITP increased the number of families receiving services from 335 infants in FY18 to 535 infants in FY19. This was an increase of 59%. OITP added several diagnoses to their criteria for services. These diagnoses included 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. The neonatologist and family determined what topics needed to be covered and what the barriers to discharge home were. In each care conference, the attending neonatologist, nursing leadership, primary care nurses, specialist, family members, OITP staff assigned to the infant, and other members of the baby’s care team discussed a plan for discharge. The team ensured the family was comfortable with the infant’s plan of care and OITP continued to facilitate a smooth transition home.
OITP facilitated a weekly developmental clinic for NICU graduates at one and two years of age. The Bayley Developmental Assessment was provided. Once completed, the physical therapist and neonatologist reviewed the assessment and made recommendations for care during the next transition to childhood and beyond.
Oklahoma Family Support 360° Center reported that 24% of families enrolled during FFY19 were of transitional age. These families learned about different programs as well as changes to those programs and to medical insurance once the youth becomes an adult. These families also learned about SSI, Medicaid, Department of Rehabilitation Services (DRS), IEP’s, transitional health care goals, etc. The Center helped bring awareness and information about transitional services through community meetings like OKmama. Topics covered included but were not limited to the following: “Sexuality and Puberty Health”, “Latina Women: Caring for Your Health Starting at a Young Age”, and “Legal Aspects of Guardianship When Transitioning to Adulthood”.
Challenges:
According to OFN, the biggest barrier for OWFA has been working with multiple agencies and going through the Institutional Review Board (IRB) process. The IRB was finally approved in Fall of 2019.
Sickle Cell Clinic was challenged by the identification of patients lost to follow-up.
OITP increased in patient load for each social worker by approximately 100 patients
per year without an increase in staff size. OITP had increased participation in parent activities from 1,133 in 2018 to 1,482 in 2019 without an increase in funding for supplies, manpower, or refreshments.
OITP added several diagnoses to its criteria for services which included medically fragile infants. Effectively transitioning medically fragile newborns from the NICU to home required family dynamic counseling, education on medical needs of the infant, and depression and anxiety reducing methods for the entire family. OITP staff required
on-going education/training (that is culturally sensitive, age appropriate, and available to this population) to meet the needs of these families who may be experiencing increased anxiety/depression.
Oklahoma Family Support 360° Center reported that finding bilingual professionals as well as family-friendly Spanish materials were two of the greatest challenges. Lack of knowledeable Hispanic family support was a constant challenge.
Objective 4: Assist primary care and specialty providers at a major state health care institution in establishing health care transition goals both for the institution and their patient population, in accordance with six core elements of health care transition.
Data:
Sooner SUCCESS, through its pilot project, is helping two clinics in the University of Oklahoma Department of Pediatrics to develop and implement standard practices in health care transition (HCT) from adolescent to adult practices. Lack of training in adolescent development and behavior is one of the most significant barriers to the care of patients with chronic diseases in adult practices. The number of providers in the Child Study Center who will gain knowledge in recommended HCT practices include two Developmental and Behavioral Pediatricians, one Advanced Practice Registered Nurse, one Licensed Clinical Social Worker, one Licensed Marriage and Family Therapist, eleven PhD’s, eleven Licensed Professional Counselors, five Child Development Specialists, one Occupational Therapist and one Speech Therapist. Similarly, twelve Medical Doctors and ten Advanced Practice Providers at the Sickle Cell Clinic will be supported through this HCT quality improvement pilot project.
Successes:
During FFY19, Sooner SUCCESS introduced six core elements of health care transition in two pilot sites at the University of Oklahoma Health Sciences Center (OUHSC). The two clinical sites included the Child Study Center, located in the section on Developmental and Behavioral Pediatrics, and the Pediatric Hematology/Oncology Clinic. Both clinics are located in the Department of Pediatrics at OUHSC. Sooner SUCCESS worked with the Child Study Center and the Pediatric Hematology/Oncology Clinic at OUHSC on health care transition. Specific objectives for the clinics included introducing a written policy at the two participant sites and sharing the written policy with families that have children between ages 12-22 years and the staff (both pediatricians and administrative) at both clinics. Other objectives included encouraging providers to track and monitor transition progress, conduct transition readiness assessments with youth and parents/caregiver, develop a plan of care, emergency care plan and medical summary, and prepare a condition fact sheet, care checklist and transfer letter. The ultimate objective for the pilot sites would be achieving transfer completion for families in collaboration with an adult provider. A health care transition policy was successfully developed for the Child Study Center in collaboration with the Sooner SUCCESS research team, Developmental and Behavioral Pediatricians, resident physicians, Electronic Medical Record Specialists and Human Resource Administrators. A partnership was established with The National Alliance to Advance Adolescent Health (gottransition.org) to access their resources and templates. The resources and templates were used to develop customized documents, such as a written policy specific to the population needs and administrative requirements of an individual clinic.
OFN staff met with leadership from the Children’s Hospital at Saint Francis in Tulsa regarding the transitioning of youth from the pediatric emergency room to the adult emergency room. These transitions have not been planned for nor have they been smooth. The consensus was to maintain the pediatric emergency room for youth until age 21 years. Known families of youth with high medical needs and the Saint Francis Family Advisory Council were consulted to ensure families are prepared for the transition. Outreach materials were developed to be handed out to families whose children utilize the emergency room and are ages 18 to 21.
Oklahoma Family Support 360° Center staff spoke to medical students from the OU Family Medicine Clinic about health care transition to equip the medical students in understanding health care transition.
Challenges:
Sooner SUCCESS reported that establishing standard methodologies in Health Care Transition (HCT) demanded knowledge, experience and utilization of evidence-based strategies. It required time and the alignment of schedules for those who were involved as well as lining up an institution’s administrative procedures to complement needs, goals and objectives for the population. It required securing physicians’ buy-in and commitment to the focus despite their busy schedules. It also required caregivers and patients willingness to complete transition readiness assessments, which was not always achieveable.
OFN reported that there are inconsistencies in all staff sharing information with the youth and their families. Youth and their families are not being well prepared for the shift to adult emergency room care even when the families learn of the upcoming transition.
The Oklahoma Family Support 360˚ Center had limited availability to collaborate with large health care institutions due to their focus, committed support and coordinated advocacy with families.
Objective 5: Develop a plan to increase health care transition awareness among the CYSCHN population, to include addressing health disparities for CYSCHN, by 2020.
Data:
Individual contractors for CSHCN worked on this measure for their respective programs. The Family Support 360° Center held free ABA (Applied Behavior Analysis) workshops once per month directed to parents and family members who speak Spanish and have a child with developmental disabilities and challenging behaviors. Forty parents or caregivers received this training in FFY19. The Center partnered with Oklahoma State University to provide information about the Special Education process and to provide IEP trainings in Spanish for the Hispanic community with the goal of improving advocacy skills for Hispanic/Latino parents with children with disabilities. Seventeen family members attended this training. Additionally, the Family Support 360° Center maintained an OKMama Facebook closed group to share upcoming events, news, resources and information for Spanish-speaking families in the Oklahoma City metro area and surrounding areas. The closed group had 178 friends (parents, guardians and professionals) at the end of FFY19.
Successes:
OFN staff, in partnership with Pervasive Parenting Center, provided the Young Adult Health Transition Training in LeFlore County to 16 youth and 3 parents to increase awareness and provide tips and tools for a successful health care transition.
OFN provided Health Care Transition Training to eight parents of transitional age youth at the Joining Forces Parent Conference.
OFN hosted quarterly meetings with multiple partners seeking to identify ways to better transition youth from inpatient mental health facilities back to their communities to reduce re-admissions and improve outcomes.
Sickle Cell Clinic continued to provide transition services through the Sickle Cell Disease Transition Program twice per year at comprehensive clinic visits.
Sickle Cell Clinic created/implemented transition summaries for all patients in the transition age group. Transition summaries provided for all patients transitioning from pediatric care to adult care utilizing the American Society of Hematology Sickle Cell Disease transition summary form.
OITP reported that approximately 25% of all deliveries at OU Medical Center were to adolescents. Adolescent mothers making the developmental transition into adulthood while having a medically fragile baby added stress and anxiety to the adolescent. OITP educated adolescent parents about transitioning from hospital based care to care for themselves and their infant at home. Education about services and counseling were provided. OITP taught the adolescent parents to use family support systems and to advocate for themselves and their baby. Transportation often was an issue for adolescent parents; therefore, OITP assisted the young women with accessing transportation resources so they could continue to bond with their infant and learn the necessary skills to transition home.
OITP continued to be a member of the Children’s Health Group for the State of Oklahoma, Transition Services Committee, and the Fetal/Infant Mortality Review Committee which addressed the disparity of services for CYSHCN. OITP staff were members of 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.
Oklahoma Family Support 360° Center began drafting a bilingual one-page document with focus of delivery to Hispanic families with or without special health care needs.
Family Partners’ (in the Jump Start Developmental Clinic) goal continued to be helping families and care providers to understand the developmental and behavioral strengths and challenges faced by young children suspected of having Autism Spectrum Disorder and other related neurodevelopmental disorders or delays. An interdisciplinary team (including a Family Partner parent advocate) provided a coordinated evaluation that considers both developmental and behavioral challenges and strengths of the child and family and provided both counseling and a diagnostic report that included individualized recommendations for family and service providers. The newly combined JumpStart Family Partner/Sooner SUCCESS Oklahoma County Coordinator incumbent is bilingual in Spanish and English and has experience in serving as an interpreter for developmental assessments.
Challenges:
According to OFN, all regional OFN staff need to be trained on the Health Module of theTransition Care Notebook so more training can be available statewide as families tend to manage transition to adulthood at the last possible moment. OFN and partners need to better promote children and youth beginning to manage their health as developmentally appropriate as young as possible.
Sickle Cell Clinic struggled to provide education in methods that successfully engaged the learning style and attention of the current generation.
OITP reported that continuing education for staff is needed, through seminars and conferences, in order to increase knowledge on how to better serve the adolescent parent.
The Family Support 360° Center reported time being a barrier, but not a limitation, to the successful completion of the bilingual one-page document.
SPM 3: The percent of families who are able to access services for their child with behavioral health needs
Objective 6: Increase the number of children who receive behavioral and mental health services from 67.7% in 2017 to 68.5% by 2020.
Data:
The number of children ages 3-17 who received behavioral and mental health services in 2017-2018 was 56.6%, a decline from the 2017 figure.
Successes:
Oklahoma Family Network (OFN) partnered with multiple agencies and programs that support families and children across the state, including NICU hospital settings. In an effort to reach more underserved and underrepresented families with children, OFN made connections with the Hispanic Community by providing “Book Parties” in Spanish to promote strong connections with their families and good mental health for children 0 to 5 years old. Partners for the Hispanic Community include: The Oklahoma City County Health Department, Variety Health Care Clinics, a number of Autism clinics and the Infant Crisis Services. OFN staff also provided other resources and supports during these events. This Pre-literacy program, promoting infant and early childhood mental health, was available in Spanish and English. During FFY19, OFN staff connected with 585 families and 102 professionals through these events.
OFN continued to partner with National Alliance for Mental Illness (NAMI) Oklahoma and Parents Helping Parents providing connections to supports and resources for families who have children with a mental health concerns/diagnosis. OFN hosted 26 parents for the Children’s Behavioral Health Conference in May 2019 and 20 families for the National Federation of Families Conference for Children’s Mental Health in November 2018. Both conferences allowed families to realize they are not alone in caring for a child with mental health concerns. The families learned skills to employ with their own child as well as to share with other families in their area.
For the past year, OFN has hosted quarterly meetings focusing on reducing risk of child welfare involvement and/or re-unifying families of children with special needs. Transition from mental health facilities to foster families or birth families became a priority need. The meeting participants attempted to propose ways families could identify individuals/groups to provide planned respite opportunities. The meeting participants also brainstormed specific difficult cases, identifying possible supports for youth and their families.
At the Sickle Cell Clinic, all patients met with a psychologist at least one time per year.
All patients also met with a social worker at least twice per year. Referrals for outside services were given as needed.
OITP added multiple layers to their mental health services for NICU families. OITP screened for maternal mood disorders in 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 continued to participate in the Maternal Mood Disorder work group in conjunction with Preparing for a Lifetime.
OITP provided a scrapbooking class where parents gathered and shared NICU experiences, offered tips for other parents, shared pictures of their baby, etc.
Parents became a support system for other NICU families who were experiencing stress and anxiety. The scrapbooking class increased in participation by
approximately 15%.
Oklahoma Family Support 360° Center provided six behavioral trainings during this period. The trainings, called “Lunch and Learn”, were open to the public and free of charge to Center families. Interpretation and translation of materials were provided when the professional was not bilingual and the materials were not in Spanish. Topics included but were not limited to: “Reducing Challenging Behaviors”, “Communication Skills”, and “How Visual Schedules Work”.
A Family Support 360° staff member was invited to be a member of the Health Advisory committee to bring awareness to the Spanish speaking population about suicide prevention. This collaboration with the Oklahoma Department of Mental Health, Integris Hispanic Initiative and the Oklahoma City County Health Department, as well as other organizations, resulted in additional trainings being offered that included “Mental Well-Being for Families” and “Emotional Intelligence.”
Family Partners participated in team evaluation and feedback sessions with 120 families seen in JumpStart Clinic during FFY2019. All families 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) a plan of action, referral recommendations, and resources. Families were encouraged to call back after the appointment with any questions, additional clarifications, or if additional help was needed. The family partner assisted with scheduling a 6-month follow-up with the Developmental-Behavior Pediatrician (DBP) to check-in and allow the DBP to determine if additional assistance was needed in accessing behavioral/mental health, school, medical, and/or other community services. Family Partners’ ability to follow-up with patients on a more routine basis improved over the last fiscal year after staffing issues with this position stabilized.
J.D. McCarty Center continued to provide respite services for children from birth to 21 years of age through a Title V CSHCN partnership. Children in respite care could stay for a total of seven days, one time per year. Seventeen children were served by respite in FFY19. The respite program gave caretakers a temporary break from caregiving and afforded them the opportunity to seek out support for mental health care. J.D. McCarty Center also continued to provide free therapeutic services screenings to any family in Oklahoma that had 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 child being screened, and their family, and identified any correlating services that may be available in the state of Oklahoma to assist the child and/or their family. The therapeutic services screening assessment included the need for any necessary mental health services.
Challenges:
OFN reported difficulty maintaining staff in rural northeast Oklahoma. OFN also reported that there is a shortage of behavioral health and respite providers in rural areas in Oklahoma.
Sickle Cell Clinic was challenged in their ability to follow-up with increased frequency on
the psychology/counseling services provided.
OITP reported that many NICU families have 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.
OITP outgrew their space for the weekly scrapbooking class due to increased participation. They are working with the hospital to identify additional space that is close to the NICU.
Oklahoma Family Support 360° Center reported that mental health has an stigma with the Spanish-speaking families that were served and it was difficult to engage with them on this topic. Spanish-speaking caregivers/parents often misunderstood and were not aware of the signs and symptoms of a mental health condition.
Family Partners reported some difficulty at times on following-up with patients due to household contact information changing.
J.D. McCarty Center reported that their two most prevelant challeges were diffiulties retaining direct care staff to provide care during respite services and a lack of marketing for the program.
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