NPM: Percent of adolescents with and without special health care needs who received services necessary to make transitions to adult health care.

 

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

 

Data:

A survey conducted by Sooner SUCCESS (State Unified Children’s Comprehensive Exemplary Services for Special Needs) and distributed to members of the Oklahoma Chapter of American Academy of Pediatricians found that 78% of practices had a process of health care transition for patients transitioning from pediatrics to adult health care services. However, most of these practices (95%) had procedures that were informal and unstructured. Of those practices that did not have a process, the majority (91%) made referrals for children to adult health care providers when they turn 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 to develop a toolkit for primary care physicians and families. In FFY 2018, Sooner SUCCESS began work on developing and compiling the toolkit.

 

For physicians, readiness assessment tools, diagnoses fact sheets, links to relevant webinars, and yearly reports on health care transition by gottransition.org were compiled and researched for inclusion. Other topics, including provider billing and procedure manuals were also included. Moving forward, the toolkit, tailored to individual clinical settings and the unique pediatric population served, will include: 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. Sooner SUCCESS continued to organize and facilitate a health care transition subcommittee. Several community organizations, including the majority of Oklahoma’s Title V CSHCN contractors, and clinics at the Children’s Hospital and the University of Oklahoma Health Sciences Center (OUHSC) sent representatives to the subcommittee. Based on feedback shared at the quarterly meetings, 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).

 

Challenges:

Sooner SUCCESS noted one critical challenge was the coordination of multiple services that may be medical and/or community-based for adolescents transitioning into adulthood.

 

Family Support 360° found another challenge was the general lack of communication about transition services from the medical providers to families of youth with developmental disabilities.

 

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

 

Data:

Since October 2015, LEAD (Listen.Empower.Advocate.Database.) reports compiled by Sooner SUCCESS have supported 2,330 CSHCNs. Most families (93%) indicated that they have received less assistance with health care transition than other important topics. To get additional input, county coordinators with Sooner SUCCESS asked families to complete a health care transition survey. Of those 351 families that participated, including 95 in FFY2018, it was again found that the majority had not received an adequate amount of information on health care transition.

 

Successes:

Family Support 360° provided individualized information about health care transition to families and youth. In FFY2018, 26% of youth served were of transitional age. Family Support 360° began building relationships with Hispanic adult medical providers to bring additional awareness about transition within the Hispanic/Latino community. Information about transitional services and presentations by transition experts were provided to families at support groups. Some of the topics discussed revolved around guardianship, common diseases affecting Latinas, nutrition programs, and employment.

 

During this reporting period, Oklahoma Family Network (OFN) promoted the Oklahoma Transition Institute (OTI). In addition to helping with registering families for the OTI Conference, OFN facilitated a session on Health Care Transition Tools as well as a session on Community Services and LifeCourse Tools. Additionally, OFN and staff from the Center for Learning and Leadership (CLL) hosted a webinar on LifeCourse Tools for the Oklahoma Transition Council. Since being uploaded, 2,266 Care Notebook and 798 Transition Care Notebook documents have been downloaded from the OFN website.

 

In FFY2018, OFN staff also participated in multiple community and school transition and resources fairs, providing information to over 500 families. In partnership with CLL, OFN provided training to 16 residents. In addition, OFN served as a host site for the Baylor Healthcare Transition Conference.

 

Challenges:

Some challenges noted by Family Support 360° were the language barriers for families going through health care transition, the lack of communication from medical providers to families about transitioning to adult health care, and the lack of medical providers willing to take on children served by Family Support 360° as patients.

 

For OFN, challenges included helping families recognize how quickly transition to adult services happens and encouraging families to develop a health care transition vision and plan.

 

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 2017 National Survey of Children’s Health found that 22.5% of Oklahoma adolescents with special health care needs, aged 12 to 17 years, received the services necessary for making the transition to adulthood care. This rate is higher than the national average (17.0%).

 

Successes:

The Sickle Cell Clinic provided a formal transition program for youth aged 12 to 21 years. More specifically, patients were provided with a designated transition coordinator who biannually met with patients at their comprehensive clinic visits and facilitated transition to an adult care provider. The facilitation efforts included a transition summary provided to adult care provider, scheduling the first appointment with the new provider, and identifying and scheduling the first appointment with a primary care provider, if needed.

 

Additionally, the Sickle Cell Clinic provided transition-age patients one-on-one assistance with navigating insurance and provider appointments, a social worker who met with all patients at their sickle cell comprehensive clinic visits, and a psychologist who was available to all patients with a screening conducted at least once a year. Education was also provided to medical students, Residents, and Fellows regarding the unique vulnerabilities of the sickle cell population.

 

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.

 

Challenges:

The Sickle Cell Clinic reports one challenge was assuring that patients attend necessary appointments.

 

According to OFN, the biggest barrier for OWFA has been working with multiple agencies and going through the Institutional Review Board process.

 

Objective 4: 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 own programs. Family Support 360° served 22 new Spanish-speaking families in FFY2018. Additionally, the partner held two Applied Behavioral Trainings with Spanish interpretation that served 30 caregivers. The Family Support 360° also hosted a CPR (Cardiopulmonary Resuscitation) training instructed in Spanish for 10 families enrolled at the Center. Finally, at the 13th Annual Oklahoma Transition Institute, Family Support 360° supported the attendance of five parents and family members of children who are in the process of school transition. This year the Institute offered a session in Spanish for family members.

 

Successes:

Among Hispanic families, Family Support 360° continued to promote youth independence by providing opportunities to attend the Youth Leadership Forum (YLF). Additionally, every family enrolled with Family Support 360° whose child is transition-aged was provided with health care transition language in Spanish from Got Transition.

 

In partnership with Pervasive Parenting, Oklahoma Family Network (OFN) provided Young Adult Health Transition Training in rural LeFlore County to increase awareness and provide tips and tools for a successful health care transition.

 

Oklahoma Infant Transition Program (OITP) identified and developed resources for adolescent mothers. OITP showed these adolescents how to use family support systems and how to advocate for themselves and their baby. OITP provided mothers with services along with education and counseling about transitioning from hospital-based care to home. Additionally, OITP continued to be a member of the Children’s Health Group for the State of Oklahoma which addressed the disparity of services for children with special health care needs statewide in at least one quarterly meeting.

 

Challenges:

According to Family Support 360°, Hispanic families were often unaware of the services and tools that support children and youth at transition age.

 

OITP reported that they assisted multiple adolescent mothers who delivered infants at OU Medical Center in FFY2018. Historically, about 25% of these young mothers give birth to a baby who is admitted to neonatal intensive care. For these young adolescents, simultaneously making the developmental transition into adulthood and having a medically fragile baby added immense stress and anxiety, impacting their mental and physical wellbeing.

 

 

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

 

Objective 5: Increase the number of children who receive behavioral and mental health services from 67.7% in 2017 to 68.5% by 2020.

 

Data:

The 2017 National Survey of Children’s Health found that 67.7% of Oklahoma children with special health care needs and a mental and/or behavioral condition, aged 3 to 17 years, received treatment or counseling. This rate is higher than the national average (57.3%) and higher than the 2016 rate of 51.9%. The 2020 goal has been adjusted to reflect the 2017 rate.

 

Successes:

Oklahoma Infant Transition Program (OITP), funded in part with Title V CSHCN funds, successfully began a neonatal intensive care unit (NICU) mom’s support group that was staffed with a LCSW and a family advocate. This was a psychoeducational group where mothers shared their experiences in a non-threatening environment. OITP referred mothers needing additional counseling to an outpatient psychologist. At each of the family activities, OITP educated families and helped them to prepare for the transition home and what to expect once discharged.

 

Additonally, OITP’s patient base was consistent over the past ten years with services given to approximately 330 families, meaning about 25% of the University of Oklahoma Medical Center’s NICU population received services from OITP. OITP staff gave parents tours of labor and delivery and the NICU prior to their baby’s delivery. OITP also offered resources and education about going home after the baby was born and how the family could cope with these changes.

 

Moreover, OITP families assisted families with transition for months after discharge from the NICU. OITP reached out to these families in the Transition Clinic. In this clinic, OITP confirmed physician appointments and assured families had needed infant supplies, including diapers and formula. OITP referred to community resources, if needed. The physicians followed the infant’s growth curve and nutritional needs. Also, for those babies on oxygen, OITP discussed how to wean off the use of oxygen. OITP screened for depression and anxiety among mothers at 14 days after admission to the NICU and 1 month after discharge as well as 1 and 2 years post-discharge. OITP staff used this opportunity to educate mothers on the continuation of transitioning home and additional resources. Staff made follow-up phone calls at 72 hours post-discharge and again in a couple of weeks. These phone calls focused on family needs, baby needs, and maternal well-being. A resource kit was developed for families needing mental health care. OITP continued to participate in the Maternal Mood Disorder Workgroup for Preparing for a Lifetime and the Fetal Infant Mortality Review Board.

 

OITP hosted multiple weekly family activities which included a family lunch where local businesses or community resources were invited to speak to the NICU families. Critical information was shared to assist NICU parents with the transition to a medical home. The speaker topics focused on transitioning home and parents shared what they have learned. The OITP scrap booking class was a relaxed environment where parents gathered and shared NICU experiences, tips for other parents, or just pictures of their baby. In FFY2018, parent activity attendance nearly doubled. OITP increased participation in scrapbooking by approximately 42% and the parent lunch by 43%. The activities helped increase awareness of NICU families regarding services available to families of CYSHCN.

 

Oklahoma Family Network (OFN) partnered with multiple agencies and programs who support families and children around the Oklahoma City metro and in other regions of the state, including NICU hospital settings. In an effort to reach more underserved and underrepresented families, OFN made connections with the Hispanic Community by providing “Book Parties” in Spanish to promote mental health for children 0 to 5 years old. Partners for the Hispanic Community include the Oklahoma City County Health Department and Variety Health Care clinics. This pre-literacy program was available in Spanish and English. FFY2018 was just the start of this activity which served 69 families.

 

OFN was a partner organization with National Alliance for Mental Illness (NAMI) OK and Parents Helping Parents. Connections to supports and resources for families who have children with a mental health concern(s)/diagnosis were provided.

 

OFN was also a stakeholder in the START (Systemic, Therapeutic, Assessment, Resources, and Treatment) Pilot Project for Oklahoma beginning in 2018. Through this project, Oklahoma partnered with the University of New Hampshire’s Institute on Disability to study mental health and crisis services for people who have an intellectual or developmental disability (ID/DD) in Oklahoma. OFN assisted with the online survey and focus groups as well as with identifying families for interviews.

 

OFN hosted five regional behavioral health Facebook pages where resources and information was shared to over 1,000 followers in addition to the 2,251 followers of the OFN Facebook page.

 

Sooner SUCCESS continued to partner with the Oklahoma Developmental Disabilities Council on a program called Supporting Oklahoma Parents with Disabilities. The program is in its fourth year of the grant. The goal of the program remained to assist the family before Child Welfare involvement, if possible. Parents with Disabilities Resource Teams (PwDRT) worked by helping professionals understand the nature of the parent’s disability as well as discussed how services could be adapted to better meet the family’s unique needs. PwDRT’s recommended both disability and community resources that could benefit the family. To date, over 1,000 providers have been trained, some with introductory training and others with more in-depth training. Supporting Oklahoma Parents with Disabilities continued its expansion of PwDRT’s throughout Oklahoma as well as training of additional assessment providers.

 

Family Support 360°, with the support of a private clinic, Advanced Behavioral Solutions, facilitated, translated, and interpreted trainings about behavioral teaching strategies to Spanish-speaking families who have children with autism or/and developmental  disabilities and behavioral health needs. The Family Support 360° Center provided scholarships for Spanish-speaking families to attend the Autism Conference. They also offered families trainings and activities with Spanish translation and interpretation. Family Support 360° partnered with the Oklahoma Department of Mental Health and Substance Abuse Services to provide trainings in Spanish for families on how to access needed services for children with behavioral health needs.

 

The J.D. McCarty Center provided respite services for children aged birth to 21 years. By giving families a temporary break from caregiving, the respite program was beneficial to the mental health of caregivers. Additionally, J.D. McCarty provided 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. During the therapeutic services screenings, J.D. McCarty identified the needs of the child and their family as well as any relevant services that may be available in the state, including mental health services.

 

Family Partners participated in team evaluation and feedback sessions with 77 families seen from October 2017-September 2018. 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 six-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 community services.

 

At the Sickle Cell Clinic, a psychologist was available to all patients with screening at least one a year.

 

Challenges:

For some families served by OITP, it was not possible to provide follow-up services because phone numbers had been changed or disconnected and/or the families had moved without a forwarding address. Additionally, some women viewed mental health as a stigma and refused to be screened or informed about mental health resources and services.

 

OFN noted one challenge was families having inadequate access to services and supports, especially those with a dual diagnosis of mental health and intellectual disability.

 

Family Support 360° continued to report language barriers for some families. In particular, there remained a lack of bilingual behavioral specialists as well as materials in Spanish for families who have children with behavioral health needs.

 

J.D. McCarty indicated that their most prevelant challege was the public being unaware of the available services and resources provided at the J.D. McCarty Center.

 

Family Partners had an on-going issue with staffing. The dedicated Family Partner position was part-time. This posed challenges because of time constraints and other responsibilities. Additionally, there was no dedicated case manager position to follow-up with families.