Children and Youth with Special Health Care Needs (CYSHCN) Population in the State

Nearly 224,000 (17.5%) of Wisconsin children have a special health care need. Among CYSHCN, nearly 12% of children, ages 6-17 years, missed 11 or more days of school due to illness and close to 1 in 5 families of CYSHCN report that a family member had to cut back on work hours or stop working because of their child's health or health conditions. Additionally, nearly 42% of families of CYSHCN reported that their current insurance is inadequate and/or they had gap in insurance coverage in past year. Furthermore, about 1 in 4 families of CYSHCN report spending $1,000 or more each year for out-of-pocket medical expenses. Only 9.2% of CYSHCN ages 0 through 17, receive care in a well-functioning system. Source: 2017-2018 National Survey of Children's Health, Data Resource Center for Child and Adolescent Health website, accessed 2-14-20.

 

CYSHCN Program Infrastructure, Financing, and Roles

In 2000, the Wisconsin CYSHCN Program made significant changes to its structure and administration in order to better support an integrated systems-building approach to its work. The CYSHCN Program discontinued its provision of direct health services and its payment for direct health services provided by others. This change coincided with expansions in Medicaid coverage for children. The Title V Program does not receive additional state funds to provide direct health services, care coordination services, transportation or other enabling services. Title V funds were redirected to support five Regional Centers for CYSHCN, one in each of the five DHS regions. The Regional Centers provide information, referral, and follow-up services for families and providers along with outreach, education, and training. The Title V Program partners with other public health programs (WIC, BadgerCare Plus, Wisconsin Well Woman Program) to support the Wisconsin Women’s Health Foundation who administer the WellBadger Resource Center, which includes a phone line (teletypewriter and language line), website, chat, and email functionality for parents and providers to access resources and information.

 

The Regional Centers and WellBadger provide a regional and statewide structure that supports the integrated service systems at the community level. Beginning in 2010, the CYSHCN Program established “hubs of expertise” to inform planning for select NPMs and CYSHCN system improvement efforts. Family Voices of Wisconsin supports family leadership, CYSHCN advocacy, public policy, family education and training. Parent-to-Parent of Wisconsin provides individual parent matching support. The Wisconsin Medical Home Initiative located at Children’s Health Alliance of Wisconsin promotes Medical Home implementation for providers and families including grants to support quality improvement at the health practice/health system level. ABC for Health, Inc. provides health benefits assistance in partnership with the Regional Centers and supports health benefits advocacy for families with CYSHCN. The Youth Health Transition Initiative provides outreach, education, and training including a Learning Community, and onsite training. The Genetics Systems Integration hub integrates genetics with public health systems in order to support individuals with genetic conditions. These form the CYSHCN Collaborators Network (the Network) that works together to advance systems of care for CYSHCN in addition to NPM 11 and NPM 12 by implementing strategies at the individual (youth and family), community, health practice/health system, and state level.

 

As described in the Health Care Delivery System (Section iii.E.2.b.iii), the Bureau of Children’s Long Term Support Services within the Division of Medicaid Services administers the Katie Beckett Program, Birth to 3 Program (Part C Early Intervention), the Children’s Long-Term Support Waiver, and the Children’s Community Options Program. This Waiver Program provides § 1915(c) waiver services for eligible children from birth up to 22 years. The approved § 1915(c) waiver permits the DHS to provide an array of community-based services and supports to enable children, who would otherwise require institutionalization, to remain in their home and community under the care of their family or guardians. The approved waiver period is effective April 1, 2017 through December 31, 2021. The CYSHCN Medical Director is a member of the Children’s Long-Term Support Advisory Council along with Family Voices. The CYSHCN Statewide Coordinator is a member of the Bureau of Children’s Long-Term Support Services’ ad hoc work groups looking at access and intake. As of December 31, 2019 there were 10,268 children enrolled in the Children’s Long-Term Support waiver program and 1,006 children on waiting lists. In September 2017, Medicaid began funding care coordination for children with medical complexity enrolled in the Complex Care Programs at Children’s Wisconsin and UW American Family Children’s Hospital. Beginning in November 2019 this benefit was extended to include the Marshfield Children’s Hospital. Children’s Wisconsin and American Family Children’s Hospital Complex Care Programs are participating in the HRSA-funded Children with Medical Complexity Collaborative Improvement and Innovation Network (CoIIN), now in Year 3. With respect to birth defects and newborn screening, limited state funding ($95,000) are provided to the Family Health Section to support the Wisconsin Birth Defect Prevention and Surveillance Program, including its registry. Fees generated by the Newborn Screening blood card (currently $109 per birth and approximately $7,000,000 per year) support the Newborn Screening Program, also administered in the Family Health Section, including the provision of nutrition products and support for diagnostic centers.

 

As noted earlier, the role of the Title V Program is not one of provider or payer. Instead, the Title V Program’s roles, in partnership with the CYSHCN Network, are to provide vision, lead or facilitate systems quality improvement for CYSHCN that includes strategic partnerships, utilize data/evaluation to inform strategic decisions, and to build and sustain workforce capacity, including family leadership with health equity as an underlying goal. The CYSHCN Program meets regularly with Network Directors (Regional Centers and hubs of expertise), Regional Center Directors, Quality Improvement Project Team Integrated Supports, and REDCap/Data Work Groups to assure coordination/alignment of work across the Network. Program data are collected quarterly and presented at the Network Directors meetings.

 

National Performance Measure 11: Percent of children with special health care needs having a medical home.

 

Overall, 42.8% of Wisconsin CYSHCN have a Medical Home. A Medical Home is defined as accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective. The percentage of CYSHCN with a Medical Home is lower for children who are: low-income; with public insurance only; with an emotional, behavioral, or developmental issue requiring treatment; with more complex health care needs. While greater than the nationwide average (18.9%), only 20.5% of Wisconsin adolescents with special health care needs ages 12 through 17 received services necessary to make transitions to adult health care (National Survey of Children’s Health 2017-2018). The Wisconsin Medical Home Initiative was identified as the lead for Title V Medical Home-related activities in 2019 in partnership with the Title V Program and the Network.

1. Promote concepts of medical home using a unified definition, set of tools, and messages. The Wisconsin State Medical Home Plan continued to guide Medical Home implementation in 2019. Monthly Medical Home Minute e-newsletters were sent to an average of 1,223 recipients per e-newsletter, with an average open rate of 18.5%. The 2019 open rate was up from 16.7% in 2018, and 13.7% in 2017, with the highest open rate (21%) in June featuring community resources.

 

The Medical Home brochure was promoted on partnering agency websites, disseminated at 26 trainings with 272 attendees (reaching 40 clinics/agencies in 13 counties), included in the Wisconsin Medical Home Initiative’s Medical Home Minute, and 315 copies were requested from DHS publications. A new Children’s Health Alliance of Wisconsin website was launched March 19, 2019. Updates were shared via the Medical Home Minute, News on the Nines (a newsletter sent monthly to the Network), social media posts, and through Children’s Health Alliance of Wisconsin newsletters. Newly developed web pages specific to Medical Home provided information and resources for both professionals and families. Website pages include information on Medical Home, Developmental Screening, Mental Health Screening, Care Coordination, Family Engagement and Learning Communities. The most frequently visited pages in 2019 included the Medical Home main page (630 views), Learning Communities (431 views), Developmental Screening (318 views) and Medical Home Initiative page (238 views).

 

For workforce development activities, the Wisconsin Medical Home Initiative conducted 26 pediatric primary care team trainings (+10 since 2018) throughout the five public health regions, with a total attendance of 272. Of these attendees, 135 claimed Continuing Medical Education credit for their participation. The 26 trainings reached 40 clinics/agencies (26 health clinics, four health departments, multiple school districts, and the Birth to 3 Program). Seventy-five percent (75%) of Medical Home mental health trainings were conducted by Wisconsin Medical Home Initiative in collaboration with the Child Psychiatry Consultation Program, which provides consultation, education, and referral support to enrolled primary care providers caring for children and adolescents with behavioral health concerns. Specific to the mental health training, 17 pre-training assessments, two post-assessments, and 60 training evaluations were completed: 98% of respondents indicated that their knowledge of pediatric mental health screening increased; 98% of respondents indicated that their knowledge of recommended referrals and resources for children with concerning screening results increased; three clinics (100%) enrolled and are utilizing the Child Psychiatry Consultation Program; 100% of sites are using mental health screening tools at AAP-recommended ages. In addition, Medical Home competencies to be used in 2020 by the Regional Center staff were developed in collaboration with the Youth Health Transition Initiative. Regional Center leaders were asked to provide an initial review, and the competency self-assessment was sent to Regional Center staff in January 2020.

2. Advance understanding of the importance of Medical Home/care coordination within and across systems. Care coordination is a key strategy to advance Medical Home implementation. Families are key partners in this effort. Activities included outreach and education for families regarding partnering with their child’s doctor, care mapping, care coordination, and accessing benefits by Family Voices and the Regional Centers. Trainings were promoted by social media, email alerts, written materials and websites. The number of views for each online training were: Coordinating Your Child’s Health Care (81 views); Did You Know, Now You Know (155 views); Medicaid Made Easy (32 views). The availability of online trainings was identified as a mechanism to reach more families; however, the training evaluation completion rate for online participants was lower than in-person participants. This poses a challenge to understanding if the training is meeting participants’ needs and if there is an increase in knowledge. Family Voices presented Coordinating Your Child’s Health Care curriculum during a three-hour skill building session at AMCHP in March 2019. This training was also tailored to the needs of Indigenous families based on feedback from key informant interviews. In general, Medical Home trainings are underutilized. Specifically, Partnering with Your Child’s Doctor (an introduction to Medical Home concepts) and Coordinating Your Child’s Health Care (an online training highlighting the use of the Shared Plan of Care). The Wisconsin Medical Home Initiative partnered with a tribal health center to evaluate the content of Partnering with your Child’s Doctor to better understand why it is not being used by tribal health centers and others.

In 2019, Family Voices of Wisconsin created a Medicaid Made Easy training that was piloted at the Circles of Life Conference, and delivered in Spanish to a Latinx Family Group in Madison (15 participants: 12 families and 3 professionals).

 

3. Support care coordination and continuous quality improvement with healthcare teams and healthcare systems. In 2019, eight tribal health centers (one withdrew midyear because of staff departures) and seven practice sites selected through a competitive process to participate in the Advancing Family-Centered Care Coordination Learning Community quality improvement Project lead by the Wisconsin Medical Home Initiative.

All sites were asked to implement a Shared Plan of Care consistent with the Lucile Packard Foundation's “Achieving a Shared Plan of Care” for at least 10 children. Three elements were required: family strengths and preferences, a negotiated plan of action, and a medical summary. Quality improvement teams participated in three Learning Community calls (LCC) with attendance ranging from 80% to 86% and one all-day grantee meeting. Fourteen (93%) clinical teams participated in the grantee meeting. Regional Center partners participated on initial team calls, all LCC, individual team meetings with grantees and the all-day grantee meeting. Overall, 94% of participants indicated they were satisfied or highly satisfied with the meeting quality. Positive feedback from the evaluations included appreciation of having more time to collaborate with other groups and learn about other’s projects. Teams were asked to conduct tests of change using Plan, Do, Study, Act (PDSA). PDSAs were submitted quarterly online using Life QI – a web-based platform – or by paper. PDSAs were shared with Regional Center staff to increase awareness of clinic efforts. Regional Centers helped connect clinics to additional community supports and resources.

 

In addition, the clinical practice teams (physician, nurse) and families piloting the Shared Plan of Care reported quarterly on a set of measures listed above. Review of feedback on quarterly family surveys (148 responses received, 85% indicated they have a Shared Plan of Care) highlights that families agree the Shared Plan of Care helps make sure more of their child’s needs are met. By the end of the fourth quarter, 96% of the families agreed or strongly agreed with an average of 87% over the year.

Clinical teams were required to include family members as part of the quality improvement team. By the end of 2019, 85% of the teams indicated they had an identified family representative member on their team, but only 30% of team meetings included a family member. A few teams were successful working with family partners, yet many still struggled. Some comments included: “Family representatives helped keep the focus of our quality improvement work patient-centered” while others shared “This quarter we had limited contact with our family representatives due to changes in social/family status.” In an effort to support family partners on the quality improvement team, three Family Representative Calls were held. Calls were facilitated by Family Voices. Two to four family members participated per call. The Wisconsin Medical Home Initiative provided gift cards to those families who participated. A welcome guide that supports the role of the family as part of the quality improvement team was shared with teams. However, participation of families remained challenging and reinforced the need to continue to seek ways to support family engagement in this systems level work.

 

Families shared that the Shared Plan of Care was a beneficial tool to share at camps, schools, Individualized Education Program meetings, emergency department visits, hospitalizations, and hospice. Parents or caregivers indicated that the Shared Plan of Care was an organized resource that helped educate and inform themselves and/or their child, while also minimizing how much explanation parents needed to provide when interacting with those who do not know their child. By the end of the fourth quarter, 92% of the families agreed or strongly agreed with an average of 82% for the year that a Shared Plan of Care helped them tell other service providers about their child’s needs. The benefit is highlighted

by families: “It has been extremely beneficial at school. I give a copy to the office, nurse’s office and all her teachers and coaches.” Others shared “It has made the process of transitioning to adult care, guardianship, IRIS program much easier” and “[The Shared Plan of Care] helped streamline ER visits and planned surgical admissions to hospital – I felt that helped keep everyone on the same and reduce unnecessary interventions to my child.”

 

Review of feedback on quarterly care team surveys (14 teams total, average participation rate of 95%) highlights both challenges and learned lessons from the care teams’ perspective on how using the

Shared Plan of Care has impacted the care they provide as well as how they interact with families. Teams reported improved communication with families, with health care colleagues, and with community partners; the Shared Plan of Care was identified as a structured way to share and communicate a child’s information; and using the Shared Plan of Care assisted with making care more efficient and patient-centered. Teams reflected the quality improvement grant provided opportunities for identifying and better understanding family needs and goals. Clinic: “By having a Shared Plan of Care, our organization has been able to communicate the families’ high priority items more efficiently to the healthcare team. It allows for more seamless communication between all members of the care team.” Another team shared “Other specialties appreciate the holistic approach to the care. Outside services/programs appreciate the level of detail. Parents appreciate having their medical story in one document.”

Six teams conducted tracking of care coordination activities in May 2019 using the Care Coordination Measurement Tool for teams. Results indicated that of the 159 encounters, the top area of focus was clinical/medical management (66%), and the top care coordination need was coordination of services: schools, agencies, payers (66%). The top activity performed was chart review (27%). Practices reported unnecessary visits to the pediatric office/clinic were prevented (17%) and positive outcomes, which occurred as a result of coordination included meeting family’s needs, questions, and concerns (35%). The average time spent on a care coordination encounter was approximately 13 minutes (range less than 5 minutes to 120 minutes). The 2019 Shared Plan of Care project materials are available on the Children’s Health Alliance of Wisconsin website.

 

The Title V Program also participates in the Children with Medical Complexity Collaborative Improvement and Innovation Network (CoIIN). Children’s Wisconsin serves as the project lead and fiscal agent in partnership with the American Family Children’s Hospital. The Title V Program supports the participation of Family Voices, Southern and Southeastern Regional Centers, Title V Program staff, and Title V Quality Improvement Program Director who participates on biweekly calls with the practice teams along with a day-long team retreat. In 2019, team work was focused on increasing the number of children referred to the Regional Centers and enrolled in Children’s Long-Term Support waivers among those enrolled in the Complex Care Programs at Children’s Wisconsin and the American Family Children’s Hospital along with work to improve Shared Plan of Care goals to better reflect those of the family. A welcome letter to the Regional Center in English and Spanish was created to be used by the clinical teams when making a Regional Center referral. Additionally, there was representation from the Children’s Bureau in the Division of Medicaid Services on the Children with Medical Complexity CoIIN team.

4. Monitor implementation and expansion of the Child Psychiatry Consultation Program through a contract to assure that primary care providers have increased access to child and adolescent psychologists/psychiatrists for psychiatric consultation. The Title V Program continued to support the Medical College of Wisconsin to implement the Child Psychiatry Consultation Program. In the Wisconsin Biennial 2019-2021 budget, the Child Psychiatry Consultation Program received increased funding by $500,000 to spread to at least one or more additional DHS regions. The additional funding will start in year 2020-2021. Total yearly funding for this program is now $1,500,000. This program supports the behavioral health needs of children and families by providing: consultation to primary care providers regarding diagnosis and management options for children and adolescents with mental health problems; referral support system for pediatric patients to other mental health professionals and community resources as identified and needed; and education and training in mental health issues for primary care providers. Since program inception through December 31, 2019, 198 clinics and 950 providers were enrolled and 3627 consults were provided to enrolled providers.

 

Since receiving a five year grant, Pediatric Mental Health Care Access Program, from the HRSA Maternal Child Health Bureau in October 2018, the Wisconsin DHS expanded Child Psychiatry Consultation Program services to additional primary care providers in southern and southwestern Wisconsin. A new regional Child Psychiatry Consultation Program hub in this area is in negotiation stages. As of September 29, 2019, 14 providers were enrolled and seven consults were completed. For more information on the Child Psychiatry Consultation Program see the Child Health Domain narrative.

5. Provide easily accessible referral resource information to families and providers; link families to needed supports and services. Families and providers who contact the five Regional Centers receive direct assistance and referrals to supports and services. In 2019, 1,312 families contacted the Regional Centers (23% increase from 2018, 85% increase from 2017) from 67 of 72 counties. These families received 1,738 referrals for services, which was up from 1,304 in 2018 (33% increase from 2018, 50% increase from 2017).

 

The largest volume of calls are from counties nearest a Regional Center and areas of higher population size. This information indicates the continued need for Regional Center to conduct outreach to all counties in a region. The top sources of referrals to the Regional Centers remains health care providers, but includes persons who had called before, and county/community agencies.

The most common referrals made by the Regional Centers were for Children’s Long-Term Support services, behavioral health, and health benefits.

 

Linking families to needed supports and services remains a challenge. Only 49% of referrals resulted in receiving services; 18% of referrals were awaiting an eligibility determination; 11% of referrals demonstrated an unmet need; and 9% of referrals were lost to follow up.

 

The referrals with the highest unmet needs remain Children’s Long-Term Support waiver services and behavioral/mental health. The Regional Centers also provided informational calls and consultations to community providers.

In addition, the Regional Centers conducted promotional activities to increase awareness throughout the state. The map in Figure 12 shows the local and county-level outreach efforts. There were also 35 statewide outreach activities and 46 region-wide.

 

The WellBadger Resource Center provides a phone line, a searchable online directory and website for parents and providers including the ability to live chat and exchange text messages. WellBadger is part of the Network and works in collaboration with the Regional Centers to assure families and providers easy access to information and referral services. WellBadger received 312 (20% of total contacts) contacts related to CYSHCN resulting in 454 referrals with 21% to Birth to 3, 12% to Regional Centers, 11% to parent support, and 9% to Children’s Long-Term Support; 85% of contacts agreed to follow-up; among the 217 reached (57%), 143 were successfully engaged/enrolled in services.

 

Parent-to-Parent of Wisconsin received 297 referrals with 31% from parents themselves. They made 221 parent-to -parent matches (48% of matches were for mental health), which means that each parent in a match received a check in call after one week, and an evaluative call at approximately six weeks following matching. Parent-to-Parent of Wisconsin conducted 7 trainings that resulted in 44 newly trained support parents. In 2019, Family Voices published two new fact sheets – Self Determination and Children with Disabilities and Explaining and Exploring Medicaid. They also updated five existing fact sheets and assured that all fact sheets were translated into Spanish. They utilize a Materials Review Committee comprised of diverse family members to review fact sheets and newsletters to ensure that written materials are culturally and linguistically appropriate and accessible. 800 hard copy fact sheets were distributed, and there were 3,284 unique visits to the learning page on their website. There were 4,939 unique, new visitors to the website.

 

With regard to health benefits, the Title V Program supports ABC for Health to accept referrals from the Regional Centers to assist with complex health benefits issues, and to provide training and technical assistance to the Network related to health benefits and insurance access. ABC for Health provided health benefits assistance to 298 CYSHCN. Annually, ABC for Health conducts a health benefits competency survey of the Network that is used to determine training needs. The survey results showed that the Network excels in advocacy skills in addition to working with professionals and families while maintaining cultural and linguistic mindfulness. The results indicated opportunities to train the Network regarding insurance and services available to the Indigenous population. In 2019, ABC for Health had 811 video views, a watch time of 7,895 hours, and created 125 new case videos on their website and ABC for Health YouTube channel.

 

During 2019 the Genetics System Integration hub coordinated monthly meetings with Title V Program CYSHCN staff. Based on feedback from Genetics Advisory Committee members, meetings changed to virtual communication (email newsletters) and in-person meetings with a virtual option. These forms of communication served to update the members on genetics-related activities in the state, allowed members to participate in the Title V needs assessment, the state response to the Midwest Genetics Network invitations and activities, and for members to advise other activities of the Genetics System Integration hub. An ongoing challenge has been to recruit and maintain parent participation in the Genetics Advisory Committee. This is being re-examined in 2020 when the Genetics System Integration hub will be completing a Community Engagement Assessment. The Genetics System Integration hub participates in the Midwest Genetics Network and its three work groups: Plain Community (formerly Health Equity), Tele-genetics, and Provider Education. Three providers attended the Midwest Genetics Network telehealth education event in May 2019 (online coursework and meeting in Indiana). The Genetics System Integration completed a tele-genetics quality improvement project at the UW Waisman Center. A second Midwest Genetics Network mini-grant was awarded to determine if Plain communities would be receptive to receiving consultations regarding genetics and follow-up via telehealth working with the Special Children’s Clinic in La Farge, Wisconsin. This project will be completed in May 2020. Four Wisconsin delegates involved in this work along with Title V staff attended the October 2019 Midwest Genetics Network meeting. The Genetics System Integration with the Wisconsin Newborn Screening Education Subcommittee added state specific content to material from a Midwest Genetics Network education webinar on sharing newborn screening results. This online Continuing Medical Education module will be available in early 2020 through the UW Office of Continuing Education. In addition, the Genetics System Integration website serves as an information resource regarding genetics systems for Title V Programs. The website had 2,667 users (2,659 new), 3,004 sessions (new and returning users), and 4,781 page views. Genetics System Integration hub staff collaborated with the Wisconsin Genetic Counselors Association, Prevention Genetics and the Marshfield Clinics to plan and implement the Genetics Exchange with 94 attending (117 registered). The meeting offered 0.475 Category 1 Continuing Education Units for genetic counselors. Evaluations indicated attendees achieved the learning objectives.

 

In early 2019, the CYSHCN staff, along with funded Network partners, were part of the Wisconsin Care Integration Initiative grant of the UW Waisman Center serving on both its advisory team and larger Learn the Signs Act Early state team. A focus of this work is to improve linkage to services for children with autism spectrum disorder and their families. Family navigators identified regional differences and barriers to access such as rural versus urban, access to providers, wait times, and language.

 

6. Assure family, youth, and consumer participation in Medical Home policy development, program planning and quality improvement. Family Voices, Parent-to-Parent of Wisconsin, Regional Centers, Youth Health Transition Initiative, Wisconsin Medical Home Initiative, WellBadger, ABC for Health, and the Title V Program created a Family Engagement and Leadership matrix for the Network, which clarified and defined terms and activities. This matrix was organized under the “identify, connect, support, and sustain” framework first created in 2015 by the Network. Activities are implemented at the individual family, community (Regional Centers), and state level. The Network continued to focus its improvement efforts in family engagement during 2019 on the areas of identify and connect. In 2019, there were 800 contacts with parents through trainings or Parent-to-Parent of Wisconsin. The family questionnaire was completed by 169 families that Regional Centers were able to reach out to. Since 2018, Family Voices has been a partner in the Family Action Network, a collaborative activity between the Board for People with Developmental Disabilities, UW Waisman Center, and Disability Rights Wisconsin. There were a total of 1,965 people subscribed to the Family Action Network at the end of 2019 and a 2% net increase over 2018. There were 53 notices for leadership, education, training and grant opportunities that were distributed during the past year. Increasingly, family members are responding to postings with requests for additional information and/or support to participate in an activity. This is the only family-oriented, cross-disability listserv of its type in Wisconsin. In addition, Family Voices distributes a “Family-2-Family” quarterly newsletter via print or electronic means. In 2019, there were 2,391 individuals and organizations in the database that receive the newsletter. This newsletter is also circulated via a stakeholder listserv and in hard copy, reaching an additional 2,500 people directly. Family Voices continues work with the Survival Coalition to advocate for the elimination of the waitlist for Children’s Long-Term Support waiver services and improved access to services for families.

 

Title V Program staff, including the MCH Health Equity Consultant, came together with Family Voices and youth representatives to address enhancement of family, youth and community engagement. This team participated in an MCH National Workforce Development Center project with the aim: By December 31, 2025, strengthen family, youth, and community member engagement within all Title V Programs because programs that respond to participants’ experiences are more effective. The core team developed the Community Engagement Assessment Tool consisting of 14 indicators to engage families, youth and community members in programmatic efforts. The team recruited pilot sites for 2019 to select one indicator from this tool to address and to develop an improvement action plan for the indicator. Family Voices and the Northern Regional Center served as pilot sites. They completed the Community Engagement Assessment Tool and created an action plan to enhance engagement with a focus on one of the 14 indicators. The tool was then revised based on feedback from the 2019 pilot sites. In 2020, use of the Community Engagement Assessment Tool was extended to all CYSHCN contracts. In addition, as part of the 2020 MCH Needs Assessment, the Mobilizing for Action through Planning and Partnerships framework was selected because it focuses on receiving community feedback and promoting health equity. More information can be found in the Five Year Needs Assessment Summary narrative.

 

National Performance Measure 12: Percent of adolescents with special health care needs who received services necessary to make transitions to adult health care.

 

Too few adolescents ages 12 through 17 receive the services and supports necessary to transition to adult health care. The Wisconsin Youth Health Transition Initiative was identified as the lead for Title V Youth Health Transition-related activities in 2019, in partnership with the Title V Program and the CYSHCN Network.

 

In addition to the strategies below, the Title V Program is committed to partnering with others who address health with adolescents. In 2019, the Title V Program’s CYSHCN staff convened a meeting of stakeholders invested in adolescent health from a broad array of programs and funding sources. This group identified that because of institutional biases and power structures, youth experience deep health disparities. Wisconsin does NOT have a shared vision and collaborative approach to ensure all young people can thrive in health care, school and community environments. This collaboration of programs applied and were accepted into the National MCH Workforce Development Center to be included in their 2020 cohort.

 

1. Develop and disseminate consistent strategies and tools with common messaging and promotion of best practices in transition planning. To promote common messaging and best practices, the websites for the Wisconsin Youth Health Transition Initiative and Regional Centers link to the Got Transition website. In 2019, there were 4,168 page views and 1,449 new users of the Wisconsin Youth Health Transition Initiative website. The Youth Health Transition Initiative also maintained a listserv that has grown to 495 members. In 2019, 16 updates were sent via the listserv. The Health Transition Facebook page had 30 new postings in 2019. The most engaged top five posts from 2019 were:

 

1. PACER Center video series: Preparing for Adulthood: Taking Charge of My Own Health Care (6/24/29)

 

2. Got Transition and AAP release of 2019 Coding Guide (3/4/19)

 

3. PATCH Dane Workshop (1/11/19)

 

4. Results of Parent-to-Parent of Wisconsin Survey on Supported Decision Making (8/28/19)

 

5. Pathways Comics (3/25/19)

 

The Youth Health Transition Initiative maintains regular contact with the Regional Centers and the Network through a variety of methods including participation in quarterly Network Directors meetings, Regional Center calls, and quarterly transition specific communications. The Regional Centers discussed transition concepts with 47% of information and referral contacts from families seeking information about their children ages 12 through 26 years old.

 

The Title V MCH Adolescent Health Coordinator collaborated with the Youth Health Transition Initiative and the Wisconsin PATCH Program to include Youth Health Transition within PATCH messaging. PATCH trains youth across the state to be active partners in their own health care. The Youth Health Transition Initiative encouraged PATCH to modify their message so it can also appeal to youth with special health care needs.

 

The Youth Health Transition Initiative also collaborated with family advisors to develop a brochure that is family and youth friendly to be distributed by the Regional Centers at conferences and events. Working with the Wisconsin Medical Home Initiative director, Youth Health Transition Initiative staff and other network partners, the Youth Health Transition Initiative director led the development of a Medical Home and Youth Health Transition competency assessment for CYSHCN information and referral staff to be piloted in 2020. A draft of the assessment was presented in November to information and referral specialists and the pilot version of the assessment was converted to an online survey by the end of December.

 

2. Promote the adoption of transition policies and/or practices and enhanced education through the Care Coordination/Shared Plan of Care quality improvement grants that select youth health transition as a focus. Three competitive clinic/health system transition quality improvement grants were awarded in 2019, focused on Youth Health Transition. The Youth Health Transition Initiative provided technical assistance to grantees on a regular basis. Regional Centers were available to quality improvement project teams in their region as well.

All clinics were asked to complete the Got Transition Assessment of Health Care Transition Activities both at the beginning of their grant cycle (baseline) and at the end of their grant cycle (follow‐up). Clinics rated themselves from level one (basic) to level four (comprehensive) on Got Transition’s eight transition elements. Collectively, there was improvement between baseline and follow‐up in the six core domains and two family engagement measures. The average score at baseline was 57.8% and 71.8% at follow-up.

All quality improvement grant teams used PDSA cycles to determine progress and make adjustments to their plans as they worked towards their project aims. Twenty-one youth readiness assessments were completed and seven families participated in the Build Your Bridge training. One grantee was approved to develop and share a PowToon video on transition with families in lieu of the Build Your Bridge training. Twenty families saw the video during appointments. All transition quality improvement grant teams participated in a day-long summit, where they learned more about the Shared Plan of Care, PDSA cycles, and focus area activities. They also had the opportunity to network with professionals and families. Keynote speaker Rebecca Baum, MD, Nationwide Children’s Hospital, discussed coordinating care in an uncoordinated world. More information on the quality improvement grants can be found in the NPM 11 narrative section.

 

3. Implement presentations/trainings and technical assistance opportunities for key systems and professional associations. The Youth Health Transition Initiative conducted quarterly Learning Community meetings in 2019. Attendance was a requirement for grantees but all listserv members were invited to attend. Overall, there were 80 unique registrants and 62 unique confirmed live attendees.

 

Date	Topic	Presenter	Link	Participants
2/28/19	Assessment of Health Care Transition Readiness for Health Care Practices	Youth Health Transition Initiative: Anne Harris	https://youtu.be/rVwz_Mf8u9I	19
5/16/19	Supported Decision Making	Wisconsin Board for People with Developmental Disabilities: Tami Jackson, Public Policy Analyst and Legislative Liaison	https://youtu.be/q9RNUvKVEbI	35
9/26/19	Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions	Melissa Novotny, DNP-Nurse Practitioner, Pediatric Complex Care Program and Pediatric Cerebral Palsy Clinic, American Family Children’s Hospital	https://youtu.be/hmAHgNFbXWo	25
11/14/19	Lessons from the Field: Transition Support Tools and Practices. Featured a sneak preview of UW Health’s “Youth to Adult Transitions Toolkit”	Leanne Marso, RN, American Family Children’s Hospital Ambulatory Operations Director and Co-Chair of the Youth to Adult Transitions Steering Committee	https://youtu.be/rm9xAaBixCY	18

Figure 22: 2019 Learning Community Call Presentations

All evaluation respondents (100%) indicated agreement when asked if they were satisfied with the training received.

Of the 40 evaluation respondents, 39 (98%) indicated that they were better able to complete learning objective items following the webinar. The remaining respondent indicated they were able to complete all the items before attending the webinar.

 

Each webinar had unique learning objectives. Agreement that learning objectives were met was high across all webinars. Some webinar participants reported that they could complete the learning objectives before the webinar. This is not surprising in a learning community environment where it is expected that individuals with more experience or skill are able to share what they know with others.

At the AMCHP conference in March 2019, the Youth Health Transition Initiative connected with Transition leaders from Texas and Minnesota. After the conference, the team met remotely to continue discussing ways to integrate health care transition into the school environment, specifically into Individualized Education Plans and Post-Secondary Transition Plans. As a result of this work, the Youth Health Transition Initiative connected with Got Transition to discuss ways to promote health care transition in schools. The Youth Health Transition Initiative reached out to Florida and Washington, met with these states regularly, and invited each other to join outreach calls. Additionally, Florida and Washington Youth Health Transition groups were invited to the aforementioned Youth Health Transition Initiative Learning Community webinars.

The Youth Health Transition Initiative along with the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities facilitated distance learning access to the Baylor Transition Conference event at UW Hospital and Clinics, and Children’s Wisconsin, with 40 providers attending. Figure 30 illustrates the frequency of interactions by the Youth Health Transition Initiative and the outcomes of those interactions.

4. Conduct transition planning with youth with special health care needs and their families to have planned transitions to adult health care, care coordination and family supports, increasing reach to underserved populations. The Regional Centers provided individual assistance to families with CYSHCN. Youth Health Transition continued to be an area of interest for families and the topic was discussed about 150 times in 2019. The Regional Centers and the Youth Health Transition Initiative worked with the WellBadger Resource Center to include youth health transition via information and referral, training, outreach and promotions.

 

Build Your Bridge: This curriculum was designed for families of youth who are of transition age. It was offered five times this year, reaching 72 people. The audiences were school groups of parents and one medical provider organization. This curriculum is under review to create a shorter version of the presentation and a version that is more accessible for families who have youth with significant cognitive disabilities.

 

Bridging the Gap: The Youth Health Transition Initiative supported dissemination of the Bridging the Gap curriculum in order to reinforce the concept of Youth Health Transition, describe tools that exist to support planning for the transition to adult health care, and how to apply the tools in the participants’ setting. Between Youth Health Transition Initiative and Regional Center staff, 14 sessions were provided, which reached 330 participants. The audience varied from statewide conference breakout sessions, educators meetings, parent/youth groups, and the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities program.

 

What’s After High School? Family Voices conducted fifteen “What’s After High School?” trainings that reached 398 participants. The following table summarizes the number of trainings and families, health care providers, and community partner participants over the past three years. This curriculum was provided to groups such as Parenting Connections, Aiming for Acceptance, Navigating Autism Wisconsin, Autism Society of Fox Valley, a variety of high schools, the Wisconsin Statewide Parent-Educator Initiative, county human services and Aging and Disability Resource Centers (Regional Centers).

5. Assure that diverse family and youth leaders are identified, supported, and participate in planning transition outreach, policy, education, and quality improvement programs. Details are described in the NPM 11 narrative, Strategy 6.