Nearly 248,000 (19.5%) of Wisconsin children and youth, ages 0 to 17, have a special health care need. Among this population, 14.9% of children 6 to 17 years old missed 11 or more days of school due to illness, and 17.3% of families report that a family member had to cut back on work hours or stop working because of their child's health or health conditions. Nearly half of families of children with special health care needs reported that their current insurance is inadequate and/or they had a gap in insurance coverage in the past year, and close to 1 in 3 families report spending $1,000 or more each year for out of pocket medical expenses. Only 11.1% of this population receive care in a well-functioning system, according to the 2018-2019 National Survey of Children's Health.

 

Infrastructure, Financing, and Roles

In 2000, the Title V Program’s CYSHCN staff in Wisconsin made significant changes to the structure and administration of projects to better support an integrated, systems-building approach. Provision of and payment for direct health services provided by others was discontinued, which 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.

 

Funds were redirected to fund 5 regional centers for children and youth with special health care needs, one in each of Wisconsin’s 5 regions. Regional centers provide information and referral (I&R) and follow-up services for families and providers as well as outreach, education, and training. Partnerships between WIC, Title V, and the Wisconsin Well Woman Program fund the Wisconsin Women’s Health Foundation, which administers the Well Badger Resource Center and phone line (with teletypewriter and language line). Well Badger also includes a website, chat, online directory, and email functionality for the public and professionals to access resources and information.

 

The Regional Centers and Well Badger provide a regional and statewide structure supporting integrated service systems at the community level. The Title V Program established “hubs of expertise” in 2010 to lead select CYSHCN-focused NPMs and system improvement efforts. Family Voices of Wisconsin supports family leadership, advocacy, public policy, family education and training. Parent to Parent of Wisconsin provides individual parent matching support. The Wisconsin Medical Home Initiative within Children’s Health Alliance of Wisconsin promotes medical home implementation for providers and families, including grants to support quality improvement at the system level. ABC for Health, Inc. (ABC) provides health benefits assistance in collaboration with the regional centers, and supports advocacy for families with special health care needs. The Youth Health Transition Initiative provides outreach, education, and training including a Learning Community. The Genetics Systems Integration hub integrates genetics with public health systems to support individuals with genetic conditions. These organizations encompass the CYSHCN Network, a group that collaboratively advances systems of care for children with special health care needs (including NPM 11 and NPM 12) by implementing strategies at the individual (youth and family), community, health practice/health system, and state levels.

 

As described in the Health Care Delivery System (Section iii.E.2.b.iii), the Bureau of Children’s Services in 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, Care4Kids, and the Children’s Community Options Program. The Children’s Long-Term Support Waiver Program provides § 1915(c) waiver services for eligible children from birth to 22 years. The approved § 1915(c) waiver (effective April 1, 2017 through December 31, 2021) permits the Wisconsin Department of Health Services 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 CYSHCN Medical Director was a member of the Children’s Long-Term Support Advisory Council, as well as Family Voices of Wisconsin. The CYSHCN Statewide Coordinator is a member of ad hoc work groups on access and intake. As of December 2020, 11,840 kids were enrolled in the Children’s Long-Term Support Waiver Program, and over 1,800 were waiting to enroll. In September 2017, the Division of Medicaid Services began funding care coordination for children with medical complexity enrolled in the complex care programs at Children’s Hospital of Wisconsin and University of Wisconsin American Family Children’s Hospital. Beginning in November 2019, this benefit was extended to include Marshfield Children’s Hospital. Children’s Hospital of Wisconsin and American Family Children’s Hospital are participating in the HRSA-funded collaborative improvement and innovation network (CoIIN) for children with medical complexity now in Year 4 with Children’s Hospital of Wisconsin as the lead. Only $95,000 in state funds 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, approximately $7 million per year) support the Newborn Screening Program, including the provision of nutrition products and support for diagnostic centers.

 

Since the Title V Program’s role is not one of provider or payer, staff collaborate with the Network of CYSHCN partners across the state to provide vision, leadership, and facilitation of quality improvement. This includes creating and maintaining strategic partnerships, utilizing data and evaluation to inform strategic decisions, building and sustaining workforce capacity, and centering family leadership with health equity as an underlying goal. Title V’s CYSHCN staff meet regularly with Network Directors of Regional Centers and hubs to assure coordination and alignment of work. Program data are collected quarterly and presented at Network Directors meetings.

 

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

NPM 11 addresses the 2015 Priority Need Health Care Access and Quality. The Title V Program supported the Wisconsin Medical Home Initiative in 2020 to lead medical home-related projects.

 

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. Monthly Medical Home Minute e-newsletters that promote aspects of medical home implementation were sent to an average of 1,273 recipients per e-newsletter, with an average open rate of 21.5% in 2020, up from 18.5% in 2019, and 16.7% in 2018, with the highest open rate (24%) for the April issue featuring Wisconsin Collaborative for Healthcare Quality COVID-19 webinar for Wisconsin dentists. Content was also circulated through News on the Nines (a newsletter sent monthly to the Network), social media and through Children’s Health Alliance of Wisconsin newsletters.

 

Promotion of the medical home brochure was impacted due to the cancellation of in-person conferences and trainings as a result of COVID-19. The brochure was featured on websites for partnering agencies including those in the Network, and shared in the medical home Minute. The brochure was also accessed via the Medical Home Initiative website 102 times (52 English and 50 Spanish) and trainings on developmental screening. To advance workforce development, 6 pediatric primary care team trainings were conducted in 3 of Wisconsin’s 5 public health regions, with a total attendance of 103 participants. Thirty-eight of the attendees claimed Continuing Medical Education credit for their participation. The number of requested trainings and attendees may have been influenced by the shift to a virtual format. Converting to a virtual format increased the reach of each training on developmental screening. More information about these trainings can be found in the Child Health Domain. 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. The competency self-assessment was sent to Regional Center staff in January 2020. The medical home and youth health transition competency assessment for CYSHCN Information and Referral staff was piloted. It was promising that the tool measured what was intended. Information was missing about who was new to their position or which respondents worked for the Regional Centers, but will be obtained in the future. The goal was to determine if 80% of the workforce self-assesses as competent. This pilot helped identify areas where workforce competency can be improved through targeted training and technical assistance. The first year of implementation for the assessment will be 2021.

 

Table 1: The Wisconsin Medical Home Initiative’s Medical Home Minute e-newsletter was sent out monthly throughout 2020, primarily to professionals.

Medical Home Minute Open Rates in 2020
Month	Subject Line	Open Rate	Total Emails Sent
January	Food Insecurity Screening: Gaining popularity but follow-up is crucial	19.7%	1,289
February	Promoting Quality Care: Wisconsin’s RCs for CYSHCN	22.2%	1,283
March	Providers and Teens Communicating for Health	23.7%	1,281
April	Wisconsin Collaborative for Healthcare Quality Webinar April 15: COVID-19 for Wisconsin Dentists	24.1%	1,276
April	Well Badger Resource Center | Wisconsin Collaborative for Healthcare Quality Child Health Huddles	21.6%	1,274
May	Telehealth: A Strategy to Stay Connected in Healthcare	21.9%	1,271
June	Support for Families with CYSHCN	20.2%	1,262
July	QI Learning Opportunities for Primary Care Providers	19.6%	1,236
August	Virtual Training and Learning Opportunities	21.6%	1,229
September	Back to School Resources and QI Learning Opportunities	22.7%	1,286
October	Early Identification of Developmental and Mental Health Concerns	23%	1,290
November	Learning Collaborative eligible for Maintenance of Certification 4	19.8%	1,286
December	Improving Lead Screening Rates for Pediatric Patients	20%	1,287

 

The Wisconsin Medical Home Initiative website houses resources for both professionals and families. Website pages include Medical Home, Developmental Screening, Mental Health Screening, Care Coordination, Family Engagement and Learning Communities. On the Children’s Health Alliance of Wisconsin site through December 31, 2020, there were a total of 1,797 page views, 1,597 unique page views and 1,050 new users. The most frequently visited pages included the medical home main page (630 views), Learning Communities (353 views), Developmental Screening (256 views) and medical home Initiative page (235 views). In addition, information on medical home concepts was shared with 470 families through contacts with the Regional Centers.

 

An evaluation of trainings was conducted to assess if trainings were meeting the needs of culturally diverse families. In 2019, several meetings with Tribal community representatives took place. It was determined that the Partnering with your Child’s Doctor training was not in alignment with their values. In 2020, Network partners including the Regional Centers decided to revise the training; it was discontinued and replaced with a more comprehensive series of medical home trainings for virtual and in-person delivery. The series includes Caring for the Whole Family, Assembling a Care Notebook, Requesting a shared Plan of Care (shared plan of care) and Exploring Care Mapping (C.A.R.E.). The Exploring Care Mapping session replaced the original Care Mapping training that was established in 2018. Each training is close to 20 minutes in length, and they can be mixed and matched to meet the interest of the audience and the time available. Information about the series was disseminated to the Network through News on the Nines. One of the initial C.A.R.E. Series workshops was held virtually in October 2020 by the Northern Regional Center and included the “Requesting a Shared Plan of Care” and “Assembling a Care Notebook” sessions. Participant evaluations (n=7) indicated that 100% agreed or strongly agreed that the workshop was easy to understand, had useful information, and would recommend the workshop to others. While 2020 was a year of transition for the medical home trainings, training was still delivered through synchronous virtual sessions or pre-recorded online trainings to attendees across the state. Feedback obtained through training evaluations indicate very high levels of agreement to statements about ease of understanding and usefulness of the information. Nearly all would recommend the sessions to others, feel they are better able to support CYSHCN, and feel they are better able to partner with others.

 

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 by Family Voices of Wisconsin and the Regional Centers for families about partnering with their child’s doctor, care mapping, care coordination (includes shared plan of care) and accessing benefits. Trainings were promoted by social media, email alerts, written materials and websites. Some trainings are available online through Family Voices of Wisconsin as pre-recorded trainings. In 2020, Did You Know, Now You Know was converted to a pre-recorded training to be watched ahead of a virtual discussion session, with 87 attendees during the year. A new training called Medicaid Made Easy (178 views) was established. This training gives Wisconsin families a solid understanding of Wisconsin Medicaid programs for children with disabilities and how these programs are funded. The availability of pre-recorded online trainings was a mechanism to reach more families and was critical during the pandemic; however, the training evaluation completion rate for online participants viewing pre-recorded sessions has been lower than in-person participants or virtual training participants.

 

Table 2: Trends in Medical Home In-Person and Virtual Trainings from the 2020 REDCap Report. A dash (-) indicates when a training was not available and a star (*) indicates that participants were virtual

	2018 Sessions	2018 Participants	2019 Sessions	2019 Participants	2020 Session	2020 Participants
Partnering with your Child’s Doctor	6	62	2	25	-	-
Did You Know? Now You Know!	8	101	11	180	11	87*
Care Mapping	1	26	8	67	-	-
Care Series: Exploring Care Mapping	-	-	-	-	7	50*
Total	15	212	21	272	18	137

 

 

 

Table 3: Family Voices Wisconsin reported a total of 642 page views of their pre-recorded Medical Home Training Sessions in 2020.

	Page Views
Did You Know? Now You Know!	333
Coordinating Your Child’s Health Care	131
Medicaid Made Easy	178
Total	642

 

Table 4: A REDCap evaluation of medical home trainings administered in 2020 showed that attendees nearly all agreed or strongly agreed that each of the trainings were useful.

	Information was easy to understand	Session had useful information	Would recommend the session to others	Better able to support my child/young adult (or others I assist with special health care needs)	Better able to partner with others
Did You Know? Now You Know!	96%	98%	96%	98%	97%
Coordinating Your Child’s Health Care	100%	100%	100%	50%	100%
Medicaid Made Easy	97%	97%	97%	100%	100%

To explore family navigator models and home visiting programs, the Wisconsin Medical Home Initiative partnered with the Family Foundations Home Visiting Program and Family Health Section. The Wisconsin Medical Home Initiative, the Home Visiting Nurse Consultant and the CYSHCN Unit Supervisor collaborated to coordinate and facilitate eight monthly calls in 2020 that included attendees from the Title V Program, Medical Home Initiative, and Home Visiting Program. The Healthy Families America, Nurse Family Partnership, Parents as Teachers, and Early Head Start models were presented to learn more about collaborative opportunities. Partners also planned and co-presented at the March ‘Fulfilling a Promise’ conference. This presentation targeted home visitors as a way to promote awareness of Network and newborn screening resources. Many presenting partners were remote due to COVID-19 restrictions.

 

3. Support care coordination and continuous quality improvement with healthcare teams and healthcare systems. In 2020 (year 5 of a 5-year cycle), 7 tribal health centers and 3 practice sites (competitive grantees) participated in the Advancing Family-Centered Care Coordination Learning Community Quality Improvement Project lead by the Wisconsin Medical Home Initiative. Support was also provided to three teams for the Children with Medical Complexities CoIIN project. Children’s Hospital of Wisconsin serves as the Children with Medical Complexities CoIIN project lead and fiscal agent, in collaboration with American Family Children’s Hospital. The Title V Program supported participation of Family Voices of Wisconsin, the Southern and Southeastern Regional Centers (regions where Children’s Hospital of Wisconsin and American Family Children’s Hospital are located), CYSHCN Unit staff, and the Title V Quality Improvement Director who participates on biweekly calls and a day-long retreat with the practice teams. All team meetings included members of the CYSHCN Unit, Title V Quality Improvement Director, Regional Centers, and Family Voices of Wisconsin. In 2020, work focused on improving the process of goal setting as part of the shared plan of care. The team created 39 goal cards in three separate decks (one with pictures, one with graphics and one with line drawings). All three decks were laminated and used in the clinical setting. At the onset of COVID-19, the decks were transferred to an online document in both English and Spanish. An online version of the goal cards was developed as well that was released in early 2021.

 

 

 

The CoIIN work aligns with the shared plan of care grants as both have similar missions to increase the number of families who have a shared plan of care, establish meaningful and actionable goals in the plan, and to ensure that the plans helps their child get their needs met.

 

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. Plans must include three elements: family strengths and preferences; a negotiated plan of action; and a medical summary. Quality improvement teams were connected to Regional Center partners, Family Voices of Wisconsin, and (if appropriate) the Youth Healthcare Transition Initiative, during Learning Community calls and individual team calls during the year.

 

Clinical practice teams and families piloting the shared plan of care reported quarterly. Review of feedback on quarterly family surveys (66% of the 79 responses received indicated they have a shared plan of care) highlighted that families agree the shared plan of care helps make sure more of their child’s needs are met. By the end of the year, 420 children had an implemented shared plan of care, and an average of 91% of families responding to the survey agreed or strongly agreed that the shared plan of care helps make sure more of their child’s needs are met for the year.

 

Figure 3: percent of families who agree that a shared plan of care helps ensure more of their child’s needs are met, according to a 2020 quarterly online survey

 

Clinical teams were required to include family members as part of the quality improvement team. By the end of February, 70% of the teams indicated they had an identified family representative member on their team, but by December, only 37% of team meetings included a family member. Many teams struggled working with family partners, especially during the pandemic while families had other priorities. To support family partners on the quality improvement team, three family representative calls were held and facilitated by Family Voices. However, participation remained challenging and reinforced the need to continue to seek ways to support family engagement in this systems level work. Two family partners participated on the first call in March. The June call was opened to all families in the state, to provide resources and family support during the pandemic. The October call was cancelled due to the pandemic. Participation ranged from two to four family members per call. Gift cards were distributed to families who participated. A welcome guide that supports the role of the family as part of the team was shared with members.

 

Figure 4: Percent of Team Meetings that Include a Family Member, according to a quarterly online survey in 2020

 

 

Families communicated that the shared plan of care was a beneficial tool to provide 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, 67% of families agreed or strongly agreed with an average of 81% for the year that the shared plan of care helped them tell other service providers about their child’s needs. One family’s feedback was that “It has made the process of transitioning to adult care, guardianship, IRIS program much easier” and “[The shared plan of care] helped streamline emergency room visits and planned surgical admissions to hospital – I felt that helped keep everyone on the same [page] and reduce unnecessary interventions to my child.” Family events had a great impact as well. The Wisconsin Medical Home Initiative, the Western Regional Center, and one of the competitive grantees provided dinner, gift cards and child care for families. After families dined together, parents/guardians viewed a portion of Coordinating Your Child’s Healthcare and learned more about medical homes, Regional Centers, shared plans of care, and care coordination. Feedback was very positive and all agreed the event was helpful.

 

Review of feedback on quarterly care team surveys from nine teams highlights challenges and learned lessons from the teams’ perspective on how using the shared plan of care has impacted the care they provide and how they interact with families. Teams reported improved communication with families, health care colleagues, and 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 confirmed the quality improvement grant provided opportunities for identifying and better understanding family needs and goals. One clinic stated “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.”

 

Figure 5: Percent of families agree/strongly agree that the shared plan of care helped them tell other service providers about their child’s needs, according to a quarterly online survey

COVID-19 priorities impeded attendance at Learning Community calls. Attendance ranged from 43% to 90%. The third call in October was held for tribal health centers only. Overall, 73% of participants indicated they were satisfied or highly satisfied with the productivity of the calls. 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. These tests were submitted quarterly online using Life QI (a web-based platform) or by paper, then shared with Regional Center staff to increase awareness of clinic efforts. Regional Centers helped connect clinics to additional community supports and resources.

 

Two summits were planned—one for the tribal health centers and the other for competitive grantees – and a retreat for the Children with Medical Complexities CoIIN sites. The summit for the tribal health centers was ultimately cancelled, as COVID-19 became a competing priority. The summit for the competitive grantees was combined with the retreat for the CoIIN team, since both groups were involved in the shared plan of care and the CoIIN. This resulted in additional, individual outreach being provided to teams throughout the year, proving particularly valuable for tribal health center teams, as it improved their understanding of the shared plan of care and how CYSHCN may benefit from it.

 

Title V’s CYSHCN staff also participated in the Wisconsin Collaborative for Health Care Quality - Adolescent and Child Steering Group. More about this work can be found in the Child Health Domain narrative.

 

4. 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 2020, there were 956 families that contacted the Regional Centers (27% decrease from 2019, 10% decrease from 2018). These families received 1,547 referrals for services, which was down from 1,738 in 2019 (11% decrease from 2019, 19% increase from 2018).

 

	Total Families	Families Seeking Information	Families Seeking Referrals	Total Referrals Made
2018	1,065	999	739	1,304
2019	1,312	1,154	946	1,738
2020	956	925	751	1,547

Figure 6: Regional Center referrals decreased slightly in 2020, as did the number of families contacting them.

Most calls were from counties nearest a Regional Center, and areas of higher population size, indicating continued need for Regional Centers to conduct outreach to all counties.

 

Figure 8: The top sources of referrals to the Regional Centers remain health care providers, but also include persons who had called before and county/community agencies.

Figure 9: The most common referrals made by the Regional Centers were for Child Long-Term Support services, health benefits, and behavioral/mental health services.

Linking families to needed supports and services remains a challenge. Among referrals with follow-up data, 68% of referrals resulted in receiving services within the time of follow-up; 13% of referrals were awaiting an eligibility determination; and 10% of referrals demonstrated an unmet need.

Figure 10: Regional Center follow up data shows that more than half of their clients are receiving or received services.

Referrals with the highest unmet needs were Children’s Long-Term Support waiver services and behavioral/mental health. Regional Centers also provided information and technical assistance through 790 calls and emails from community providers. The largest number of consultations occurred with health care providers (281) and education professionals (127).

 

Figure 11: Children's Long-Term Support Waiver services continue to be the highest unmet need for families of CYSHCN contacting a Regional Center.

 

Regional Centers conducted promotional activities to increase awareness of their services throughout the state. There were 32 statewide outreach activities. Due to COVID-19, the Regional Centers had to identify new ways to engage and serve families and professionals, and increase call volume. The Northeast Regional Center connected a family to a homeless shelter, rapid COVID-19 test, and medical appointments. The Southeastern Regional Center established partnerships with local partners and community members in Milwaukee, one of the most segregated cities in the nation. These partnerships resulted in bi-directional referrals, delivery of trainings, consultations and more calls to the Southeastern Regional Center from families in underserved zip codes. The Southern Regional Center focused on increasing social media presence, weekly “Resource Roundup” emails, and regular online offerings for families. Their Facebook page included posts related to COVID-19, trainings, mental health support, and self-care tips. Emails contained links to news articles, research, training opportunities, and more. Their YouTube channel highlighted 15 conversations with experts about topics relevant to families.

 

While an electronic satisfaction survey link was shared widely with anyone having contact with a Regional Center, only 37 responses were received during 2020. Of those, 64.9% were parents or family members, and 35.1% were providers or professionals. Survey results were overwhelmingly positive.

 

Well Badger provides a phone line, a searchable online directory, and a website for parents and providers including the ability to live chat and exchange text messages. Well Badger is part of the Network and works in collaboration with the Regional Centers to assure families and providers access to I&R services. Well Badger received 194 (9% of 2,161 total) contacts related to CYSHCN resulting in 512 referrals with 12% to Birth to 3, 8% to Regional Centers, 20% to parent support, 10% to respite care, and 8% to Child Long-Term Support. Of all contacts, 66% agreed to follow-up; among those reached, (79%), 574 were successfully engaged/enrolled in services. The number of contacts related to CYSHCN decreased from 268 in 2019, though the overall number of contacts to the resource center increased.

 

Parent2Parent received 266 referrals with 34% from parents themselves, and made 216 matches. Each matched parent received a check in call after one week and an evaluative call at approximately six weeks following matching. Seven trainings resulted in 37 newly-trained support parents. One mom noted her support parent provided great guidance for transitioning her child home from inpatient care, and is now a support parent for another mom! Family Voices of Wisconsin published 3 new fact sheets – “Preparing for Emergencies”, “Working with an IRIS (Include, Respect, I Self-Direct) Consultant”, and “Tips for Keeping Your Child and Family Healthy this Summer”. They also updated 13 existing fact sheets including translation to Spanish and downloadable on the Family Voices website. A new series of fact sheets, “Starting and Sustaining Family Support Groups” was developed. Family Voices utilizes a Materials Review Committee comprised of diverse family members to review fact sheets and newsletters, ensuring written materials are culturally and linguistically appropriate and accessible. Family Voices distributed 1,600 hard copy fact sheets, and there were 3,862 unique visits to the learning page on their website (9,227 unique, new visitors to their website).

 

ABC for Health accepts 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 provided health benefits assistance to 279 CYSHCN. ABC traditionally conducts an annual health benefits competency survey of the Network that is used to determine training needs, though it was not conducted in 2020 due to COVID-19. Instead they developed a Pandemic Response Initiative, a high-impact community education effort directed at assuring health coverage of racial/ethnic minorities or tribes in Wisconsin displaced or dislocated from work because of COVID-19, and maintained a public-facing COVID-19 Resources webpage. They posted 163 videos to YouTube, with 518,000 video views, a watch time of 16,600 hours, and 4,000 new subscribers to their YouTube channel.

 

The Genetic Systems Integration Hub coordinated monthly meetings with the CYSHCN Program. Based on feedback from the Genetics Advisory Committee members, communication moved more virtual through email, newsletters, and in-person meetings (with a virtual option). These modes of communication updated members on genetics-related activities in the state and the Midwest Genetics Network invitations and activities, and to solicit members’ advice regarding other activities of the Genetic Screening Integration. An ongoing challenge has been to recruit and maintain parent participation on this advisory committee. In 2020, the Genetic Screening Integration completed the Community Engagement Assessment Tool and decided to improve program leadership by re-evaluating the role of family leaders as contributors to the Genetics Advisory Committee. The Genetic Screening Integration participates in the Midwest Genetics Network and its three work groups: Plain Community (formerly Health Equity), Tele-genetics, and Provider Education. The Genetic Screening Integration completed a tele-genetics quality improvement project at the University of Wisconsin Waisman Center with Midwest Genetics Network funding, as well as a second mini-grant project 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.

 

The Genetic Screening Integration website serves as an information resource regarding genetics systems for the Title V Program. The website had 2,317 users (2,305 new), 2,581 sessions (new and returning users), and 4,017 page views. Genetic Screening Integration staff collaborated with the University of Wisconsin Madison Center for Human Genomics and Precision Medicine to hold the annual Genetics Exchange virtually on September 25, 2020. Attendance was the highest ever, with 197 participants. Sixty-eight genetics counselors received Continuing Education Units and 20 health professionals received Continuing Medical Education credits.

 

The Title V Program continued to support the Act Early team with the continuation of the “Innovation in Care Integration for Children and Youth with Autism Spectrum Disorders and other Developmental Disabilities,” a four-year initiative to increase early access to developmental and autism spectrum disorder screening, assessment, and early intervention among medically underserved populations across Wisconsin. More on this project can be found in the Child Health narrative.

 

Family Voices of Wisconsin created the Family Engagement and Leadership matrix for the Network, in collaboration with Parent2Parent, the Regional Centers, the Youth Health Transition Initiative, Medical Home Initiative, Well Badger, ABC for Health and the Title V Program’s CYSHCN staff. 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 2020 on the areas of identify and connect. Overall in 2020, there were 800 contacts with parents through trainings or Parent2Parent matches.

 

Family Voices of Wisconsin has been a partner of the Family Action Network since 2008. They are the only family-oriented, cross-disability listserv of its type in Wisconsin and is a collaborative activity between the Wisconsin Board for People with Developmental Disabilities, University of Wisconsin Waisman Center, and Disability Rights Wisconsin. There were a total of 2,030 people subscribed to the Family Action Network at the end of 2020, a 3% net increase over 2019. Thirty-six notices for leadership, education, training and grant opportunities were distributed through the Network listserv in 2020. Increasingly, family members responded to postings with requests for additional information and/or support to participate in an activity. A survey of participants was disseminated. Survey findings showed that 63% of members were parents and family members, 87% read posts most or all the time, and 62% found the information very or always useful.

 

To assess the number of families and professionals who were aware of the Network, a quarterly survey was distributed: 55% (quarter 2; n=166), 55% (quarter 3; n=184), and 62% (quarter 4; n=161). The goal of reaching 60% was accomplished by the end of 2020.

 

Family Voices Wisconsin also distributes a “Family-2-Family” quarterly newsletter delivered in print and electronic form. It was circulated via a stakeholder listserv and reached 3,748 individuals and organizations in 2020; in hard copy it reached an additional 2,327 people. Family Voices of Wisconsin 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.

 

5. Conduct assessment of family, youth and community engagement and select one focus area for program improvement. Title V Program staff including the Health Equity Consultant came together with Family Voices of Wisconsin and youth representatives to address family, youth and community engagement. This group 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 partner agencies because programs that respond to participants’ experiences are more effective. The core team developed the Community Engagement Assessment Tool, consisting of 14 indicators of engagement of families, youth and community members in programmatic efforts. The team recruited pilot sites in 2019 to select one indicator from this tool to address with an improvement action plan. Family Voices of Wisconsin and the Northern Regional Center served as pilot sites, completing the Community Engagement Assessment Tool and creating an action plan to enhance engagement focused on one of the 14 indicators. Revisions to the tool were made based on feedback from the 2019 pilot sites, and in 2020, use of the Community Engagement Assessment Tool was extended to all CYSHCN contracts. Eleven of the 12 Network partners completed the Community Engagement Assessment Tool. Some of the action plans developed included:

 

• Implementing Regional Center Advisory or Parent Advisory Council meetings

 

• Increasing diversity on the Advisory Council

 

• Setting up a team of community members to inform what content should be on websites

 

• Renovating websites to include resources for all counties in the region

 

• Developing a deeper connection to Black and Brown families

 

• Re-evaluating the role of family leaders as contributors to the Genetics Advisory Committee

 

• Engaging with providers to increase family awareness of and engagement with the Parent2Parent program

 

• Systematically collecting feedback from families on the Children's Mental Health Resource Navigator development

 

• Establishing systems to recruit Participant Advisory Group members from Well Badger users

 

• Including community partners in decisions about design of action plan

 

• Determining how to gather family feedback taking into consideration cultural values

 

• Using data to drive curriculum development by sharing data with families and getting their input

 

COVID-19 had a detrimental impact on the completion of these action plans, but many partners plan to continue their work in the coming year.

 

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

 

NPM 12 addresses the 2015 Priority Need Health Care Access and Quality.

 

1. Develop and disseminate consistent strategies and tools with common messaging and promotion of best practices in youth health transition planning. To promote common messaging and best practices, the websites for the Youth Health Transition Initiative and Regional Centers link to the Got Transition website. There were 4,436 page views and 1,573 new users of the Youth Health Transition Initiative website, an increase from 2019. The youth health transition initiative Facebook page had 130 new postings in 2020.

 

The Youth Health Transition Initiative maintained regular contact with the Regional Centers and the Network through participation in quarterly Network Directors meetings, calls with Regional Centers, and quarterly youth health transition-specific communications. Regional Centers discussed youth health transition concepts with 54% of I&R contacts from families regarding their children and youth ages 12 through 25 years old.

 

The Title V Adolescent Health Nurse Consultant collaborated with the Youth Health Transition Initiative and the Wisconsin Providers and Teens Communicating for Health (PATCH) Program to include youth health transition in 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 messaging to also appeal to youth with special health care needs.

 

Over 1,300 copies of the Stay A Step Ahead brochure were distributed across the state. They also collaborated with family advisors to develop videos organized around eight youth health transition tools for families. Unfortunately, COVID-19 delayed video production, though video clips were shared as part of 2020 presentations including the September and November Learning Community Calls. The videos will be posted on the youth health transition initiative website in 2021.

 

Engagement of 23 self-advocates or family advisors occurred with the Youth Health Transition Initiative who worked on the Community Engagement Assessment Tool, edited the One Step Ahead brochure, served as Learning Community call presenters, appeared in educational videos, contributed to curricula development and participated in Wisconsin Integrated Transition Planning Project meetings.

 

Details about the medical home and youth health transition competency assessment for I&R staff can be found in NPM 11 narrative, Strategy 1.

 

In June 2020, the Title V Program was added to the state’s Interagency Agreement on Transition. In existence since 2010, this was the first time work on youth health transition for CYSHCN was included. This agreement is intended to clearly define necessary relationships, communication, and procedures between Department of Public Instruction, Division of Vocational Rehabilitation, and Department of Health Services to establish collaborative efforts for service delivery to improve competitive, integrated employment outcomes for individuals with disabilities.

 

2. Promote the adoption of transition policies and/or practices and enhance education through Care Coordination/shared Plan of Care quality improvement grants that select youth health transition as a focus. Quality improvement grants were awarded to two competitive grantees in 2020, focused on youth health transition. The Youth Health Transition Initiative provided technical assistance to grantees on a regular basis, and Regional Centers supported quality improvement project teams in their region. The Southern Regional Center provided training to the families in the Complex Care Program at the American Family Children’s Hospital on Care Mapping. Though offered over Zoom, the five parents in attendance enjoyed the training and one parent commented that they are now going to make care maps for everyone in their family. The Southeast Regional Center provided training to the families in the Children’s Hospital of Wisconsin Complex Care Program. The Regional Center offered Dreaming Differently, a newly developed curriculum for families of children with complex medical conditions and intellectual or developmental disabilities, and had five parents in attendance.

 

Youth Health Transition Initiative staff attended grantee team meetings and provided technical assistance and support for training events. After an initial lag in youth health transition activities due to COVID-19, quality improvement teams were able to resume their work. COVID-19 caused the April summit to be canceled, and since these two complex care teams were also members of the children with medical complexities CoIIN, the CoIIN retreat in August also covered youth health transition content. Two members of the youth health transition initiative team presented at this retreat on the challenges and barriers to youth health transition of children with medical complexities.

 

 

Clinics involved in the grant work completed the Got Transition Assessment of Health Care Transition Activities both at the beginning and end of the grant cycle and rated themselves from level one (basic) to level four (comprehensive) on Got Transition’s eight elements. While the clinics started at different levels, both clinics made progress from start to finish.

 

A 2020 family survey included a new question about agreement with the statement “My provider has discussed health care transition with me” and an additional question was added in the third quarter to the family survey to capture ESM 12.5 measure “Health care transition discussions with my provider helped us feel more prepared for the transition.”

 

Youth health transition readiness assessment completions and the percentage of consumers and providers who find them helpful did not end up being a good indicator of progress/success. This may be because the assessment is not uniform across clinics generally for these two grantees. For some it is a formal assessment and for others it is a process consisting of multiple pieces. It could also be that the assessment typically happens over time, or families responding to the surveys could not identify when they were having a “health care transition discussion” because the discussions with their doctors were not explicitly called transition discussions.

 

 

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 2020. Attendance was a requirement for grantees but all listserv members were invited to attend. Of the 51 evaluation respondents, everyone indicated they were better able to complete learning objective items following the webinar.

Several components of the Provider Education series were developed in 2020 and presentations were given to various groups. Four presentation sites totaled 91 professional participants.

 

• March 14th, Day with Experts on Down Syndrome: brief overview on youth health transition

 

• September 23rd, Conference for General Internal Medicine Department at University of Wisconsin: presentation on youth health transition to healthcare providers

 

• October 16th, Seminar in Pediatrics: information surrounding the opportunities and services provided through the youth health transition initiative via virtual conference “booth”

 

• November 16th, Sixteenth Street Community Health Center, Milwaukee: presentation on youth health transition to healthcare providers

 

Youth health transition champions were successfully identified among pediatric and adult providers. In March, the Youth Health Transition Initiative worked with a new specialty clinic in the University of Wisconsin system, Congenital Cardiac Clinics, to improve their youth health transition program. In August, Dr. Elizabeth Williams, 2nd year Medicine/Pediatrics resident at the Medical College of Wisconsin, expressed interest in youth health transition work. In September, Dawn Kimpel was connected with the Gundersen Health system to inquire about youth health transition work and needs. In October, a virtual meeting was held with Dr. Amanda Parks to discuss possible collaboration or support from the Youth Health Transition Initiative for the Adolescent and Young Adult with Cancer Telemedicine Clinic she is working to establish. In November, the Youth Health Transition Initiative held a virtual meeting with Kristen King, LCSW, University of Wisconsin Pediatric Liver Transplant Clinic to review youth health transition resources and offerings in the University of Wisconsin system and Epic Healthlink.

 

A team of professionals working to advance adolescent health met regularly in a cross-systems collaboration to address the identified challenge that Wisconsin adolescents, especially those experiencing health inequities, need a coordinated system of support, guided by a shared vision to ensure their health and development. The Youth Health Transition Initiative, along with the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities program at the Waisman Center, facilitated distance learning access to the Baylor Transition Conference event through Zoom for 40 providers.

 

 

 

 

 

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. Regional Centers provided individual assistance to families with CYSHCN. Youth health transition continued to be an interest for families and was discussed about 150 times in 2020. Regional Centers and the Youth Health Transition Initiative worked with Well Badger to include youth health transition via I&R, training, outreach and promotions.

 

Build Your Bridge: This curriculum is for families of youth who are of transition age and was offered three times in 2020, reaching 28 people. The curriculum was under revision for most of the year as the content was too much to be offered in a virtual format. A brief overview of youth health transition was created that can be viewed prior to the online training to reduce the screen time for families. In addition, the workbook was updated to reflect these changes.

 

Dreaming Differently: This curriculum was new in 2020. It was developed for families whose children have complex health conditions and intellectual and/or developmental disabilities. Using a quality improvement process in collaboration with a community team, the curriculum was created using an iterative process that systematically incorporated family feedback. This curriculum was piloted three times, reaching 19 people.

 

Bridging the Gap: The Youth Health Transition Initiative supported dissemination of this curriculum to reinforce the concept of youth health transition, describe existing tools 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, 11 sessions were provided during 2020, reaching 204 participants.

 

Closing the Gap: This is an education series for providers and health systems. This curriculum was offered at four sites, reaching 91 professionals.

 

What’s After High School? : Family Voices Wisconsin conducted 13 trainings in 2020 that reached 240 participants.

 

While total participation was down in 2020 from 2018 and 2019, this change reflects the response to COVID-19 and adjustment to delivering trainings virtually. In addition, the map below displays zip codes of youth health transition training attendees, color-coded by training. The inset map zooms into Milwaukee County to provide a better view of Wisconsin’s most urban county. Evaluation data from training attendees demonstrated high levels of agreement with the impact statements among attendees that did not know the information prior to the training.

 

 

 

 

 

 

5. Conduct assessment of family, youth and community engagement and select one focus area for program improvement (contract objective with CYSHCN grantees). The Community Engagement Assessment Tool was used to assure that diverse family and youth leaders were identified, supported, and engaged in planning youth health transition outreach, policy, education, and quality improvement programs. Details about the Community Engagement Assessment Tool are described in NPM 11, strategy 5.