The Wisconsin Children and Youth with Special Health Care Needs (CYSHCN) Network currently includes five Regional Centers – which connect families to training and resources – and five specialty hubs that provide specialty training or counseling on genetics, health benefits, family leadership, medical home, and youth health care transition. The Children and Youth with Special Health Care Needs Network directors gathered virtually in March 2021 to use the Planning Alternative Tomorrows with Home process to map out the activities and values of the Network.

 

Figure 1: The Children and Youth with Special Health Care Needs Network used the Planning Alternative Tomorrows with Home process to create the following graphic representing their goals.

 

National Performance Measure 11: Percent of children with special health care needs, ages 0 through 17, who have a medical home

 

Too many children with special health care needs do not receive medical care within the context of a medical home – defined as accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective. In choosing to address this national performance measure, Wisconsin’s goal is to increase the percent of children with special health care needs in Wisconsin, ages 0 through 17, who have a medical home from 42.8% to 47% (+10%) by 2025 (baseline is from 2017-2018 National Survey of Children’s Health).

 

The percentage of children and youth with special health care needs 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. The Wisconsin Medical Home Initiative was funded to lead Title V Medical Home-related activities in 2021, in partnership with Title V and the Children and Youth with Special Health Care Needs Network.

 

Evidence-based Strategy Measures

 

Measure	2021 Data
Percent of Regional Center information & referral staff who report competence in explaining medical home concepts	100%
Percent of family members, health care providers, and community professionals trained on Medical Home-related concepts who report a change in knowledge or skills or behavior following the training	96%
Percent of families who receive at least one Regional Center referral that results in needed services received	66%

 

Promote implementation of Medical Home best practices and develop and disseminate consistent strategies and tools with common messaging that includes actionable steps for specific audiences.

 

Wisconsin’s Title V Block Grant funds a medical home initiative where staff monitor the application of medical home concepts across the state and within health care systems. In 2021, medical home initiative staff provided updated content through the Medical Home Initiative website and a newsletter called “Medical Home Minute.” In 2021, the website was accessed 1,926 times with more than 1,200 new users. The electronic brochure, “What is a Medical Home,” was visited 71 times in English and 72 times in Spanish. The listserv reached 1,290 members. The most viewed content included the Children’s Mental and Behavioral Health Resource Navigator provided by Well Badger, and a report on a food security project in Milwaukee.

 

To simplify communication about medical home and share information with a wider audience, the Medical Home Initiative worked on a communication support plan with the assistance of a professional communication consultant. Three key messages were created that addressed the need for a medical home, the support system, and the facilitators, connectors, and conveners of a medical home.

 

After a successful pilot of the medical home and youth health care transitions competency assessment tool in 2020, it was launched with the full Children and Youth with Special Health Care Needs Network in 2021. In the competency assessment there are 18 questions related to medical home knowledge and skills. Each Regional Center information and referral specialist rated themselves as either Novice, Advanced Beginner, Competent, or Proficient on each item. The score is the percent of items in rated at the competent or proficient level. Results were assessed from 12 Regional Center information and referral specialists who have been in their position for a year or more. All these staff rated themselves as “competent” or “proficient” on at least 50% of medical home concepts and 83% were competent on at least 80% of the medical home concepts.

 

It is interesting to note that staff in their positions for less than a year were, on average, 30% competent, which may illustrate the value of on-the-job training.

 

To address equity in health care, the Spanish language version of Finding Your Way Navigation Guide was published in 2021 and added to the Waisman Center website where it has been viewed over 400 times. Regional Center staff have also participated in the “Padres e Hijos” (Parents and Children) radio program on La Movida and La Sabrosa. One Regional Center worked to adapt their “rack cards” in Spanish and Hmong and translated their webpage into Spanish. Likely the most impact to date has been through the hiring of center staff who are bilingual in Spanish and English and another person who is a parent of a child with special health care needs from the Bad River tribe.

 

Success Story: During a routine disease investigation call, health department staff talked with a family who tested positive for COVID-19. They discovered that one of their children, a 10-year-old boy, had recently been diagnosed with a malignant brain tumor. The family had medical specialists, but not a medical home. Regional Center staff, who were also based at the health department, assisted the family with information, connected them with various resources and services, and even located an agency to sponsor the children for Christmas. They were able to advocate for this family to obtain a variance for Children’s Long-Term Support Medicaid Waiver in their county immediately. As a result of this contact, Regional Center staff were able to help the family understand the concept of having a medical home and assisted them with this and much more.

 

Implement trainings, use quality improvement strategies, and provide technical assistance opportunities for families, community professionals, health care providers, and health care systems.

 

This strategy aims to increase knowledge and skills related to Medical Home and care coordination within and across systems. In 2021, the Children and Youth with Special Health Care Needs Network provided two different training topics for families to increase their understanding of a medical home, and more than 150 participants were trained through the 26 training sessions held.

 

C.A.R.E.: Medial Home Series for Families: This is comprised of four short, focused trainings entitled: Caring for the Whole Family, Assembling a Care Notebook, Requesting a Shared Plan of Care and Exploring Care Mapping. Eleven training sessions were conducted, and 56 participants (37 parents and 19 professionals) were trained. Of the 20 who completed participant evaluations, 95% agreed or strongly agreed that as a result of participating, they are better able to support their child/young adult (or those they assist) with special health care needs and 89% agreed or strongly agreed they are better able to partner with others (providers, professionals or families). Whenever a training is provided to an audience of family members, they are asked to share something they will do as a result of attending the session. Some responses included:

 

• “Join the parent-to-parent program”

 

• “Access support and resources which will help my whole family thrive”

 

• “Create a care notebook for my son"

 

• “Share what I’ve learned with other families”

 

Did You Know? Now You Know!: Regional Center staff offered 15 sessions of this curriculum and reached 106 participants – about equally divided between family members and community professionals. In 2021, a request was received from the Green Bay school district asking that the training be provided in Spanish rather than using an interpreter. With support from Family Voices of Wisconsin, a bilingual speaker was trained to meet this request. All the completed evaluations indicated that participants could better support their child/young adult (or those they assist) with special health care needs, and better partner with others such as providers, professionals, or families. Some commitments participants made following the training included taking information back to school staff, claiming mileage reimbursement, investigating what their insurance covers, and speaking up more at their child’s appointments to get the services they need.

 

The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity ended in 2021. Wisconsin did not apply for an optional fifth year because all members of the team wanted to continue working together regardless of involvement or financial support from the Collaborative Improvement and Innovation Network. Title V staff were central members of this project. The Wisconsin team learned that many barriers limit families of children with medical complexities from being on the Children’s Long-Term Support Waiver. In 2018 only 33% of children with medical complexities in the Complex Care Programs were enrolled in Children’s Long-Term Support, even though over 90% were eligible. Second, the team identified a need to move beyond simply having a Shared Plan of Care to ensuring the Shared Plan of Care is useful and relevant to families.

 

The team focused on two initiatives throughout the project:

 

1. Improving enrollment in the Children’s Long-Term Support waiver

 

2. Developing and implementing “Goal Cards” to spur discussions about goals that matter most to the child and family, as part of the Shared Plan of Care

 

Iterative quality improvement cycles were used to establish new workflows for Complex Care Programs’ staff to discuss the Children’s Long-Term Support waiver with patients and families. Enrollment in the waiver increased from 33% to 62% between 2018 and 2020. This represents a net gain of 297 children in the Complex Care Programs receiving Children’s Long-Term Support waiver services to help meet unmet needs. With average spending of $949 per child per month, this represents an increase of over $3 million annually being directed to help families meet their needs for supplies and services they previously went without or that families sacrificed other spending to afford.

 

Goal cards were developed to help the family and care team break down the many complex needs that children with medical complexities may have into smaller, achievable goals. Goal Cards are now offered in English and Spanish on a website, with recommended resources and action steps related to each chosen goal.

 

In August, the Project Team identified new priorities, including the development of an “Anticipatory Guidance Tool” for children with medical complexities – a tool that can offer guidance for patients who do not fit into Bright Futures guidelines. Implementation and evaluation will be discussed as the work continues in 2022.

 

The 2021 Tribal Health Center work plan was developed in partnership with the Wisconsin Department of Health Services and the Wisconsin Medical Home Initiative. The work plan included using a Shared Plan of Care, and planning calls were completed in January of 2021 with each tribal agency to gather general information related to workplan activities for the year.

 

Despite high interest and good intentions to complete required activities, tribal health agencies endured significant staff resignations and turnover, and remained closed on and off throughout 2021 due to the COVID-19 pandemic. Many staff were reassigned to pandemic-related activities such as vaccination efforts. The Wisconsin Medical Home Initiative and Title V staff remained in contact with the seven tribal agencies throughout 2021. Two learning calls were held (February and June) with five of the seven teams attending each call. Individual team calls were completed in the fall of 2021.

 

Quarter 3 and 4 surveys included the question "During the quarter indicated, did the COVID-19 Pandemic cease and/or suppress your work on the Shared Plan of Care project?" All teams agreed that COVID-19 suppressed their work. Due to stagnated work related to the Shared Plan of Care Project in 2021, Title V staff met with tribal staff individually to gather input on 2022 project plans to pivot this project to better meet identified needs in their community. By the end of 2021, each of the seven Tribal Health Center selected a community need they want to work on and completed a brief project proposal for their 2022 work.

 

Increase access to cross-system care coordination services for children and youth with special health care needs and their families and design a pilot with evaluation strategies that include partnering with local public health and other community agencies with healthcare systems regarding referrals and resources, including the social determinants of health.

 

In early 2021, the Wisconsin Medical Home Initiative brought together seven partners from health systems and community-based organizations to create the Food Insecurity and Health Pilot. This new partnership fostered an increase in knowledge, new relationships, and connected families to the resources they need.

 

The partners – Children’s Wisconsin, Feeding America Eastern Wisconsin, Friedens Food Pantries, and the Salvation Army Milwaukee County – worked toward linking health systems and community-based organizations to connect families to food and health resources.

 

“In Wisconsin, more than half a million individuals are experiencing food insecurity. Therefore, solving hunger will require an innovative, strong partnership that will work at a new level to meet the need. By joining in the Children's Alliance of Wisconsin pilot project, we are creatively showing a commitment to addressing food insecurity and the health of our communities,”

 

- Martha Collins, director of advocacy and outreach for Feeding America Eastern Wisconsin

 

2021 work focused on building trust and establishing relationships across sectors. The next step will be to focus on coordinated care and support for families to connect them to services they want.

 

Improve access to specialty health care using technology such as telehealth and telemedicine.

 

Although access to specialty health care using telehealth and telemedicine is a priority, the Children and Youth with Special Health Care Needs Network did not need to be involved in this process. Due to the pandemic, more specialty clinics provided this service and did not require technical assistance.

 

 

Provide easily accessible referral resource information to families and providers, to link families to needed supports and services.

 

After working through a temporary lull due to COVID-19, Regional Centers experienced an increase in contacts from families – a total of 1,525 unique families, which includes 1,009 families through the traditional route of a family reaching out to the Regional Centers, as well as 516 additional families who were connected to the southeast regional center through a pilot program with the Children’s Wisconsin Emergency Department. Of those 516 families, 140 had special health care needs. As part of a pilot project the emergency department conducted screening for food insecurity and provided information to the Southeast Regional Center. Due to these families reaching the Regional Centers through a different pathway – and the fact that not all of the children had special health care needs, these data were separated from the other Regional Center information and referral data. Through all contacts with regional centers, 1,190 families were referred to services, including 741 through the traditional pathway and 449 through the pilot. These families received 2,364 referrals, which was considerably more than the 1,547 referrals in 2020 (a 53% increase). Most families require more than one referral, and the trajectory has been increasing steadily over the past three years. Through their contacts with families, conversations about medical home took place with 512 families through the traditional pathway and 65 families through the pilot.

 

Regional Centers exceeded their goal of successfully linking 50% families who contact them to needed supports.  In 2021, at the time of follow up, 57% of referrals from the traditional pathway had resulted in receiving services, and 476 (66%) families were connected to at least one service. At the time of follow up, 22% of referrals were awaiting an eligibility determination; 10% of referrals demonstrated an unmet need; 6% of referrals had connected but were on a waiting list, 3% of referrals were no longer needed and 2% had another outcome. For families reaching the southeastern regional center through the pilot, 50% of families with a child or youth with special health care needs were linked to at least one needed support or service, while 43% of those in the pilot without a special health care need were linked.

 

Only 10% of referrals (130) were unmet at the time of follow up. Of those, the highest number of unmet needs were for behavioral and mental health services (27), Children’s Long-Term Support waiver (19), health care (18), and health benefits (16).

 

In 2021 – among referrals through the traditional pathway – the largest number of referrals were for Children’s Long-Term Support (272), health benefits (220), behavioral and mental health services (205), health care (160), and support for families (109). The work of the pilot focused on social determinants of health, and the top referrals for these families were for basic needs (414), transportation (158), parenting (139), Women, Infants, and Children Program (50), and health benefits (29).

 

Regional Centers provided 866 consultations with community providers, which was a 10% increase from last year. The largest number of consultations were with health care providers (299) followed by education professionals (141). In addition, Regional Centers conducted more outreach activities this year. They collectively attended 489 events promoting the Regional Centers, including 40 statewide events. Outreach occurred in 63 of the 72 counties.

 

Other programs in the Children and Youth with Special Health Care Needs Network also provided support to families. The Well Badger Resource Center supported over 2,400 people in Wisconsin in 2021, and 264 of them had children with special health care needs. They also maintain an online directory of 5,000 verified health resources. They had 23,733 users of the directory in 2021 with 1,633 pageviews related to children and youth with special health care needs.

 

ABC for Health provided benefits counseling to 139 families who had children with special health care needs. They are known for their video collection. In 2021, they posted 201 new videos and there were over a million views of their video collection.

 

To provide more culturally appropriate support to families, the Children and Youth with Special Health Care Needs Network established a learning group about race and the history of cultures in the United States. With financial support from Family Voices of Wisconsin, Katie Hamm provided content in an honest and trusting environment. Katie Hamm, MSW, is a consultant to non-profits and an Adjunct Faculty member of University of Wisconsin-Milwaukee’s Helen Bader School of Social Welfare. The sessions included:

 

• Laying the Foundation: Privilege, Implicit Bias, and Systemic Oppression

 

• A Systemic View of Black and African American People in the US

 

• A Brief Introduction to Native and Indigenous People in the US

 

• A Brief Introduction to Hispanic and Latino/x People in the US

 

• Moving Forward: Integration, Continued Growth, and Action

 

Between these learning sessions, the 35 participants engaged in small group discussions to digest and reflect on the content being shared.

 

In 2021, Title V hosted four virtual sessions that composed the Maternal and Child Health Summit, and children and youth with special health care needs staff hosted one of the sessions. In addition to providing an overview of the Children and Youth with Special Health Care Needs Unit and its work, two panels shared their lived experience. Guests included Family Voices United to End Racism against Children and Youth with Special Health Care Needs and Families, and youth from the Office of Children’s Mental Health. The first panel told stories about raising children with special health care needs as a family of color and shared the challenges of getting equitable health care. The second panel reflected on their experiences as youth who are gender fluid and what it is like to live in our society with different identities. Evaluations were completed by 78 participants and nearly all (96%) agreed that the information was useful and indicated that the objective – describe two strategies that create opportunities to connect and engage stakeholders in conversations necessary to dismantle racism – was met (98%). Comments included:

 

• “Presenters were so compelling to listen to throughout their presentation. I appreciate every single one for sharing their stories to give us all better perspective”

 

• “I LOVED all of the presenters today. This was an extremely powerful Summit. They were very courageous to share their stories.”

 

The genetics system integration hub planned and implemented the annual 2021 Wisconsin Genetics Exchange – this year held virtually in partnership with Medical College of Wisconsin – with an audience of 147 participants. Genetics system integration hub staff reviewed and updated the online Wisconsin Newborn Screening continuing medical education module, accessed by 165 learners in 2021. Additional continuing education was provided in partnership with the Midwest Genetics Network with a shared purpose of promoting equity and access to genetic services. Genetics system integration hub staff contributed as presenters to two of four sessions in a series for primary care providers sponsored by Midwest Genetics Network called “Improving Care for Developmental Disabilities and Dysmorphic Features.” There were 66 learners who participated in the series.

 

The Title V-funded Parent-to-Parent program in Wisconsin experienced significant challenges throughout the year. New staff replaced veteran staff who had been with the program for nearly 20 years. In addition, the matching database crashed and was not able to be fixed, so the contact information for over 500 participants was lost. The program spent the second half of the year rebuilding the program, which included a developing a new website that is more user friendly and better represents the of diversity of families. They conducted a statewide social media recruitment for additional support parents. A new database was created to capture both referral and support parent contact information going forward. There were over 150 referrals to the program but only 37 matches were made. Moving into the coming year, more staff time has been dedicated to assist this program with re-establishing its reach.

 

Title V staff – along with Children and Youth with Special Health Care Needs Network partners – were part of the Wisconsin Care Integration Initiative grant of the Waisman Center, serving on both its advisory team and the larger Learn the Signs Act Early state team. This project aims to improve linkage to services for children with autism spectrum disorder and their families.

 

Success Story: A father contacted a Regional Center with questions about “out of home” treatment options for his 14-year-old son. His son has an Autism diagnosis and was displaying more challenging behaviors, with the most problematic being sexual in nature. This impacted the whole family. The father stated that things were going okay academically, but his son had had a few socially inappropriate interactions with others.

 

Staff confirmed that this child was being served by the Children’s Long-Term Support Medicaid waiver and learned that the family had an upcoming home visit with their service and supports coordinator. Staff encouraged the family to be transparent with the service and supports coordinator because that program needed to know that the living situation may need to change, and it would be important to discuss all recommendations or actions they can or will take prior to an out of home placement. The primary care physician also reached out to the Regional Center for consultation on behalf of this child. Staff connected with the father, one father to another. They discussed residential treatment options and supports to reduce the family’s stress. In a follow up contact, the father stated that he had made progress to help his son access the additional supports he needed for his medical home.

 

Develop and implement best practices for increasing data capacity of existing data sources and expanding partners’ capacity to use and leverage data to ensure the needs of underserved families are met.

 

Children and Youth with Special Health Care Needs Unit staff collaborated with ABC for Health to develop a survey of the Children and Youth with Special Health Care Needs Network members on data collection methods, collection of demographic data, and comfort with collecting these data. The survey was conducted in the summer and responses were analyzed in the fall. Among 26 responding staff who interview with families, more than half (54%) indicated they feel extremely confident they can explain to families why they are collecting demographic data. Respondents were asked how frequently they get pushback when asking about households, income, race, health conditions, and insurance coverage and 38% reported that they never get pushback. Additionally, 54% sometimes get pushback and only 8% often get pushback.

 

The Children and Youth with Special Health Care Needs team continued to partner with the Health Resources and Services Administration and the US Census Bureau on a statewide oversample in the National Survey of Children’s Health. The second year of data collection was completed throughout 2021. In October, data for the first year of the oversample were received and analysis began for the CYSHCN team’s first ever surveillance report.

 

To strengthen family, youth, and community member engagement, all CYSHCN programs will use the Community Engagement Assessment Tool to measure progress and design an annual action plan.

 

Ten of the Children and Youth with Special Health Care Needs Network partners completed the Community Engagement Assessment Tool in 2021. Plans for improvement included the following activities:

 

Providing staff education: Learning sessions were conducted with Katie Hamm.

 

Creating a Spanish email template for information and referral follow up messages: Although interpretation is available for Spanish speaking families, the follow up emails have traditionally been offered only in English. Now there is an email template that not only recounts what was discussed on the phone, but also includes desired resources in Spanish.

 

Updating websites translated into Spanish: Several programs worked on updating their websites by adding Spanish translation as well as images that represent people from a variety of cultures.

 

Hiring staff: Four programs were able to hire staff who are bilingual in Spanish and English. This has tremendously improved the ability to communicate with that population and better understand their cultural needs.

 

National Performance Measure 12: Percent of children 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. In choosing to address this national performance measure, Wisconsin’s main goal is to increase the percent of children with special health care needs in Wisconsin, ages 12 through 17, who receive the services and supports necessary to transition to adult health care from 20.5% to 23% (+10%) by 2025 (baseline is from 2017-2018 National Survey of Children’s Health). Wisconsin has exceeded the target of 23% and is significantly greater than the nationwide average (22.5%), where 34% 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 2019-2020).

 

Evidence-based Strategy Measures

 

Measure	2021 Data
Percent of Regional Center information and referral staff who report competence in explaining youth health care transition concepts	92%
Percent of participants trained on youth health care transition concepts who report a change in knowledge, skills, or intended behavior following the training	98%
Percent of systems or practices that have a transition policy or guideline (formal written commitment)	collection of these data was delayed and will not be complete until late 2022

 

To promote best practice in youth health care transition planning, develop and disseminate consistent strategies and tools with common messaging.

 

To promote common messaging and best practices, the websites for the youth health care transition initiative and Regional Centers link to the Got Transition website. There were 2,694 browsing sessions and 2,083 new users of the Got Transition website in 2021.

 

The youth health care transition initiative maintained regular contact with the Children and Youth with Special Health Care Needs Network through participation in quarterly Network Directors meetings, calls with Regional Center staff, and collaborating on promoting and delivering transition training events for families. Regional Centers discussed youth health care transition concepts with 41% of the traditional contacts with families regarding their youth ages 12 through 25 years old.

 

There were 22 parent or youth advisors involved in 2021 youth health care transition initiative activities by presenting at virtual conferences, recording videos, reviewing materials, and providing their perspective during meetings of the Wisconsin Transition Planning Coalition. Engaging with people who have the lived experience has strengthened the messages about the importance of youth health care transition.

 

In 2021, the Wisconsin Integrated Transition Planning Project aimed to develop an integrated transition pilot plan for youth and adults with intellectual and/or developmental disabilities in medically underserved Wisconsin communities, for achieving coordinated access to adult health care, educational, vocational, and other services to support community living. Several Children and Youth with Special Health Care Needs staff from Title V, Regional Centers, and the youth health care transition initiative are part of this project, resulting in more connections and opportunities for technical assistance including the Rhinelander School District, Headwaters Incorporated, Barron County Developmental Services Inc, Inclusa, University of Wisconsin Whitewater, LOV Inclusively, University of Wisconsin Eau Claire School of Public Health, Bridge to Community Health, National Alliance on Mental Illness Wisconsin, TransCen, and YMCA of Metro Milwaukee among others.

 

As mentioned in the medical home section of this report, a medical home and youth health care transition competencies assessment was implemented in 2021. In the competency self-assessment there are 21 questions related to youth health care transition knowledge and skill. In 2021, 11 of the 12 (92%) Regional Center staff were competent or proficient on more than 50% of the Youth Heath Transition concepts. In addition, 10 (83%) of those staff were competent on at least 80% of the concepts.

 

Success Story: In February 2021, a Regional Center staff member talked with a mother about her daughter’s needs. The staff connected the family to information in an email. The case was lost to follow-up and closed in May. The parent finally responded in November 2021:

 

“I just wanted to say thank you and give you a status update. I know you do not get to hear how your good work panned out. I was able to follow up with the resource center, then onto the adult aging disability center. She was approved for long term care. We are making our way onto that. Next, we are finalizing the last details from her disability application. My daughter was able to use some of her 529 fund in an ABLE account and she has now moved into her own accessible positive apartment. She also got a cat which has helped her therapeutically as well. Still lots to do, but just wanted to take a moment to thank you. The list you provided was my road map. It has been successful thus far. I was not able to reach out as my caregiving was so high then. Now I'm even able to get a job. Grateful for how far we have come.”

 

To increase knowledge and skills about youth health care transition, implement trainings, use quality improvement strategies, and provide technical assistance opportunities for families, community professionals, healthcare providers, and healthcare systems.

 

In 2021, four curricula were offered virtually in collaboration with the youth health care transition initiative. The fifth curriculum, “What’s After High School?” – offered by Family Voices of Wisconsin – addressed transition more generally and included similar content and messaging on the topic of healthcare transition. Nearly 900 participants were trained through 56 youth health care transition training sessions in 2021 and evaluations from participants were very positive.

 

Build Your Bridge: For families of youth who are of transition age, this curriculum was offered 4 times, reaching 28 people. It was modified to a 60-minute virtual session with the understanding that participants had watched a brief overview of youth health care transition prior to the online training to reduce the screen time for families. Whenever a training was provided to an audience of family members, they were asked to share something they would do as a result of attending the session. For this training, parents identified activities such as:

 

• “Develop more of a safety plan”

 

• “Collaborate with others who could play a role”

 

• “Help my 17-year-old understand their health care responsibilities and what resources are available”

 

Dreaming Differently: This curriculum utilizes the same workbook as Build Your Bridge and has material selected for families whose children have complex health conditions and intellectual and/or developmental disabilities. It was piloted in 2021 and was well received by the 18 participants at 3 sessions. Participants shared that because of attending the session:

 

• “I will look into care mapping"

 

• “Start writing our letter of intent”

 

• “I will create a Shared Plan of Care"

 

• “I will discuss adult providers with my son’s current pediatrics providers.”

 

One participant shared, “Thank you all! I gathered a lot of information that previous to the training was not always concrete and clear and feel it was a highly beneficial training to attend.”

 

Bridging the Gap: The youth health care transition initiative supported dissemination of this curriculum for mixed audiences of families and professionals to increase awareness of youth health care 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 the youth health care transition initiative and Regional Center staff, 22 sessions were provided, reaching 468 participants. All participants completing an evaluation of these sessions indicated that they met the learning objectives, which include defining youth health care transition, describing the youth health care transition assessment, accessing tools to include health goals in transition planning and including health and health care planning when discussing options after high school.

 

Closing the Gap: This is an educational series for providers and health systems. This curriculum was offered at 4 events, reaching 92 professionals. Content is tailored to professional audiences and topics requested included “Healthcare Provider’s Guide to Working with Individuals with intellectual and/or developmental disabilities,” “Supported Decision-Making and Guardianship,” or simply “Supporting Youth to Adult Health Care Transition.”

 

What’s After High School?: Family Voices of Wisconsin conducted 23 training events that reached 285 participants. Afterwards, attendees indicated that as a result of this training, they would:

 

• “Find out more information regarding alternatives to ‘guardianship’”

 

• “Call my son’s social worker to get the next step going”

 

• “Try to create a timeline of things to get done before my child turns 18.”

 

Total participation in these virtual training activities – 891 attendees – met statewide goals for 2021, and partly due to COVID-19 and the opportunities for reaching out to community audiences, has shifted to more general education versus classes for families or in-service training for professionals. It appears that competing priorities, different ones for families and professionals, were a factor in attending events for both groups. Unfortunately, only about half of the participants who register for a training event attend.

 

Multiple videos were produced involving youth health care transition initiative youth and family advisors. These short videos contain messages regarding health care transition strategies to be included in the youth health care transition initiative’s training curricula. These videos will highlight the voices of youth and their parents, and most will be available on their website in 2022.

 

One of the Regional Centers offered “Transition Talk Tuesdays” in their region of the state. By collaborating with school districts and adult service providers, they offered a multi-week program where each week’s talk addressed one of the elements of transition from being a youth to an adult. One of the weeks focused on the content of youth health care transition.

 

In Wisconsin there are “County Community on Transition” groups – groups of stakeholders who have made the commitment to collaborate around identifying barriers to transition planning and to organize the supports needed and to develop solutions for youth with disabilities in the local county they serve. Regional Center staff participated in 63% of the counties’ activities in 2021.

 

To build state healthcare system capacity across the state, evaluate and build upon existing champion models of transition service delivery and reimbursement.

 

The youth health care transition initiative conducted quarterly Learning Community online video sessions in 2021. They maintain a listserv of over 450 members who are the primary audience for the Learning Communities. Most people who attended the sessions were professionals serving children and youth with special health care needs and their families through state and network partners, schools, and healthcare systems. On average, 22 people attended each learning community session, ranging from 16 to 32 participants at each. Evaluation from participants occurs through a survey link shared at the end of the virtual session and sent later with the link to the recording and slides. Among respondents, nearly all indicated they were better able to complete learning objective items following the webinar.

 

In 2021, the youth health care transition initiative began reaching new providers and health care systems through interviews as a part of an environmental scan to determine which health care systems in Wisconsin have a transition policy, and what these organizations are doing to promote more successful transitions from pediatric to adult health care.

 

Initial data have been collected on health systems in Wisconsin. A process for interviewing key stakeholders was planned and piloted with the Gundersen Health System. The interview process was then revised slightly, and three additional interviews were conducted with selected health care systems (Froedert, Ascension, University of Wisconsin Health). One of these systems has a policy in place – University of Wisconsin Health has a Best Practice Guideline. One of the three systems have a transition policy or guideline in place, and none of the systems reported working on any plans for policy. The goal is to conduct interviews with key informants of the 10 largest health systems in Wisconsin. The pandemic made it difficult to identify specific people within a health care organization working on youth health care transition at the system level, so this activity is planned to continue through 2022.

 

Early indicators from the environmental scan work suggests that there are no formal systems in place to support transition activities in major health care systems in Wisconsin, and that youth health care transition continues to occur on a local level by a “word of mouth” system. Early data indicate there is significant opportunity to develop organization and/or state level transition supports. An educational module for adult providers titled “Healthcare Provider’s Guide to Working with Individuals with Intellectual/Developmental Disability” debuted in early December 2021. Providing this content may assist in identifying additional providers in health care systems in the state that are motivated and comfortable accepting young adults with special needs into their practices.

 

To strengthen family, youth, and community member engagement, all Children and Youth with Special Health Care Needs Programs will use the Community Engagement Assessment Tool to measure progress and design an annual action plan.

 

More information about this strategy can be found in the NPM11 (Medical Home) narrative.