III.E.2.c. State Action Plan - CSHCN - Annual Report - Illinois - 2023
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Children and Youth with Special Health Care Needs - Annual Report
Illinois’ priorities for the Children and Youth with Special Health Care Needs Domain are:
- Strengthen transition planning and services for adolescents and young adults, including youth with special health care needs. (Priority #6)
- Convene and collaborate with community-based organizations to improve and to expand services and supports serving children and youth with special health care needs. (Priority #7)
The care and well-being of children and youth with special healthcare needs remains and ongoing priority in Illinois. In 2019-2020 adolescents with special healthcare needs were more likely than their peers without special needs to receive a well visit, 92.6% compared to 73.4% (NPM #10). Despite this success, children and youth with special healthcare needs experience significant barriers to care. are less likely than children without special needs to receive care in a medical home, 40.6% compared to 52.7%. In addition, children with special healthcare needs are less likely to have adequate insurance, a serious concern for their ongoing access to care.
In addition to barriers to access in the healthcare system, children with special healthcare needs experience barriers to health in their communities. They are less likely than children without special needs to get an hour of physical activity every day, underscoring the importance of inclusive and adaptive physical activity resources. They are also much more likely, 44.9% compared to 26%, to be victims of bullying by peers. This presents risks to their social and emotional health.
The UIC-DSCC utilized the following strategies and activities to address the Children and Youth with Special Health Care Needs Domain priorities:
The mission of UIC-DSCC is to partner with families and communities to help children and youth with special health care needs connect to services and to resources. UIC-DSCC’s work across the state helps UIC-DSCC to develop a deeper awareness of issues impacting CYSHCN and their families. UIC-DSCC’s work also helps to create relationships with various programs serving children that can be leveraged when developing solutions to problems or addressing strategic initiatives. The vision of the program is that children and youth with special health care needs and their families are at the center of a seamless support system that improves the quality of their lives.
UIC-DSCC has care coordination programs serving children with special needs and works to address systemic issues impacting CYSHCN throughout the state. In FY21, UIC-DSCC provided services to more than 6,500 individuals across Illinois, and provided resource and referral information to another 6,000 children who were not interested or were ineligible for ongoing care coordination services.
UIC-DSCC care coordination services consist of three programs: Core Program, Home Care Program, and Connect Care Program. The Core Program is guided by Illinois administrative rule, which was updated in October 2018. This program serves a broad population of CYSHCN and is funded by Title V. A Core Program Enrollment and Resource Team began piloting in summer 2019 in Chicago, and in FY20, it expanded to two additional offices to now serve Chicago, Lombard, and Springfield. The goal of the team is to improve the ability of UIC-DSCC to assist CYSHCN and their families not enrolled in a care coordination program.
While the Core Program is a key program in Title V’s portfolio, in 2018 UIC-DSCC lowered the cap for individual financial assistance to $7,500. UIC-DSCC continues to work to understand the gap-filling needs of program participants while also working to control spending. In FY21, UIC-DSCC kicked off an internal performance improvement project with a focus of simplifying the financial assistance process and helping to improve UIC-DSCC’s control of spending related to financial assistance using 6 Sigma methodology. This project continues into FY22.
The Home Care Program, another program offered by UIC-DSCC, serves medically complex individuals who receive in-home, shift-based nursing care as a Medicaid Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit or who are enrolled in the Medically Fragile Technology Dependent Waiver. This program is administered and funded by HFS. UIC-DSCC provides services necessary for the operation of this program and provides care coordination. The program has a dedicated enrollment team, six regional teams, and a staffing support team dedicated to helping address systematic issues pertaining to home nurse staffing. As part of the scope of the Home Care Program, UIC-DSCC provides quality oversight of home nursing agencies and medical equipment companies throughout the state serving Medically Fragile and Technology Dependent (MFTD) waiver recipients.
Other Activities Focused on Population-Based Approaches. UIC-DSCC continued its collaboration to reduce the number of infants with hearing loss who “drop out” of the service delivery system. This program is funded by an Early Hearing Detection and Intervention (EHDI) federal grant. UIC-DSCC began developing information sheets with facts on impacts of the social determinants of health (SDOH) on the CYSHCN population. Informational sheets will be broken into the following topics: general SDOH, school and community, economic stability, education, health literacy, and access to health care. The Title V epidemiology team will help with this activity.
Prior to the COVID-19 pandemic, UIC-DSCC was actively participating in the “Big Five States” workgroup on population-based approaches to serving CYSHCN and in the National Pediatric Home Health Care Panel. Once this workgroup reconvenes, UIC-DSCC will continue its participation.
Specific to children with medical complexity in Illinois, UIC-DSCC has convened an Emergency Preparedness Workgroup. This group will be working across the state to develop education and resources that can be shared with families of individuals with medical complexity and relevant community partners.
To better understand the perspectives of family caregivers of children with medical complexity, listening sessions were held in the spring of 2020 as part of larger policy analysis exploring support available to caregivers of children with medical complexity. This qualitative approach of engaging caregivers of provided valuable insight and was incorporated into the policy analysis and policy brief. These documents were shared with Illinois Medicaid leadership and helped to shape the Illinois proposal for Federal Medical Assistance Percentage (FMAP) to include expansion of self-direction with parents and family members serving as paid caregivers. The work related to these system changes carries into FY22. The listening sessions were also written about separately and will be published in summer 2021 in Home Healthcare Now.
UIC-DSCC was asked by University of Illinois Chicago Department of Pediatrics and Department of Human Disability to serve as a partner in a research project focusing on the impact of behavioral health services and the care coordination provided by UIC-DSCC. In FY21 UIC-DSCC worked with the research team in development of the initial grant and research proposal.
Medical Home. In FY21, UIC-DSCC continued to train its care coordinators to help families develop the skills to recognize, to advocate for, and to successfully participate in patient-centered medical care. It also continued to promote the National Center for Medical Home Implementation through staff training and by listing Illinois-specific efforts on its public website and social media platforms.
Transition Activities. UIC-DSCC transition specialists researched the Got Transition updated toolkit and developed an outline for how the technical assistance process would look, including the development of a guide for the practice on the tech assistance process. As of the end of FY21, Amita Health was preparing to implement a transition policy in their practice after receiving technical assistance in the development and implementation of this policy from the UIC-DSCC transition specialists. Due to competing priorities placed on health care systems during the ongoing COVID-19 pandemic, UIC-DSCC has been challenged to find health care systems that will in engage in this partnership. For example, OSF HealthCare had initially agreed to partner on this but, in late FY21, asked to delay the start of their partnership. UIC-DSCC is seeking additional sites and will continue to do so in FY22.
UIC-DSCC’s continues to work with families to develop a transition related goal in a participant’s person-centered care plan for participants 12 years or above. As of the close of FY21, UIC-DSCC averaged 62% across care coordination programs for compliance with this. UIC-DSCC has committed to providing care coordination teams annual education on at least one transition related topic; provides transition tips and tools to use with youth, families, and providers; has transition readiness incorporated into care coordination policy and procedures; and provides public facing education on transition or transition related events on social media.
In FY21, UIC-DSCC continued serving as a co-chair for the annual Statewide Transition Conference. This conference is normally held in October or November each year (for 15 plus years) with a varied audience of approximately 600 individuals. Due to the COVID-19 pandemic, the fall 2020 conference was canceled. UIC-DSCC did attempt to partner with health care providers to see about an online conference which ultimately was not held as the intended audience of health care providers was already strained due to the pandemic. In FY21, UIC-DSCC reconvened with the conference planning group to prepare for the fall 2021 conference. As of the close of FY21, more than 30 youth and members of their family registered for the conference scheduled for November 2021.
Another notable UIC-DSCC transition activity is its development of a youth transition council (YTC). Using the framework developed by a LEND fellow who worked with UIC-DSCC in FY20, staff completed a comparison analysis of its existing Family Advisory Council (FAC) and the YTC to determine how they will align yet serve different needs. UIC-DSCC is now trying to identify staff that will be dedicated to the YTC and the role the FAC’s parent chairperson with the YTC.
Family Engagement. In FY20, UIC-DSCC committed to a complete revision of the Family Advisory Committee structure. At this time the participation from families was low and was limited to only family members of an individual enrolled in a UIC-DSCC care coordination program. A workgroup was started and continued into FY21. A new FAC structure was developed with a UIC-DSCC FAC navigator and FAC Family co-chair leading. Recruitment for families took place in early FY21 and the first revised meeting was held in February 2021. The first meeting was closed to only FAC members; 14 families participated. Under the new FAC structure, monthly meetings alternate between being members only and open to all families regardless of membership or enrollment in UIC-DSCC programs. This approach allowed UIC-DSCC to gather insight from more caregivers of CYSHCN across the state. The first open forum meeting was held in August 2021. The group focused on updates on UIC-DSCC’s resources list, communications, quality improvement, Federal Medical Assistance Percentage (FMAP) initiatives, and home care nursing allocation. Also, UIC-DSCC staff continues to work with the Family Advisory Council, providers, and other stakeholders to identify and to disseminate additional resource materials on health care transition.
Coordination/Collaboration with key stakeholders to address barriers (including financial assistance). In July 2019, the Illinois Medicaid Program notified UIC-DSCC that children with special health care needs would be moving into mandatory managed care. UIC-DSCC was asked to partner with the six Medicaid Managed Care Plans to continue serving individuals who were already enrolled in the UIC-DSCC Core Program. UIC-DSCC developed a new care coordination program, Connect Care, in order to continue serving this population. The development of relationships with Medicaid Managed Care Plans has allowed UIC-DSCC to make additional relationships with additional systems serving CYSHCN.
The Federal Medical Assistance Percentage (FMAP) opportunity was made available to states in summer 2020 as a way to improve or expand Home and Community Based Waiver (HCBS) services. UIC-DSCC worked closely with the HFS and other key stakeholders, such as families, health care providers, and community providers, to develop recommendations to improve upon services provided to individuals enrolled in the UIC-DSCC Home Care Program. Recommendations included 1)expansion of self-direction in the Medically Fragile Technology Dependent HCBS waiver to also include payment to unlicensed parent/family caregivers, 2) the development of a web-based portal to enable families and home nursing agencies to cross communicate coverage needs, 3) provision of additional training opportunities for both family and home nursing caregivers to help lead to improvements in the quality of care in the home, and 4) to increase the rates of pay for home nurses when attending training or providing in-home respite care to match 2019 rate increases that did not impact these two services. These recommendations were agreed to by HFS and approved by federal CMS. Work to implement these system changes will continue into FY22.
Several other system projects were started in FY21 between HFS and UIC-DSCC. A workgroup was started to explore challenges related to the process for individuals to request home or vehicle modifications. This workgroup had compiled suggested improvements to HFS that will be implemented in FY22. Another project involved additional research into the availability of adult facility-based respite for individuals over 21 years of age with medical complexity. This is not a service currently available. UIC-DSCC has found a provider willing to help provide the service and began working with HFS and IDPH (licensing) to see how this could become a covered service. UIC-DSCC was also brought into discussions hosted by HFS in response to difficulties from families who receive personal assistant care through HCBS waivers and associated challenges related to home based schooling during the pandemic. In 2020, UIC-DSCC helped present a need to HFS for the state-plan to add coverage for solid foods for individuals with PKU or related disorders. HFS did agree to make this change, however, the provider enrollment process with Medicaid is not set up to easily enroll providers. Throughout FY21, UIC-DSCC has helped to partner with the medical food providers, HFS, and Medicaid MCOs to help overcome the barriers with enrollment.
UIC-DSCC continues to work on improving its relationship with the Department of Children and Family Services (DCFS) on the lack of safety planning for medically complex children in DCFS’s medical neglect investigations. UIC-DSCC is working to develop an internal procedure with a group of key individuals to help support DCFS’ investigators and to provide UIC-DSCC staff knowledge on how to escalate concerns/issues. UIC-DSCC was successful in getting DCFS to implement an internal policy that will assign a DCFS nurse to cases involving children with medical complexity.
Illinois LEND Program. In FY21, UIC-DSCC and LEND met to begin planning the development of a parent support group for parents of medically complex children. The three LEND trainees will provide a virtual opportunity in FY22 for caregivers of individuals enrolled in the DSCC Home Care Program to receive education on a relevant topic to their child’s care and then have the opportunity for connection and dialogue.
Workforce Development (Training). Staff received training on transiting to independence social and emotional health, motivation interviewing, mental health, vaccinations, HIPPA, fraud waste and abuse, medical home, mandated reporting, cultural competency and sensitivity, and personal safety. Approximately 87% percent of the staff exceeded UIC-DSCC’s goal of 20 hours of training per year, while 8% completed between 15 – 19 hours and 5% completed between 10 – 14 hours.
UIC-DSCC also demonstrated its commitment to establish and maintain partnerships to support its diversity, equity, and inclusion (DEI) initiative. UIC Office of Access and Equity (OAE) and Office of Diversity agreed to assist UIC-DSCC to: (1) review its organizational policies and procedures to identify opportunities for development or improvement on DEI and (2) develop surveys and assist with listening sessions to capture actual experiences and perceptions of the staff members. Currently, UIC-DSCC is waiting for the data to be analyzed and plans to use the findings to guide policy and procedure development and to shed light on additional training opportunities.
Another notable workforce development activity is UIC-DSCC’s willingness to serve as a clinical rotation site for students in nursing or social work programs. Clinical rotations were paused in March 2020 due to the COVID-19 pandemic but resumed in FY21. As of the end of FY21, 47% of DSCC regional teams had worked with at least one intern or nursing student during the year. The Advanced Practice fellowship in behavioral developmental pediatrics that UIC-DSCC had previously served as a clinical partner to has not resumed since the pandemic.
Presentations and Meetings. UIC-DSCC staff participated in a variety of state-wide councils and meetings pertaining to CYSHCN, including the FY21 Annual AMCHP meeting and the National American Academy of Pediatrics (AAP) CYSHCN Café where staff partnered the Illinois Chapter of the AAP to discuss the return to care for CYSHCN post pandemic. UIC- DSCC leadership provided the keynote presentation for the ICAAP ABC Conference. Staff have also presented to bachelor’s level nursing students on the topic of transition to adulthood. The UIC-DSCC Home Care Quality Improvement (HCQI) team provided the first of a two-part informational webinar series to enrolled nursing agencies to provide information on new and existing requirements.
Members of the UIC-DSCC team participated in specialty team rounds with different providers across the state. The team rounds served as an opportunity for UIC-DSCC staff to contribute knowledge on various resources that may be of assistance to patients seen in the clinics, in particular, information on UIC-DSCC’s care coordination programs and resources addressing social determinants of health that impact CYSHCN. In FY21, UIC-DSCC participated in more than 40 different team rounds across the state.
Children and Youth with Special Health Care Needs - Annual Report
Illinois’ priorities for the Children and Youth with Special Health Care Needs Domain are:
- Strengthen transition planning and services for adolescents and young adults, including youth with special health care needs. (Priority #6)
- Convene and collaborate with community-based organizations to improve and to expand services and supports serving children and youth with special health care needs. (Priority #7)
The care and well-being of children and youth with special healthcare needs remains and ongoing priority in Illinois. In 2019-2020 adolescents with special healthcare needs were more likely than their peers without special needs to receive a well visit, 92.6% compared to 73.4% (NPM #10). Despite this success, children and youth with special healthcare needs experience significant barriers to care. are less likely than children without special needs to receive care in a medical home, 40.6% compared to 52.7%. In addition, children with special healthcare needs are less likely to have adequate insurance, a serious concern for their ongoing access to care.
In addition to barriers to access in the healthcare system, children with special healthcare needs experience barriers to health in their communities. They are less likely than children without special needs to get an hour of physical activity every day, underscoring the importance of inclusive and adaptive physical activity resources. They are also much more likely, 44.9% compared to 26%, to be victims of bullying by peers. This presents risks to their social and emotional health.
The UIC-DSCC utilized the following strategies and activities to address the Children and Youth with Special Health Care Needs Domain priorities:
The mission of UIC-DSCC is to partner with families and communities to help children and youth with special health care needs connect to services and to resources. UIC-DSCC’s work across the state helps UIC-DSCC to develop a deeper awareness of issues impacting CYSHCN and their families. UIC-DSCC’s work also helps to create relationships with various programs serving children that can be leveraged when developing solutions to problems or addressing strategic initiatives. The vision of the program is that children and youth with special health care needs and their families are at the center of a seamless support system that improves the quality of their lives.
UIC-DSCC has care coordination programs serving children with special needs and works to address systemic issues impacting CYSHCN throughout the state. In FY21, UIC-DSCC provided services to more than 6,500 individuals across Illinois, and provided resource and referral information to another 6,000 children who were not interested or were ineligible for ongoing care coordination services.
UIC-DSCC care coordination services consist of three programs: Core Program, Home Care Program, and Connect Care Program. The Core Program is guided by Illinois administrative rule, which was updated in October 2018. This program serves a broad population of CYSHCN and is funded by Title V. A Core Program Enrollment and Resource Team began piloting in summer 2019 in Chicago, and in FY20, it expanded to two additional offices to now serve Chicago, Lombard, and Springfield. The goal of the team is to improve the ability of UIC-DSCC to assist CYSHCN and their families not enrolled in a care coordination program.
While the Core Program is a key program in Title V’s portfolio, in 2018 UIC-DSCC lowered the cap for individual financial assistance to $7,500. UIC-DSCC continues to work to understand the gap-filling needs of program participants while also working to control spending. In FY21, UIC-DSCC kicked off an internal performance improvement project with a focus of simplifying the financial assistance process and helping to improve UIC-DSCC’s control of spending related to financial assistance using 6 Sigma methodology. This project continues into FY22.
The Home Care Program, another program offered by UIC-DSCC, serves medically complex individuals who receive in-home, shift-based nursing care as a Medicaid Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit or who are enrolled in the Medically Fragile Technology Dependent Waiver. This program is administered and funded by HFS. UIC-DSCC provides services necessary for the operation of this program and provides care coordination. The program has a dedicated enrollment team, six regional teams, and a staffing support team dedicated to helping address systematic issues pertaining to home nurse staffing. As part of the scope of the Home Care Program, UIC-DSCC provides quality oversight of home nursing agencies and medical equipment companies throughout the state serving Medically Fragile and Technology Dependent (MFTD) waiver recipients.
Other Activities Focused on Population-Based Approaches. UIC-DSCC continued its collaboration to reduce the number of infants with hearing loss who “drop out” of the service delivery system. This program is funded by an Early Hearing Detection and Intervention (EHDI) federal grant. UIC-DSCC began developing information sheets with facts on impacts of the social determinants of health (SDOH) on the CYSHCN population. Informational sheets will be broken into the following topics: general SDOH, school and community, economic stability, education, health literacy, and access to health care. The Title V epidemiology team will help with this activity.
Prior to the COVID-19 pandemic, UIC-DSCC was actively participating in the “Big Five States” workgroup on population-based approaches to serving CYSHCN and in the National Pediatric Home Health Care Panel. Once this workgroup reconvenes, UIC-DSCC will continue its participation.
Specific to children with medical complexity in Illinois, UIC-DSCC has convened an Emergency Preparedness Workgroup. This group will be working across the state to develop education and resources that can be shared with families of individuals with medical complexity and relevant community partners.
To better understand the perspectives of family caregivers of children with medical complexity, listening sessions were held in the spring of 2020 as part of larger policy analysis exploring support available to caregivers of children with medical complexity. This qualitative approach of engaging caregivers of provided valuable insight and was incorporated into the policy analysis and policy brief. These documents were shared with Illinois Medicaid leadership and helped to shape the Illinois proposal for Federal Medical Assistance Percentage (FMAP) to include expansion of self-direction with parents and family members serving as paid caregivers. The work related to these system changes carries into FY22. The listening sessions were also written about separately and will be published in summer 2021 in Home Healthcare Now.
UIC-DSCC was asked by University of Illinois Chicago Department of Pediatrics and Department of Human Disability to serve as a partner in a research project focusing on the impact of behavioral health services and the care coordination provided by UIC-DSCC. In FY21 UIC-DSCC worked with the research team in development of the initial grant and research proposal.
Medical Home. In FY21, UIC-DSCC continued to train its care coordinators to help families develop the skills to recognize, to advocate for, and to successfully participate in patient-centered medical care. It also continued to promote the National Center for Medical Home Implementation through staff training and by listing Illinois-specific efforts on its public website and social media platforms.
Transition Activities. UIC-DSCC transition specialists researched the Got Transition updated toolkit and developed an outline for how the technical assistance process would look, including the development of a guide for the practice on the tech assistance process. As of the end of FY21, Amita Health was preparing to implement a transition policy in their practice after receiving technical assistance in the development and implementation of this policy from the UIC-DSCC transition specialists. Due to competing priorities placed on health care systems during the ongoing COVID-19 pandemic, UIC-DSCC has been challenged to find health care systems that will in engage in this partnership. For example, OSF HealthCare had initially agreed to partner on this but, in late FY21, asked to delay the start of their partnership. UIC-DSCC is seeking additional sites and will continue to do so in FY22.
UIC-DSCC’s continues to work with families to develop a transition related goal in a participant’s person-centered care plan for participants 12 years or above. As of the close of FY21, UIC-DSCC averaged 62% across care coordination programs for compliance with this. UIC-DSCC has committed to providing care coordination teams annual education on at least one transition related topic; provides transition tips and tools to use with youth, families, and providers; has transition readiness incorporated into care coordination policy and procedures; and provides public facing education on transition or transition related events on social media.
In FY21, UIC-DSCC continued serving as a co-chair for the annual Statewide Transition Conference. This conference is normally held in October or November each year (for 15 plus years) with a varied audience of approximately 600 individuals. Due to the COVID-19 pandemic, the fall 2020 conference was canceled. UIC-DSCC did attempt to partner with health care providers to see about an online conference which ultimately was not held as the intended audience of health care providers was already strained due to the pandemic. In FY21, UIC-DSCC reconvened with the conference planning group to prepare for the fall 2021 conference. As of the close of FY21, more than 30 youth and members of their family registered for the conference scheduled for November 2021.
Another notable UIC-DSCC transition activity is its development of a youth transition council (YTC). Using the framework developed by a LEND fellow who worked with UIC-DSCC in FY20, staff completed a comparison analysis of its existing Family Advisory Council (FAC) and the YTC to determine how they will align yet serve different needs. UIC-DSCC is now trying to identify staff that will be dedicated to the YTC and the role the FAC’s parent chairperson with the YTC.
Family Engagement. In FY20, UIC-DSCC committed to a complete revision of the Family Advisory Committee structure. At this time the participation from families was low and was limited to only family members of an individual enrolled in a UIC-DSCC care coordination program. A workgroup was started and continued into FY21. A new FAC structure was developed with a UIC-DSCC FAC navigator and FAC Family co-chair leading. Recruitment for families took place in early FY21 and the first revised meeting was held in February 2021. The first meeting was closed to only FAC members; 14 families participated. Under the new FAC structure, monthly meetings alternate between being members only and open to all families regardless of membership or enrollment in UIC-DSCC programs. This approach allowed UIC-DSCC to gather insight from more caregivers of CYSHCN across the state. The first open forum meeting was held in August 2021. The group focused on updates on UIC-DSCC’s resources list, communications, quality improvement, Federal Medical Assistance Percentage (FMAP) initiatives, and home care nursing allocation. Also, UIC-DSCC staff continues to work with the Family Advisory Council, providers, and other stakeholders to identify and to disseminate additional resource materials on health care transition.
Coordination/Collaboration with key stakeholders to address barriers (including financial assistance). In July 2019, the Illinois Medicaid Program notified UIC-DSCC that children with special health care needs would be moving into mandatory managed care. UIC-DSCC was asked to partner with the six Medicaid Managed Care Plans to continue serving individuals who were already enrolled in the UIC-DSCC Core Program. UIC-DSCC developed a new care coordination program, Connect Care, in order to continue serving this population. The development of relationships with Medicaid Managed Care Plans has allowed UIC-DSCC to make additional relationships with additional systems serving CYSHCN.
The Federal Medical Assistance Percentage (FMAP) opportunity was made available to states in summer 2020 as a way to improve or expand Home and Community Based Waiver (HCBS) services. UIC-DSCC worked closely with the HFS and other key stakeholders, such as families, health care providers, and community providers, to develop recommendations to improve upon services provided to individuals enrolled in the UIC-DSCC Home Care Program. Recommendations included 1)expansion of self-direction in the Medically Fragile Technology Dependent HCBS waiver to also include payment to unlicensed parent/family caregivers, 2) the development of a web-based portal to enable families and home nursing agencies to cross communicate coverage needs, 3) provision of additional training opportunities for both family and home nursing caregivers to help lead to improvements in the quality of care in the home, and 4) to increase the rates of pay for home nurses when attending training or providing in-home respite care to match 2019 rate increases that did not impact these two services. These recommendations were agreed to by HFS and approved by federal CMS. Work to implement these system changes will continue into FY22.
Several other system projects were started in FY21 between HFS and UIC-DSCC. A workgroup was started to explore challenges related to the process for individuals to request home or vehicle modifications. This workgroup had compiled suggested improvements to HFS that will be implemented in FY22. Another project involved additional research into the availability of adult facility-based respite for individuals over 21 years of age with medical complexity. This is not a service currently available. UIC-DSCC has found a provider willing to help provide the service and began working with HFS and IDPH (licensing) to see how this could become a covered service. UIC-DSCC was also brought into discussions hosted by HFS in response to difficulties from families who receive personal assistant care through HCBS waivers and associated challenges related to home based schooling during the pandemic. In 2020, UIC-DSCC helped present a need to HFS for the state-plan to add coverage for solid foods for individuals with PKU or related disorders. HFS did agree to make this change, however, the provider enrollment process with Medicaid is not set up to easily enroll providers. Throughout FY21, UIC-DSCC has helped to partner with the medical food providers, HFS, and Medicaid MCOs to help overcome the barriers with enrollment.
UIC-DSCC continues to work on improving its relationship with the Department of Children and Family Services (DCFS) on the lack of safety planning for medically complex children in DCFS’s medical neglect investigations. UIC-DSCC is working to develop an internal procedure with a group of key individuals to help support DCFS’ investigators and to provide UIC-DSCC staff knowledge on how to escalate concerns/issues. UIC-DSCC was successful in getting DCFS to implement an internal policy that will assign a DCFS nurse to cases involving children with medical complexity.
Illinois LEND Program. In FY21, UIC-DSCC and LEND met to begin planning the development of a parent support group for parents of medically complex children. The three LEND trainees will provide a virtual opportunity in FY22 for caregivers of individuals enrolled in the DSCC Home Care Program to receive education on a relevant topic to their child’s care and then have the opportunity for connection and dialogue.
Workforce Development (Training). Staff received training on transiting to independence social and emotional health, motivation interviewing, mental health, vaccinations, HIPPA, fraud waste and abuse, medical home, mandated reporting, cultural competency and sensitivity, and personal safety. Approximately 87% percent of the staff exceeded UIC-DSCC’s goal of 20 hours of training per year, while 8% completed between 15 – 19 hours and 5% completed between 10 – 14 hours.
UIC-DSCC also demonstrated its commitment to establish and maintain partnerships to support its diversity, equity, and inclusion (DEI) initiative. UIC Office of Access and Equity (OAE) and Office of Diversity agreed to assist UIC-DSCC to: (1) review its organizational policies and procedures to identify opportunities for development or improvement on DEI and (2) develop surveys and assist with listening sessions to capture actual experiences and perceptions of the staff members. Currently, UIC-DSCC is waiting for the data to be analyzed and plans to use the findings to guide policy and procedure development and to shed light on additional training opportunities.
Another notable workforce development activity is UIC-DSCC’s willingness to serve as a clinical rotation site for students in nursing or social work programs. Clinical rotations were paused in March 2020 due to the COVID-19 pandemic but resumed in FY21. As of the end of FY21, 47% of DSCC regional teams had worked with at least one intern or nursing student during the year. The Advanced Practice fellowship in behavioral developmental pediatrics that UIC-DSCC had previously served as a clinical partner to has not resumed since the pandemic.
Presentations and Meetings. UIC-DSCC staff participated in a variety of state-wide councils and meetings pertaining to CYSHCN, including the FY21 Annual AMCHP meeting and the National American Academy of Pediatrics (AAP) CYSHCN Café where staff partnered the Illinois Chapter of the AAP to discuss the return to care for CYSHCN post pandemic. UIC- DSCC leadership provided the keynote presentation for the ICAAP ABC Conference. Staff have also presented to bachelor’s level nursing students on the topic of transition to adulthood. The UIC-DSCC Home Care Quality Improvement (HCQI) team provided the first of a two-part informational webinar series to enrolled nursing agencies to provide information on new and existing requirements.
Members of the UIC-DSCC team participated in specialty team rounds with different providers across the state. The team rounds served as an opportunity for UIC-DSCC staff to contribute knowledge on various resources that may be of assistance to patients seen in the clinics, in particular, information on UIC-DSCC’s care coordination programs and resources addressing social determinants of health that impact CYSHCN. In FY21, UIC-DSCC participated in more than 40 different team rounds across the state.
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