Children with Special Health Care Needs - Annual Report

Illinois’ priorities for the Children and Youth with Special Health Care Needs Domain are:

• Enhance the capacity of families to connect CYSHCN to the health and human services they require for optimal behavioral, developmental, health, and wellness outcomes. (Priority #4)
• Assure appropriate transition planning and services for adolescents and young adults including youth with special health care needs. (Priority #6)

Illinois has prioritized care coordination and transition services for children and youth with special health care needs (CYSHCN). Current data on the experience of Illinois’ CYSHCN from the 2016 and 2017 National Surveys of Children’s Health, as well as Illinois’ national and regional ranking and ranking among the 10 most populous states on the six core outcomes for systems serving CYSHCN were presented in the “Needs Assessment Update” section.

UIC-DSCC utilized the following strategies and activities to address the Children and Youth with Special Health Care Needs Domain priorities:

DSCC provided care coordination services for 7,554 individuals located in all Illinois counties, and provided resource and referral information to another 11,685 children who were not interested or eligible for ongoing care coordination services.

Care Coordination. UIC-DSCC has care coordination programs serving children with special needs and works to address systemic issues impacting CYSHCN throughout the state.  The mission of UIC-DSCC is to partner with Illinois families and communities to help children and youth with special healthcare needs connect to services and resources.  UIC-DSCC’s work with CYSHCN across the state of IL helps UIC-DSCC to have a deeper level of awareness of issues impacting individuals and their families.  It also helps to create relationships with various programs serving children which is beneficial when working to develop solutions to problems or addressing strategic initiatives. 

UIC-DSCC has 3 programs of care coordination services. The Core Program is guided by Illinois Administrative Rule, which was updated October 2018, serves a broad population of CYSHCN, and is funded by Title V dollars. The revision of the Administrative Rule involved implementation of significant policy and procedure revisions.  The policy revisions also included some changes to the financial assistance provided to participants of the Core Program.  An individual cap of $7,500 was put into place.  UIC-DSCC does continue to offer “gap-filling” financial assistance to program participants. Work to strengthening organization policy and procedure continued throughout the year.

A Core Program Enrollment & Resource Team began piloting in summer 2019 in Chicago.  The goal of this team is to improve the ability of DSCC to provide assistance to CYSHCN and their families throughout the state with resource needs who are not enrolled in our care coordination programs. To better accommodate the growing Chicago Core team, plans began in late summer 2019 to open a new Chicago region. 

The second key program is the Home Care Program which serves medically complex individuals who receive in-home, shift based nursing care as a Medicaid EPSDT benefit or who are enrolled in the Medically Fragile Technology Dependent Waiver.  This program is administered and funded by the Illinois Department of Healthcare and Family Services (HFS).  UIC-DSCC provides services necessary for the operation of this program and provides care coordination. Several changes were made to the Home Care Program in FY 2019 to accommodate for continued program growth.  These changes included the development of a dedicated enrollment team, the implementation of a 6th regional team, and the development of a Staffing Support Team dedicated to helping address systematic issues pertaining to home nurse staffing. 

As part of its role with the Home Care Program, UIC-DSCC provides quality oversight of home nursing agencies and medical equipment companies throughout the state serving MFTD waiver recipients.  During FY2019, DSCC developed a more collaborative relationship with IDPH.  This has improved the way that quality issues are addressed by the home nursing agencies.

In July 2019, UIC-DSCC began to develop and implement its third program of care coordination for CYSHCN, the Connect Care Program.  This program provides care coordination for children who were previously served by DSCC’s Core Program, and who are now enrolled in one of 6 Medicaid Managed Care Organizations who DSCC will contract with to provide care coordination. The Connect Care Program will be funded by reimbursement from the Medicaid Managed Care Plans.

Population-Based Approaches. UIC-DSCC has been actively participating in the “Big Five States” workgroup on population-based approaches to serving CYSHCN and in the National Pediatric Home Health Care Panel and will continue to pursue population-based approaches to serving CYSHCN and their families through the Core and Home Care Programs.

UIC-DSCC’s outreach strategy includes presentations and exhibits at conferences sponsored by partner organizations. The Transition Conference targets youth with all types of special health care needs, as well as their families and the providers and agencies who serve them. UIC-DSCC’s Early Hearing Detection and Intervention grant supports a successful collaboration to reduce the number of infants with hearing loss who “drop out” of the service delivery system.

Medical Home. In FY2019, UIC-DSCC continued to train its Care Coordinators to help families develop the skills to recognize, advocate for, and 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.

In addition, UIC-DSCC staff participated in a variety of state-wide councils or advisory committees pertaining to CYSHCN including Illinois Chapter of the American Academy of Pediatrics (ICAAP) Section Committee on Chronic Illness & Disability, Children’s Justice Task Force, advisory committee for Integrated Health Homes along with HFS, Integrated Care for Kids Partnership Council at Lurie Children’s Hospital, Emergency Medical Services for Children, The Collaborative for Children’s Healthy Policy, Transition Planning Councils, and IL Interagency Council on Early Intervention.

Transition Staff Training and Assessment Tools. Staff training on transition includes assessment of transition readiness, specification of transition goals in the care plan, follow-up with youth and families, and advocacy with providers. The transition assessment is tailored to address the concerns of specific age groups. UIC-DSCC will use a continuous quality improvement approach to strengthen assessment, planning, and plan implementation for CYSHCN participating in its Core and Home Care Programs. Further assessment, training, and dissemination of best practices will strengthen transition planning and plan implementation. Evidence of UIC-DSCC’s commitment to strengthening transition planning it began requiring a transition related goal be included in the person-centered care plan for all individuals enrolled in any of UIC-DSCC’s care coordination programs. This activity will be monitored through the record review process with results available in the UIC-DSCC Scorecard.  

Transition Conference. The 14th Annual Statewide Transition conference was held in the Chicago area in October 2018. There were 712 participants, including 129 parents and youth, and 583 professionals (educators, nurses, vocational counselors, and social workers). UIC-DSCC provided financial support for 27 youth and their families, along with 23 staff, to attend the conference. For the first time in many years, Continuing Medical Education credits were offered for physicians and advanced practice nurses who attended the workshops in the Health Care Transition track and eight physicians presented workshops or plenary sessions for this track. Overwhelming positive evaluations from various fields, including veteran teachers and state rehabilitation services staff, show that participants continue to gain new knowledge and skills from the conference. Families report that they learn a great deal and are better able to plan for a successful transition. Many attendees return year after year.

Presentations. The UIC-DSCC’s Transition Specialist presented at 3 different events in the state (Webinar for IL Lifespan Program of the Arc in February 2019; School Nurses at the Special Education District of Lake County (SEDOL) March 2019; and a breakout session presentation at the Statewide Transition Conference in October 2018 titled, Partner, Help, Connect: Supporting Youth with Special Healthcare Needs and their families.

Partner with School-Based Health Centers. The Specialists also collaborated with Got Transition Technical Assistance and the School Health Program Administrator along with IDPH and School Based Health Center staff in July 2019.  Based off the feedback, the IL School Based Health Centers added “transition services” to the problem list, and implemented an assessment shared by Got Transition to monitor their transition activities. 

Illinois’ LEND Program. UIC-DSCC collaborated with five LEND trainees on a leadership project to develop a curriculum on Self-Determination in the Transition to Adulthood.  This curriculum was presented to professionals, families and individuals with disabilities at 2 locations in IL in March 2019.

Outreach and Collaboration. To provide information on transition for the public, UIC-DSCC staff participated in outreach activities and transition fairs. The UIC-DSCC Transition Resource Directory provides important transition resources including “Transition Milestones,” “Transition Skills, Tips, and Tools,” and the “Transition Toolkit” and posted information about transition activities and resources on the website and Facebook page.

UIC-DSCC staff continued to work with the Family Advisory Council, providers, and other stakeholders to identify and disseminate additional resource materials on health care transition.

Family Partnership. UIC-DSCC addressed state priority #9, the proportion of children who experienced family-centered care, by continuing to partner with CYSHCN and their families by using a person-centered approach to care plan development. Every family that participates in UIC-DSCC’s care coordination programs is approached as an active and equal partner in the development and implementation of a care plan.

FY2019 was referred to as the year of the Family Voice at UIC-DSCC.  Family surveys were developed and implemented in August 2019.  These surveys are set to be delivered at intervals during enrollment in UIC-DSCC care coordination programs. 

Coordination/Collaboration with key stakeholders to address barriers (including financial assistance). In July 2019 the IL 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 6 Medicaid Managed Care Plans (MCOs) 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 MCOs has allowed UIC-DSCC to make additional relationships with additional systems serving CYSHCN.

Additionally, in FY2019, UIC-DSCC provided $2.8 million dollars in direct “gap-filling” financial assistance to enrolled program participants who met financial eligibility and presented a need. 

In October 2018 UIC-DSCC along with Ann & Robert Lurie Children’s Hospital hosted the Nitty Gritty Nursing Conference.  The intended audience of this conference was nurses who care for medically complex children in the home setting.  The conference was developed in response to some issues pertaining to the quality of nursing care provided in the home by nurses serving medically complex children.  One key area identified with this issue was that the skills needed to care for this population are above what is taught in nursing school.  While the team of experts at Lurie developed the content for this conference, UIC-DSCC has obtained the intellectual rights to this material.  Approximately 75 people attended the event in October.  UIC-DSCC worked with OSF Saint Francis Medical Center Children’s Hospital of Illinois to create an event in the central part of the state with the using the same content developed by the Lurie team.  The Nitty Gritty Nursing Conference was highlighted in a June 2019 Health Affairs article, “Home Health Care for Children with Medical Complexity: Workforce Gaps, Policy, & Future Directions,” as a successful example of targeted nurse education.

Workforce Development. Another notable development in FY2019 focused on workforce development. UIC-DSCC Education and Training Specialists began an overhaul of the training provided to all new UIC-DSCC staff at the time of hire.  This project also includes a revision of the care coordination training process.  UIC-DSCC is working to ensure care coordinators are provided a better foundation at the time of hire to support their work. UIC-DSCC has also made a commitment to ensuring care coordination staff receive 20 hours of continuing education every year throughout their employment. 

In May 2019 UIC-DSCC provided the first training to 16 Quality Champions.  Quality Champions are staff volunteers from across the state who received additional quality improvement training.  The Quality Champions will help within their team reviewing scorecard and other quality metrics, facilitating quality improvement huddles with their teams, and then developing plans for improvement within the team. Quality Champions as well as other members of UIC-DSCC leadership were provided training by the Institute for Health Care Improvement on quality improvement. 

UIC-DSCC implemented monthly, statewide multidisciplinary staffing meetings. Staff member were invited to participate in these meetings. Care coordinators presented on the various challenges they encountered, and staff shared knowledge and experience to help find solutions. 

Trainings for UIC-DSCC staff for FY2019 included the following topics: abuse and neglect, AllKids & Medicaid training, Disability Culture and Current Views, Division of Rehabilitative Services (DRS) Transition Services and Home Services Program, General Eligibility for the DSCC Core Program, Annual HIPAA compliance training, Introduction to Medical Home, Introduction to Motivational Interviewing, MEDI training, Medicare Basics, Motivational Interviewing (2 sessions and application exercise), Sensitivity Training, Ventilator Basics, University Ethics, University Title IX Misconduct Training. 

In FY2019, UIC-DSCC selected a new care coordination software, ClientTrack by Eccovia.  Throughout FY2019 select team members participated in system testing and development activities in preparation for a March 2020 implementation.