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 healthcare 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.  

During FY18, the UIC-DSCC utilized the following strategies and activities to address the Children and Youth with Special Health Care Needs Domain priorities: 

During FY18, UIC-DSCC continued working toward full implementation of person-centered care coordination. The Division’s administrative rules were revised; a new approach to assessment and care planning was introduced; work on new procedures for performance management and quality improvement continued; Eccovia’s ClientTrack was selected as UIC-DSCC’s new information system; and a new partnership was established with IDPH’s Office of Health Care Regulation.

Care Coordination. Much of UIC-DSCC’s work focuses on care coordination and system building to address State Priorities 4 and 6 (Refer to Form 9) and to achieve SPM #6 and NPM #12 (Refer to Form 10). During FY18, the Division’s administrative rules were updated to simplify determination of eligibility for the Core Program. Some of the categories of eligible medical conditions were revised to be more inclusive. Earlier requirements regarding amenability to treatment were dropped. Financial eligibility requirements were updated to coordinate with eligibility for Illinois’ Medicaid and SCHIP programs. (See “Financing of Services” section above for more details.) Following adoption of the new administrative rules, the Core Quality Improvement Team presented the new rules, associated changes in policy and procedure, and changes in the management information system through a series of webinars for the entire staff.

UIC-DSCC’s new approach to comprehensive assessment and person-centered care planning was expanded in FY18. The Home Care program was already using person-centered planning. The comprehensive assessment was pilot tested and then introduced to all care coordination staff through two full days of training in the spring of 2018. The comprehensive assessment was implemented in the Home Care program after this training. Implementation of the comprehensive assessment and person-centered approach to planning will be implemented in the Core Program in FY19. (See “State Title V Purpose and Design” section above for more information.)

Work continued on the development of scorecards to measure key aspects of care coordination. Staffs were engaged in the specification of measures and the information system was revised to capture and report performance data. The record review tool and the family surveys were developed during FY18. (Further pilot testing occurred earlier in FY19 and full implementation is planned for later in the current year.) See “Other MCH Data Capacity,” above, for more information.

One of DSCC’s responsibilities in operating the Home Care program is reviewing the performance of the agencies that provide in-home nursing services to participants. Since the Illinois Department of Public Health licenses, inspects, and investigates complaints against home health, home services and home nursing agencies, UIC-DSCC and IDPH Office of Health Care Regulation began developing plans to share information and coordinate reviews of nursing agencies that serve Home Care program participants.

Population-Based Approaches. The development of training for nurses who care for technology-dependent children, youth, and adults was described earlier, in the “Highlights from the Illinois Title V Program” subsection. The initial conference, “Nitty Gritty Nursing,” was held October 27, 2018, with 100 nurses in attendance.

Other population-based approaches are discussed below and elsewhere in the application, including outreach, staff participation in hospital and clinic rounds, transition, and the use of social media. (See “State Title V Purpose and Design” and “Family Partnership” sections above for more information).

Outreach. UIC-DSCC staff conducted 107 outreach events during fiscal year 2018. These efforts allowed staff to network with and inform more than 13,300 people about care coordination services for CYSHCN. UIC-DSCC staff also participated in pediatric rounds at 60 different Illinois’ children’s hospitals and specialty clinics each month.

UIC-DSCC provided information about its services and referrals to community resources to a total of 7,282 new children and youth (or their families) during FY18, including 2,194 children or youth referred through the SSI program. Further, staff provided information and made referrals to 290 families and health care providers that reached out to UIC-DSCC either by phone or by email. Just over 22 percent of these inquiries were requests for assistance in obtaining medical services of one kind or another. Staff also responded to questions from families and providers about education, housing, mental health, health insurance and transition.

Transition. UIC-DSCC addressed state priority #6 and NPM #12 through the following activities:

UIC-DSCC Care Coordinators continued to assist transition-aged youth and their families to prepare for the transition to adult health care systems by empowering them to ask questions of their providers about transition policy and to ask for assistance with health care transition. One section of the comprehensive assessment is devoted to Transition and specific performance measures are included on the care coordination scorecard. While the NSCH found that only 21 percent of all transition-aged YSHCN in Illinois received transition assistance in 2016 and 2017, the UIC-DSCC’s own record review found that over half (54.4%) of YSCHN in the Core and Home Care programs received transition assistance. UIC-DSCC uses both automated reports from its information system and record reviews to measure transition assistance (and other aspects of care coordination).

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, even 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.

Information for health care professionals on transition, including the “Transitioning Youth to Adult Health Care” courses for physicians, is available through the Illinois Chapter of the American Academy of Pediatrics’ website, http://illinoisaap.org/projects/medical-home/transition.

UIC’s transition specialist and family liaison participate in the Land of Lincoln Workforce Alliance Youth Council meetings to share information on transition, resources, and to advocate on behalf of YSHCN.  Our transition specialist is a board member of the Illinois Center for Rehabilitation and Education-Roosevelt, a residential school for students with severe physical disabilities and other health impairments. The program offers a two-year comprehensive Transition Program that provides young people ages 18-22, instruction and opportunities to make a successful transition to adult life.

UIC-DSCC staff also promoted the adoption of the Six Core Elements in health care transition through contacts with providers, presentations, conference exhibits and website links. Presentations were made to the International Association of Rehabilitation Professionals, the Eastern Illinois Area Special Education Roundtable; the Coles County Transition Planning Committee (TPC), the Chicago Southside and Southwest Suburban Area TPC, and the Springfield Public School District 10th Annual “Disability to Possibility” Conference. Conference exhibits included all four IDPH “School Health Days” and “Critical Issues” conferences for school health personnel and two meetings of the Illinois Alliance of Administrators of Special Education. The UIC-DSCC Transition Resource Directory includes “Transition Milestones,” “Transition Skills, Tips, and Tools,” and the “Transition Toolkit.” These can be found on UIC-DSCC’s website.

UIC-DSCC Regional Office staff also served on local TPCs and participated in TPC outreach activities and transition fairs. A statewide network of 42 transition planning committees assist and connect parents, teachers, students, and community members to resources to help students with disabilities transition from secondary education to adult life. The TPCs are consortia of local schools, non -profit organizations, parents of youth with disabilities, students with disabilities, and other stakeholders who meet throughout the year. Transition Planning Committees are authorized by Article 14 (Children with Disabilities) of Illinois’ School Code, 105 ILCS 5/14-8.03. Each TPC receives modest financial support from the Illinois Department of Human Services’ Division of Rehabilitation Services.

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.

UIC-DSCC has engaged families of CYSHCN through the Family Advisory Council (FAC). The FAC was restructured and new members were recruited to ensure statewide representation from both the Core and Home Care programs.

UIC-DSCC continued to use its website and Facebook page to disseminate information on resources and activities for parents. The website received a total of 46,879 hits and UIC-DSCC’s Facebook page received 203,795 hits during FY18.

For more than 75 years, UIC-DSCC has collaborated with the Illinois School for the Deaf in Jacksonville, Illinois to conduct the Institute for Parents of Preschool Children who are Deaf or Hard-of-Hearing. The institute is a week-long, residential program. Parents attend daily lectures to learn about raising a child with hearing loss. IDPH Early Hearing Detection and Intervention program, the IDHS Part C Early Intervention program, and the Illinois State Board of Education have collaborated in the operation of the Institute for more than 20 years. UIC-DSCC pays stipends and reimburses travel costs for Core Program families who participate in the Institute. In FY18, 23 children, 15 siblings and 40 parents or caregivers participated.