Children with Special Health Care Needs – Annual Report FFY 2018

NPM 11 – Medical Home: percent of children with and without special health care needs having a medical home.

Children’s Special Health Services provided these services to improve and enhance the medical home for CYSHCN during FFY 2018:

The HALI Project Parent Partner Program -

Parent Partners are parents of CYSHCN who are personally experienced and professionally trained to help other families navigate the complex system of care for CYSHCN. The Parent Partners work in clinics and receive referrals from clinic providers, who identify families in need of additional support. Parent Partners help families by:

• connecting them with community resources;
• supporting their mental and emotional health as they navigate the complexities of their journey;  
• helping to improve communication with their child’s medical providers;
• teaching them to be effective advocates for their children;
• connecting them with programs and individuals to help them better understand their child’s rights in the school system; and,
• helping families prepare to transition from pediatric to adult healthcare.

From October 1, 2017 to September 30, 2018, 203 families were served with 662 separate encounters and approximately 550 hours dedicated to supporting Montana’s CYSHCN population.

Eleven Parent Partners participated in bi-annual in-person training, and monthly individual and group calls with the Project Director, Brad Thompson, LCPC. A cornerstone of this program model is the consistent personal support offered to the Parent Partners, as they work to support other families while continuing to navigate their own child(ren)’s special healthcare needs.

The HALI Project Parent Partner Program served families in primary care clinics in Missoula, Kalispell, Bozeman, Billings, Great Falls, and Butte. These sites worked to expand capacity by adding hours and, at some sites, additional partners. The goal was to have a parent partner working in these clinics a minimum of 16 hours per week depending on the site location. The program worked towards adding partners to clinics in Bozeman, Helena, Polson, and at two additional locations in Billings. Two new Parent Partners received virtual training to support families with a genetic diagnosis, and those with deaf/hard of hearing diagnosis.

Montana Medical Home Portal –

CSHS continued to contract with the University of Utah Medical Home Portal, for hosting the Montana Medical Home Portal (MHP). The MHP is an easy to navigate, one-stop shop, providing diagnosis information, treatment options and state and local resources to families, providers, and agencies. The portal includes vetted, up-to-date clinical information, materials on accessing care, and a statewide services directory.

CSHS staff added 435 new resources to the Portal during FFY18. The Parent Partners assisted in adding these resources through the “suggest a resource” function of the Portal. CSHS staff continued to review all services in the MHP directory to ensure each service is still available and associated information is accurate. Work started on contracting with Montana’s 2-1-1 to obtain their resources to add to the Portal. This could potentially add over 1,000 new resources. During this reporting period the average hits per month to the Portal was 773, with the number of hits increasing following targeted marketing events.

Marketing of the Portal occurred at the following events: Montana AAP Chapter Conference; Montana Public Health Association; Rocky Mountain Childbirth Conference; and, The Great Beginnings, Great Families conference hosted by DPHHS. Staff demonstrated the Portal, answered questions and provided outreach materials to attendees. Marketing the Portal continued through Facebook advertisements and marketing materials. Staff is exploring new ways to advertise and increase usage. CSHS staff also met with University of Utah Medical Home Portal staff in bi-monthly meetings, to discuss possible marketing ideas as well as discuss any changes, issues, or additions to the Portal.  

Financial Assistance –

CSHS provided direct financial assistance to qualifying CYSHCN to cover out-of-pocket expenses for treatment, medication, and medical equipment. During this reporting period CSHS staff processed 21 applications and paid out a total of $11,640. The financial assistance program benefit has been underutilized for several years. Due to state budget cuts, there were many inquiries for enabling services such as case management, respite, room and board for treatment, and travel. In FFY 2018, CSHS began the process to change the Administrative Rules to expand this program to include a broader definition of CYSHCN and allow for coverage of enabling services.

CSHS Stakeholder’s Group –

The CSHS Stakeholder’s Group held our annual in-person meeting in August 2018. There were twenty-four individuals in attendance which included: parents; primary care providers; and, agencies and service providers for CYSHCN. Dorothy Cilenti and Oscar Fleming, from the National MCH Workforces Development Center, attended this meeting and facilitated a Results Based Accountability session with stakeholders. Three main areas of focus emerged:

1. Expansion of Circle of Parents support group to other cities throughout Montana. Leverage Parent Partners with additional training, and for facilitating groups if they are interested;
2. Increase awareness of services and supports by partnering with 211 and the CONNECT referral system, and with more outreach and advertising for the Montana Medical Home Portal and MCH Hotline; and,
3. Develop and pilot a transition project with a clinic, to implement policy and procedure into clinical practice.

SSI Referrals and limited Nurse Care Coordination –

CSHS employs a fulltime nurse program manager, whose primary duties are to manage and consult on CSHS programs. CSHS received referrals from the Disability Determination Bureau for any child or youth applying for SSI benefits. Referrals are coded and, when appropriate, the nurse program manager forwards them to Early Intervention, or the Montana School for the Deaf and Blind. The nurse also sends a letter and a brochure to each family explaining the programs they might access.

During FFY 2018, the nurse began phone follow-up calls with referral families to assess their needs and, where applicable, refer them to other programs. This new approach led to increased contact with families and more referrals from CSHS. Approximately 300 families were called during this reporting period. CSHS staff also marketed the Montana MCH hotline throughout the state which led to more opportunities for the nurse to speak with families and provide support and referrals.

Calls were tracked through an internal Bureau Events Tracking System (BETS). Every call that staff received was logged into this system to include: a brief description of the encounter; the number of people impacted; and, county of residence. A primary and secondary “staff assignment” was required, to ensure that events were tracked by at least two staff. There was a reminder and open/closed status option to assist with follow-up. Once an event was created, the system e-mailed both CSHS employees assigned to the event, and identified if it was open or closed. A user could also filter events by program, status (open/closed), event type (direct line, MCH 800, and e-mail) and subject/keyword. Approximately 70 calls related to care coordination were tracked using this system.