Medical Home – Annual Report

According to the 2016-2017 National Survey of Children’s Health, 51.7% of CYSHCN in Delaware reported that their care met the medical home criteria, which is above the national estimate of 43.2%.

This past year, Delaware has continued to work to address the issue of medical home with our families with children with special health care needs by utilizing resources supported by the Universal Newborn Hearing Screening and Intervention Program funded by the Health and Resources System Administration. Under this program, we implemented Learning Communities which were led by two (2) parent lead organizations (Family Voices and Hands and Voices) who work with families of infants who are Deaf or Hard of Hearing (D/HH).  Delaware successfully implemented our first Learning Community on May 15, 2018. There were parents, audiologist, otolaryngologist, neonatal nurse, neonatologist, physicians, early intervention providers, and teachers of children with hearing loss.  A survey was shared with these individuals; the parents and the professionals that participated in this meeting collectively to determine which topics could best address the needs of both parents and professionals who serve infants who are Deaf or Hard of Hearing (D/HH) in Delaware.

As a result of this exercise, several additional events are schedule in the coming months that will offer workshops that provide valuable information to our community stakeholders.  The Learning Community schedule with workshop topics were distributed to parents and professionals serving infants who are D/HH.  These topics include: Medical Home and the Care Notebook, Joint Committee on Infant Hearing (JCIH) Recommendations: What 1-3-6 means to you.  The workshops were offered in New Castle, Kent and Sussex County during the day and in the evening.  Parents and professionals schedules were taken into consideration when the schedule was made.  The last Learning Community was held in October 2018.  Unfortunately, we came to a temporary hold on the implementation of the Learning Communities because contracts for the two Parent Lead Organizations ended and one of the organizations decided not to extend their contract.  Therefore, a Request for Proposal (RFP) was posted and we are currently waiting for applicants to submit their proposals for review. 

Child Development Watch (CDW), Delaware’s Birth to Three program is using a statewide, cohesive approach to engaging children, families, and Primary Care Providers (PCP) in Delaware’s Early Intervention programming.  As Primary Care Providers guide efforts of comprehensive pediatric care in our state, Child Development Watch initiated a Kent and Sussex county pilot to educate providers and perform program evaluation amongst CDW and PCP offices. This outreach reviewed and analyzed the effectiveness of CDW operations, PCP knowledge and perceptions of Early Intervention. The outreach effort reached over 125 providers and staff and 20 practices were provided and educational training.  The following was achieved by conducting Healthcare Provider Outreach:

• Strengthened relationships with healthcare providers
• Re-defined systems processes amongst CDW and partners in care; resolved large referral system issues with one of our greatest referral sources
• Put a face to a name for CDW and providers
• Allowed for ongoing collaboration with Building Bridges and Delaware’s Autism Initiatives, American Academy of Pediatrics Delaware Chapter, Help Me Grow/211, and other community partners
• Through healthcare provider visit discussions, discussion surfaced on maximizing the utilization of already developed Delaware based platforms to share relevant pediatric healthcare information across multiple medical and developmental sectors.
• Most importantly, it has furthered the connection between providers, families and Early Intervention by using a collaborative approach to educate and engage our community partners to improve child and family outcomes.

The following opportunities for improvement were also noted from outreach:

• MDA documents need to be sent to healthcare providers quicker
• Review Autism/PEDS screening system to assure these screening results are received with all CDW/Part C referrals
• Send all Nemours related documents to HIM Fax to assure timely feedback to healthcare providers
• Input eligibility data into data system within 30 days of evaluation

The following results were ascertained from the Family Survey, conducted in 2017 via telephone, online, and mail surveys completed by families of children receiving CDW/Part C services:

• 96.8% of families were satisfied overall with the services they received;
• 94.6% of families reported a positive perception of the life change in themselves and their family, in relationship to their experience with CDW;
• 96.1% of families reported a positive change in their child’s behavior and abilities since the beginning of their participation in CDW;
• 94.7% of families reported a positive family-program relationship with CDW staff;
• 94.3% of families reported a positive perception of family decision-making opportunities with CDW;
• 94.4% of families reported a positive perception of the program’s accessibility and receptiveness;
• 94.0% of families reported a positive perception of their child’s and family’s quality of life;
• 90.2% of families reported a positive perception about their understanding of social-emotional development as a result of the program;
• 85.3% of families reported that they believe their insurance will cover their child’s health care needs, and 53.7% of families reported knowing how to appeal an insurance denial.

The survey incorporated questions about three federal outcomes, which are: “Families Know their Rights,” “Families Effectively Communicate their Children’s Needs,” and “Families Help their Children Develop and Learn.” Survey responses indicated:

• 89.1% of families responded that they knew their rights related to participating in the CDW program;
• 97.4% of families agreed they could effectively communicate their children’s needs; and
• 94.6% of families reported learning to help their child develop and learn.

Work will continue around education of providers, families and family organizations around the need for and benefits of the medical home model for CYSHCN and their families.

On January 1, 2018, Delaware’s Newborn Metabolic Screening program was outsourced to a third party.  After many discussions with partners and birthing facilities about fee increases, we committed to exploring alternatives including posting a RFP for the program where vendors could bid on just the lab portion, the follow-up portion or both.  We entered into a contract with Nemours/Alfred I. duPont Hospital for Children (N/AIDHC) to assume the responsibility for the Newborn Screening Program for the State of Delaware as a result of that process.   Nemours selected PerkinElmer as the provider of laboratory services because of their strong reputation in diagnostics and successful newborn screening programs throughout the United States and globally.

As expected, the transition of the program from Delaware’s Division of Public Health to Nemours has been smooth, as they had already been partnering with the State in providing medical consulting and short-term follow-up services for the Newborn Screening Program since 2013. Nemours also maintained relationships with birthing hospitals statewide and a referral network of pediatric specialists for children diagnosed or identified as at-risk through newborn screening.  The Newborn Screening Advisory Board has met three times this past year.  The Board has approved four additional conditions to our panel as well unanimously voted to eliminate the mandatory second screening in Delaware.  The MCH program participates in all Advisory Board meetings and will continue do so as well as monitor operations.

Adequate Insurance Coverage – Annual Report

Delaware chose Adequate Insurance Coverage as a key priority area based on the 2015 Needs Assessment final rankings.  This issue was consistently ranked among the greatest concerns for our stakeholders throughout our needs assessment process. In the 2015 stakeholder survey adequate insurance coverage ranked 1st among the three issues directly linked to the Cross-Cutting/Life Course domain and 3rd when all 15 priorities were considered. In the more focused CYSHCN stakeholder survey 63% of the respondents were moderately or extremely concerned about the adequacy of their insurance and 59% ranked adequate insurance coverage among the “Top 2” health issues faced by their families. Key informant interviews also expressed a strong desire to address this issue within the state.

Although not formally designated to the CSHCN population domain the results of our needs assessment, key informant interviews and focus groups from CYSHNs stakeholders clearly showed adequate insurance coverage to be the greatest single concern for these families and our work plan focuses on this domain. Through addressing the adequacy of insurance for this particularly vulnerable population it is hoped that the Title V population in general will benefit from processes developed, lessons learned and information shared.

According to the 2016-2017 National Survey of Children’s Health, 70.2 of Delaware children are adequately insured which is about the same as the national average of 68.4%.

Our 2018 Title V Stakeholder Survey provided proof that the need for adequate health care coverage for our children with special health care needs remains a priority for our families and community partners once again.  Comments and suggestions by survey participants included the need for further education on what health care options are for families who may not qualify for Medicaid, expanded coverage for special equipment needs, additional funding for home therapy and respite care, and access to care in general.

In 2017, the State of Delaware’s Legislature, 149th General Assembly, gave specific instructions for the Department of Health and Social Services (DHSS) to develop and publish a comprehensive plan for managing the healthcare needs of Delaware’s Children with Medical Complexity (CMC) by May 15, 2019.  Under guidance from Kara Odom Walker, MD, MPH, MSHS, Cabinet Secretary of DHSS, the Division of Medicaid and Medical Assistance (DMMA) teamed up with multiple community partners, sister divisions, parents, caregivers, and other advocates to develop a comprehensive plan for identifying and managing the healthcare needs of Delaware’s CMC. As a result, the CMC Steering Committee was launched in November 2017.  The CMC Steering Committee took a systematic approach to determine how the current healthcare system is providing services for Delaware’s CMC, identify areas where improvements can be made, and suggest some strategies to strengthen the system so that Delaware can more effectively meet the needs of this vulnerable population.  One of the first things the Steering Committee did was establish a Delaware specific definition of CMC to aid in the development of Delaware’s Plan for managing the Health Care Needs of Children with Medical Complexity, assist in the state’s ongoing efforts in this area, and to create awareness among the provider and payer communities.  On October 4, 2018, the CMC Steering Committee evolved to become the Children with Medical Complexity Advisory Committee (CMCAC). The purpose of the CMCAC is to strengthen the system of care, increase collaboration across agencies, encourage community involvement, and ultimately ensure that every child with medical complexity has access to quality healthcare services delivered in a family-centered manner.   In fact, at the meeting of every meeting a parent provided a presentation on her family’s day-to-day life with a child with complex medical needs along with explaining how they utilize the care notebook developed by Family Voices.  MCH has been participating member of the CMCAC meetings and will continue to participate as they begin to work on the recommendations.  A link to the submitted plan can be found here:  https://news.delaware.gov/2018/05/30/dhss-releases-delawares-plan-managing-health-care-needs-children-medical-complexity/

As in years past, Title V supported the monthly Managed Care Calls conducted by Delaware Family Voices.  Family SHADE, supported by Title V, continued to develop their website’s Roadmap to Services to include up to date information around insurance coverage for CYSHCN. The traffic to this page increased dramatically from September, 2017 – May, 2018 with 623 page views; an increase of 184%. Family SHADE continued to use the Families Know Best surveys to take a pulse on how families of CYSHCN are experiencing insurance coverage for their special needs child. These surveys have proven to shed light on areas where targeted education on insurance coverage is needed such as addressing the dually eligible children who qualify for both Medicaid and Medicare.