ADPH

ADPH continues exploring opportunities to involve families, youth, and fathers in more MCH activities. For the 2020 needs assessment, we developed an adolescent survey and conducted a focus group exclusive to adolescents and young adults to ensure we heard their voices on what they saw as problems and needs in their communities. We also conducted a focus group exclusive to fathers. Furthermore, due to the success of a key connection established during the needs assessment that assisted us with hosting focus groups, we have begun discussions with UAB SOPH for plans to continue our partnership with Alabama Network of Family Resource Centers. Our aim is for the centers to connect us directly with patients and families, especially those who are vulnerable and medically underserved, as well as their representatives, so that they may be involved in program design and policy making to improve health and health care. ADPH has sought guidance from state and national partners on strategies to collaborate with community leaders and groups as well as families of every background in every step of program implementation, including needs and assets assessments, program planning, service delivery, program monitoring and quality improvement activities.

CRS

ADRS and CRS have a deep and long-standing commitment to family engagement and the principles of family-centered care. For nearly three decades this commitment has impacted every part of the CRS division, including the direct services provided as well as the infrastructure building and population health work which is undertaken. CRS makes a significant investment in family partnerships by employing those with lived experience. CRS staff includes a full time SPC and part time LPCs in many of our offices. These positions are filled by parents who are full time caregivers of CYSHCN. CRS also employees two part time YCs that facilitate youth involvement in policy development and decision making.

In FY 2020, CRS was awarded a grant from ADPH to hire a parent consultant dedicated to working with families statewide who have children who are Deaf/Hard of Hearing. One of our current LPCs moved into this role. Data is transferred from ADPH on babies who do not pass the Newborn Hearing Screening, and the PC contacts those families (as well as others) to offer support and information.

COVID-19 greatly impacted many aspects of our work to engage families. Due to the effort to limit face-to-face contacts when families visited the local offices, LPCs were not able to interact with families in the waiting and exam rooms as they had always done. The lack of interaction was also true for the clinics CRS holds in community partner locations. The SPC and LPCs created innovative ways to connect with families.  A one-page list of “Conversation Starters” was developed to make the most of brief interactions and to try to identify needs the families may have been experiencing because of COVID-19. The “Conversation Starters” were utilized as LPCs made phone contacts before and after clinics in place of face-to-face contacts. Since March of 2020 there have been no in-person family meetings, which includes our Parent Advisory Committees (PACs). Some virtual PAC meetings have taken place, and been successful, but most families participating have expressed that it does not feel the same as gathering in person and interacting with each other as well as CRS Leadership.

One new initiative has been the implementation of monthly webinars coordinated by the CRS PCs and designed for families. PCs were trained on how to host a Zoom Training and utilize the ADRS Zoom Account. These webinars are called “Family Connections” and have covered a wide range of topics including Respite, Emergency Preparedness, Medicaid Waivers, Mental Health, and Sibling Issues. In the first few weeks of the pandemic, it was clear that families were facing significant challenges. Working with the Family Resource Specialists from the F2F HIC, a private Facebook group was created entitled “AL Special Needs Parent Support Group.” It immediately took off and began growing; to date, there are 716 members of the group, and it has become a wonderful community where people ask questions and share information freely with each other. There have also been opportunities for families to share supplies or equipment with each other, all facilitated by the connections in the group.

Advisory Committees

The SPC coordinates the state PAC, which brings together representatives from the Local Parent Advisory Committees (LPACs) to meet with CRS state office staff, as well as leadership from ADRS, and offers an opportunity for information to be shared by all attendees.

The LPCs each coordinate a Local Parent Advisory Committee (LPAC). These groups offer families the opportunity to provide input to policy and program changes in CRS and to interact with local staff members. LPACs are opportunities for community partners to share information and for families to find mutual support from coming together with other families in their area. Some topics addressed in LPAC meetings included Alternatives to Guardianship, The Enable Savings Plan, Special Education and IEP development, SSI, Community Respite Options, and various mental health related topics including the importance of self-care during this year.

The YCs continue to reach out to youth and young adults with special health care needs and have a growing network across the state known as the YAC (Youth Advisory Committee). In FY 2020, YAC meetings were held via Zoom and specifically addressed the impacts of COVID-19 and strategies to address these impacts. Topics included ways to cope during COVID. The YCs encouraged YSHCN to listen to music, spend time outdoors, and to talk on the phone with friends since they could not spend time face-to-face. Other Zooms focused on accessibility in the community. YC and YSHCN discussed accessibility issues pertaining to public buildings and private vehicles. They also provided information and resources via the Youth Connection Facebook page regarding COVID-19 and virtual education resources specifically for YSHCN as they adapted to virtual education platforms.

Strategic and Program Planning

The SPC and YC are involved in planning and developing initiatives for CRS as members of the Management Team. The LPCs are included in these activities in the local offices.

Quality Improvement/Workforce Development and Training

CRS includes families in all training for staff to strengthen the partnership between families and professionals and to reinforce the concepts of Family-Centered Care. New staff in local CRS offices spend time in orientation with the LPC to learn more about their roles and the principles of family centered care.

The SPC and LPCs have provided training to groups including UAB students at the School of Public Health (SOPH), the UAB Pediatric Pulmonary Center trainees, and the Medicaid ACHN staff’s introductory Care Coordinator training. In addition, LPCs have been interviewed on Alabama Cares Facebook Live broadcasts and presented to University of Alabama students majoring in Special Education, as well as various other community organizations. The SPC and three of the LPCs serve on the statewide steering committee for the Community of Practice for Supporting Families of Individuals with Intellectual and Developmental Disabilities. The SPC has had multiple opportunities to present during webinars sponsored by AMCHP and the CMC CoIIN.

The SPC and CRS Assistant Commissioner are members of the ACHIA steering committee, which is the state improvement partnership program working with the Alabama Chapter of the American Academy of Pediatrics (AAP) and pediatric practices across the state. The SPC is serving on the Continuous Quality Improvement Committee, which is charged with reviewing possible topics for future learning collaboratives coordinated by ACHIA.

The SPC and some LPCs are members of the team participating in the CRS National MCH Workforce Development Center project and are members of the Alabama CMC CoIIN team. The SPC was the co-lead for the CoIIN sponsored affinity group for Title V leaders. In addition, CRS has just completed a six-month project sponsored by national Family Voices, the Collaborative Action Team for Diverse Family Engagement. The CRS Assistant Commissioner and the SPC co-lead this team made up of CRS staff and FVA staff.

Block Grant Development and Review

The SPC, LPCs, and YCs were all involved in the Five-Year Needs Assessment process, including serving as members of the CRS Needs Assessment Leadership Team. The SPC and a LPC are part of the Block Grant State Action Plan workgroup that meets monthly to discuss progress on Block Grant State Action Plan activities.

Materials Development/Program Outreach and Awareness

The SPC, LPCs, and YCs are involved in the development and updating of any printed and web-based materials pertaining to CRS.

LPCs serve on many state and local committees and task forces, including Medicaid’s ACHN Consumer Advisory group, Early Hearing Detection and Intervention Learning Community, Community of Practice for Supporting Families State Team, Alabama Council on Developmental Disabilities (ACDD), Lifespan Respite Network, Early Intervention District Coordinating Council, Children’s Policy Councils, Alabama Institute for Deaf and Blind Advisory Board (Mobile), Individual and Family Support Councils, the local Governor’s Committees on Employment, Parents as Teachers Advisory Board, and the local planning groups for various events targeted at families who have CYSHCN. They also represent CRS at many community events across the state, such as health fairs and expos, although these activities have been curtailed during the pandemic. They do provide training for various university classes, the UAB Pediatric Pulmonary Center trainees, and statewide conferences. LPCs coordinated the submission of nominees from each office for the “Hero of the Month” Award, presented by the Kids Wish Network.

The SPC is a member of several statewide committees and task forces including the ADPH Newborn Screening Advisory Committee, the UAB PPC Advisory Committee, the Project Launch Young Child Wellness Council, and Project Launch steering committee, the Functional and Access Needs in Disaster Task Force, and One Strong Voice Disability Leadership Coalition. She is also a member of the AMCHP Legislative and Finance Committee.  In June 2017, the SPC was appointed to serve as a Public Health Practitioner Affiliate with the UAB SOPH, and this appointment was renewed in 2020. In 2019 she was appointed to the SouthSeq Community Advisory Board, working with Hudson Alpha Institute of Biotechnology and addressing ways to share news of genetic test results with families of young children in Alabama, Louisiana, and Mississippi.

Family Voices Partnership

CRS has maintained a strong partnership with FVA, home of Alabama’s F2F HIC. The CRS LPCs also collaborate with FVA to collect data about the needs expressed by families in the state and about the types of information shared with them. FVA uses a data collection system in the F2F HIC project which strengthens the Parent to Parent program. CRS is partnering with FVA to maintain licenses and training needs for the data system. Information and assistance were provided in the areas of the six core outcomes, with the highest number of requests coming in the area of Community Services, followed by Partnering with Professionals and Medical Home. A significant collaboration has been support of the Partners in Care Summit, a project of the F2F HIC. CRS’s support has helped the conference to grow and allowed for national speakers to present on topics related to medical homes, transition to adulthood, and family/professional partnerships. This conference has been attended by families, CRS staff from across the state, and other community partners. Unfortunately, the 2020 and 2021 Partners in Care Summit had to be cancelled due to the COVID-19 crisis.