SPAN Update for Infant Child-Health Committee June 2017

Transcription

1 SPAN Update for Infant Child-Health Committee June 2017 IMPROVING BIRTH OUTCOMES Improving Pregnancy Outcomes: The reached 832 women through targeted outreach. The Community Health Workers provided education, referrals and resources at various outreach sites in Essex county and through outreach, we connected with (781) women and (128) men of childbearing age. Eight workshops were offered on the following topics: Income Taxes; What is a Doula?, Smart Budgeting; Empowering Women; Breastfeeding/Childbirth education; Pediatric Oral Health. The Community Doula Pilot: The program has trained 9 Community Doulas; they are culturally and ethnically reflective of the Essex County community. The doulas received supplemental trainings in: Breastfeeding Basics for Doulas; Childbirth Education/Navigating the Hospital; and Kemetic Yoga. We have received 15 doula referrals and had 3 births since March. In-service education has been offered to University Hospital nursing staff on Community Doula support-what to Expect from the Community Doulas in L&D. SPAN and NJ-DOH are partnering on a Focus Group project to learn more about why women with typically low-risk pregnancies to deliver by caesarean and SPAN and NJ-DOH are collaborating to on a Zika Video project. Educational videos in English, Spanish, and Haitian Creole will be created to address the mental health stressors of Zika during pregnancy. For more information, contact Rachel Ruel at rreul@spannnj.org. FASD Prevention Project: The FASD project completed the last two on-line FASD training webinars that took place on February 20 th and 27 th ; there were 70 participants combined. 190 health care professionals completed all four webinars. Family Resource Specialist staff trained a total of 38 women as peer mentors; FRS s continue to support the peer mentors in conducting peer-to-peer support. Peer-to-peer support for 15 support groups at geographically diverse locations across the state including libraries, community based, organizations, child care and Head Start centers, and schools in Bergen, Burlington, Camden, Essex, Gloucester, Hudson, Mercer, Middlesex, Morris, Ocean, Sussex, Union, and Warren counties. For more information, contact Nicole Pratt at npratt@spannj.org Partners for Prevention of Developmental Disabilities and Birth Defects (BDARS): In conjunction with the NJ Network for Cultural Competence (NJNCC) Planning Committee, logistics were confirmed for this year s Annual Cultural Competence Conference. The Conference will be held on December 5, 2017 at the Holiday Inn National Conference Center in East Windsor. The theme of this year s conference is Improving Health and Mental Health Literacy in Diverse Communities: Why Partnerships Matter. The Women s forum has been postponed to the Fall due to low registration as well as other statewide activities and another women s conference taking place on the same date. The agenda and location of the forum will 1

2 remain the same, Cumberland Community College. The theme of this year s forum is Women s Health and Wellness Across the Lifespan. The forum will bring diverse women of all ages together and offer opportunities to network with each other while learning about prevention strategies for improved health and wellness. Break-out sessions include three learning tracks and presentations should be framed and delivered through the lens of social determinants of health and offer strategies for self-care. The learning tracks are: (1) Nutrition & Fitness: So What s Right about having Chocolate? A self-reflection on nutrition and fitness (2) Pregnancy & Birth: A multi panel approach to address issues that can come up during pregnancy that affect health. (3) Peri/post menopause: maintaining health and honoring culture. The Keynote speaker, Jill Wodnick of Montclair State University will weave the topics together and lay the groundwork for understanding the social determinants of health and prevention strategies through selfefficacy and care. Other presentations planned are: an active Yoga/Mindfulness session, a NJ Zika update. The quarterly Statewide Community of Care Consortium for Children and Youth with Special Healthcare Needs (COCC) meeting was held on June 8, India R. Hayes Larrier, Health Care Organizer from NJ Citizen Action provided an informative presentation and resources on Healthcare: Where We Are and Where We May Be Headed. Patricia Phillips, Education Outreach Coordinator from NJ Center for Tourette Syndrome & Associated Disorders, Inc. provide an update on their new initiatives and partnership opportunities. Updates on the 2017 MCH Block Grant hearing and D70 State implementation Grant were provided by Department of Health partners, Marilyn Gorney-Daley and Brittney Johnson. The Early and Continuous Screening workgroup surveyed the workgroup members for topics and possible youth participation for future workgroup meetings. There was a presentation of Deepa's NJLEND poster - Environmental Scan of NJ's Early Childhood Services. The Medical Home/Community Services workgroup reviewed and provided feedback on a new Family Voices provider resource (a letter template) for immigrant families who may face deportation. The Transition to Adult Life workgroup discussed strategies for engaging self- advocates in the COCC and discussed resources available on the website, specifically For youth by youth. The Adequate Public & Private Insurance workgroup compiling resources that identify health care protections for people with disabilities within the changing health care environment. For more information, contact Jeanne McMahon at jmcmahon@spannj.org CHILDREN WITH SPECIAL HEALTHCARE NEEDS Learn the Signs. Act Early Ambassador Project: Deepa Srinivasavaradan presented Act Early information and resources to Women, Infants, and Children (WIC) program staff to share with families with young children they serve. It was well received by WIC staff and she is following up with them to ensure ongoing sharing of information and resources with families. Deepa was invited to the Massachusetts Act Early Summit in Worcester, MA to share successes, challenges, and lessons learned from her Act Early work in NJ. Deepa will also be attending CDC's Ambassador Refresher Training in Atlanta next week to learn more with/from other state ambassadors. Deepa will be working with NJ Department of Children and Families to train parents and professionals participating in the NJ Early & Comprehensive Childhood Services (NJ ECCS) initiative on Act Early information and resources. For more information, contact deepas@spannj.org 2

3 Systems Integration (D70): The D70 Medical Home Systems Integration Project is a collaborative partnership between NJ Department of Health (NJ DOH), NJ Chapter of American Academy of Pediatrics (AAP-NJ) and SPAN. We actively support the 25 Medical Home practices that are linked with SPAN. All the practices have received in person trainings on SPAN services and have benefited from county based resources to share with the families of CYSHCN they serve. We held an in-person training on inclusion for 2 Middlesex County medical home practices which featured two self-advocates. The training and resources were well received and the families were moved beyond words by their powerful stories, which made the training more effective and relevant. We completed a SPAN awareness webinar that will be archived for ongoing training for the Medical Home Practice Teams. The final component of our training series will be a live webinar on transition, featuring Erin Seigh, our Transition Coordinator, and Dr. Steve Marcella. For more information, contact Mercedes Rosa at mrosa@spannj.org. Autism Medical Home (AMH) at Hackensack University Medical Center: The Hackensack University Autism Medical Home Program has serviced over 350 families via phone or in person. Technical assistance: Families who participate in the A.M.H Program receive technical assistance from a SPAN Family Resource Specialist and are educated on special education laws and parental rights. Families who are in need of additional services in the community are guided through the NJ Systems of Care and the Division of Developmental Disabilities application with the assistance of the SPAN FRS. As of May 15 th 2017 there have been 39 families who have successfully walked through the DDD application process with 100% approval. These families now receive assistance with summer camp, sensory gyms and respite care. The SPAN Workshop series are provided free to families on a monthly basis during both the day and evening hours. They are held at the H.U.M.C Wellness Center in Paramus NJ. The topics are designed to meet the needs and interests of families of children who are at risk for or already diagnosed with a disability. The series will continue through June of Each interactive session is scheduled for 1.5 hours which includes a presentation, hands-on activities, and group discussion. Over the past 7 months there have been a total of 63 families who have attended the SPAN Workshop Series. Parent Support Group and Parent Advisory Board: There has been a Parent Support Group and the Parent Advisory Board created for the participating families of the A.M.H. The Parent Support Groups are held once per month. There are morning and evening groups for the convenience of parent s schedules. The groups give parents a reassuring feeling to know that there are many families who go through similar issues who want to help each other and share their experiences. The Advisory Board helps parents with diminishing their isolation and helps them to collectively voice family concerns, while increasing their influence on the care and services provided to their children. Its members consist of 7 families, the SPAN FRS, the Unit Social Worker, a Nurse Practitioner and the Medical Home Grant Coordinator. The most recent activity held was the Family Fun Night on May 12 th The event was created to promote an open and inviting space for children with Autism and their families to gather and enjoy recreational programming. Families were able to bond and 3

4 share their experiences while at the same time participating in fun activities with their children. For more information, contact Kasey Dudey at Family to Family Health Information Center (F2F): Provides information and support to families navigating proposed health care changes and engage them in direct advocacy strategies to thwart negative policies that will impact NJ Families. We have helped to recruit families to attend scheduled rallies and vigils held around the state and encouraged them to keep calling legislators and hold them accountable for their votes around this critical issue. The response of families to the call to action and advocacy has been mixed and highlights the need for ongoing training and awareness about how services and programs are actually funded and to understand the Medicaid/ACA connection to adult programs, school therapies and broader services families receive. We will infuse recent data created for the Children s Hospital Association that shows the alarming impact and the magnitude of the threat of AHCA (see %20Childrens%20Hospital%20Association%20Report%20on%20Medicaid%20Capped%20Fun ding%20embargo.pdf?utm_source=avalere%20report&utm_medium=press%20release&utm_ campaign=avalere%20report) For more information, contact Mercedes Rosa at mrosa@spannj.org. Empowering Parents to Address and Prevent Obesity in their Children with Special Needs Project: The first educational/training series for this Project has begun in Montclair. Partners for this series include the YMCA in Montclair and NJ SNAP-Ed. Parents have learned strategies to improve nutrition and the health of their children with special needs. Parents have been connected to local community resources and are being supported by the area Support Specialist. The second educational/training series is scheduled to begin in June. Mi Casa es Puebla will be hosting this series. This series will be offered in Spanish. For more information, contact Brenda Figueroa at bfigueroa@spannj.org NJ Parent to Parent (NJ P2P): NJ P2P continues to connect families through a robust social media platform. The P2P Facebook Page currently has a total of 782 members and shares over 150 resources per month. The P2P Twitter account has a total of 108 Followers and to date we have shared 320 resources. The Padre a Padre NJ Facebook Group has 120 members. This group only shares Spanish resources. The group shares over 50 Spanish resources per month. Both P2P Facebook pages have a steady group of parents that also contribute to the sharing of resources. The P2P Regional Parent Associates have conducted outreach within their regions which has helped spread SPAN s mission. For more information, contact Brenda Figueroa at bfigueroa@spannj.org PARENT LEADERSHIP & PARENT PROFESSIONAL COLLABORATION National Center for Family-Professional Partnerships: SPAN and Family Voices have now facilitated four two-day trainings across the country aimed at improving diverse family leader ability to serve effectively on groups focused on improving systems serving children and youth with special healthcare needs (CYSHCN) (based on Serving on Groups) and the capacity of state agencies to more meaningfully and deeply partner with diverse stakeholders (based on Leading by Convening: The Partnership Way). Workshops in Vermont for Maternal and Child Health 4

5 Bureau (MCHB) Regions 1 and 2; New Mexico for Region 6; Utah for Region 8; and Arizona at the National Federation of Families for Children s Mental Health conference, for 60 representatives of 25 family organizations and 20 representatives of 12 state agencies and professional organizations. Pre-post surveys demonstrated significant growth in perceived knowledge, skills, and confidence to use the strategies and tools addressed in the workshops to prepare and support diverse family leaders to participate on systems-level advisory committees, task forces, etc. Several Serving on Groups modules were presented at the biannual NJ Statewide Parent Leadership and Advocacy conference on May 6th. We also completed a three-part webinar series for youth/young adults on Participating on Advisory Groups; Telling Your Story for a Public Policy Purpose; and Working with Adult Allies in partnership with the Autistic Self Advocacy Network; Kids As Self Advocates; and National Youth MOVE. Finally, we facilitated several webinars for families and state Title V programs on family organizations and families partnering with Title V and on Engaging Diverse Families in Leadership for Systems Change. mid-november. The next training will be facilitated at the Family Voices National Family Leadership Conference in DC in The NJ state agency representatives and SPAN staff who participated in the training are planning a two-part NJ Summit on Leading by Convening and Serving on Groups in the fall. For more information, contact NCFPP Co-Director, Diana Autin, at diana.autin@spannj.org. NJ Leadership Education in Neurodevelopmental and Related Disabilities (NJLEND): The program completed its inaugural graduate-level interdisciplinary training for 10 fellows at The Boggs Center in New Brunswick. The training was held from September to May and a graduation ceremony was held on May 5, 2017 at the Children s Specialized Hospital Auditorium in New Brunswick. Sue Swenson, former Acting Assistant Secretary for OSERS at the US Department of Education, delivered an inspiring and moving speech that highlighted the importance of continued advocacy to support families who have children with special needs. The graduates displayed poster presentations of their individual projects. SPAN staff Jeannette Mejias and Deepa Srinivasavaradan were among the graduates (see picture below). The project will soon be recruiting for the second round of trainees. SPAN is working with the BOGGS Center to create a new flyer to recruit Mentor Families for the next academic session in September, Whether as trainees or mentors, NJLEND allows for the infusion of family perspectives, provides a context for family-centered care, and offers opportunities to strengthen and inform future health care professionals on family advocacy. 5

6 LEND Graduation: SPAN is very proud to have had two staff, Jeannette Mejias and Deepa Srinivasavaradan, graduate as Family Fellows from the first cohort of NJLEND. Jeannette s Leadership project is the Transition to Adulthood Roadmap to assist caregivers, health care providers and self-advocates learn what Transition resources exist around Education, Financial Assistance, Healthcare, Housing, Legal Services, Employment, and Transportation. Jeannette will continue to dive into this work to achieve better outcomes for children and youth with Special Healthcare Needs (CYSHCN) by sharing the fact sheets with partners, families, professionals, and self-advocates. Deepa s Leadership Project is an Environmental Scan of NJ s Early Childhood Systems to see how early childhood systems are functioning, identify gaps if any, and come up with some recommendations to address the gaps. Deepa will continue to work with partners and families across the state to ensure better outcomes for children and families in NJ. National Children s Mental Health Awareness Day: SPAN s Nicole Pratt, PTI Senior Staff Trainer, FASD Training and Project Coordinator and Senior Trainer of the NCFPP project, was a featured panelist at the Substance Abuse & Mental Health Services Administration (SAMHSA) Mental Health Awareness day on May 4 th in DC. The focus was on integrating primary and mental health care for children with both mental health and other special healthcare needs. Special guests at the event were Michael Phelps and Allison Schmidt, Olympic gold medal swimmers who spoke about their own depression and anxiety and how it has impacted their lives. You can view the SAMHSA panel recording of the events at Awareness-on-Childrens-Mental-Health html. You can access the NJ Spotlight interview of Nicole at 6

7 home-and-at-work/ Nicole Pratt is 2 nd from left in this photo with Olympic gold medalists Michael Phelps and Allison Schmidt, & other panelists 7