Delaware’s New Hands and Voices Chapter
By Alisa Maria Olshefsky, MPH
Chief, Family Health and Systems Management
Delaware Division of Public Health
The Delaware Title V program has revamped its approach to partnering with families on all aspects of MCH and CYSHCN services and systems. This required assessing how families were involved and whether they felt empowered to make a meaningful contribution to program vision, mission and operations. By reframing the approach to be more strengths-based, the interactions between public health staff and families were focused on what each brought to the table and how to build on those unique assets. This approach has yielded great results with the new Delaware Hands and Voices Chapter, led by Mrs. Julie Johnson. Hands and Voices is a national nonprofit dedicated to supporting families of children who are deaf or hard of hearing. Mrs. Johnson is the parent of an energetic 15-year-old son who is also deaf. Through her work in early childhood, Mrs. Johnson has been a long-time advocate for children, including services for those with special needs.
In 2007, Mrs. Johnson connected with Delaware Title V staff during an annual hearing conference. Once the common ground was laid, a strong partnership blossomed. And through this collaboration, the Delaware Chapter of Hands and Voices was officially launched in January 2010 and Guide by Your Side will be implemented in September 2010. Guide by your Side is a program offered through Hands and Voices that builds on family peer support.
What made this state-family partnership work?
· Program staff was 100 percent committed to creating a program that was guided by families. This perspective required that families be in the “driver’s seat” not simply passengers.
· Mrs. Johnson and other family advocates invested in the relationship and saw the final goal as worth working within the structure of state government (e.g. state contracting, purchase orders, after-the-fact payment, etc.) striving for consistency and a coordinated system of information and referral.
Since her son is older now, Mrs. Johnson admits that her family will likely not benefit from the new parent support through Guide by Your Side, but believes that “something had to change. I could either stand on the sidelines or get involved and change something.” Clearly she chose change and Delaware’s Title V program is stronger because of it. To learn more about the Delaware CYSHCN program, contact Alisa Olshefsky.
Teens participating in the 2010 Delaware Hearing Conference
“Still Listening.” Left to right: Travis Costello, Kylie Joy Jester, Kyle McEvoy,
Margo Price, Quinton Johnson V, Isabel Glasman (front).
The Family Discipline in LENDs
By Fran D. Goldfarb, MA, CHES
Director, Family Support, USC UCEDD CHLA, Chair, AUCD LEND Family Discipline Workgroup
Leadership Education in Neurodevelopmental and related Disabilities (LEND) is an interdisciplinary training program funded by MCHB. As early as 1995, family members have had a role in preparing future health and allied health professionals to work with children with disabilities and their families, and their involvement continues to grow.
In preparation for being honored as the 2005 LEND Discipline of the Year, LENDs were surveyed to identify the various ways that families participated as faculty and trainees. Responses indicated family involvement varied at different programs, with families participating in LEND as steering committee members, guest lecturers, student mentors, and full-time paid faculty. Most LENDs had a least a part-time Family Faculty, but only 46 percent included family members as trainees. By 2007, 64 percent of the LENDs had Family Trainees and the number continues to grow through the efforts of families and staff, and with the support of MCHB. A 2010 survey, currently being conducted will document our continued success.
Since 2005, the LEND Family Discipline Faculty Workgroup has continued to identify issues unique to family programs and support the continued successful incorporation of family members into LEND programs as faculty members, consultants and trainees. Workgroup members provide consultation and mentorship to new faculty and to LENDs newly adding family as a discipline to their programs.
Workgroup Publication Highlights:
- Promising Practices in Family Mentorship[i]: A guidebook for MCHB training programs seeking to incorporate family mentorship of trainees.
- LEND Family Competencies[ii]: Suggested competencies for LEND trainees in the Family Discipline.
Both are published by the Association of University Centers for Disabilities.
- “Partnering with Professionals: Family Centered Care from the Family Perspective,”[iii] published in the March-April 2010 Journal of Family Social Work, provides insight from parent professionals who work in clinical settings and as faculty, to the ongoing challenge of actualizing the promise of family centered care.
Please contact Fran Goldfarb or call (323) 361-3831 for more information about workgroup activities and products.
[i] Ogburn, E., Roberts, R., Pariseau, C., Levitz, B., Wagner, B., Moss, J., Adelmann, R. (2006, October). Promising Practices In Family Mentorship: A Guidebook For MCHB-LEND Training Programs. Silver Spring, MD: Association of University Centers on Disabilities
[ii] Cohen, D., Feurer, S., Goldfarb, F., Lalinde, P., Smith, M, Yingling, J., Pepper, N. & Pariseau, C. (2006) Family discipline competencies. Silver Spring, MD: Association of University Centers on Disabilities.
[iii] Goldfarb, F., Devine, K., Hill, A., Moss, J., Ogburn, E., Roberts, R., Smith, M., Pariseau., C., Yingling, J., (2010) Family Centered Care from the Parent Perspective, Journal of Family Social Work 13:2, 91-99
Oregon Engages Youth with Disabilities in Preconception Health
By Emilee Coulter-Thompson, MSW
Women’s Health Educator
Oregon Public Health Division
Julie McFarlane, MPH
Women’s Health Program Manager
Oregon Public Health Division
Oregon is one of six states participating in AMCHP’s Action Learning Collaborative (ALC) on preconception health for adolescents. The Oregon Team focus is on developing recommendations for preconception health for young adults with disabilities. Current research and literature on this topic is sparse and youth with disabilities are often overlooked by other clinical and public health initiatives or assessments. Oregon Team members include representatives from the disability community, youth leaders and public health professionals.
The Oregon Action Plan includes three goals:
- Raise awareness and improve messaging about the way disability is perceived among the ALC Team and outside partners
- Assess preconception health issues and needs of youth with disabilities
- Develop recommendations on how to better include youth with disabilities in public health assessments and a model policy to address the intersections of youth with disabilities and preconception health
To raise awareness about disability and examine how disability is perceived in public health, two team members, Stacey Milbern from the National Youth Leadership Network and Marjorie McGee from the Women with Disabilities Health Equity Coalition, facilitated a training for the Oregon Team members and delivered presentations for Oregon Public Health Week and the Oregon Adolescent Sexuality Conference. A group norm has been established during regular meetings that Marjorie or Stacey regularly pause the conversation to help the team more fully understand context and the diverse views within disability communities.
The team is using strategies from a Youth Action Research Model to inform its recommendations. This model includes community members as equitable partners in guiding the research, recommendations and in developing a model policy on how to best integrate youth with disabilities into preconception health and public health assessments and surveillance efforts.
Oregon’s process is unique because members take time at the end of every meeting to reflect on the process of what worked, what people learned and what could be improved, which increases the team’s understanding of how to effectively include and work with youth with disabilities. The team documents the process of building collaboration amongst multidisciplinary team members to facilitate future replication in other public health settings. In addition, the team is integrating multiple perspectives and frameworks (disability rights, preconception health, women’s health, adolescent health and health equity) in the recommendations on how to improve the preconception health of young adults with disabilities.
To learn more please contact Julie McFarlane or Emilee Coulter-Thompson. Information about Oregon’s additional preconception health initiatives is available at here.
Texas’ Leadership Education Adolescent Health (LEAH)
By Valerie F. Bowman, LMSW
Project Coordinator, BCM/TCH LEAH Transition Project
Albert C. Hergenroeder, MD
LEAH Program Director, Professor of Pediatrics, Chief, Division of Adolescent Medicine and Sports Medicine, BCM and Project Director, BCM/TCH LEAH Transition Project
In 2009, Baylor College of Medicine’s (BCM) MCHB-supported Leadership Education in Adolescent Health (LEAH) Training Program received a two-year grant from the Texas Department of State Health Services to assist in improving health care transitioning for Children and Youth with Special Health Care Needs (CYSHCN) at Texas Children’s Hospital (TCH). Highlights of the three grant arms include:
Transition Conference Scholarships. CYSHCN and their parents/caregivers receive scholarships to attend the annual BCM LEAH-sponsored transition conference. Families have played central roles in this conference, including: serving on the Conference Advisory Committee which reviews the evaluations of the previous year’s conference and makes recommendations on the topics, speakers and activities for the next year; and, serving as faculty every year for the 10 years of the conference.
In 2009, six CYSHCN and 43 parents/caregivers attended the conference, all expenses paid. Spanish translation was provided which enabled eight Spanish speaking-only parents to attend.
This was the largest number of CYSHCN and parent/caregiver attendees in the 10-year history of the conference. Many had not been exposed to transition information. Quotes from parents included:
- “I took my son to his pediatric doctor yesterday, gave the nurse a copy of the protocol for transition and let my son ‘be in charge’ of the visit.”
- “This was a truly life changing event.”
- “The program has provided the necessary tools to push me to start transition now.”
- “I plan on bringing a team of people next year!”
Grant funding will provide for at least 50 CYSHCN and their parents/caregivers to attend Baylor College of Medicine’s 11th Annual Conference on November 11-12, 2010, in Houston, Texas.
Data Collection. Research staff was hired to conduct a study of process outcomes related to the implementation of Transition Readiness to Adult Care Services (TRACS), a project developed at TCH. TRACS is an electronic medical record tool created to facilitate transition planning for CYSHCN and their families: 117 families, 39 healthcare providers, and 13 specialty clinics are participating. Data about patient/parent/caregiver satisfaction will be gathered as part of this project and used to improve the process.
Transition-focused Medical Rotations. Faculty and resident salary support are provided for a one-month rotation for internal medicine residents, through the BCM Transition Clinic for young adults with complex, special healthcare needs who are transitioning from pediatric-based care. Eight residents have completed the training and indicated they would be more likely to provide primary care for this patient population compared to the pre-rotation period.
To learn more about TRACS or the transition conference scholarships, e-mail TRACS@texaschildrens.org.
Wisconsin’s Community of Practice on Autism Spectrum Disorders and other Developmental Disabilities
The Wisconsin Medical Home Autism Spectrum Disorder (ASD) Connections Initiative (Connections) is a State Implementation Grant for Improving Services for Children and Youth with ASD and other Developmental Disabilities (ASD/DD) and is located in the Children and Youth with Special Health Care Needs (CYSHCN) program of the Wisconsin Department of Health Services (DHS). Connections uses contracts with key partners, including the University of Wisconsin-Madison Waisman Center and the Regional Centers for CYSHCN, to strengthen the state’s infrastructure and support for families with CYSHCN. The CoP represents an innovative strategy in bringing together diverse partners.
The Community of Practice is led by a 27-member Steering Team, representing many organizations, meets six times a year and gives input on CoP planning, improvement and sustainability. Co-chairs are Emily Levine, a parent of a child with ASD and Executive Director of the Autism Society of Southeastern Wisconsin, and Sharon Fleischfresser, the Medical Director of the CYSHCN Program and Connections’ principal investigator.
Among the topics addressed since its original meeting of the CoP in March of 2009 are the following: parent supports, professional development, urban issues, medical home and resources. During each meeting, emerging national best practices and/or research of national significance are highlighted, and participants are given the opportunity to share existing state and local model practices and Professional Development Practice Group (PG) reports. Participants also engage in a networking lunch and PG meeting.
The composition of CoP ASD/DD demonstrates that key stakeholders are participating. Over 50 agencies/organizations representing education, health, state, regional and local entities including self-advocates, family members and family organizations are represented in the CoP. A listserv reaches the 403 CoP ASD/DD members and is used to announce CoP meetings, send pre-meeting preparation tasks and PG meeting notes.
The CoP ASD/DD has provided a key mechanism to build and strengthen partnerships. This past fall, the group collaborated with the Milwaukee-based Urban Autism Summit to address reaching urban populations and traditionally underrepresented groups. The upcoming meeting in October 2010 is co-sponsored by the Wisconsin Community on Transition and the Autism Society of Wisconsin.
Professional Development Practice Groups are a key part of the process and are established with co-facilitators taking a lead for group process and follow-up. PGs address the following focus areas: professional development, medical home, parent supports, community systems, youth transition, policy, and education and awareness. This process has led to the development of additional training by participants, including the development of a summer institute which includes three one-week summer courses in Milwaukee. As the participant, Dr. Lynn Stansberry-Brusnahan from University of St. Thomas noted, “This class is an outcome of the Professional Development Practice Group which identified the need for advanced training on ASD.”
The CoP is now addressing sustainability and future activities. At a recent steering team meeting, the team reported that people are using the CoP ASD/DD to connect beyond their usual partners, talk face-to-face with other stakeholders, and collaborate across organizations to promote and enhance their work. The recommendations to date are:
- Continue the CoP with a scaled-down model (e.g., half rather than full day) as an approach to bring statewide stakeholders together to learn and network
- Continue the Steering Team as a mechanism to stay connected
- Conduct an environmental scan of ASD/DD-related groups and opportunities for information sharing and aligning our work with these groups
- Review who’s missing from and reach out to expand the stakeholder group
To learn more about our CoP ASD/DD or to view past agendas, PG meeting notes or upcoming events, visit here.
With contribution from the Wisconsin Department of Health Services staff.