Leadership Education in Neurodevelopmental Disabilities (LEND)

LEND Family Collaboration Program

Director: Karen Tate

The LEND Family Collaboration Program offers Fellows a variety of responsibilities and options to enhance their ability to work effectively with, and on behalf of, families with children with special needs.

The aim of the Family Collaboration Program is twofold: 1) To have fellows participate in the Family Advisory Council on a rotating basis; and 2) involvement within one of the projects listed below.

Family projects

The Family Advisory Council: This requirement is designed to offer a close look at committee and task force structures that provide the foundation for the CHOP Family Centered Care Initiative. Fellows will rotate their participation on the Family Advisory Council on a monthly basis, so that each fellow attends at least one meeting. The Children's Hospital of Philadelphia established this Council in 1996 to include senior administrative staff and physician leadership in working with members of the Family Faculty at the strategic planning level. Council members work side by side with those planning and creating the programming for the hospital. Members from the Council may participate on various committees at CHOP addressing such diverse issues as Ethics, the South Tower Renovation, and Web Site Planning. Fellows will participate under the supervision of the Coordinator of the LEND Family Collaboration Program, and serve as a liaison for the LEND Fellows' Forum. This requirement offers fellows an opportunity to observe linkages between clinical services and the administrative structure of the hospital.

Family Collaboration Projects: All fellows must select a project to complete over the course of the training year. Listed below are some of the currently available options, although additional options can be developed based on individual fellows' interests and prior experiences, and on the resources available at CHOP or within the community. When the number of interested LEND fellows exceeds the number that can be accommodated by an option, LEND fellows will have to apply for that option and undergo a selection process. For example, the Youth Advisory Council (see below) can accommodate only two LEND fellows per year.

• Option 1: The Family Mentorship option is designed to provide fellows with a better understanding of the impact of a child's illness or disability upon the family. Families living with a child who has a chronic illness or neurodevelopmental disability provide the kind of person-to-person sharing of experiences that no textbook or classroom lecture can offer. Fellows will observe the challenges and triumphs of daily life, the family's strategies for accessing services, coping with stress, advocating on behalf of their child, incorporating medical and therapeutic interventions into everyday activities, and enjoying recreation or leisure activities. Fellows will be participant observers with the mentor families on two occasions - one in the home and one in a community setting.
• Option 2: The Youth Advisory Council (YAC) is comprised of adolescents 12 - 18 years old who are either current or former patients at CHOP, and who serve to advise the hospital administration and health care professionals regarding the patients' perspectives on programs, policies and services here. YAC recruits teens who are interested in having an impact upon their health care setting, and provides a forum for them to voice their concerns and opinions regarding their needs. The Youth Advisory Council meets on the second Monday of the month (September-June) from 5:30 p.m. to 7:30 p.m., with additional committee work as needed. Past projects have included a skit presentation to resident physicians concerning teen issues ("Yakity-Yak, We Talk Back!"), conducting a survey of patients regarding hospital meals, advising architects and planners about pending construction, sponsoring a special monthly evening recreation event for inpatients, and more. LEND fellows' primary responsibility in the past involved the supervision of YAC members in planning and providing the monthly recreation events.
• Option 3: Sibling Workshops. LEND fellows assist in conducting supportive workshops and activities for siblings of children with special needs and their parents. Using the Sibshop Model, the LEND fellows will have opportunities to learn more about the impact of growing up with a sibling with a disability or chronic illness. Children ages six to twelve years are divided into age-appropriate groups. Through group activities and discussions with peers, the children learn that other children share similar experiences in living with the challenges and issues that arise when a sibling has a medical or developmental condition. Parents meet in their own professionally led group to discuss their issues. Activities also are provided for the children with special needs if their families lack childcare. Workshops are conducted quarterly on Saturday mornings. Fellows will participate in planning for the sessions and will have the opportunity to rotate among the three groups (i.e., parents, siblings, and special needs child) each quarter.
• Option 4: Evenstar Bereavement Program. Leadership regarding the appropriate, comprehensive end-of-life care for children is an underdeveloped practice area for health care professionals. Sound, useful clinical practice based on scholarship about the complex needs of dying children and their families is also in need of development. LEND fellows are invited to have an in-depth learning experience with CHOP's bereavement services under the supervision of Malinda Ann Hill, M.A., Bereavement Coordinator for the CHOP network. Approximately 300 children per year die at CHOP as a result of accident, injury, chronic illness or disease process. The Evenstar Bereavement Program offers a variety of services to 1) support families coping with the death of their child and 2) educate professionals and the community about the grief process.
  
  LEND fellows will meet with Ms. Hill and together develop a program for the fellow which is derived from various aspects of the Evenstar Bereavement Program. Fellows will be exposed to the dimensions of clinical practice with dying children and their families, and the methods of comprehensive, multidisciplinary team treatment. Fellows will have the opportunity to observe and assist with the provision of support and follow-up activities, including individual consultations, ongoing bereavement support groups for parents and siblings, monthly workshops for bereaved families and the annual memorial service. Fellows will also have the opportunity to assist with staff support, education and training sessions.
• Option 5: Family Wellness Program. LEND fellows will have an opportunity to work with parents of deaf and hard of hearing children under the supervision of the director of the Family Wellness Program, Louise Montoya, MA, NCC, CSC. Louise is a Nationally Certified Counselor, and a nationally certified sign language interpreter with 18 years professional and a lifetime of personal experience with deafness and hearing impairment. Fellows may choose from a variety of support groups including parents of deaf/hard of hearing children ages 8 - 12, parents of newly diagnosed deaf/hard of hearing children, and parents of children with auditory neuropathy.
• Option 6: REACH Monthly (Saturday) Workshops. LEND fellows can assist in the development of the parent and family member component of the program. To fulfill the requirements the LEND fellow will meet with Karen Tate and Symme Trachtenberg and parents from the REACH program to establish specific objectives, including participation in at least one of the following activities in conjunction with REACH Leadership:
  • Provide a needs assessment to determine topics of interest for family members/caregivers
  • Participate in the parent aspects of REACH (program development, planning, and implementation)
  • Assist in developing educational modules and providing training for parents and teens. Topics include but are not limited to: wellness, self-care, and self-advocacy.

LEND family fellowship

Family members play in integral role in our training program. Karen Tate serves as the Director of Family-Professional Collaboration within our training program and organizes both the didactic presentations and the Family Professional Collaboration Activities in which our long-term trainees participate. Ms. Tate is the parent of a daughter with special health care needs.

For the last two years we have had a parent participate as a trainee in our LEND program. Our first LEND parent trainee was Ms. Tate.

Our second parent trainee, Beth Lohne has requested a second LEND training year to help us further develop our family-professional collaboration activities and her leadership skills. We have also had parent professionals who serve on the Health Intervention Program home visiting teams participate in LEND didactic activities.

LEND Family Fellows participate in all aspects of the LEND Program, including the research component. Our current LEND Fellow, Beth Lohne, will present her research poster for an ongoing family meetings project at the upcoming Third International Conference on Patient- and Family-Centered Care in Seattle.

Get more information:

• Community Education and Liaison Program
• Research Leadership Program