Association of University Centers on Disabilities



Understanding the Family Perspective Curriculum

Instructors: Rochelle Baer, LCSW, Helen Masin, PhD, Alice Coutinho, MD, Helen Scarr, MS, Michelle Schladant, PhD, Jean Sherman, PhD, Sheah Rarbach, MS, RD

The Understanding the Family Perspective is an interactive lecture series to be provided to first year pediatric residents during their one-month developmental behavioral rotation. Also participating in this series will be other disciplines at Mailman’s LEND training program such as; social work, speech pathology/audiology, psychology, systems navigators and education interns. The rotation occurs on 4 Wednesday’s from 9am-12pm. The curriculum helps to build participants understanding of the issues and concerns of families who have a child with a disability. The lecture series is developed and delivered by parents of children with disabilities and an adult with a disability.

Learning Objectives:

1. Health care professionals will understand the perspective of an adult who grew up with a disability and how this will inform their practice.

2. Health care professionals will understand the services and supports needed by families who have children with disabilities.

3. Health care professionals will understand the concept of Family Centered practice, the medical home model and best practice communication skills.

4. Health care professionals will increase their awareness of and implementation of cultural competence in delivering diagnostic news.

5. Health care professionals will understand the loss of a child with a disability from the family’s perspective versus society, medical or community.

6. Health care professionals will understand the critical issues facing families when a child with a disability transitions into adult care.

7. Health care professionals will learn about assistive technology and the FAAST program in efforts to aid their families.

8. Health care professionals will learn about appropriate food choices, nutrition and how this impacts families with children with disabilities.

9. Health care professionals will have a tour of the Debbie School and understand about a school for children with special needs.

Below is a brief description of the lecture series:

Self-Determination/Advocacy- Rochelle Baer, LCSW

The participants engage in an intimate discussion with Ms. Baer about the challenges of growing up with a disability, the roles she wished doctors had filled and how the practice of medicine could have been more supportive. The discussion on frank topics will enlighten attendees on the role of the physician and other health professionals in providing care to children, young adults and adults with disabilities. Multi-media and personal stories will augment these discussions.

Receiving Diagnostic News-Helen Scarr, MS

This interactive discussion begins with the question, “What do all parents want for their children?” The responses generate an understanding about the systems of care that serve children with disabilities, including education, health (the medical home), mental health, family supports, community access and integration. The legal and financial supports to this system are incorporated into the discussion including IDEA, Developmental Disabilities Act, Section 504 of the Rehabilitation Act, and SSI. A packet of national, state and local resources are provided.

Building Family Centeredness- Alice Coutinho, MD

This module provides an overview of the Medical Home and Family Centered Care concepts and the extra importance of these concepts for children with disabilities and their families. A key tenet of this discussion is focused on establishing collaborative partnerships with families and recommended communication skills and behaviors. Strategies are provided as to how to build these concepts into their practice.

Delivering Diagnostic News- Helen Masin, PhD

This discussion centers on building and maintaining rapport while delivering diagnostic news with diverse populations. Delivering diagnostic news can be a very stressful time for both health care provider and the family. When the health care provider and the family come from differing cultural backgrounds, communication can be even more challenging. The anxiety and challenges of this difficult time can be managed more effectively when rapport is established between the health care provider and the family.

This experiential learning module will enable providers to self-assess and practice their skills in this arena. The module begins with a role-play with participants delivering diagnostic news to a family. The cultural scenarios will be adjusted to ensure that the family and provider come from different cultural backgrounds. Following the initial role-play, the participants practice building rapport and demonstrating cultural competency. Students will self-assess their performance from the first to the second role-play and discuss the relevance of skills to their clinical practice.

Grief and Loss: Supporting the Grieving Family-Helen Scarr, MS

This session is designed to support health care professionals’ work with families who have lost a child. Current research has dispelled many long held beliefs about children and death and this session presents current research findings and how these findings translate into best practices when health professionals are suddenly faced with a grieving family.

Transition to Adult Systems of Care-Jean Sherman, PhD

Transition to adult systems of care has emerged as one of the critical issues for children with disabilities and their families. The dramatic improvement in survival of children with chronic medical conditions into adulthood has presented challenges to both caregivers and health care providers. This session is designed to give an overview of the work MCCD has done with the state DD Council and Title V agency for implementation of transition activities to adult systems of care. This module will come from the family perspective and include real life scenarios of the gaps in finding appropriate medical care when a child with a disability grows up and ages out of pediatric care.

Nutrition: Special Topics-Sheah Rarback, MS, RD

This session is designed to address food and nutrition issues for children with chronic illnesses and specific metabolic disorders. The presentation reviews the importance of whole foods as opposed to highly processed artificial food.  Included are health benefits for the entire family, disease reduction, weight maintenance and improved immunity.  The goal is for the participants to be able to make healthy food suggestions to the families they work with.

Assistive Technology- Michelle Schladant, PhD

This session is interactive and participants will have a tour of the FAAST lab on the second floor and understand the role of assistive technology. They will learn how to assist families with AT questions and make appropriate referrals.

Communicating about sexuality to teens with disabilities-Rochelle Baer, LCSW (panel of adults who grew up with disability)

Sexuality can be a difficult topic to navigate with children and teenagers, but for a child and/or teen with a disability broaching sexuality can be more complex. The importance of not neglecting this topic in holistic care will be highlighted. This interactive discussion will help providers understand the realities of teenagers who have a disability and effective communication strategies to bridge understanding.

Disability Culture and Health Disparities- Rochelle Baer, LCSW

People with disabilities are often left out of cultural competency education for health care professionals which seem to focus on ethnic, racial or gender differences. This module will highlight key themes of disability culture, awareness and sensitivity and best practices. This discussion will include the work of the Alliance for Disability in Health Care Education, strategies for inclusion and health disparity issues and solutions.

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