Building Awareness and Support through LEND AUCD Presentation November 6 2017 Panelists Fran Goldfarb MA MCHES CPSP Director Family Support USC Childrens Hospital UCEDDLEND Nathan Grant ID: 754472
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Siblings of People with Disabilities: Building Awareness and Support through LEND
AUCD Presentation
November 6, 2017Slide2
Panelists
Fran Goldfarb, MA, MCHES, CPSP
Director, Family Support
USC, Children’s Hospital, UCEDD/LEND
Nathan Grant
President and Founder of Siblings with a Mission
Harvard College, Molecular and Cellular Biology
Katie Arnold, MS
Executive Director of the Sibling Leadership Network
University of Illinois at Chicago
Barbara Levitz, MS Ed
Director of Family Partnerships TrainingNY LEND & UCEDD/Valhalla Slide3
OverviewThe Health and Wellbeing of SiblingsLEND Sibling Curriculum Siblings as Family Trainees in LEND
Feedback & QuestionsSlide4
Life Course Activity: The Needs and Challenges That Siblings Experience
Activity in Sibling LEND CurriculumChart needs of siblings during childhood, adolescence, and adulthoodDetermine what professionals can do to offer support
Objective: Identify the needs and challenges siblings may face across the life course; recognize what the group knows By identifying needs, we can develop proper support systems Slide5
Health and Wellbeing of Siblings: Childhood
Needs and Challenges
Group Suggestions:
What Professionals Can Do
Group Suggestions:Slide6
Health and Wellbeing of Siblings: Adolescence
Needs and Challenges
Group Suggestions:
What Professionals Can Do
Group Suggestions:Slide7
Health and Wellbeing of Siblings: Adulthood
Needs and Challenges
Group Suggestions:
What Professionals Can Do
Group Suggestions:Slide8
Relevance of Group ActivityDemonstrates what group knows about the needs of siblings
Highlights importance of raising awareness of siblings’ needsCurriculum will inform about:
Needs of siblings across the life course How professionals can support siblings during various life stagesSlide9
The Sibling Relationship
Siblings have longest relationshipSibling experiences are often overlooked
Siblings have a peer perspectiveSlide10
The Health and Wellbeing of Siblings: The Psychosocial Needs
Feelings include sorrow, anger, jealousy, guilt, and confusion Common challenges: communicating feelings with parents and others, concern for future and health of brother or sister, and distress from reactions of strangers
1Siblings often feel alone in their experiences
Siblings become the long-term caregivers for their brother or sister with a disability
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Pit-Ten Cate, I. M., & Loots, G. M. 2000
Holl, E., & Morano, C. L. 2014. Slide11
Ethnographic Research Findings Show Need for Support
There is a need for support for siblings across the life courseSupport should include themes
of accessing disability-related information, providing support for caregiving, and enhancing the formal support system to address sibling needs1Support should be at an integrated
level that involves parents, family members, and health care professionals from multiple fieldsSiblings who have greater access to support services experience
greater wellbeing
and ability to care for their brothers and sisters with a disability
2Arnold, C. K., Heller, T., & Kramer, J. 2012.Holl, E., & Morano, C. L. 2014. Slide12
Sibling LEND CurriculumObjectives:Identify the life course experiences of siblings of individuals with disabilities Identify common positive and negative psychosocial impacts of having a brother or sister with a disability
List at least 5 support needs of siblings of people with disabilities Explain ways professionals can support siblings and families to plan for the future. Recognize the impacts that may result from various methods of sibling support Slide13Slide14
Curriculum Overview: 4 Topics for knowledge acquisition1. The Sibling Experience: Across the Lifespan
Young Siblings Teenage SiblingsAdult Siblings Diagnosis-Specific Experiences
Grief Support Note: All sub-sections include the following information:Research Articles and Guidelines
BooksVideo Clips Slide15
Curriculum Overview (cont.)2.How Professionals and Support Groups Can Help Siblings
Acknowledging and Addressing the Needs of SiblingsThe Impact of Support Groups for Siblings How Health Care Providers Serve Siblings: Support in a Medical Setting
Teamwork The Power of Advocacy and Resilience: A Sibling’s Unique Story Can Make A Difference Slide16
Curriculum Overview (cont.)3. Resources4. Importance of Long-Term Networks of Support
The Support Needs of Adult Caregivers Important Policy Information for Siblings How to Connect Siblings to Support GroupsHow to Establish Networks of Support Slide17
LEND Activities Interactive Group ActivitiesGroup Discussions Self-Reflections Case Study Writing Assignments Movie and Video Discussions
Objective: Assess and apply understanding of the life course experiences of siblings, and identify how to offer support to siblings during various life stages
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Example of a Case Study Writing AssignmentRead a
story about a teenage sibling Identify and write common emotions and challenges that the sibling discusses in her story Compare and contrast with an article
Describe ways support groups and professionals can help this siblingSlide19
Importance & Impact of Sibling CurriculumTo ensure professionals are prepared to include siblings in their work with people with disabilities and familiesTo provide knowledge and resources that professionals can use in their work with families so siblings can receive more support throughout the lifespan
To encourage professionals to view siblings as partners in the journey to ultimately improve outcomes for people with disabilities throughout their lives. Slide20
Including Siblings as
LEND Trainees and a
Sibling Issues LEND Session
Barbara Levitz, MS Ed
Director of Family Partnerships Training
NY LEND & UCEDD/Valhalla
Faculty-New York Medical CollegeBlevitz@wihd.orgSlide21
Siblings as LEND Trainees
Goal: 1 sibling each year as a designated Family Discipline Trainee
Usually 2-3 LEND Trainees from other disciplines who are siblings (PT, SLP, Genetics, OT, Social Work)
Parent Family Discipline Trainees are sometimes siblings, too.
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Recruitment of Siblings as LEND Trainees Constant contact blurb and a flyer
Outreach:
LEND Graduates…Family Support Networks…Sibling Groups… Independent Living Centers… Colleges…Disability Agencies… Community Advisory Committee
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Siblings Recruitment Resources
SibsNY
is the NY state chapter of the National Sibling Leadership Network (www. Sibsny.org)
www.siblingresources.org
A grant project funded by the
New York State Developmental Disabilities Planning Council
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Sibling Trainee Presentation
Family Quality of Life & Advocacy Part 1:
Sibling’s disabilityFamily interactions
Advocacy
Access to natural supports & formal services
Family, school and community inclusionSlide25
2) A “typical” day for your family
3) A discipline most helpful to your family and how?4)
What you would want professionals to know when interacting with siblingsSubmit PowerPoint presentation slides
Complete a post-presentation self-assessment form for family faculty feedback/evaluationSlide26
Reading: A sibling’s senior speech to 9th & 10th graders (2017)
Facilitated sibling panel discussionFamily Faculty share key thoughts of their sibling family members
Sibling Issues LEND SessionSlide27
What Siblings Would Like Parents and Service Providers to Know- Sibling Support Project Resources for Siblings of Children and Adults with Disabilities- YAI 2015 Sibling Policy Brief-
Sibling Leadership Network
Handout MaterialsSlide28
Guest siblings from the communityCurrent and invited former LEND Sibling Family TraineesCurrent LEND trainees from other disciplines who are siblings and Parent Family Trainees who are also siblings
Panel ParticipantsSlide29
Sibling Panel TopicsEveryday life growing up with a sibling with developmental disabilities
Positive and challenging aspects for you as a brother or sister Participation in a group that supports siblings of individuals with special need? If so, did you find it helpful and why?
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More Sibling Panel TopicsImpact of your sibling experience now and what the impact may be in the future
Key points that parents and professionals should know about how to better support siblings of individuals with developmental disabilities
Additional questions from trainees Slide31
The Sibling Issues session is an important part of the LEND
Family Partnerships Curriculum Training Module at WIHD
Siblings as LEND Family Trainees is a highly impactful aspect of the LEND program experience for all traineesSlide32
Siblings in LEND ProgramsFran GoldfarbLEND Family Discipline NetworkSlide33
IntroductionFamily as DisciplineFirst “officially” recognized in a meeting co-sponsored by AUCD and MCHB in 2005, but involving family members as trainees started earlier
The LEND Family Faculty Work Group emerged From the beginning, the Work Group was (and remains) focused and active. Some examples:
Developed original guidance documents for LEND Family FacultyCollaborated with other MCHB-sponsored training programs on family involvementDeveloped other guidance, including scholarly articles and technical assistance documents
Presented at national meetings on family as discipline and related topicsSlide34
LEND Trainee Recruitment SurveyIn 2015, the network conducted an informal survey to determineDefinitionQualificationsRecruitment StrategiesLEND Involvement Slide35
Definition of a Family Discipline TraineeNo universal definition3 common factors
Parent/family member of a person with a disabilityLived experience
Advocacy/Leadership experienceSlide36
EligibilitySlide37
Siblings in CA-LENDFran D. Goldfarb, MA, MCHES, CPSPDirector, Family SupportCA-LEND (USC)
Los Angeles, CaliforniaSlide38
Siblings in CA-LEND
Pediatrics Discipline
Family Support Discipline
Goal
GoalSlide39
Family Support DisciplineSlide40
Fran Goldfarbfgoldfarb@chla.usc.edu
323 361-3831Slide41
Any Questions?
Thank You For Listening!
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