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Siblings of People with Disabilities: Siblings of People with Disabilities:

Siblings of People with Disabilities: - PowerPoint Presentation

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Siblings of People with Disabilities: - PPT Presentation

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

sibling siblings family support siblings sibling support family lend professionals group trainees amp life disabilities discipline health challenges experience

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Slide1

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

2

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 Slide13
Slide14

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

Slide18

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.

 Slide22

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

 Slide23

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

  Slide24

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?

 Slide30

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!

All images are from Google Images and are intended for use for educational purposes