In this webinar, speaker Shea Tanis, PhD, past-chair of the National Sibling Leadership Network, co-founder of Colorado Sibling Leadership Network Chapter - Sibling Tree, and Associate Director of the Coleman Institute for Cognitive Disabilities at the University of Colorado, discusses: - The evolution of the sibling relationship across the lifespan and generations - Collective Family Empowerment and the importance of future planning - The changing landscape of disability programs and services with siblings as professionals, advocates, and caregivers - The sibling movement and how you can support siblings

1. Welcome to the USC UCEDD Webinar Series
for Individuals with Disabilities & Parents
funded by grant #90DD0695 from
the Administration on Intellectual and Developmental Disabilities (AIDD)
Administration on Community Living
June 30, 2016

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Your Moderator
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Susan Kanegawa
USC UCEDD Family Support Coordinator
skanegawa@chla.usc.edu
www.uscucedd.org
The USC University Center of Excellence in Developmental Disabilities at Children’s Hospital
Los Angeles (USC UCEDD) is one of 68 UCEDDs funded to promote systemic change, advocacy,
and capacity building in states on behalf of individuals with, or at risk for, developmental,
behavioral and/or special health care needs, and their families.
The USC UCEDD Webinar series is designed to educate the community about current policy issues
which impact the lives of people we serve and their families. Our primary audience is individuals
with special needs and their families. At this time, our webinars are in English only. We are
exploring methods to make this series available in other languages in the future.

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Shea Tanis, PhD
Past-chair of National Sibling Leadership Network
Co-founder of Colorado Sibling Leadership Network Chapter --Sibling Tree
Associate Director of the Coleman Institute for Cognitive Disabilities at the University of Colorado
June 30, 2016
The Next Generation of Advocates
Siblings of People with
Developmental Disabilities

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About Shea Tanis
Emily Shea Tanis, PhD is past chair of National
Sibling Leadership Network, Co-founder of Colorado
Sibling Leadership Network Chapter—Sibling Tree,
and Associate Director of the Coleman Institute for
Cognitive Disabilities and faculty in the
Department of Psychiatry at the University of
Colorado Anschutz Medical Campus.
Email: shea.tanis@cu.edu
Website: http://siblingleadership.org/
The purpose of the Sibling Leadership Network is to promote a broad network of siblings who share the
experience of disability and people concerned with sibling issues by connecting them to social, emotional,
governmental, and provisional supports across the lifespan enabling them to be effective advocates with
their brother and sister, and to serve as change agents for themselves and their families.

7. Evolution of
Sibling
Relationship
Collective
Family
Empowerment
Changing
Landscape of
Disability
Programs &
Services
The Sibling
Movement and
How You Can
Support Siblings
Overview of the Webinar
7

8. Evolution of
Sibling
Relationship
Collective
Family
Empowerment
Changing
Landscape of
Disability
Programs &
Services
The Sibling
Movement and
How You Can
Support Siblings
8
The Evolution of the Sibling Relationship
Across the Lifespan and Generations

9. Sibling relationships
“ From the time they are born, our brothers and sisters are our collaborators
and co-conspirators, our role models, and cautionary tales. There are our
scolds, protectors, goads, tormentors, playmates, counselors, sources of
envy, objects of pride. They teach us how to resolve conflicts and how not
to; how to conduct friendships and when to walk
away from them. Our siblings may be the only
people we’ll ever know who truly qualify as
partners for life.” – Jeffery Kluger (2006)
• By the time children are 11 years old, they spend
33% of free time with their siblings--more time
than they spend with parents, teachers, or friends.
• Adolescents spend at least 10 hours per week
engaging in sibling activities.
9

10. Siblings are with us for the whole journey
• Sibling relationships are characterized by emotional intensity--they are
a rollercoaster of positive and negative emotional upheavals.
• Siblings between the ages of 3-7 engage in conflict 3.5 times an hour,
siblings between the ages of 2-4 engage in conflict 6.3 times or more
every 10 minutes.
• Siblings who fight a lot as children may
become closer as adults.
• Even siblings who drift apart during
adolescence and early adulthood tend to
drift back together as they age.
• The sibling bond is no less enduring nor less
influential when one sibling has a disability.
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11. A “Population at Risk”
Historically, research on siblings of children with disabilities has focused on the
harmful consequences:
• Anger, guilt, resentment, embarrassment and jealousy are feelings often
internalized by these children - Atkins (1989)
• These siblings often worry more than “regular” youngsters
• They often feel alone and isolated especially if they are in a two-child
family - Muchnick (2000)
• They are reluctant to approach adults
• These siblings often experience added pressure to compensate for their
sibling’s difficulties - Vadasy et al. (1984)
• “Siblings of individuals with mental retardation score higher on
measures of depression, anxiety, and scored lower on measures of
social acceptance and conduct” - Rossiter & Sharpe (2001)
• Sisters appear to be most vulnerable - Vadasy et al. (1984)
11

12. Factors that place siblings
“At Risk”
1. Parental Anxieties
2. Attitudes and Expectations
3. Family Resources
4. Gender
5. Age and Ordinal Position of the
Non-Disabled Child
6. Severity of the Sibling’s Disability
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13. Positive effects
• A meta-analysis of sibling research from 1972-1999 found a
small significance in negative effect for having a sibling with a
disability on the typically developing sibling. “This suggests
that the generalized concern about the social and psychological development of the
siblings of individuals with disabilities has been overstated”- Rossiter & Sharpe (2001)
• “Positive aspects include higher levels of empathy and altruism, increased tolerance for
differences, increased sense of maturity and responsibility, and pride in the sibling’s
accomplishments” - NICHCY (1988)
• These siblings are more mature, self-confident, independent, responsible and patient
• They derive a greater sense of closeness to their family
• They may develop greater leadership skills, especially where understanding and
sensitivity to human awareness issues are important - Arc (2007)
• These siblings have been more inclined to join the helping professions – Atkins (1989)
• Low depression, good health and experience high reward – Hodapp & Urbano (2007)
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14. Sibling developmental stages
• Feel confused, afraid, anxious and angry about their sibling’s disability
• Resent the time their parents spend with sibling and perceive it as rejection
• Mimic the physical or behavioral actions of the child with a disability and or
regress in behavioral development
• Prone to extremes in behavior (acting out or becoming the perfect child)
• Feel embarrassed or ashamed as they recognize differences
between their siblings and other children
• Feel protective and supportive of their sibling leading to the potential
of conflicts with peers
• Have future-oriented concerns
• Coping with anxiety about future responsibilities
• Be concerned of how the people they socialize with, date
and later marry will accept their sibling with a disability
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15. “ Each child’s reaction to having
a sibling with a disability will
vary depending on his or her age
and developmental level.
The responses and feelings of
the non-disabled sibling toward
the sibling with a disability are
not likely to be static, but rather
tend to change over time as the
sibling adapts to having a
brother or sister with a disability
and copes with day-to-day
realities.”
- NICHCY (1988)
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16. Adult sibling relationship
• Over time, a more positive relationship – Orsmond & Seltzer (2000)
• More involved if living near each other
• If multiple siblings, often one is identified as the most involved
• Siblings frequently become the primary caregivers when parents
are no longer able to care for their adult children – Heller & Arnold (2010)
• Reciprocity in sibling relationship
– Kramer, Hall & Heller (2013) & Burke, Lee, Arnold & Owen (2016)
• Characteristics that predict adult sibling caregiving
– Parents providing excellent care – Burke et al. (2012)
• Warm relationships with low levels of conflict – Heller & Arnold (2010)
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17. Changing Tides
17

18. Evolution of
Sibling
Relationship
Collective
Family
Empowerment
Changing
Landscape of
Disability
Programs &
Services
The Sibling
Movement and
How You Can
Support Siblings
18
Collective Family Empowerment and
the Importance of Future Planning

19. The Mobile
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• In family systems theory, what
impacts one member, potentially
impacts the entire family.
- Turnbull & Turnbull (1990)
• “When siblings of handicapped
children are involved in training
and therapeutic programs, the
entire family may benefit”
- Vadasy, Fewell, Meyer & Schell (1984)

20. 20
1950s
Family
Movement
(Parents)
1970s
Self-Advocacy
Movement
2007
Sibling
Movement

21. Collective Family Empowerment =
Parents + Self-Advocates + Siblings
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22. What can be expected?
 There will be a time when the routine will have to change
(caregivers, activities, living arrangements, etc.)
 If there is no future plan, all members of the family will be
thrown into crisis
 Planning is not easy
 To improve your family’s quality of life, planning is
necessary
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23. What is planning?
• Planning is more than having a will and special needs trust in
place
• It is more than identifying where your loved one will live
• It is more than one conversation with significant others in
your family member’s life
• It is an ongoing dialogue with other family members and
friends about long-term care
 Should be reviewed every few years to ensure it reflects
the needs of the individual and family
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24. Clear planning
• Despite the need to prepare for the future transition, only 25%-
50% of families have made concrete plans regarding future living
arrangements for their loved ones -- (Freedman, Krauss & Seltzer, 2009; Heller
& Factor, 1991)
• Adult siblings are the most likely family members to take over care
for their siblings with I/DD when their parents are no longer able,
and many siblings expect to become future caregivers…but not all
• 78% of parents who indicated that they had discussed future
situations with their adult children without disabilities, 64% of
these children remained unclear as their parent’s future plans
24

25. Futures Planning: Pieces to the Puzzle
• Identifying systems of supports
• Planning for the third-wave of transition
• Increase self-determination skills
• Specifics:
– Living situation
– Guardianship
– Work, retirement, and leisure
– Legal and financial planning
– General lifestyle choices
25

26. 26
Evolution of the
Sibling
Relationship
Collective
Family
Empowerment
Changing
Landscape of
Disability
Programs &
Services
The Sibling
Movement and
How You Can
Support Siblings
The Changing Landscape of
Disability Programs and Services
with Siblings as Professionals, Advocates, and Caregivers

27. Changing landscape
27
“What if we don’t change at all…
and something magical just happens?”

28. Chart 2. Shows the age
of family caregivers for
people with I/DD.
An estimated 24% of
caregivers are over the
age of 60, while 35% of
caregivers are between
the ages of 41 and 59.
Source: Braddock, D., et al., State of the States in
Developmental Disabilities, 2015, based on Fujiura (1998,
2013) and Larson et al. (2001).
Aging caregivers
Total: 3,556,203 Persons
28

29. Living situations
Chart 1. An overwhelming
majority (71%) live with family
caregivers.
The other places people with
I/DD live include alone in their
own home or with a roommate
and in supervised residential
settings which include public or
private institutions, group
homes, agency-owned
apartments, and foster/host
home care.
With
Family
Caregiver,
3,556,203
Supervised
Residential
Setting,
635,782
Alone or
with
Roommate,
785,925
Chart 1:
Estimated Number of People with IDD
by Living Arrangement:
FY 2013, U.S.
TOTAL: 4,977,911 Persons
16%
71%
13%
Source: Braddock, D., et al., State of the States in Developmental
Disabilities, 2015, based on Fujiura (1998, 2013) and Larson et al. (2001).
29

30. Family support
• Families are overwhelmingly the primary and often the only
source of support for their minor and adult members with I/DD.
• Over 58% of parents/caregivers spend more than 40 hours per week
providing support for their loved ones with I/DD beyond typical care,
including 40% spending more than 80 hours per week.
• These caregivers contributed approximately $450 billion in
unpaid care in 2009. Families spent approximately $6300
annually for unreimbursed out-of-pocket expenses of care, and
spend more when the family member is on a waiting list.
30

31. Only a fraction
of families receive formal supports
88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 12 13
FISCAL YEAR
0.0
0.5
1.0
1.5
2.0
2.5
3.0
3.5
4.0
4.5
MILLIONSOFFAMILIES
0.10 0.16 0.29 0.38 0.41 0.48 0.46 0.46
2.89
2.99
3.14
3.32 3.38
3.48 3.51 3.56
Total I/DD Caregiving Families
Families Supported by State I/DD Agencies
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the
States in Developmental Disabilities, 2014 .
31

32. Evolution of Supports and Services
• Only 1 in 4 U.S. adults with I/DD is estimated to receive
formal, or paid, supports – Braddock et al. (2015)
• 97.9% adults with disabilities received informal supports in
the areas of recreation, employment, or housing – Burke (2016)
• Success requires a blend of formal and informal supports
• Meaningful community inclusion for all family members to
improve family quality of life.
32

33. PAC leaders
Advocates
CaregiversProfessionals
33

34. Evolution of the
Sibling
Relationship
Collective
Family
Empowerment
Changing
Landscape of
Disability
Programs &
Services
Sibling
Movement and
How You Can
Support Siblings
34
The Sibling Movement
and How You Can Support Siblings

35. Sibling movement
• Siblings have longest relationship
• Siblings have been traditionally overlooked
• The sibling experience is varied and important
• Siblings do not want to be surrogate parents
• Most siblings are not included in family
discussions of future planning
• Peer nature of the relationship makes siblings uniquely
positioned to support their brothers and sisters with disabilities
to lead self-determined lives.
• National Sibling Leadership Network established 2007
35

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www.siblingleadership.org

37. 37
Support &
Information
Policy &
Advocacy
Research

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Sibling Leadership Network State Chapters

39. CaliforniaSibs
• The California Sibling Leadership Network is rapidly growing to Inform,
Support and Advocate with California Sibs. Our immediate focus is on
providing meet-ups for adult Sibs, speaking at events for both families and the
service provider community, and building a guide to the complex services
available for our siblings in California. Come join us, or stay in touch via our
website or social media links below.
• Contacts: Julie Neward (Northern California) or
Jaqueline Moreno (Southern California), Info@CaliforniaSibs.org
• For more information, visit:
Webpage: www.californiasibs.org
Facebook: www.facebook.com/californiasibs
Instagram: https://www.instagram.com/californiasibs/
Twitter: https://twitter.com/SibsCalifornia
Use Hashtags: #CaliforniaSibs, #CASLN
39

40. Sibling Involvement
• How siblings can get involved
• Organizations
• Advocacy efforts
– With and alongside brothers &
sisters
• Social networking
• Start own network
• Participating in programs & services
• Leadership opportunities
40

41. Sibling Involvement
How professionals and organizations can engage siblings in
the conversation
• Learn about the sibling relationship
• Engage siblings early in the conversation
• Seek out sibling input
• Identify sibling support programs
• Focus on the family as whole in service planning
41

42. Resources
• Sibling Leadership Network www.siblingleadership.org
• Sibling Support Project www.siblingsupport.org
– SibShops
– SibNet – For Adult Siblings
– SibKids – For Young Siblings
– SibTeen – For Teenagers
– Sib20 – For Siblings in their 20’s
• Books
http://astore.amazon.com/thesibsuppro-20
– “The Sibling Survival Guide”
– “Views from Our Shoes”
– “The Future is Now” rrtcadd.org
42

43. 43
Poll:
Do you now have a better understanding of the
unique sibling relationship, and how you can
support the collective family unit in future?

44. 44
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