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

2

Your Moderator

2

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.

3

Structure and Logistics

3

Take notes Type your questions

Download slides

Watch and Share

Take Survey

During the Webinar

After the Webinar

Give your opinion

4

Poll: Can you hear Susan and Shea?

•4

Let us know in the chat box if we need to speak louder.

5 •5

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

6

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.

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

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

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

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.

10

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

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

12

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)

13

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

14

“ 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)

15

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)

16

Changing Tides

17

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

The Mobile

19

• 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

1950s

Family Movement (Parents)

1970s

Self-Advocacy Movement

2007

Sibling Movement

Collective Family Empowerment = Parents + Self-Advocates + Siblings

21

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

22

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

23

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

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

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

Changing landscape

27

“What if we don’t change at all…

and something magical just happens?”

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

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

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

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

MIL

LIO

NS

OF

FA

MIL

IES

0.10 0.16 0.29 0.38 0.41 0.48 0.46 0.46

2.892.99

3.143.32 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

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

PAC leaders

Advocates

Caregivers Professionals

33

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

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

36

www.siblingleadership.org

37

Support & Information

Policy & Advocacy

Research

38

Sibling Leadership Network State Chapters

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

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

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

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

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

Ask Us a Question

Please type your questions (Top-left corner of your MeetingBurner screen)

Thank you for attending and interacting!!

UCEDD SlideShare Page UCEDD YouTube Playlist

Webinar Evaluation Survey

Share and review webinar slides, handouts and video recording.

Don’t leave yet!! Please take 3 minutes to answer a survey about your experience with this webinar.