The Cigna Group · NYSE:CI
The Cigna — Investor Presentation (2012)
75 slides from The Cigna's investor presentation, 2012
Slide 1: Moms, Dads, Sibs, and Grandparents
Moms, Dads, Sibs, and Grandparents Prepared for: CIGNA’s Autism Awareness Series Presented by: Connie Anderson, Ph.D. Interactive Autism Network Kennedy Krieger Institute
Slide 2: Who am I?
Who am I? IAN’s Community Scientific Liaison Graduate of USC’s doctoral Sociology and Marriage & Family Therapy (MFT) program Mother of a teenager with Asperger syndrome – diagnosed at UCLA and Westside Regional Center at age 4.
Slide 3: What is IAN?
What is IAN? IAN is the nation’s largest online autism research project
Slide 4: IAN Project Goals
IAN Project Goals To accelerate autism research To engage families as partners in the research process To share knowledge as it is gained
Slide 5: What is IAN Research?
_— —s | AWeb Project of Kennedy Krieger Institute * Sponsored by Autism Speaks iAfresearch =~ Interactive Autism Network ¢ Linking Autism Researchers and Families discover — b revoarch ft : 4 What is IAN Research? Every day thousands of people from across the country are coming together through IAN
Slide 6: IAN is located at…
IAN is located at… The Kennedy Krieger Institute in Baltimore, Maryland The project is funded by Autism Speaks, the Simons Foundation, and the National Institute of Mental Health. …and provided a lot of the information we’ll discuss today.
Slide 7: ASDs: Impact on Families
ASDs: Impact on Families People on the spectrum have many wonderful, unique qualities, and their families love them. BUT… It ain’t no easy road.
Slide 8: Family Stress Questions
Family Stress Questions …included as part of IAN Parental Depression History Questionnaire Parents left thousands of detailed comments
Slide 9: Direct Child-Related Factors
Direct Child-Related Factors Child’s own issues can stress families big time.
Slide 10: Family Stress: Child Behavior
Family Stress: Child Behavior IAN data updated Apr 3 2009 N=4027 | Not at all A little A, moderate amount ma A great deal maz Not applicable
Slide 11: Child Behavior
Child Behavior Meltdowns, aggression, and exhausting hyper- vigilance Stimming, unusual behaviors, self-injury Possible lack of connection to parent: no affection coming back the other way Hit to parent self-esteem and feelings of competency; increasing social isolation
Slide 12: Sleep Issues
Sleep Issues Sleep issues – a problem for about 50% of the families Adds to stress, exhaustion, inability to cope Sleep deprivation used as a form of torture…
Slide 13: Family Stress: Setback
Family Stress: Setback IAN data updated Apr 3 2009 N=4027 | Not at all A little A moderate amount A great deal Pe Not applicable
Slide 14: Setbacks
Setbacks Setbacks: from classic regression to onset of seizures to new stimming behavior to crisis a child hit in late elementary school/middle school Gut wrenching for parents investing so much hope in every tiny increment of progress
Slide 15: Family Stress: Getting Treatments
Family Stress: Getting Treatments IAN data updated Apr 3 2009 N=4029 ; Not at all A little A moderate amount A great deal Se Not applicable
Slide 16: Getting Treatments
Getting Treatments “This is absolutely the MOST difficult part of having a child with ASD. I am so tired of fighting.” “We are told early intervention is vitally important but we have no support in getting or paying for the services. We are completely on our own to help our child.”
Slide 17: Treatment Disappointments
Treatment Disappointments 46% say treatment disappointments have a very negative impact Cycle of hope/disappointment as try new things at crisis point every time See “Evaluating Treatments” article on IAN Community: www.iancommunity.org
Slide 18: Family Stress: Worry About the Future
— Family Stress: Worry About the Future IAN data updated Jun 9 2009 N=4405 ma maz Ld] Not at all Alittle A moderate amount A great deal Not applicable
Slide 19: Worry About the Future
Worry About the Future 89% of IAN parents reported a moderate or great deal of negative impact due to worry over their child's future. Affects parents of all kids on the spectrum, whatever the child’s level of functioning. “This is the question that enters my mind every single day. I have to put it
Slide 20: Child-Focused Stressors
Child-Focused Stressors Family Stress Percentage Reporting Moderate or Great Negative Impact IAN data updated Apr 32009 N=4031 100 88 (A Treatment Disappointment GE Exhaustion MEE Getting Treatments ME, Setbacks ME Child Behavior HEE Worry for Future
Slide 21: Other Major Impacts
Other Major Impacts A child’s way of being, behavior, and needs has a direct impact on siblings, parents, etc. But there is a lot of “collateral damage,” as well.
Slide 22: Parent's Career or Education
Parent's Career or Education Parent's Career or Education Mother (n=3929) Father (n=369) LAN data updated May 20 2009 LAN data updated May 20 2009 Very positive MEE Somewhat negative Somewhat positive DN Very negative MEE No impact Graphs by Gender
Slide 23: Parent’s Career or Education
Parent’s Career or Education Hit to income, identity, social network “I am on the verge of losing my job…. No one can understand what it’s like…. It’s like I work at a fire department. I never know when I will get a call, or when I’ll have to leave.”
Slide 24: University of Rochester study reported:
University of Rochester study reported: 39% of parents of children with ASD said they had quit a job, not accepted a job, or greatly changed a job because of child care issues related to having a child with ASD – more than four times the 9% reported by families raising typically developing children.
Slide 25: Child with ASD: Family Impact – Financial Situation
i i O—a eee Child with ASD: Family Impact Financial Situation IAN data updated May 20 2009 N=4295 EO Very positive BE Somewhat negative EO Somewhat positive MN Very negative ME No impact
Slide 26: Financial Impact
Financial Impact “We hemorrhaged money on our son between ages 3 and 6 and we never really recovered financially. We are still struggling with the effects, as far as debt.”
Slide 27: “A world of their own – a world of isolation”
“A world of their own – a world of isolation”* Friendships/Social Network (59% negative impact) Extended Family (48% negative impact) *from qualitative Canadian study on families with a child with ASD
Slide 28: Isolation
Isolation “If you have good friends they are good through the Autism diagnosis of your child; if they are not good friends, they are gone...they drop off the face of the earth.” “Those 'best friends' turn to shadows....”
Slide 29: Isolation
Isolation “I quickly learned who my real friends were, so there was some very positive impact.... I no longer have the time, energy, or patience to put up with the old 'false' friends.” “Some relationships I thought were strong completely disintegrated; other family members I expected to have troubl
Slide 30: Critical looks of strangers…
Critical looks of strangers… Becomes easier just to stay home. Grandparents as caregivers echoed the same feeling. Keenly felt the injustice of bystanders’ critical looks when their grandchild “lost it” in public.
Slide 31: Couple Relationship
ee... n ———S | Couple Relationship Couple Relationship Mother (n=4270) Father (n=412) IAN data updated Sep 12009 IAN data updated Sep 1 2009 PY) Very positive HE Somewhat negative Somewhat positive MMMM Very negative ME No impact Graphs by Gender
Slide 32: Couple Relationship
Couple Relationship 80% divorce rate – FALSE A study looking at divorce rates for families of children with assorted disabilities found an average increase (over the rate for couples with non-disabled children) of only 5.97%. An Easter Seals' survey of families with a child on the autism spectrum, m
Slide 33: KKI Divorce Study
KKI Divorce Study Not yet published, but… Used 2007 National Survey for Child Health on kids ages 3-17. Final sample: 77,911. The outcome variable of family structure was dichotomized as being either traditional (two parent household, either biological or adoptive) or non- traditional (a two parent
Slide 34: KKI Divorce Study
KKI Divorce Study “Found no consistent evidence of an association between a child having an ASD diagnosis and that child living in a traditional versus nontraditional family. Exploratory analyses suggest that having ADHD, Externalizing, and Internalizing disorders are more strongly related to the pr
Slide 35: Key marital problems…
Key marital problems… Exhaustion and lack of time or desire for intimacy CONFLICT over burdens, path, division of labor One partner in denial Mental health issues; ASD or autistic-like traits in partner
Slide 36: Transformational Outcomes…
Transformational Outcomes… “Before our son was born my wife and I were on the fast track to divorce: constantly arguing about money and nitpicky stuff. After he was diagnosed, all of our money went into treating him so there was no longer any money to fight about. Our marriage is stronger now becaus
Slide 37: Transformational Outcomes
Transformational Outcomes “Most of the time we felt like no one else understood what we were going through. We felt like all we had to depend on was each other. It made us even closer because we made our marriage top priority. We knew it wouldn't do our son any good to lose the security of both pare
Slide 38: Parent-Focused Stressors
'Parent-Focused Stressors Negative Impact 80 60 Percentage Feeling Negative Impact 20 40 0 Families with a Child with an IAN data updated May 5d (Extended Family Relationships (ME Friendships and Social Network ME Parent's Career/Education HE Couple Relationship EE Financial
Slide 39: Resilience
Resilience Hastings and Taunt, who looked at a number of studies exploring parenting a child with a disability, noted very positive perceptions on the part of parents facing this life situation, including: Pleasure in providing care for their child Their child as a source of joy
Slide 40: Resilience
Resilience A sense of accomplishment in having done their best for their child A sense that their marriage or family had been strengthened by what they had gone through together as a result of the child's diagnosis A new sense of purpose in life A sense of personal growth (because they had become mo
Slide 41: What About Siblings?
What About Siblings? First of all… siblings of children with ASD may not always be “normal” themselves. Share genetics, etc. Latest estimated sibling recurrence rate: 19% overall.* Higher for male sibs (26%) and for sibs in families who already had more than 1 child with an ASD (32%). 20% are diagno
Slide 42: Siblings!
Siblings! May serve as models and playmates for ASD child. May “get” the ASD child. May defend the ASD child. But have their own burdens. What are they?
Slide 43: It’s hard being a sib because…
It’s hard being a sib because… So much attention goes to the affected child The affected child may not play in the way the other child expects/hopes. The affected child may be nonresponsive or aggressive. The affected child may do things that embarrass the sib in public or in front of peers. The sib
Slide 44: Sibshops for Kids and Teens
Sibshops for Kids and Teens Support network for siblings of children with special needs or disabilities.
Slide 45: Grandparents!
Grandparents! Grandparents often play a key role. Experiences differ widely, with some slow to accept, others first to recognize ASD. If they are close enough, geographically/emotionally, to care for the child with ASD, many of their concerns and experiences come to echo those of parents.
Slide 46: IAN Grandparents Survey
IAN Grandparents Survey More than 2,600 grandparents of children with ASD participated. Word spread by: Autism Speaks AARP Grandparent Autism Network
Slide 47: Grandparent Respondents
Grandparent Respondents Racially, not very diverse (95% white) – digital divide? From all 50 states and District of Columbia 17% from cities; 23% rural; 60% suburban Age: from 40-somethings to 80-somethings 83% – grandmothers; 17% - grandfathers 2/3 – maternal grandparent
Slide 48: Diverse educational backgrounds
Diverse educational backgrounds
Slide 49: Grandparent Work Status
randparent Work Status Grandparents of Children with ASD Work and Retirement Status IAN data updated Mar 25 2010 N=2477 t T T T T T T T T 0 5 10 15 20 25 30 36 40 Percentage GEG Retired - Not Working ME Hormemaker GE) Working Pre-Retirement GE Unemployed or Taking Leave GE Working Post-Retirement
Slide 50: Grandchild’s Diagnosis
randchild’s Diagnosis Grandchildren with ASD: Diagnosis IAN Grandparent Survey IAN data updated Apr 21 2010 N=2066 EO Autism WN PDD-NOS GGG Asperger MEM ASD or PDD
Slide 51: Grandchild’s Age
EL —EeE>_ randchild’s Age Grandchildren with ASD: Age | IAN Grandparent Survey IAN data updated Apr 21 2010 N=2286 -3 12 18-4
Slide 52: Distance to Grandchild
Distance to Grandchild © How Far Do You Live from Your Grandchild with ASD? IAN Grandparent Survey IAN data updated Apr 21 2010 N=2191 Same house (5-24 miles GR 100-499 miles HE Same ‘hood GS 25-99 miles ME 500+ miles
Slide 53: Family History and ASD
Family History and ASD Grandchildren with ASD Children with ASD Self -- ASD? JOnly 1 (85%) INone (89%) INo (97%) J2 or more — siblings (10%) Suspected ASD (8%) Suspected ASD (2%) |2 or more — cousins (5%) Diagnosed ASD (3%) Diagnosed ASD (1%)
Slide 54: Suffer “Double Whammy”
Suffer “Double Whammy” Worry about both grandchildren (affected and unaffected) and their own child (the parent).
Slide 55: One Challenge: Give Advice?
One Challenge: Give Advice? Typical problem for grandparents even harder for grandparents of kids with ASD – Should they offer an opinion? Differences of opinion, and limited power to act, can make it very hard for the grandparent, such as when: A grandparent felt a child should be evaluated, but a
Slide 56: We asked about “Denial”…
We asked about “Denial”... Grandparents of Children with ASD Their View: Who Has Ever Been in Denial? IAN data updated Mar 25 2010 N=2338 10 9 0 a 10 15 20 25 Percentage ES Myself MQ The OTHER Grandparents GE My Spouse or Partner ME Child's Parent - My Child MME Child's OTHER Parent MEE Pediatrician
Slide 57: Identifying ASD
Identifying ASD Grandparents of Children with ASD Did you play a role in identifying your grandchild's ASD? JAN data updated Mar 25 2010 N=2238 EN | was first to notice a problem. MQ | supported others who noticed a problem. MEE Concerns were raised, but | didn believe. HE ot made aware until after
Slide 58: Difficult issue: “I think it’s ASD”
Difficult issue: “I think it’s ASD” “I noticed signs when he was 2, but didn't know how to voice my concerns without hurting his parents. So we prayed for someone they would believe to notice. He entered pre-school two half days a week in September, and they noticed by October.” “Back when I suspect
Slide 59: Loving, Supporting, Worrying: Having a Grandchild with ASD
Loving, Supporting, Worrying: Having a Grandchild with ASD “My grandson with autism loves me more than any individual has ever loved me in my life, except possibly my wife and mother. One on one, he is the most loving person I have ever known.” – a grandfather
Slide 60: Caregiving and Transportation
Caregiving and Transportation
Slide 61: Treatment Decisions
reatment Decisions How Involved Are You In Treatment Decisions? IAN Grandparent Survey IAN data updated Apr 21 2010 N=2183 EO) sNot at all «= A lot ME A little HE Completely
Slide 62: Financial Support: General Needs
Financial Support: General Needs
Slide 63: Financial Support: Special Needs
Financial Support: Special Needs
Slide 64: Sacrifices
Sacrifices Grandparents’ Sacrifices On Behalf of Grandchildren with ASD IAN Grandparent Survey IAN data updated Apr 21 2010 N=2018 21 T T T T T o 5 10 16 20 25 Percentage Hs Went Without GE Raided Retirement [EM Borrowed Money ME Main Babysitter ME Cont'd Working ME Returned to Work
Slide 65: The Challenges
The Challenges Sadness “One challenge is keeping my sadness to myself so I don't further upset my children, and not giving advice or information when I know my children are stressed enough. I have problems relating to my autistic grandson - I feel sad and frightened by his autism and I am afraid he
Slide 66: The Challenges
The Challenges Physical “Babysitting an autistic child is extremely difficult. My grandson is big for his age - he's 6 years old and not potty trained. He is not always cooperative, but does not know he hurts me when he head butts (not often - but I think he cracked my tooth once).” “My grandson is
Slide 67: The Challenges
The Challenges Critical Looks of Strangers “I realize it's uncomfortable to witness a temper flair up or meltdown, but if people were informed that this behavior is not a brat having a temper tantrum but a child struggling to cope with outside stimulus, it would be helpful to the caregiver to have t
Slide 68: The Joys
The Joys Intense Connections “My grandson is the sweetest, kindest soul I know. He feels safe with me because I try to embrace the wonderful qualities he has. I love him so much and wish I could get him the help he needs. He is 11 years old and in Jr. High and he is picked on for his differences. I
Slide 69: The Joys
The Joys Witnessing Gains “My greatest joys have been the success of this little guy growing from a non verbal and non ambulatory 18 month old who was totally uninterested in another human being to a 4 year old who talks constantly, sings, laughs and expresses love. He runs and jumps and actively se
Slide 70: The Joys
The Joys The “Beauty” and the “Innocence” “I know that when I receive a hug or a kiss, it's because he truly wants to give it to me, it's not obligatory.” “My grandson just lights up and gives me a big hug when he sees me, even though he knows it means that Mom is going out and his routine is upset.
Slide 71: Grandparent-Advocates
Grandparent-Advocates Nearly 50% had participated in autism walks or fundraisers. 33% had been involved in autism-focused political advocacy. 31% had attended educational conferences or workshops on autism. Grandparents founded one of the biggest advocacy organizations now funding huge amounts of re
Slide 72: Supporting Grandparents
Supporting Grandparents We need to better recognize: The source of emotional/financial support grandparents are for some families of children with ASD That they can be key “early identifiers” of ASD The burdens and stresses they face, and fact they may need support
Slide 73: Grandparents are key!
Grandparents are key! Anyone investigating ASD and its impact on families leaves the grandparent generation out at their peril.
Slide 74: Family Tool Kits from Autism Speaks
Family Tool Kits from Autism Speaks
Slide 75: Questions?
[= Questions?