Daughters & sons initiatives:

1. Daughters & sons initiatives: Empowering our Future from Invisible Pasts

2. WHO ARE Daughters & Sons? • “We are the Daughters & Sonsof a parent(s) with a mental illness.” • There are millions of us in the U.S. alone, young and old. (Birth through death). • Many of us care/advocate for our parents; some of us never lived with our parents; some of our parents have passed away. • Sometimes referred to as “Invisible Children” (“Hidden Victims”, “Invisible Children’s Projects”, funding streams, etc.) • “

3. Creative orientation Tolerance of difference Willingness to challenge the status quo Emotional expressiveness A sense of humor Common Strengths of Daughters and Sons Five “redemptive” characteristics (Strengths) identified through Qualitative Analysis/ Interviews by Heather Burack, MSW, Daughter of a mother with SPMI, while doing her Master of Social Work at Hunter College - CUNY Child and Youth Mental Health Matters Congress - Vancouver May 2012

4. The “Daughters & Sons” Issue is a lifespan issue… • Pre-natal, birth to three, childhood, adolescence/young adulthood, adulthood/aging • Through the eyes of a child: “When we were teased on the playground …’Ha, ha! Your mother cracked up!’…we raced home thinking she had been in a car accident…” Daughter, CT • Lasting scars: “Everyone has the attitude that if I am standing here today, I must have survived it all and thus be “over it”. But I am not over it, and WE as a group are not over it and we have work to do.” Daughter, CA

5. Lifelong effects of childhood trauma • ACE (Adverse Childhood Experiences) Study is ongoing collaborative research between the Centers for Disease Control and Prevention in Atlanta, GA, and Kaiser Permanente in San Diego, CA. Data gathered from over 17,000 middle-income participants continues to be analyzed; it reveals staggering proof of the health, social, and economic risks that result from childhood trauma. http://acestudy.org/home ACE score questionnaire (#9): “Was a household member depressed or mentally ill, or did a household member attempt suicide?”

6. Multiple system issues = multiple opportunities!

7. Visibility barriers • Focus on ill parent/medical model • Children’s lack of power/voice • Funding streams • View that people living with mental illness aren’t parents (or shouldn’t be parents) • Lack of understanding of the big picture from systems (child welfare/mental health/courts/WHO/ACE) • Lack of research and data collection • Lack of interventions/evidence-based practices

8. What efforts do exist? • Support Groups: • Adult D&S: NYC, MN, PA (bi-monthly w/ sibs), TX • Young D&S: CT, etc. • Geriatric: Stasia-NYC (Geriatric MH Alliance) • 6-week workshop (Adult D&S) – PA • Parenting: Study of Internet Parenting Classes & In-Person Parenting Class (“Parenting Plus”) – PA • Other Resources: Michelle Sherman (MN) – Publications, Grant, Website, presentations, Veterans Parenting Tool Kit

9. Systems Change MA: Joanne Nicholson, Ph.D.(Systems Change Manual) UMASS, Dartmouth MI: Joanne Reibschleger, Ph.D. (Research, Social Media) Michigan State University CT: Group of stakeholders working on DMHAS Policy on parenting, DCF, brochure for young adult parents with mental illness, etc. (includes researcher Daryn David, Ph.D.-Yale/PRCH) NYC: Lawyers/other stakeholders meeting about custody loss issues/preserving families Mental Health Association-NY, S.E. PA

10. Other Resources, & D&S worldwide • Other Resources: Websites, Blogs (The Crooked House-NM), Books, movies • D&S Worldwide: • Australia (COMIC, COPMI) (young caregivers) • UK (young caregivers) • Canada (young caregivers/parents0 • Italy, France, Netherlands • D&S Initiative • Vancouver: 3rd World Conference (3 themes)

11. Resources created Website We created a Website www.howstat.com./comic Our aim was to make free information readily available Under the auspices of the Mental Illness Fellowship of South Australia Child and Youth Mental Health Matters Congress - Vancouver May 2012

12. Result of efforts - as at 8 April 2012 Child and Youth Mental Health Matters Congress - Vancouver May 2012

13. Supporting Our Family Kit4,000 hard copies were printed and distributed 2002 First Version FREE DOWNLOAD Second Edition 2008 Child and Youth Mental Health Matters Congress - Vancouver May 2012

14. CANADA IRELAND SWEDEN GERMANY BASQUE COUNTY ITALY MALTA ENGLAND USA KOREA MALDIVES Australia and all of its states and territories By using social networks and media we have travelled and shared with others internationally. Our first overseas presentation was New Zealand and now we are here! Adelaide NEW ZEALAND 63 Child and Youth Mental Health Matters Congress - Vancouver May 2012

15. Child and Youth Mental Health Matters Congress - Vancouver May 2012

17. Child and Youth Mental Health Matters Congress - Vancouver May 2012

18. Child and Youth Mental Health Matters Congress - Vancouver May 2012

19. Links • Adult Children of Parents with Schizo-Affective and Other Mood Disorders: https://www.facebook.com/groups/35021114281/ • Children of Parents with Mental Illness: https://www.facebook.com/groups/95113476577/ • COMIC – Children of Mentally Ill Consumers/Parents: www.howstat.com/comic • Figlie e Figli di Pazienti Psichiatrici - Children of Mentally Ill Parents: https://www.facebook.com/groups/218565708168348/ • Mia Madre E’ Bipolare: http://miamadrebipolare.blogspot.it/ • The Crooked House Website: http://www.thecrookedhouse.org/ • The Crooked House Blog/Forum: http://thecrookedhouseorg.blogspot.ca/ Child and Youth Mental Health Matters Congress - Vancouver May 2012

20. Daughters and Sons Vision 1. Expanded Research and Professional Education: Traditional research, concerning Daughters and Sons, has focused on the statistical likelihood that the individual would acquire their own psychiatric diagnosis, but, there is little knowledge about the environment in which the child was raised. 2. Young Children: Extended family, parents and professionals need to be trained and encouraged to talk to young Daughters and Sons about our parent's and our experiences, including our perception/identification with our parents. 3. Teens and Young Adults: As they transition into adulthood, Daughters and Sons may be at risk to abuse in relationships due to economic and social vulnerabilities, especially where prior resilience factors (social support, education, peer support, role modeling) have been weak or altogether absent. Child and Youth Mental Health Matters Congress - Vancouver May 2012

21. Daughters and Sons Vision 4. Adults: We seek to support Daughters and Sons as caregivers, advocates, and co-survivors of mental illness in their relationships with parents and the health care system. • Advocacy for Parents with Psychiatric Disabilities: Parents with psychiatric disabilities should be intentionally supported in their parenting role as part of recovery planning and parenting should be recognized for its value in psychiatric rehabilitation. Methods: Workshops, public speaking, creation of support groups, creating a collective effort that promotes policy and program innovations - leaving room for members’ individual creativity and talent. Child and Youth Mental Health Matters Congress - Vancouver May 2012

22. Next steps: Within NAMI: Making resources available on the NAMI National website. Create awareness at the affiliate level of these resources increasing the capacity to respond to families with these needs. Building Daughters & Sons support groups Nationally: Building capacity for supported parenting programs is critical. Your Voice is CRUCIAL!

23. QUEStions/discussion Daughters and Sons Initiative Cheri Bragg cheri@dandsinitiative.org (860) 841-6968