1. A Process model for NYS Family Support: Documentation, Out-comes, Empowerment & Support Nancy Craig, c ocfnlc@omh.state.ny.us/716-432-6238 New York State Office of Mental Health Parent Advisor Western Region April 15, 2010

2. The Quest: Unify 16 unique and very individual Family Support programs within western NYS To demonstrate using quantitative and qualitative data that parents & caregivers connected with Family Support experience improved knowledge and skills in meeting the challenges of raising a child with mental health issues.

3. Challenges Family Support is not a clinical program Family Support is about Parents & Caregivers Strengths and Needs not an identified child’s Strengths and Needs Process to collect and document information must be user friendly Measurement tool must have validity

4. From Concept Keep focus on Hope, Empowerment and Future Parents & caregivers have a clear understanding of their individual Strengths and Needs Self-identified parent & caregiver driven goals Fidelity to NYS Family Support Program model

5. To Operation Assessment (FANS) Documentation (Journey) Out-comes (FANS) Empowerment Demographics (we are not totally there yet)

6. 6 One Tool - - - Many Uses

7. 7 Outcome-Engineering: A model for decision support and documentation for NYS Family Support. Journey mapping web application consists of: Modules for each Family Support Program Web-based Interface for each family support staff to enter: 1) qualitative data about each interaction they have with parent & caregiver- ‘Journey Mapping’; 2) FANS Scale; 3) Parent Empowerment Scale System tracks individual parent & caregiver using a unique identifier without including descriptive data; Includes Reports that can be used by Supervisors and staff to track and monitor progress Includes Reports that can be use to monitor program statistics.

8. 8 Development of Needs and Strengths Assessment tool specific to the work of Family Support (FANS) Reviewed New Jersey, Kids Oneida, & other existing CANS tools Gathered ONLY questions that referenced parent & caregiver Started with 30 parent & caregiver specific questions Cross walked with NYS program model which consists of: Advocacy& Support, Education & Skill Development, and Support Groups and Respite

9. 9 The NY Family Support-FANS tool 15 questions embedded within the data collection process Scale is similar to the Child and Adolescent CANS-MH tool Content reflects Caregiver Needs and Strengths areas with modified questions that reflect areas that family support addresses.

10. 10 Method: Sample: 682 FANS were collected from 444 parent & caregivers who received family support in Western NY The majority of FANS were collected between November 2007 to August 2008 Analysis: The frequency of ‘Needs’ on each item was calculated from the first FANS collected from these 444 parents & caregivers (Needs =score of 2 or 3 on each FANS item)

11. 11 Method (cnt’d) Analysis: Outcomes - Pre and post scores were compared for 193 parents & caregivers that had at least 2 FANS –Needs Met was calculated as movement from needs (2 or 3) to strengths (0 or 1) on each item –A comparison of the difference between the post and pre scores were used to indicate if a parent & caregiver was doing better, stayed the same or got worse on each item.

12. KNOWLEDGE OF FAMILY / CHILD NEEDS: Check 0Caregiver has strong understanding of family and child needs. 1Caregiver has understanding of family and child needs but may still require some help in learning about certain aspects of these needs. 2Caregiver requires assistance in understanding family and or child needs. 3Caregiver requires substantial assistance in identifying and understanding family and child needs. 12

13. KNOWLEDGE OF RIGHTS AND RESPONSIBILITIES: Check Caregiver has strong understanding or rights and responsibilities. Caregiver has understanding or rights and responsibilities but may still require some help learning about certain aspects. Caregiver requires assistance in understanding rights and responsibilities. Caregiver requires substantial assistance in identifying and understanding rights and responsibilities. 13

14. KNOWLEDGE OF SERVICE OPTIONS: this item refers to the choices the family might have for specific treatment interventions or other services that might help the family address their needs or the needs of one of the family’s members. Check 0Caregiver has strong understanding of service options. 1Caregiver has understanding of service options but still may require help in learning about certain aspects of the service. 2Caregiver requires assistance in understanding service options. 3Caregiver requires substantial assistance in identifying and understanding service options. 14

15. SATIFACTION WITH YOUTH’S LIVING ARRANGEMENT: Check 0 Caregiver is pleased with identified youth’s current living arrangement. 1Caregiver is satisfied with identified youth’s current living arrangement, although some improvements could be made. 2Caregiver believes a change in living arrangement is required. 3Caregiver believes an immediate change in living arrangement is required. 15

16. SATIFACTION WITH YOUTH’S EDUCATIONAL ARRANGEMENT: Check 0Caregiver is pleased with identified youth’s current educational arrangement. 1Caregiver is satisfied with youth’s current educational arrangement, although some improvements could be made. 2Caregiver believes a change in educational arrangement is desirable. 3 Caregiver believes an immediate change in educational arrangement is required. 16

17. SATISFACTION WITH SCHOOL PARTICIPATION: Check 0School works closely with caregiver to identify and successfully address educational needs OR child excels in school. 1School works closely with caregiver to identify and address educational needs OR child likes school. 2School currently is unable to adequately address educational needs. 3School is unable to work to identify and address educational needs. 17

18. SATISFACTION WITH CURRENT SERVICES BEING PROVIDED Check 0Caregiver is pleased with current services 1Caregiver is satisfied with current services, although some improvements could be made. 2Caregiver believes a significant change in services is desirable. 3Caregiver believes an immediate and significant change in services is required. 18

19. 19 Advocacy: Frequency of Needs (n=444) %

20. 20 Advocacy: Outcomes (n=193)

21. CAREGIVERS ABILITY TO LISTEN: Check 0 Caregiver is able to listen carefully and understand both good and bad news regarding family / child(ren) issues 1 Caregiver has listening skills but sometimes struggles to hear either good or bad news regarding family child(ren) issues 2 Caregiver requires help learning to listen effectively 3 Caregiver requires substantial help learning to listen effectively. 21

22. CAREGIVERS ABILITY TO COMMUNICATE: Check 0 Caregiver is able to express feeling and thoughts effectively with regard to family & child issues. Others hear, understand, and respond. 1 Caregiver is able to express feelings and thoughts but sometimes struggle to express these so that others can listen and or understand. 2 Caregiver requires help learning to express feelings and thoughts effectively with regard to family and or child issues. 3 Caregiver requires substantial help to express feelings and thoughts effectively with regard to family and child issues. 22

23. CAREGIVERS ORGANIZATION SKILLS: Check 0 Caregiver is well organized and efficient. 1 Caregiver has minimal difficulties with organizing and maintaining household to support needed services. For example, may be forgetful about appointments or occasionally fails to return phone calls. 2 Caregiver has moderate difficulty organizing and maintaining household to support needed services. 3 Caregiver is unable to organize household to support needed services. 23

24. 24 Education and Skill Development: Frequency of Needs (n=444) %

25. 25 Education and Skill Development: Outcomes (n=193)

26. CAREGIVERS’ TALENTS AND INTERESTS: Check 0Caregiver has a talent or interest, or hobby that provides personal enjoyment 1Caregiver has a talent, interest, or hobby with the potential to provide personal enjoyment 2Caregiver has identified interests, but needs assistance converting those interests into a talent or hobby. 3Caregiver has no identified talents, interests, or hobbies.

27. CAREGIVERS’ RECREATIONAL INTERESTS: Check 0Caregiver has and enjoys positive recreation activities on an on-going basis 1Caregiver is doing adequately with recreational activities although some problems exist. 2Caregiver is having moderate problems with recreational activities. Caregiver may experience some problems accessing. 3Caregiver has no access to or interest in recreational activities

28. CAREGIVER SOCIAL RESOURCES : Social resources refer to help that you do not have to pay for. This could include friends, families or church or other organizations that help the family in times of need. Check 0 Caregiver has significant family and friend social network that actively helps caregiver and their family 1 Caregiver has some family or friend social resources that actively helps caregiver and their family 2 Caregiver has some family or friend social network that may be able to help caregiver and their family 3 Caregiver has no family or social network that may be able to help caregiver and their family

29. 29 Support Groups and Respite: Frequency of Needs (n=444) %

30. 30 Support Group & Respite: Outcomes (n=193)

31. 31 Frequency of Needs on Caregiver Optimism & Involvement (n=444)

32. CAREGIVER OPTIMISM: Check 0 Caregiver has a strong and stable optimistic outlook about their life. 1 Caregiver is generally optimistic 2 Caregiver has some difficulties maintaining a positive view of their self and their life. Caregiver may vary from overly optimistic to overly pessimistic. 3 Caregiver has difficulties seeing any positives about themselves or their life.

33. CAREGIVER INVOLVEMENT: Check 0 Caregiver is able to act as an effective advocate for their child 1 Caregiver has a history of seeking help for their child(ren). Caregiver is open to receiving support, education, and information. 2 Caregiver doesn ’ t wish to participate in services and or interventions intended to assist their child(ren) 3 Caregiver wishes for child(ren) to be removed from their care.

34. 34 Caregiver Optimism and Involvement: Outcomes (n=193)

35. 35 Discussion: D ispelling a Myth Parent & Caregiver optimism and Parent & Caregiver involvement 45% of parents & caregivers scored this question a two or three. –And yet only 5% of parents & caregivers scored this question as a two or three. –Parents & Caregivers are committed to keeping their child at home, even when faced with a high degree of hopelessness

36. 36 Results: FANS Top Four NEEDS at Admission: Top Four NEEDS Met: Top Four areas Where parents & caregivers are STRONGER: Social resources (46%) Social resources (15%) Knowledge of Service options (26%) Optimism (45%)Optimism (13%)Talents and interests (25%) Recreational interests (42%) Knowledge of service options (13%) Knowledge of rights and responsibilities (25%) Knowledge of service options (38%) Satisfaction with youth’s education (12%) Social resources (25%)

37. 37 Conclusions: FANS results indicate high levels of parent & caregiver needs in the areas of expertise and FS successfully targeted the areas of greatest need identified by parents and caregivers

38. Empowerment Scale Learn: inquiry, Use: alone or with an advocate, Teach: share with another Peer Support and Advocacy LearnUseTeach When faced with a problem the parent / caregiver takes the initiative to identify resources and resolve challenges. Parent has a safety plan they can implement and use. Parent feels they have a voice in improving services and reducing mental health stigma in their community.

39. Empowerment Scale cont. Education & Skill Development LearnUseTeach Parent focuses on strengths as well as needs Parent can get information to better understand needs of child and family. Parent takes steps to learn new ways to meet their individual goals

40. Empowerment Scale cont. Respite/Support Group LearnUseTeach Respite (formal and informal) is utilized as a form of stress management. Parent develops natural and community resources and accesses as needed. Parent knows what steps to take when concerned that services are not meeting their needs.

41. Documentation: The Journey 3 basic questions Strength and Needs of Parent / Caregiver Parent / Caregiver Goals –This should be reflected from the parent / caregiver and FANS questions scoring 2 or 3 What did you (advocate) do, give, refer to meet the parent / caregiver goals –What is your (advocate) role in this parent / caregivers life

42. 42 Lessons Learned: What parents and caregivers are saying about the FANS Keeps everyone focused on Strengths & goals Better understanding of the systems Decreases the sense of feeling overwhelmed and operating from crisis mode all the time Greater confidence in ability Know how to make changes

43. 43 Moving Forward: Outcome-Engineering in Western Region provided the demonstration that this model is ready to be disseminated statewide Continue mining the data Continue to refine process at Advocate level Continue modifications of platform for better and more detailed data understanding Continue support for stakeholders utilizing the data in a transparent fashion to move child and family systems Continue linkage and training with Parent Empowerment Project for uniformity of Advocate skills leading to better focus parent & caregiver outcomes.

44. 44 New York State Office of Mental Health Dr. Kimberly Hoagwood: Parent Empowerment Project, Family Advocate Training“Parents as Change Agents” Dr. Berry Kibel: Outcome-Engineering, Journey Mapping Dr. John Lyons: Child and Adolescent Needs and Strengths tool, Family Support FANS Partners & Acknowledgements: