Assessing Family Support: Assessment Tools Used in Parent Support

Assessing Family Support: Assessment Tools Used in Parent Support Services September 24, 2015 2:00pm to 3:30pm (Eastern)

Presented by Family Run Executive Director Leadership Association Building leadership and organizational capacity of family-run organizations 2

TA Network Core Partners: The Institute for Innovation & Implementation, University of Maryland School of Social Work Accountability Solutions, LLC. The Center for Community Learning, Inc. The Center for Health Care Strategies, Inc. The Family-Run Executive Director Leadership Association (FREDLA) Human Service Collaborative The National Federation of Families for Children’s Mental Health Portland State University The University of South Florida The University of Washington Youth M.O.V.E. (Motivating Others through Voices of Experience) National 3

Family Run Executive Director Leadership Association (FREDLA) Started in 2013 by 16 Statewide Family Network Directors Mission: To strengthen leadership and organizational capacity of family-run organizations focused on the wellbeing of children and youth with mental health, emotional or behavioral challenges and their families. Partner in TA Network providing technical assistance to System of Care grantees. 4

Importance of Assessment in Family Organizations 5

Why is data important? Understand what is working and what is not to make effective decisions Tell others what is working Inform policy-makers and funders about what works Record individual and program progress Provide feedback to funders, stakeholders Overall accountability Credibility

Families use data: - To assess child’s progress - To advocate for services - To strengthen family voice - To gauge satisfaction with services Program staff use data: - To gauge effectiveness of services - To individualize and make accommodations - To compare approaches - To develop transition plans

Organizations use data: - To mobilize resources - To build partnerships and substantiate collaboration - To refine and improve services, MIS - To market accomplishments, advocate for and sustain funding State/Federal agencies use data: - To plan - To advocate for increased appropriations - To demonstrate cost effectiveness - To monitor systems and adherence to principles - To develop integrated databases

Types of data Quantitative - quantity - numbers Qualitative - quality - Stories, descriptions

Feedback loop is critical Established method for consistent sharing of information on data collection, data analysis, data use Promotes trust Builds cooperation in data collection, use Allows for continuous quality improvement

Overview of Potential Assessment Tools 11

Common tools used by FROs Pre- and Post- surveys of programs and training o Usually involves a Likert Scale of some type Focus groups CANS (Child and Adolescent Strengths and Needs) o Used in identifying areas of strength and need to inform service planning FANS (Family Assessment of Needs and Strengths) o A subset of items from the CANS that focus on strengths/needs of the family rather than the individual

Common tools Family Empowerment Scale o A scale measuring the level of empowerment of a caregiver in addressing the needs of his/her family Caregiver Strain Questionnaire o A brief questionnaire that assesses the level of stress experienced by a parent or caregiver of a child/youth with emotional, behavioral or mental health challenges CAFAS (Child and Adolescent Functional Assessment Scale) o A scale assessing the level of functioning of an individual child 13

FRO example: OFSN and the Family Empowerment Scale Oregon Family Support Network (OFSN) has been using the FES for two years with consistent results Use the FES to answer two questions in reporting outcomes to funder: 1. Does the family feel the process was family driven and youth guided? 2. Does the family feel the navigation supports were helpful and contributed to any successes? OFSN also required to report on other outcomes (more quantitative) 14

FES outcomes in Oregon Of families receiving direct peer support services and completing the FES: 78% of families said that they felt that a familydriven, youth-driven planning process was used either often/very often - agencies working from place of respect toward family, family voice listened to, services tailored toward child/family 89% of families said that they felt their overall quality of life had improved and that they/their child experienced improvement in overall health/ wellness - sense of ability to effectively problem-solve with child, feel that family is under control, ability to ask for help, having a good understanding of systems 15

Protective Factors Survey (PFS) Sara Nicholson Nebraska Federation of Families for Children’s Mental Health 16

Protective Factors Survey in Family Peer Support 17 Nebraska Federation of Families for Children’s Mental Health

18 Selecting the Right Measurement Tools NE-FFCMH sub-contracts with 8 Family-Run Organizations covering all counties in Nebraska to provide Family Navigation and Family Peer Support Services Determined need to begin measuring the effectiveness of our services Initially used the Caregiver Strain Questionnaire as Family Assessment tool- great tool, but did not capture all we felt we needed in FPSS Determined need for measurement on various levels: family level; program level; system level Researched various tools being used within Peer Services without many results so researched other fields of practice to see what was effective Desire to move away from deficit-based assessment- focus on enhancing strengths

19 After much research, assessment and evaluation shopping, talking to experts in the field and trial and error, we leaned toward the use of the Protective Factors Survey.

20 What We Learned About the Protective Factors Survey that Intrigued Us The Protective Factors Survey (PFS) is a product of the FRIENDS National Center in collaboration with the University of Kansas Institute for Educational Research and Public Service and is an evidence-based tool. The PFS is a pre-post evaluation tool for use with caregivers receiving child maltreatment prevention services. It is a selfadministered survey that measures protective factors in five areas: family functioning/resiliency, social support, concrete support, nurturing and attachment, and knowledge of parenting/child development. It helps programs better assess changes in family protective factors, a major focus of prevention work. The primary purpose of the Protective Factors Survey is to provide feedback for continuous quality improvement and evaluation purposes. The survey results are designed to help measure changes in protective factors and identify areas where there can be focus on increasing individual family protective factors. There is no utilization cost associated with the tool- it is public domain

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Understanding the Difference between Program Evaluation and Family Assessment 22 The PFS is not intended for individual assessment, placement, or diagnostic purposes and is not a family assessment tool. Implemented the Protective Factors framework as basis for program in two ways: Family level Assessment: brings to light the strengths and weaknesses of family dynamics, allowing members to consciously increase the influence of nurturing attributes while curtailing harmful ones How we used it: informal Protective Factors assessed using informal conversations with families to identify the protective factors present at intake (as well as those they want to enhance) Program level Assessment: Detailed assessment of the outcome of a program, against established measures or expected results to determine if it achieved its objectives. How we used it: formal Protective Factors Survey including the training and acquisition of the tool.

How We Use the PFS in FPS 23 Completed at different intervals, depending upon program length. Family Navigation is a 60 day program: PFS completed once, retrospectively at discharge Family Peer Support is 6 month program, on average: PFS completed pre and post For both programs, it is built into the requirements like all other intake or discharge paperwork Completed by parent in one of two ways: hard copy or Pyramid link (online data management system) Participants are asked to respond to a series of statements about their family, using a seven-point frequency or agreement scale. The following table provides a brief summary of the multiple protective factors covered in the survey. Data is entered (either by parent completing FPS on Pyramid themselves or Family Peer Support Specialist (FPSS) entering it). Pyramid calculates the data by: FPSS, Family Organization, region, statewide Reports are used in QI process to determine training needs, service gaps, utilization, and other important factors that impact families. Data is compared with organizations using FPS that are NOT Family-Run Data is provided to funders as measurement of program success

Implementation Challenges 24 Like with all new large organizational changes, there were challenges in implementing the tool Transition from one tool to another (data migration and integrity, management and reporting) Implementing training for existing staff as well as adding to New FPSS curriculum Adaptations toPyramid-online data management system (matching timeframes, testing new module, making adaptations, standardizing reports, working out glitches) Creating an understanding, appreciation and commitment from the Affiliate Network of NE Family Organizations Determining how to best use the data (QI, funders, etc)

25 Implementation Successes Implementing a new tool provides opportunities for organizational growth! Created a whole array of rich data Opportunities for re-connecting with FPSS’s and Organizations Became a “movement” that was observed by funders and other community collaboratives and created additional funding stream Provided opportunity to look at how we can improve our services to families as well as our organizations and our systems in Nebraska. Normalized the necessity of focusing on programmatic outcomes and how to help families achieve personal success Assists us in developing conclusions about FPSS and how it helps families Has allowed programmatic growth: NEXT- implementation of PROMOTIVE Factors

Family Peer Support Outcomes 26 Outcome Data Element Outcome: Resiliency Participants care for their personal needs and reduce strain associated with parenting a child with behavioral health challenges. 80% of identified youth will increase their overall number of Developmental Assets. Strategy/ Indicator: Participants know strategies that they can use to promote self-care and wellness. 80% of parents will demonstrate an increase in the number of Protective Factors possessed, specifically related to resilience. Outcome: Concrete Supports Participants with children with special needs are aware of and know how to access community resources and formal supports available to them. Strategy/ Indicator: Service choices are offered to families. 80% of families are provided options for services 80% of parents will increase their total number of concrete supports from intake to discharge.

Family Peer Support Outcomes 27 Outcome Outcome: Social Connections Participants have a mutual support network of friends, family and neighbors they use for support and assistance, as needed. Strategy/Indicator: Participants know and utilize reliable, safe and appropriate friends, family members and neighbors for support and assistance when they need it. Data Element 80% of parents demonstrate that they have a minimum of 3informal family supports/social connections. 80% of parents will increase their total number of social connections (informal supports) from intake to discharge. Outcome: Knowledge of Parenting and Child Development Participants understand the dynamics of their child’s behavior as well as strategies to effectively mediate the behaviors. Strategy/Indicator: Parents are offered individual or group parent skill-building, which is clearly documented in the Family Plan. 80% of families are offered individual or group parent skill building. 80% of parents that have a need for parenting skill building/child development, will utilize the concrete supports offered/requested.

28 Determining if the PFS is the Right Fit for Your Organization Will the respondent (the parents or caregiver) receive at least 6 hours of direct services from your program before they are given the posttest? Is the respondent the primary caregiver of the child(ren) for whom the parent/guardian is receiving services? Do you provide services or supports that address each of the following protective factors: Family Functioning / Resiliency Having adaptive skills and strategies to persevere in times of crisis. Family’s ability to openly share positive and negative experiences and mobilize to accept, solve, and manage problems. Social Emotional Support: Perceived informal support (from family, friends, and neighbors) that helps provide for emotional needs. Concrete Support: Perceived access to tangible goods and services to help families cope with stress, particularly in times of crisis or intensified need. Nurturing and Attachment: The emotional tie along with a pattern of positive interaction between the parent and child that develops over time. Child Development / Knowledge of Parenting: Understanding and using effective child management techniques and having age-appropriate expectations for children’s abilities.

29 For more information contact: Sara S. Nicholson [email protected] 308-672-1528

Family Assessment of Needs and Strengths (FANS) Nancy Craig Families Together in New York State 30

31 ASSESSING FAMILY SUPPORT: FAMILY ASSESSMENT OF NEEDS AND STRENGTHS (FANS) DEVELOPMENT AND IMPLEMENTATION Nancy Craig, Families Together in New York State

32 On Target Moving from Data Collection To Data Use: Work Smarter

33 NYS Western Region Family Peer Support Services Directors in collaboration with Dr. John Lyons developed an outcome tool to demonstrate that when parents are connected with the Family Peer Support experience they increase their knowledge and enhance skills needed to meet the challenges of raising a child with social, emotional, developmental, and / or, behavioral challenges.

Foundation or Core Elements of Family Peer Support Services in New York 34 Outreach & Information, Engagement, Bridging & Transition Support, Self-Advocacy, Self-Efficacy & Empowerment, Community Connections & Natural Supports, Parent Skill Development, & Promoting Effective Family Driven Practice

Outcomes Using Data Means Success for all Child Serving Systems Parent Goals Family Support Program By using Data all are inter- related and each circle influences the other in some manner. Supervision Role and Goal Family Peer Advocate Skills 35

FANS CLUSTERS First cluster of four questions hones in the parents’ self care Second cluster of seven questions hones in on parents’ knowledge and areas of skill development Third cluster of two questions hones in on the parents’ internal awareness of external challenges Talents/Interests/Hobbies, Recreation, Optimism, & Social Resources. Listening, & Communication skills, Involvement in Services, Knowledge of Family Needs, Knowledge of Rights & Responsibilities, Knowledge of Service Options Self-Efficacy, & Burden & Stress Satisfaction with Youth’s Living Fourth cluster of questions hones in on assuring parents’ voice in service delivery 36 Arrangements, Satisfaction with Youth’s Educational Arrangements, Satisfaction with School Participation, Satisfaction with Current Services

SCORING FANS score (rating) is based on a 4-point scale between “0”-“3”. Each rating represents an action level. 0 No Evidence of NEED No action needed 1 watchful waiting or prevention action Review at next 90 day. Either decrease to 0 or move to 2 2 ACTION Moderate NEED 3 IMMEDIATE ACTION Priority change needed Substantial NEED identified 37

38 FANS can be the external catalyst for discussion on difficult topics. Family Peer Advocate’s (FPA) have responsibility to share their insight on what is discussed during the conversation (John Lyons)

39 FANS is the parent documentation of their individual strengths and needs FANS is not the Family Peer Advocate’s impression of Parent strengths and needs. OR, what others believe the parent needs to change If a parent/caregiver believes they are a 0, 1, 2 or 3 on a question than that is what they are until they say other wise -- meet parents were they are today, not where others think they are or should be

40 TIME LINE: for New York Build Relationship CONVERSATION, CONVERSATION AND MORE CONVESATION Complete FANS within 30 days of “hello”! Update every 90 days And at discharge Pass on (with consent) discharge FANS

FANS DATA IS ONLY AS GOOD AS WHAT THE PARENT & FPA DO WITH THE INFORMATION

FANS is not just a paper & pencil exercise Parent & FPA create a written action plan based on parents’ priorities and their priorities of FANS scores of 1’s, 2’s & 3’s every 90 days. When incorporating into a service plan - Action Plan goals are the methods for child’s success 42

WHAT IT MEANS FOR FAMILY PEER ADVOCATE ROLE FANS data is used to help keep everyone focused on why FPA involved with parent -- what is FPA role & goal! FANS guides the work for relevant & obtainable goals with families FANS data helps identify parent skill mastery & empowerment towards their goals -- everyone has strengths; FANS brings them to light FANS data over-time helps FPA say Good-Bye FANS data can help identify FPA’s skills and development needs FANS data is another tool to use in supervision

44 WHAT IT MEANS FOR THE FAMILY PEER SUPPORT SERVICES DIRECTORS Supervision is more meaningful to FPA AND supervisor Focus on FPA role and maintaining healthy boundaries Validate success of family to FPSS program, parents, & funders To document qualitatively the need for expansion of Family Peer Support across all child serving systems Identifies areas where leadership advocacy should focus Asking targeted interview questions for new hires Bottom Line: In the very near future ALL funding will be tied to Data Outcomes

45 WHAT IT MEANS FOR THE PARENTS WE SERVE Parents are pro-active have voice, and ownership of change with their family, Better understanding of how systems work and can effect change at community, county, & state level Decrease feelings of being overwhelmed Greater confidence in personal ability and skills to handle daily life, no matter the challenges Know how to make the changes now and in the future Strong empowered future leaders

46 OUTCOME OF NEEDS MET ON FANS DOMAINS* --FAMILY SUPPORT SERVICES

IMPLEMENTA TION CHALLENGES 47

Keep true to family peer practice standards AND implement outcomes in a meaningful way. Training up a workforce: Parent Empowerment Program “Parents as agents of change model” Ourselves! It is NOT about me only about them!!! Family Peer Support Programs are NOT clinical programs Family Peer Support is about the parent strengths and needs. Our work is NOT specifically linked to an identified child’s strengths and needs Agreement & Development of standardized processes of what information to collect and document We are still working on this- 48

49 Keep EVERYONE’S eyes on the prize The living of life as a family!

Always working on saying GOOD-BYE 50

NANCY CRAIG Families Together in New York: Director of Statewide Training [email protected] 716-432-6238

Family Journey Assessment (FJA) Celia Serkin Montgomery County (MD) Federation of Families 52

Family Journey Assessment (FJA) Celia Serkin Executive Director Montgomery County Federation of Families for Children’s Mental Health FREDLA Webinar: “Assessments Family-Run Organizations Use in Family Support ” September 24, 2015 53

The Family’s Journey The Parent Support Providers (e.g., Family Support Partners and Family Navigators) provide support to families with children and youth who have mental health and behavioral health challenges. They help family members progress on their journey towards selfadvocacy and self-efficacy through the acquisition of skills, knowledge and a network of support. 54

Accountability In a climate of results-based and outcome accountability, an emphasis on evidence-based practices, and at times, challenging fiscal environments, it is critical that family organizations measure: What they do How much they do How well they do it Is anyone better off 55

Creation of FJA The Family Journey Assessment was developed through a collaboration between the Montgomery County Federation of Families for Children’s Mental Health and the Georgetown University Center for Child and Human Development (GUCCHD). This was supported by SAMHSA Grant SM056495. FJA Website http://gucchdtacenter.georgetown.edu/Activities/FamilyJourneyAssessment/i ndex.html Family Journey Assessment, Data Entry Instructions and Other FJA Materials – FJA – FJA Manual – Administration Prompts – List of Clusters and Items – Introducing FJA to Caregivers FJA Training Materials 56

Key Caregiver Outcomes Derived from family support experience – Self Knowledge (e.g., communicates needs, accepts and appreciates strengths and challenges of self and child) – Well-being and reduced self-blame (e.g., family relations and decision-making, daily routines) – Knowledge seeking (e.g., resources, systems) – Collaboration and connection to decrease isolation (e.g., stakeholders, natural supports) – Using acquired knowledge (e.g., communicate, discuss, involvement) – Coping (e.g., self-efficacy, problem-solving, self-care) – Increased activation to gain knowledge and become actively engaged in child’s care and services – Advocacy 57

Differences with Other Measures Developed directly from experiences of Parent Support Providers (PSPs) and goals of family support—important movement, process and experience of the family journey. Comprehensive Less about satisfaction with youth’s progress and related services Specific skills and knowledge Focusing on progress that would reduce the impact of caregiving burden: working with others, problem solving, coping and implementation of gained knowledge and skills 58

Family Journey Assessment Completed by Parent Support Providers in collaboration with family members. Supports PSPs’ work and integrates into the flow. Tracks family members’ progress in their journey towards self-advocacy and self-efficacy through the acquisition of skills, knowledge and a network of support. Provides indicators for the specific level and content of peer-to-peer skill-building and support. 59

Setting the Stage FJA is a collaboration between the PSP and the family member – Integrates into ongoing work of family support – Informs the focus of the work – Helps to develop individual plans of service – Tracking and celebrating success FJA is not “Just one more assessment” – Not an evaluation of parenting skills – Not an extra “add-on” – Not a “research project” with “no benefit to families or PSPs” 60

Setting the Stage FJA is not an evaluation of PSP proficiency or a job performance measure, but can be used in supervision The FJA language can empower families and Parent Support Providers to communicate about their experience and progress. 61

FJA Components Basic Scale – 36 Items; 6 clusters – Self Knowledge – Family Well Being – Seeking Information – Collaborates With Others – Uses Newly Attained Knowledge – Coping Skills 62

Family Journey Assessment: Rating Scale Based on Level of PSP Assistance Needed Intensive Moderate Supportive Empowered 1 2 3 4 The family member finds it very difficult to make changes to improve the current situation; requires active intervention from PSP. The family member needs extensive assistance and encouragement from PSP to make changes necessary to improve the current situation. The family member needs limited assistance from PSP to make changes necessary to improve current situation. The family member is making changes to improve the current situation without assistance from PSP. 63

Administration Administered by the Parent Support Provider in collaboration with the family member. – A way to help track the progress of their work together – Clusters link to key purposes of family support (information, advocacy, support, coping, collaboration). Baseline (2 weeks of the beginning of involvement): used in a discussion of the goals of family support Follow-up (three month intervals/end of service): introduced in the context of reviewing the progress that the family has achieved since the last administration. Celebrate success. 64

Administration: Cover Page Filled out for every administration of the FJA. Keeping track of the caregiver, family, and rater (PSP) ID numbers. The “comments” lines should be used to note important context factors (e.g., level of involvement, affect, recent events) that might influence the results. 65

Administration Semi-structured interview format (see Administration Prompts handout and FJA Core Scale) – Begin with general open-ended questions organized around the clusters – Suggested follow-up prompts – Interviewer needs a good understanding of the test items and experience in conducting this type of interview. Feedback: Check your impressions with the family member and reconcile differences. (See Administrative Prompts handout.) Throughout the interview, it is important to remember to remain as open and non-judgmental as possible. 66

Example of Administration Format: Self Knowledge General Prompts – Tell me about how things are going with (child’s name)? – What do you think would really help (child’s name)? – How easy is it for you to talk with others about (child’s name)? What helps? – Tell me about how things are going with you? Specific Prompts – Let’s talk about what has caused (child’s name’s) difficulties. – What would be the good things that people would say about (child’s name)? – How do you think you and your family can help with (child’s name’s ) difficulties? Specific item can be read (or paraphrased) to the family. This should be the last resort. 67

Scoring Guidelines The PSPs should integrate their current knowledge of the family, information provided by the family during discussion other conversations with the family, observation, as well as information from the youth, natural and formal supports and other key stakeholders. Should reflect the family’s average level of functioning for each item during the past month. Use observation and reported information in making a rating. Try not to use what you “think” the caregivers’ skills or knowledge are. Expect that there will be fluctuations—may not be a linear process. 68

Scoring Guidelines Take into consideration factors such as gender, life experiences, cultural heritages, socio-economic circumstances and beliefs/values. Try not to impose your own value judgments that may be heavily influenced by your age, gender, social class, or cultural background. Always work with the family when using this tool – it is a dialogue. Try to use the same procedures for gathering information (e.g., talk to the same informants, use the same interview format) for each administration. 69

Training Initial in-person or video-conference basic training (rationale, background, administration, scoring) Watch and rate two online videos and send the scores to Georgetown University and receive feedback. Record (video or audio) a practice FJA interview, send to Georgetown University and receive feedback from FJA staff. Additional feedback as needed. 70

Contact Information Bruno J. Anthony, Ph.D. Professor of Pediatrics and Psychiatry Deputy Director, Center for Child and Human Development Director of Research, Child and Adolescent Psychiatry Georgetown University 202-687-5086 [email protected] Celia Serkin Executive Director Montgomery County Federation of Families for Children’s Mental Health 301-879-5200, ext. 27 [email protected] 71

Questions 72

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