Family Roles/Family-driven Care

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Information about Family Roles/Family-driven Care
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Published on February 20, 2014

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The Building Bridges Initiative (BBI): Advancing Partnerships. Improving Lives. : The Building Bridges Initiative (BBI): Advancing Partnerships. Improving Lives. Family Roles/Family-driven Care : A Restraint/Seclusion Reduction Core Strategy © Presented by: Beth Caldwell, MS BBI Mission: BBI Mission Identify and promote practice and policy initiatives that will create strong and closely coordinated partnerships and collaborations between families, youth, community- and residentially-based treatment and service providers, advocates and policy makers to ensure that comprehensive services and supports are family-driven, youth-guided, strength-based, culturally and linguistically competent, individualized, evidence and practice-informed, and consistent with the research on sustained positive outcomes . 2 BBI Core Principles: Family Driven & Youth Guided Care Cultural & Linguistic Competence Clinical Excellence & Quality Standards Accessibility & Community Involvement Transition Planning & Services (between settings & from youth to adulthood) BBI Core Principles 3 BBI Joint Resolution: BBI Joint Resolution Includes a commitment to: “ …strive to eliminate coercion and coercive interventions (e.g., seclusion, restraint and aversive practices)… ” ( http://www.buildingbridges4youth.org/sites/default/files/BB-Joint-Resolution.pdf ) 4 The SIX CORE STRATEGIES©:: The SIX CORE STRATEGIES©: The only evidence-based practice researched to achieve the culture change that is required to successfully prevent and reduce the use of restraint and seclusion. The Six Core Strategies© utilize strength-based/recovery-oriented, trauma-informed and consumer/client & family-driven care as foundation principles for operationalizing practices that result in significantly reducing the use of Restraint and Seclusion. 5 SAMHSA’S National Registry of Evidence-based Programs and Practices: SAMHSA ’ S National Registry of Evidence-based Programs and Practices http://www.nrepp.samhsa.gov/ViewIntervention.aspx?id=278 Type in: Six Core Strategies 6 The Six Core Strategies© to Prevent Violence and S/R : 7 The Six Core Strategies© to Prevent Violence and S/R Leadership Toward Organizational Change Use Data To Inform Practices Develop/Support/ Empower Your Workforce Implement S/R Prevention Tools Actively recruit, empower & include youth and families in all activities Make Debriefing rigorous Core Strategy Focus: Core Strategy Focus Family Roles – family-driven care Objectives: 9 Objectives Understand the importance of welcoming, partnering with, engaging and listening to family members about all aspects of their child and family Understand the specific importance of hiring family advocates and having a variety of vital roles throughout the organization for family advocates and families Gain an understanding of a variety of practices that support successful engagement of family members Understand how a focus on all of the above support youth in having positive sense of self, in having hope, in gaining skills at self-regulation – and in preventing the use of restraint and seclusion. What is Family Driven?: What is Family Driven? Family Driven means families have a primary decision making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory and nation. This includes: Choosing culturally and linguistically competent supports, services, and providers; Setting goals; Designing, implementing and evaluating programs; Monitoring outcomes; and Partnering in funding decisions. Source: Federation of Families for Children ’ s Mental Health http://www.ffcmh.org/ 10 Why is it important?: Why is it important? Strongest predictor of post-transition success, after education, is support from family Fifty percent (50%) of youth who have aged out will live with some member of their family within a couple of years (about equally divided between parents and other relatives) Source: Courtney, M., 2007; Courtney, M., et al, 2004 “ Work with family issues and on facilitating community involvement while adolescents are in residential treatment may have assisted these adolescents to maintain gains for as much as a year after discharge.. ” Source: Leichtman, M., et al, 2001 11 Why is it important?: “ The effectiveness of services, no matter what they are, may hinge less on the particular type of service than on how, when, and why families or caregivers are engaged in the delivery of care. While traditional forms of care approached mental health treatment in a hierarchical top down approach (with the clinician maintaining some distance from the recipients of treatment), this approach is not reflected in newer forms of service delivery. It is becoming increasingly clear that family engagement is a key component not only of participation in care, but also in the effective implementation of it. “ Source: Burns, B. et al, 1999, p. 238 12 Why is it important? What does the research say?: What does the research say? Residential-specific research shows improved outcomes with shorter lengths of stay , increased family involvement , and stability and support in the post-residential environment (Walters & Petr, 2008). 13 What Can Programs Do?: What Can Programs Do? They can take large and small steps – ALL STEPS ARE IMPORTANT 14 Hire Family Partners/Advocates : Hire Family Partners/Advocates MOST IMPORTANT STEP : Hire multiple family partners/advocates Have senior family partner as part of executive team & provide supervision to all family partners Have family partners (AND FAMILY MEMBERS) as part of EVERY organizational work group/ committee/task force Have family partners share offices with other staff – spread throughout the organization 15 Hire Family Partners/Advocates : Hire Family Partners/Advocates They serve as co-trainers in staff orientation and ongoing training programs They serve as part of hiring groups to hire staff They serve as part of evaluation teams to evaluate each individual staff “ Nothing about us without us! ” 16 Why Family Partners/ Advocates for Preventing Restraint & Seclusion?: Why Family Partners/ Advocates for Preventing Restraint & Seclusion? Family Partners have been found to be the most important component for an organization to truly make the massive improvements needed so that families feel welcome. When families feel welcome and that their voice is heard – they are more willing to collaboratively work with program staff. The more engaged families are the more hope for youth to return home successfully in a short timeframe - and to experience normalcy. When youth have hope – they have less stress – they do not lose their sense of belonging in the community. They are more able to self-regulate. 17 2ND MOST IMPORTANT STEP: Develop Strategic Plan to Successfully Engage Families and Operationalize Family-driven Care: 2 ND MOST IMPORTANT STEP : Develop Strategic Plan to Successfully Engage Families and Operationalize Family-driven Care Go to the BBI website ( www.buildingbridges4youth.org ), download, review and plan to use the BBI Self-Assessment Tool as part of your strategic plan 18 As part of Strategic Plan: As part of Strategic Plan Have all leadership team members read and read and read: BBI Family Tip Sheets (long and short versions) & BBI Engage Us: A Guide Written by Families for Residential Providers ( www.buildingbridges4youth.org ) Massachusetts Department of Mental Health Creating Positive Cultures of Care Guide Chapters (see slide # 46 for order information) : Successfully Working with Family Partners Embracing Family-driven Care A variety of other materials to support increased understanding and improved knowledge-base (see references at end of this chapter and in the Positive Cultures of Care Guide Chapters referenced above) 19 Why a Strategic Plan for FDC? How is that related to Preventing Restraint & Seclusion?: Why a Strategic Plan for FDC? How is that related to Preventing Restraint & Seclusion? Most residential programs have not truly evaluated themselves against a range of best practices specific to family-driven care. When programs truly transform towards FDC, they become strength-based, they focus on listening and respect, they implement practices with evidence for successful re-unification – all practices that support families and youth in having hope, in healing wounds, in feeling safe and competent together. All of this promotes more normalizing activities for youth and families in communities. When engaged in strength-based, normalizing activities youth experience less frustration – they and their families learn to express their frustrations early on and calm themselves – before frustration leads to explosive behaviors. 20 To Ensure Welcoming of & Partnering with Families you would see:: To Ensure Welcoming of & Partnering with Families you would see: Board/Executives Focusing on Specific Areas If these areas are not already in place, consider including in a strategic plan. 21 Board/Executive Focus Areas: Board/Executive Focus Areas Leadership Passionate focus on transformation towards FDC (ala Bill Anthony: walk the walk vs just talk the talk) Agency clear values (e.g., strength-based, trauma-informed, individualized & flexible; family-driven; youth-guided; cultural and linguistic competence; community integrated) 100% staff competent in skills which = values (primarily: respect/compassion/empathy /listening/choice /kindness/patience) Multiple program practices clearly spelled out for each value Sophisticated Supervision Systems – especially Clinical 22 Small Step Example: Small Step Example Raquel Hatter, CEO of large residential program, went back to her agency after the first BBI Summit and implemented multiple improvements, including: Primary focus on welcoming families as full partners Hired senior executive focused on family Rewrote job descriptions to include FDC Made supervisors accountable (some eventually asked to leave) 23 Board/Executive Focus Areas: Board/Executive Focus Areas Fully implementing: Family Search & Engage Wraparound/Child & Family Teams Best Practice Clinical Engagement Skills (i.e. variations of Functional Family Therapy/Multi-systemic Therapy) Clear expectations for all disciplines of staff to work interchangeably in residential, home & community 24 Board/Executive Focus Areas: Board/Executive Focus Areas Use data to inform practice: Restraint/Seclusion Achieving Permanency for every child Putting into place for every child a broad community support network Precipitous discharges Hospitalizations Re-admissions into out-of-home care/hospitals for all youth at least 1 to 2 years post discharge 25 Board/Executive Focus Areas: Board/Executive Focus Areas Quality Improvement % of youth spending time every day with family members and/or in community engaging in pro-social activities w/ pro-social peers % of family members met with every week % of families connected to and part of family support groups in community 26 Board/Executive Focus Areas: Board/Executive Focus Areas Ensure Fiscal Strategies that Support Working with Families in their Homes and Communities during and post residential stays (i.e. 6 months to 2 years post) Offer long term: respite/in-home support Set expectations in staff job descriptions/ contracts for minimum % of time staff spend in communities w/ families Rename positions (i.e. ‘ clinical staff ’ become ‘ reunification specialists ’ ) to emphasize focus on permanency/reunification 27 Board/Executive Focus Areas: Board/Executive Focus Areas Ensure executive team members: Have open door policy for family members (at least one) meets/greets every new family (at least one) interviews every family individually at discharge and again – 6 months post discharge (and all agency staff) represent the cultures/ethnicities/races & speak the languages of the youth and families served 28 To Ensure Welcoming of & Partnering with Families you would see:: To Ensure Welcoming of & Partnering with Families you would see: Staff of all Disciplines Implementing a variety of Family-driven Practices 29 Examples of Practices you would see: : Examples of Practices you would see : Every Staff is ‘ Director of First Impressions ’ Families can come to program 24/7 Warm and comfortable physical environments Families can go to every part of the program – spending time in their child ’ s room and classroom and activities 30 Examples of Practices you would see: : Examples of Practices you would see : Lose the words ‘ home-visits ’ Family focus groups decide education offerings for families Families called everyday to share child strengths – not just about issues & encouraged to call multiple times daily Youth call different family members multiple times daily Ensure families have dedicated time to talk with front line staff Make it a practice to consult with families to seek counsel and engage in decision-making 31 Examples of Practices you would see:: Examples of Practices you would see : Create opportunities (i.e. weekend camping) for families to be proud of their children/to create positive memories Support siblings NO MORE GROUP REC – all recreation focused on youth individual interests/talents and any ‘ group ’ activity involves siblings/families/extended families- i.e. cousins Gather tickets/freebies for families to use with children (maybe with a staff for support) Develop close collaborations with clinical expertise in community (e.g., trauma; SA; DV) & supports (e.g., housing; community activities; peer mentors; respite) 32 The Advice of A Family Advocate: The Advice of A Family Advocate Karen Johnson, Family Advocate, FDC, FPC SCO Family of Services Briarwood, NY Office: 718.658.4101 ext: 162 Cell: 917.232.9269 kajohnson@sco.org 33 Karen Johnson, Family Partner: Karen Johnson, Family Partner I help myself to help my families by CLEARING MY OWN EMOTIONAL BAGGAGE to mentally prepare to HEAR their concerns with a clean, mental slate. I LISTEN to them and meet them where they are TODAY, and focus on the family ’ s stories, issues, needs, wants, and concerns. I ACKNOWLEDGE their pain, challenges, loss, grief, turmoil, anger, and rejection and offer no solution at the onset.  I LISTEN and make myself completely present. This informs my response to them and enables me to treat our families with the utmost respect, care, patience, acceptance, and understanding. 34 Karen Johnson, Family Partner: Karen Johnson, Family Partner I act as a HURDLE HELPER to our parents of children by creating opportunities for them to MAINTAIN FAMILY TIES - especially when/ if they are out of practice in doing so. I remind families the most valuable present they can give their child is their presence. I offer LOANER PHONES if necessary, METRO CARDS and a ride to get them accustomed, to MEET and see each other OFTEN for a meal, an activity, a walk, quiet time, or a game; preferably in their community.   35 Karen Johnson, Family Partner: Karen Johnson, Family Partner I CALL families OFTEN to share a story, to help relay a story, to remind our residents (whenever possible) their families are not very far away - to visit, or speak with. I offer our families many opportunities to work and play together; work on their therapeutic and nurturing relationships, and;; play so they can have opportunities to keep things light and learn to have pleasure in each others company. I strongly believe a family that plays together stays together. 36 What to be cautious of:: What to be cautious of: Events on residential campuses (why?) Lack of sophisticated/committed Clinical Supervisors Group residential recreation (why?/who to invite? (build memories with families) Residential holiday traditions ( “ Is it about the program or about the youth/family? ” ) 37 How do FDC practices prevent Restraint & Seclusion?: How do FDC practices prevent Restraint & Seclusion? When families feel welcome, when they feel respected, when they feel their voices are heard, they can support program staff in learning how to support youth to promote self-soothing and prevent escalation. 38 Family members share:: Family members share: “ My daughter was restrained again and again in the residential program - until we took her out. I had told the staff during the admission- and again in different conversations with the clinical staff - that my daughter was very sensitive to noise. She needed to wear headphones or leave any location where there was a high noise level. One day they were showing a movie w/ a loud sound in the classroom and she tried to get up to leave. The aide behind her put her shoulders on my daughter so she couldn ’ t get up. My daughter tried to push her away – by now panicking re: the noise. The aide just held on more firmly and the situation got out of control and that was my daughter ’ s first restraint ever in her life. After that first restraint, it was if they thought my daughter was aggressive (she has never been aggressive- that is not her issue) and they would resort to restraints whenever staff thought she appeared to be getting upset. Later, when I asked the aide who first restrained her if she knew anything about my daughter ’ s sensitivity to loud noise- she replied that she had never heard anything and she had been my daughter ’ s aide for 2 months. In fact, we found out neither the teacher nor the direct care staff knew anything about this. If only they would listened to me and understood my daughter ’ s individual needs, there would have never been a restraint. ” 39 Family members share:: Family members share: “ Seeing my son restrained is one of the most traumatic memories I have ever had – he was screaming and reaching out to me – and I was told to leave the room. He had only been running to give me one last hug before I left from my visit with him - and when he was told to stop- he did not stop – he just kept running to give me a hug. The staff later said they were afraid he would have gone out the door – but I was standing at the door. You should have seen him afterwards- neither I nor my son ever felt comfortable with any staff in that program again. They ended up restraining him multiple times and I never believed the reasons they did were necessary- the time I saw surely wasn ’ t. I had never restrained him in 16 years… why did they need to? It was if nobody was paying attention to the situation (i.e. a young man wanting to give his mom a hug) – they were only focused on the rules of the program. Why couldn ’ t they have just been sensitive and understood his real human needs in the minute? Why were they so rule focused? ” 40 Family members share:: Family members share: “ My husband and I had come for a treatment team meeting. When the meeting was over, a staff told my son (in a manner that was not really kind) that he had to get back to math class now that the meeting was over. He started crying and said he wanted to have some time with his mom and dad. The staff said ‘ no ’ and started to take his arm. He really started crying then and wouldn ’ t budge out of his seat. The staff took his arm firmly and tried to get him up and he tried to get her arm off of his and pushing her away and screaming and she called for a restraint. Why couldn ’ t we have had ½ hour to transition– he is only 8 years old . In fact – it was Friday- why couldn ’ t we have just taken him home 2 hours before school go out? Programs need to be more flexible – and err on the side of families spending time together . 41 Family members share:: Family members share: “ I literally was begging the supervisor to let my son come home for his grandma ’ s birthday - but the supervisor said he had not ‘ earned it ’ . So the night of the party, he tried to climb out the window of the dorm to come home and staff pulled him out and he started pushing staff away and they restrained him. What does keeping him home from his grandma ’ s birthday teach him? Do you really have to earn time with your grandma? Why couldn ’ t they listen to me- the mom? Why couldn ’ t they be flexible and put family first? If he did something wrong, I could give him a consequence- but missing his grandma ’ s party and ending up in a restraint – I never trusted that supervisor again; in fact, I never worked well with staff from that program again. When my mom (grandma) found out he ended up in a restraint, it caused her such pain. All of us were in pain – nobody was helping us. And restraining a 12 year old – I have never heard of such a thing. My son said that a lot of kids got restrained! ” 42 Summary of just a few recommendations from families to prevent restraint and seclusion:: Summary of just a few recommendations from families to prevent restraint and seclusion: Really listen to and respect families and children – and communicate what you learn w/ all staff Be flexible first Be sensitive always Know each child ’ s individual needs Put family first See & understand everything that is happening in the moment and do not focus so much on rules when distress is evident 43 References: References Burns B.J., Hoagwood, K, & Mrazek , P.J. (1999). Effective treatment for mental disorders in children and adolescents. Clinical Child and Family Psychology Review 2(4):199-254. Courtney, M.E. (2007). Building Bridges Initiative, Innovative Practices Workgroup. [Conference call presentation] Courtney, M.E., Terao , M.E., Bost , N. (2004). Midwest Evaluation of the Adult Functioning of Former Foster Youth: Conditions of Youth Preparing to Leave State Care. Executive Summary LeBel, J. & Lim, A. (Eds.) (2012, May 3). Creating positive cultures of care: A resource guide, (3 rd edition), Boston, MA: Massachusetts Department of Mental Health. 44 References: References Leichtman, M., Leichtman, M. L., Cornsweet, B. C., & Neese, D. T. (2001). Effectiveness of intensive short-term residential treatment with severely disturbed adolescents . American Journal of Orthopsychiatry, 71 (2), 228‑235. National Registry of Effective Programs and Practices (NREPP). (2012). Reducing coercion, violence and the use of seclusion and restraint in mental health settings. Curriculum Toolkit. National Association of Mental Health Program Directors & Caldwell Associates @ http://nrepp.samhsa.gov/ViewIntervention.aspx?id=278 Walters, U. M., & Petr, C. G. (2008). Family-centered residential treatment: Knowledge, research, and values converge . Residential Treatment for Children and Youth, 25 (1), 1‑16. 45 ORDERING/DOWNLOADING: ORDERING/DOWNLOADING BBI documents are available on the BBI website: www.buildingbridges4youth.org To order the MA DMH Creating positive cultures of care: A resource guide, contact: MA DMH Child & Adolescent Division 617-626-8090 dmhinfo@dmh.state.ma.us 46 Websites (Family-Driven Care): Websites (Family-Driven Care) The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) http://tash.org/advocacy-issues/restraint-and-seclusion-aprais/  Children Injured by Restraints & Aversives users.1st.net/cibra/index.htm  Federation for Children with Special Needs www.fcsn.org  Federation of Families for Children ’ s Mental Health (FFCMH) www.ffcmh.org  Massachusetts Association for Mental Health (MAMH) www.mamh.org  National Alliance for the Mental Ill (NAMI/Massachusetts) www.nami.org 47 Websites (Family-Driven Care): Websites (Family-Driven Care) Parent/Professional Advocacy League www.ppal.net  Research & Training Center on Family Support & Children ’ s Mental Health www.rtc.pdx.edu Substance Abuse & Mental Health Services Administration Children http://www.samhsa.gov/children/index.asp 48 Websites (Family Partners) : Websites (Family Partners) National Federation of Families for Children ’ s Mental Health: http://ffcmh.org/   Parent/Professional Advocacy League: www.ppal.net     49 Contact information for Six Core Strategies©: Contact information for Six Core Strategies© Dr. Kevin Huckshorn kevinurse@gmail.com Dr. Janice LeBel jlebel@comcast.net Beth Caldwell bethcaldwell@roadrunner.com 50 BBI Contact Information: BBI Contact Information Dr. Gary Blau Gary.Blau@samhsa.hhs.gov 240-276-1921 Beth Caldwell bethcaldwell@roadrunner.com 413-644-9319 www.buildingbridges4youth.org 51

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