Working Together to Support the Caregivers of Service Members, Veterans, and their Families

Working Together to Support the Caregivers of Service Members, Veterans, and their Families Cicely K. Burrows-McElwain Substance Abuse and Mental Health Services Administration (SAMHSA) Terri Tanielian Pardee RAND Graduate School Meg Kabat U.S. Department of Veterans Affairs Laura J. Bauer Rosalynn Carter Institute for Caregiving July 12, 2016

Welcome Cicely K. Burrows-McElwain, L.C.S.W.-C. Public Health Advisor (Military and Veteran Affairs), National Policy Liaison Branch, Division of Regional and National Policy/ Office of Policy, Planning, and Innovation (OPPI), SAMHSA 3

SAMHSA s SMVF Technical Assistance Center Facilitate military and civilian interagency strategic planning sessions Provide technical assistance to develop and implement a state-wide SMVF behavioral health strategic plan Strengthen the coordination of military and civilian behavioral health systems serving SMVF Improve information sharing and data visualization Implement SMVF best practices Build workforce capacity 4

SAMHSA s SMVF TA Center Technical Assistance Resources for Interagency State Teams 5

SMVF TA Center Policy Academy States 49 States, 4 territories, and the District of Columbia 6

Why this SMVF Caregivers Webinar Discussion is so Important Evolving and emerging needs of caregivers Challenges exist in providing services to caregivers Improvements in outreach and engagement are needed Best practices need to be identified and implemented in order to sustain caregivers well-being Information, programs, and resources need to be coordinated and accessible 7

Webinar Objectives Describe what makes the behavioral health needs of SMVF caregivers unique and different Review information, resources, and studies that can be used for strengthening behavioral health services for caregivers Examine how military and civilian behavioral health care providers can best support SMVF caregivers by increasing access to best practice programs and supports Explore opportunities for public-private collaboration and partnerships as an option for supporting military caregivers 8

Caregiver Support Requires intensive interaction between federal, state, and community partners 9

Terri Tanielian, M.A. Senior Research Analyst, RAND Corporation Faculty, Pardee RAND Graduate School 10

Hidden Heroes America s Military Caregivers Rajeev Ramchand Terri Tanielian

Who is caring for disabled veterans? What is the physical, emotional, and financial toll of caregiving? What resources are available to caregivers? Where are there gaps?

Methods and approach Phase 1 Literature review Focus groups/conversations with military caregivers Phase 2 National survey of caregivers Comprehensive environmental scan

5.5 million military caregivers

1.1 million post-9/11 military caregivers

Describing Caregivers

Post-9/11 caregivers Younger More likely to be a spouse, friend, or parent Less likely to have a support network More likely to be employed

Describing Care Recipients

Post-9/11 care recipients More likely to have a behavioral health problem

Post-9/11 Pre-9/11 Civilian Behavioral health 36% 33% 64% Traumatic brain injury 20% 10% 10% Chronic (e.g., cancer) 35% 63% 77% Neurological 6% 31% 29%

Post-9/11 care recipients More likely to have a behavioral health problem More likely to have a disability rating

% of care recipients with a disability rating Post-9/11 care recipients 58% Pre-9/11 care recipients 30%

Caregiving Duties

Post-9/11 Pre-9/11 Civilian 94% 96% 79% 75% 64% 44% 54% 49% 43% Help with at least 1 1 activity ADL of daily living Help with at least 1 Help Help care care recipient cope 1 instrumental IADL with cope stressful with stressful situations activity of daily living situations

Burden of Caregiving

% of caregivers meeting criteria for probable depression Post-9/11 38% Pre-9/11 19% Civilian 20% Non-caregiver 10% Consistent with general population

Post-9/11 Pre-9/11 Civilian Non-caregiver 32% 28% 18% 23% 19% 12% 14% 14% No health insurance No regular source of health care

Resources for Caregivers

53 52 Helping hand Social support 3 Financial stipend 4 Health care Support programs for caregivers 37 Education/training 21 Wellness activities 4 21 Religious support 9 13 Patient advocacy Respite care Mental health care

53 52 Helping hand Social support 3 Financial stipend 4 Health care Helping caregivers provide better care 37 Education/training 21 Wellness activities 4 21 Religious support 9 13 Patient advocacy Respite care Mental health care

53 52 Helping hand Social support 3 Financial stipend 4 Health care Promoting caregiver well-being 37 Education/training 21 Wellness activities 4 21 Religious support 9 13 Patient advocacy Respite care Mental health care

53 52 Helping hand Social support 3 Financial stipend 4 Health care Helping caregivers families 37 Education/training 21 Wellness activities 4 21 Religious support 9 13 Patient advocacy Respite care Mental health care

53 52 Helping hand Social support 3 Financial stipend 4 Health care Compensating for income loss 37 Education/training 21 Wellness activities 4 21 Religious support 9 13 Patient advocacy Respite care Mental health care

Gaps in service Programs address veterans needs, not caregivers Eligibility targets older beneficiaries (60+), especially at the state level Younger/non-family caregivers often ineligible

The Future of Caregiving

Threats to the future of caregiving Aging parents Young relationships

Threats to program sustainability Program maturity Vulnerability to waning interest and support Novel approaches that lack evidence of effectiveness

A path to better support

Provide training and continuing education Improve health care coverage and structured support for better health Raise awareness to match caregivers with services and boost public support Empower caregivers

Create caregiver-friendly environments In the workplace In health care settings

Fill gaps in programs and services Align resources, eligibility Expand respite care

Plan for the future Provide for long-term needs Enable sustainable programs Ensure access to quality services Invest in research

Hidden Heroes

Meg Kabat L.C.S.W.-C., C.C.M. National Director, Caregiver Support Program, U.S. Department of Veterans Affairs 44

Caregiver Support Program Department of Veterans Affairs Meg Kabat, LCSW-C, CCM National Director, VA Caregiver Support Program Care Management & Social Work Services

Caregiver Support Program Mission Mission Statement: To promote the health and well-being of family caregivers who care for our nation s Veterans, through education, resources, support, and services. VETERANS HEALTH ADMINISTRATION 46

History of VA s Caregiver Support Program (CSP) 2007: VHA established CSP to implement PL 109-461, instructing VA to carry out a pilot program to assess the feasibility and advisability of various mechanisms to expand and improve caregiver assistance services. CSP funded 8 pilot projects across the United States Concluded August, 2009 2010: VHA expanded CSP to implement PL 111-163, the Caregivers and Veterans Omnibus Health Services Act of 2010, to include providing an unprecedented level of direct services and supports to family caregivers of Veterans VETERANS HEALTH ADMINISTRATION 47

Menu of VA Services In-Home Care Caregiver Support Skilled Nursing Caregiver Support Coordinators Home Health Aide Peer Support Mentoring Program Home Based Primary Care Building Better Caregivers TM Veteran Directed Home & Spouse Telephone Support Community Based Care REACH VA Respite Care Support Groups Services to Address Mobility Issues Equipment Home Modification Automobile Modification Education and Training Financial Support Aid and Attendance Caregiver Stipend (Post 9-11) Information and Referral Caregiver Web site: www.caregiver.va.gov Caregiver Support Line: 1-855-260-3274 VETERANS HEALTH ADMINISTRATION 48

Caregiver Support Coordinator (CSC) Located at each VA medical center Clinical experts on caregiver issues Knowledgeable about VA and non-va resources Organize Caregiver focused activities and services National Family Caregivers Month (November) Ensure Caregiver sensitivity is integrated into all programs Provide National Caregiver Support Line follow-up VETERANS HEALTH ADMINISTRATION 49

Program of Comprehensive Assistance for Family Caregivers Program Overview Clinical Program, providing the following additional services directly to Family Caregivers of eligible Veterans injured in the line of duty on or after September 11, 2001: Stipend Enrollment in CHAMPVA Mental Health Beneficiary Travel Education and Training Additional respite Program participation must: Be in the clinical best interest of the Veteran Support the Veteran s progress in treatment VETERANS HEALTH ADMINISTRATION 50

Program of Comprehensive Assistance for Family Caregivers Current Data* Applications filed: 73,000 Participating Caregivers/Veterans: 22,900 Tier 3 7,000 (stipend national average $2,400 per month) Tier 2 8,900 (stipend national average $1,500 per month) Tier 1 7,000 (stipend national average $640 per month) New Healthcare Coverage enrollees: 5,500 Caregiver Demographics: Gender: 90% women Relationship: spouses/significant others (86%) Age: 26-40 yrs old (53%), 41-64 years old (34%) VETERANS HEALTH ADMINISTRATION *Data current as of April 2016 51

Program of Comprehensive Assistance for Family Caregivers Caregiver Education and Training Standardized Core Curriculum Developed in collaboration with Easter Seals In-person, workbook/dvd, or web-based Includes modules on: Caregiver Self-Care Home Safety Basic Caregiver Skills (vital signs, etc) Providing Personal Care Managing Challenging Behaviors Resources (legal, financial, VA, community, and advocacy) Training Data Update: 33,000 Family Caregivers have completed training to date VETERANS HEALTH ADMINISTRATION 52

VA Caregiver Support Program Caregiver Training and Education Programs Caregiver Self Care Courses In person classroom trainings provided to caregivers, focused on supporting and meeting the needs of caregivers. Classes are led by trained Easter Seals facilitators and are offered in English and Spanish. Topics include: - Managing Stress - Problem Solving & Effective Communication - Taking Care of Yourself - Utilizing Technology Caregiver Education Calls VA s National Caregiver Support Line offers monthly telephone education calls for caregivers with a theme of Care for the Caregiver. The topics change monthly. Peer Support Mentoring Peer Support Mentoring was developed to strengthen relationships between caregivers of all era s, to provide an opportunity for networking, and to empower caregivers to help one another. Peer Support Mentors receive training and support prior to being matched with mentees. VETERANS HEALTH ADMINISTRATION 53

VA Caregiver Support Program Caregiver Training and Education Programs Resources for Enhancing all Caregivers Health (REACH VA) REACH VA is an evidence- based education, skills building, and support intervention for Caregivers of Veterans with dementia and spinal cord injury/disorders. New REACH interventions are under development for MS, PTSD, and ALS. The REACH intervention is available at many VA local medical centers and consists of 4 sessions with the Caregiver over a 2-3 month timeframe. Can be completed in person or over the telephone. - Core skills taught to the Caregiver are: Problem solving, Positive thinking/mood management, and stress reduction. VETERANS HEALTH ADMINISTRATION 54

VA Caregiver Support Program Caregiver Training and Education Programs General Telephone Support General Telephone Support is an intervention provided to caregivers via a telephone support group. The following Telephone Support Groups are available at medical centers across the country, depending on local interest: - Caregivers of All Eras - Spouses of Post 9/11 Veterans - Dementia - Spinal Cord Injury /Disorders. - Telephone support for ALS, MS and PTSD are under development VETERANS HEALTH ADMINISTRATION 55

VA Caregiver Support Program Caregiver Training and Education Programs Building Better Caregivers TM An interactive, web based workshop developed by Stanford University and provided in partnership with the National Council on Aging (NCoA) Equips caregivers with the knowledge, skills, and support to boost their selfconfidence in maintaining and leading active, fulfilling lives 6-week workshop composed of 20-25 caregivers, moderated by 2 trained facilitators Topics include managing difficult behaviors and emotions, reducing stress, self-care methods to improve health, making decisions, finding additional help and resources, and planning for the future Weekly activities include reading and applying new knowledge; making and posting a weekly action plan, brainstorming, problem solving, and celebrating milestones with fellow participants via bulletin boards; and participating in self-tests and activities Participant satisfaction averages 4.5 on a 5-point Likert scale VETERANS HEALTH ADMINISTRATION (Dupke, et al., 2016) 56

VA s Caregiver Support Line - 1-855-260-3274 Located in Canandaigua, NY Over 237,000 calls received Averaging 150-200 calls per day Staffed by licensed social workers Follow-up provided by local CSC Consistently positive comments and appreciation from caregivers Expanding the role of the CSL (Wright et al, 2015) VETERANS HEALTH ADMINISTRATION 57

Caregiver Web Site Provides zip code based interactive Caregiver Support Coordinator locator Contact info for Support Line Caregiver Toolbox Caregiver connections with stories from peer Caregivers Link to application for new benefits/services with live chat support Videos of Family Caregivers and Veterans Averaging over 1,000 hits per day with 3 pages viewed during a visit www.caregiver.va.gov VETERANS HEALTH ADMINISTRATION 58

Program Evaluation - CSP Partnered Evaluation Center On June 1, 2014, CSP established the VA Caregiver Support Program Partnered Evaluation Center (VA-CARES) with Dr. Courtney VanHoutven (Durham VA Medical Center) as the Primary Investigator. Aim 1: Assess the impact of the Comprehensive Program on the health and well-being of Veterans by examining health care encounters expected to be sensitive to Caregiver support (potentially avoidable utilization). Aim 2: Assess the impacts of the Comprehensive Program on the health and well-being of Primary Family Caregivers. Aim 3: Understand how Caregivers use and value components of the Comprehensive Program and the General Program. Aim 4: Generate a detailed profile of the costs and services provided under the Comprehensive Program and the General Program. VETERANS HEALTH ADMINISTRATION (Miller et al, 2015) 59

VA-CARES AIM 1 Findings: Veteran Health Care Utilization Increased Access to Care Background: 15,650 Veterans participating in the Program of Comprehensive Assistance for Family Caregivers were compared with 8,339 Veterans who applied for, but were not accepted into the Program Statistical methods were used to carefully adjust for differences in observed Veteran health and demographic characteristics to ensure similarity between the 2 groups Findings: Participation in the Program of Comprehensive Assistance was associated with increased Veteran utilization of the following types of outpatient care: VA Primary Care increased use was seen across 3 year study period Mental Health Care both VA and VHA-purchased - increased use was seen across 3 year study period VA Specialty Care - increased use was seen across first 30 months of study Long-term Care Services and Supports - increased use was seen in first 2 years of study period. No difference was found between groups in Veteran use of Emergency Department or In-Patient Hospitalization VETERANS HEALTH ADMINISTRATION 60

References Dupke, NJ, Plant, KL, Kosteas, J. (2016). Supporting Caregivers of Veterans Online: A Partnership of the National Council on Aging and VA. Fed Pract., January, 33(01), 41-46. Wright P, Malcolm C, Hicken B, Rupper R. (2015). The VA Caregiver Support Line: A Gateway of Support for Caregivers of Veterans. Journal of Gerontological Social Work, DOI: 10.1080/01634372.2015.1019168. Miller KM, Kabat M, Henius J, Van Houtven CH. (2015). Engaging, Supporting, and Sustaining the Invisible Partners in Care. North Carolina Medical Journal, November-December, 76(5), 320-322. VETERANS HEALTH ADMINISTRATION 61

Laura J. Bauer, M.P.A. National Program Director, Operation Family Caregiver, Rosalynn Carter Institute for Caregiving, Georgia Southwestern State University 62

WHAT IS OPERATION FAMILY CAREGIVER? Operation Family Caregiver coaches the families and friends of newly returning service members and veterans to manage difficult transitions. Strengthening Military Families

Operation Family Caregiver Strong Military, Stronger Families Non-clinical, supportive adjunct to any other support the family is receiving. A medical or mental health diagnosis is not required. Takes basic education a step further to help facilitate behavioral change Operation Family Caregiver

PROVEN APPROACH Evidence in support of problem-solving training FOCUS on the Family Caregiver: A Problem-Solving Training Intervention(2001) Problem-Solving Training for Family Caregivers of Persons with Traumatic Brain Injuries: A Randomized Control Trial (2008) Problem-Solving Training via Videoconferencing for Family Caregivers of Persons with Spinal Cord Injuries: A Randomized Control Trial (2008) Does Problem-Solving Training for Family Caregivers Benefit Their Care Recipients with Severe Disabilities? (2012) Telephone-Based Problem-Solving Intervention for Family Caregivers of Stroke Survivors: A Randomized Control Trial (2014) Strengthening Military Families

PROVEN APPROACH Evidence in support of problem-solving training Evidence shows that caregivers who are good at problem-solving are less likely to develop depression, anxiety, and poor health in their first year of caring for a family member. Those who have strong problem-solving skills are better at regulating their emotions, staying positive about their ability to cope with problems as they arise, and are better able to be realistic about what they can and can t do. Strengthening Military Families

AND HOW DOES IT WORK? Together, caregivers and their OFC coaches develop strategies that can help them get through the tough times and make plans for how to manage over the long term. 1 2 3 4 5 CAREGIVER REACHES OUT FOR HELP CAREGIVER CONNECTS WITH OFC COACH CAREGIVER AND COACH DEVELOP A PLAN CAREGIVER DEVELOPS AND PRACTICES NEW SKILLS CAREGIVER, FAMILY, AND ENTIRE COMMUNITY GROWS STRONGER Strengthening Military Families 68

PROVEN APPROACH Evidence in support of problem-solving training Our nation s military families deserve to have access to programs that are proven to work. Strengthening Military Families

KEY COMPONENTS Pre and post-assessment of strengths and challenges FOCUS: skills training and problem solving strategies to address selected challenges ADDITIONS: Self-care, safety, suicide awareness/prevention Ongoing motivation, encouragement and support Military Caregiver Guide: a resource for sustaining new skills Link to additional resources Strengthening Military Families

OFC Direct and Extended Impact Positive Impact on Family, Children, Employment, Community, etc. CAREGIVER (Partner, Parent, Battle Buddy, etc.) 4-6 month Problem Solving Training Significant reduction in: Health Complaints Caregiver Burden Depression Significant increase in: Service Member/Vet Life Satisfaction RESULT: Better Prepared to Provide long-term care Strengthening Military Families 71

UNIQUE, ONE-OF-A-KIND PROGRAM Evidence-based Proven effective Unique to each caregiver Delivered anywhere by Skype/FaceTime Minimized stigma Strengthening Military Families 72

ACTIVE IN 12 LOCATIONS ACROSS THE COUNTRY Strengthening Military Families 73

HOW CAN YOU HELP? reachout@operationfamilycaregiver.org

THANK YOU! www.operationfamilycaregiver.org /OpFamCaregiver

Questions? 76

Contact Meg Kabat, LCSW-C, CCM margaret.kabat@va.gov Terri Tanielian Terri_Tanielian@rand.org Laura J. Bauer, M.P.A. laura.bauer@gsw.edu

Resources US Department of Veterans Affairs Caregiver Support: http://www.caregiver.va.gov/ RAND s research on Veterans topics: http://www.rand.org/research/veterans.html RAND Corporation: Hidden Heroes America s Military Caregivers: http://www.rand.org/pubs/research_reports/rr499.html Rosalynn Carter Institute for Caregiving: http://www.rosalynncarter.org/ Operation Family Caregiver: http://www.operationfamilycaregiver.org/ US Department of Defense Warrior Care: http://warriorcare.dodlive.mil/caregiver-resources/ Elizabeth Dole Foundation: http://www.elizabethdolefoundation.org/ 48

For Technical Assistance Questions, Please Contact SAMHSA s Service Members, Veterans, and their Families Technical Assistance Center 345 Delaware Avenue Delmar, NY 12054 Phone: 518-439-7415, ext. 5270 Email: smvftacenter@prainc.com 50