VA Caregiver Support Program

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

9% of U.S. adults are caregivers 16.9 million civilian caregivers 4.4 million Pre-9/11 military caregivers 1.1 million Post-9/11 military caregivers Source: National survey of caregivers of adults in the U.S., with findings presented in Ramchand R, Tanielian T, et al., Hidden Heroes: America s Military Caregivers, RAND Corporation, 2014 (available at www.rand.org/military-caregivers). RAND 2014

AARP Public Policy Institute and United Hospital Fund Report Home Alone: Family Caregivers Providing Complex Chronic Care 78% of Family Caregivers manage different types of medication, including administering intravenous fluids and injections. 35% of Family Caregivers found wound care very challenging and wanted more training 69% of care recipients did not have home visits from health care professionals 53% of Family Caregivers serve as care coordinators Family caregivers performing medical/nursing tasks reported both positive and negative effects on their quality of life *Susan C. Reinhard, Rn, PhD, Carol Levine, MA, & Sarah Samis, MPA Released October 2012 6

Caregiving Needs in the Veteran Population Red bars represent cognitive needs Green bars represent Activities of Daily Living (ADL) Blue bars represent Instrumental Activities of Daily Living (IADLs) Who is caring for enrolled Veterans? (n=2,385,358) Spouse 59% Adult Child 26% Friend or Neighbor 20% Brother or Sister 10% Parent 9% Of the estimated 2.4 million enrollees (27%) receiving any assistance with daily living activities, most (63%) receive 10 hours or less assistance per week. Source: 2016 Survey of Enrollees Veterans Health Administration 7

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 8

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 Pilots 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 9

Menu of VA Services to Support Families In-Home Care Care Skilled Nursing Home Health Aide Home Based Primary Care Veteran Directed Home & Community Based Care Respite Care Care 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 Caregiver Support Caregiver Support Coordinators Peer Support Mentoring Program Building Better Caregivers TM Spouse Telephone Support REACH VA Support Groups Veterans Health Administration 10

Caregiver Support Coordinators (CSC) Located at each VA medical center Clinical experts on caregiver issues 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 11

Program of Comprehensive Assistance for Family Caregivers Program Overview Clinical program, providing the following additional services 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 22,000 current participants Veterans Health Administration 12

Program of General Caregiver Support Services Program Overview Clinical program, providing the following services to caregivers of Veterans enrolled in VA health care, regardless of era of service or reason for requiring a caregiver: Training and Education Diagnosis Specific Programs for Caregivers Caregiver Support Line Caregiver Support Program Website Email Listserv Veterans Health Administration 13

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 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 14

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, spinal cord injury/disorders, MS, PTSD, and ALS. 4 sessions with the caregiver over a 2-3 month timeframe, in person and over telephone Core skills taught to the caregiver include problem solving, positive thinking, mood management, and stress reduction Caregiver Telephone Support Caregiver 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 ALS MS PTSD Veterans Health Administration 15

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, selfcare 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 selftests and activities Participant satisfaction averages 4.5 on a 5-point Likert scale Veterans Health Administration 16

VA Caregiver Support Line - 1-855-260-3274 Located in Canandaigua, NY Over 320,000 calls received Averaging over 200 calls per day Staffed by licensed social workers Follow-up provided by local CSC Consistently positive comments and appreciation from caregivers Veterans Health Administration 17

Caregiver Web Site www.caregiver.va.gov Provides zip code based interactive Caregiver Support Coordinator locator Contact information for the Caregiver Support Line Caregiver Toolbox Caregiver connections with stories from peer caregivers Link to application for the Program of Comprehensive Assistance for Family Caregivers Videos of family caregivers and Veterans Averaging over 2,000 hits per day Veterans Health Administration 18

Research: Veteran Health Care Utilization Increased Utilization of Care Background: 15,650 Veterans participating in the Program of Comprehensive Assistance for Family Caregivers (PCAFC) 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 PCAFC 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 19

Research: Assessing the Impact of PCAFC on Caregiver Well-Being Background Two surveys were fielded to examine whether PCAFC increased caregiver well-being (reduced depressive symptoms, reduced financial strain, or increased satisfaction with quality of VA care) Findings For caregivers enrolled in PCAFC compared to those not enrolled in PCAFC, we found: Caregivers in PCAFC feel more confident in their caregiving, know about resources to help caregiving and feel better prepared to support the Veteran s progress and health care engagement The caregivers in PCAFC valued the freedom the stipend provided to be able to be there for their Veteran and connecting with other caregivers Limitations Extremely low response, very small sample and potential self-selection bias of those who returned surveys While the trends are promising, these results are considered pilot results and not appropriate for providing definitive guidance for policy and programmatic decision making Future research on a larger sample needed to confirm trends and make strong conclusions Veterans Health Administration 20

Research: Health Care Utilization after Contacting the Caregiver Support Line (CSL) Pre 9/11 Caregiver Population: Caring for Veterans with smaller disability rating Contacted CSL for support, assistance with care, and connecting Veterans with health care services Post 9/11 Caregiver Population: Caring for Veterans with higher disability ratings Contacted CSL to learn about the Program of Comprehensive Assistance for Family Caregivers and its requirements Both populations had significant increases in service utilization of primary and specialty care in the six months after the call to the CSL compared with the six months preceding the call The CSL has become an alternative and effective entry point for caregivers to help access services that help Veterans and help caregivers manage the care they provide to Veterans Veterans Health Administration 21

Lessons Learned Caregivers are everywhere Caregivers likely do not call themselves caregivers Caregivers need TIME, INFORMATION, and SUPPORT EAP Services Workplace flexibility Linkage to other caregivers Supporting caregivers helps them and those they care for Veterans Health Administration 22

Questions? Meg Kabat, LCSW-C, CCM National Director, VA Caregiver Support Program Care Management and Social Work Department of Veterans Affairs margaret.kabat@va.gov Veterans Health Administration 23