1. Assistance and Support Services for Family Caregivers Christy Knight, MSW, LCSW Caregiver Support Coordinator Durham VA Medical Center 919-286-0411 ext. 6068 christy.knight@va.gov

2. Learning Objectives Describe who the caregivers are for our Veteran’s Understand the importance of caregivers and their daily activities Highlight facts and findings of caregiver challenges & burdens from the National Alliance for Caregiving- Caregivers of Veterans Study. Review the Caregiver Support Coordinator role Provide an overview of Public Law 111-163 2

3. According to AARP, a CAREGIVER is someone who provides unpaid assistance to someone else who is ill or disabled.

4. Caregivers of Veterans -Spouse, Partner, Adult Children, Parent, Friend, Neighbor, Relative or Ill Person Themselves (Veteran). 4

5. Snapshot of a Veteran Caregiver The typical caregiver of a Veteran whose illness, injury or condition is service-related is a woman who is taking care of her husband or partner. In fact, 96% of these caregivers of Veterans are women, and 70% provide care to their spouse or partner. This contrasts with the national picture of family caregivers where 65% are women and only 6% provide care to their spouse or partner. (National Alliance for Caregiving Veterans’ Study, Nov. 2010) 5

6. Why Family Caregivers Matter  National Alliance for Caregiving and Evercare Survey indicates that the value of services family caregivers provide “for free” when caring for older adults is estimated at $375.00 billion dollars.  Without family care, many people could not live in community.  Caregivers spend about 20.4 hours per week providing care.  31% of caregivers consider their caregiving situation to be highly emotionally stressful.  Caregivers make significant contributions to the successful outcomes of Veterans healthcare. 6

7. Top conditions stated by caregivers of Veterans requiring care:  80% report comorbidity  70% Mental Illness (depression, anxiety)  60% PTSD  29% Traumatic Brain Injury  28% Diabetes  20% Paralysis or Spinal Cord Injury (National Alliance for Caregiving Veterans’ Study) 7

8. Caregiver Activities and Burden of Care The conditions for which Veterans need care differ greatly from the typical care recipient population. Caregivers of Veterans are in their caregiver role for a longer period, but their burden of care is also heavier-65% are in a high burden caregiving situation compared to 31% nationally. (National Alliance for Caregiving Veterans’ Study, Nov. 2010) 8

9. Caregiver Activities Perform Personal Care-bathing, dressing, lifting a Veteran, transferring, feeding, toileting Make decisions on behalf of the Veteran Complete household chores Provide transportation Help with medication management & financial management Prepare meals 9

10. Caregiver Activities Continue… Keep Veterans safe at home Try to balance work/family responsibilities Provide support and companionship Manage challenging behaviors Provide symptom control or wound care Manage health care-appointments, interact with medical staff Provide care over years…and years..and years 10

11. Challenges of Caregiving Not knowing what to expect medically with the Veteran’s condition Not being aware of VA services that could help Not knowing how to address PTSD or mental illness Difficulties getting through the bureaucracies in order to obtain services Not knowing where to obtain financial assistance Not knowing where to turn to arrange a break from caregiving Not knowing where to obtain specialized care (National Alliance for Caregiving Veterans’ Study, Nov. 2010) Not knowing where to obtain specialized care 11

12. Impact of Caregiving Caregivers own healthy behaviors decline- exercise, eating habits and going to ones own doctor/dental appointments on schedule High emotional stress (depression, anxiety, lack of sleep) High physical strain Many stop working or take an early retirement Marital strain High financial hardship 12

13. Rewards of Caregiving Many caregivers describe their role as meaningful Many gain new skills-organization, assertiveness, awareness of their strengths Develop new support or friends through support groups or community contacts Find joy in small pleasures Learn to take care of their own needs Caregiving is a chance to give back to someone important in life 13

14. Caregivers of Veterans 14

15. Caregiver Support Coordinators At all VA medical centers Clinical experts on caregiver issues including VA and non VA resources. VAMC subject matter experts on administrative procedures to process applications, coordinate required home visits, monitor training requirements, and coordinate between clinical teams, business office, and others as required. Maintains the Caregiver Application Tracker (CAT) web tool for the VAMC and reports to VISN lead. Assist with application for new benefits Organize caregiver focused activities and services Ensure caregiver sensitivity is integrated into all programs

16. VA Medical Center Caregiver Support Coordinators: Asheville-Patricia Kitlasz Durham- Christy Knight Fayetteville- Walter Hair ( Acting CSC) Salisbury-Deborah Volkmer 16

17. Comprehensive Caregiver Support Services Allow Veterans to remain at home in the community Address specific needs of family caregivers with a menu of programs and services Promote Veteran and caregiver health and well-being Provide one location to obtain needed information Provide training and information on common conditions Reduce isolation with professional and peer support Provide respite care options to give caregivers a break Sensitize health care providers to the caregivers role 17

18. 18 Current VA Services In-Home Care Homemaker Home Health Services Skilled Home Care Home Based Primary Care Veteran Directed Home & Community Based Care Spinal Cord Injury/Disorders Bowel & Bladder Care Respite Care In Home Adult Day Health Care Institutional Placement Additional Benefits Equipment Home Adaptation Automobile Grant Transportation Assistance Increased Veteran Pension and Compensation – Aid & Attendance

19. 19 Education, Training and Support Caregiver Education and Training Pre-Discharge Care Instruction Spinal Cord Injury/Disorders Polytrauma Rehabilitation Blind Rehabilitation Family Psycho-education Caregiver Information on VA Health Website Brochures and written materials Family Support Services Support Groups Family Counseling Spiritual and Pastoral Care Family Leisure and Recreation Activities Temporary Lodging – Fisher Houses

20. 20 Eligibility for P.L. 111-163 Sections 101-104 P.L. 111-163 Section 101 Veteran Eligibility Criteria: Veteran who suffered a serious injury incurred or aggravated in the line of duty on or after 9/11/01 including traumatic brain injury and psychological trauma or other mental disorder  and Is in need of personal care services because of an inability to perform one or more activities of daily living; a need for supervision or protection based on symptoms or residuals of neurological or other impairment or injury; or such other matters as the Secretary considers appropriate General Caregiver benefits include all era Veterans

21. Eligibility Criteria Administrative:  Post 9-11/Serious Injury in the Line of Duty Clinical:  The injury renders the Veteran in need of a Family Caregiver  Clear clinical criteria consistently applied  Based on functional limitations - need for assistance 21

22. Eligibility Criteria  Focus on safety and need for supervision as well as assistance with personal care services  The Family Caregiver Program is in the best interest of the Veteran  The Veteran will receive ongoing care from a VA health care team to participate in the program  Personal care services provide to the Veteran by the Family Caregiver will not be provided regularly by another source or program 22

23. 23 Current vs. New Caregiver Benefits Current Benefits Available to Veterans of All Eras World War II Korean Vietnam Gulf War Post-9/11------------------------------------  Education and Training  Family Support Services  In-Home Care  30 Days of Respite Care  Aid and Attendance  Additional Benefits Additional Benefits under P.L. 111-163 Available to subset of post-9/11 Veterans and Servicemembers Primary Caregivers Receive:  Stipend  Health care (if not otherwise available)  Mental health services  Family Caregiver Benefits Family Caregivers Receive:  Travel, lodging and per diem for training  Respite care during training  Lodging and subsistence for Veteran’s VA appointments  Appropriate instruction and training  Counseling 23

24. All General Caregivers Receive: In person education Interactive website Telehealth training Teaching techniques, strategies, and skills for caring Counseling and other services under § 1782 Respite care under §1720B Information on all available services Family Caregivers Additionally Receive : Post 9-11 Only Appropriate instruction and training Travel, lodging, and per diem for training Lodging and subsistence for appointments Respite care during training Ongoing technical support Counseling Primary Family Caregiver Additionally Receive : Post 9-11 Only Monthly caregiver stipend Appropriate Mental health services Respite care not less than 30 days/yr Health care coverage 24

25. Application and Assessment Joint application for Veteran – family caregiver (10- 10CG) Options for application – on-line/in-person/phone Assessment of Veteran and proposed caregiver Eligibility transfers from one facility to another 25

26. Caregiver Education and Training Standardized Core Curriculum Easter Seals provides core training In-person, web-based or workbook Convenient and easily accessible Specific Training to individual Veteran needs In-home return demonstration Additional training to ensure success 26

27. On-Going Support to Veteran and Caregiver In-Home initial visit Well-being checks every 90 days Home visits are supportive and instructive Evaluation of Veteran and caregiver’s physical and emotional state Recommendations for additional training, support, equipment, etc 27

28. Primary Family Caregiver Benefits Stipend –Direct payment to primary family caregiver –Centrally funded and managed –Based on wages of a home health aide in the geographic area where the Veteran resides –Tiered based on amount and degree of personal care services provided Health Insurance –CHAMPVA Travel and Lodging –Integrate into existing programs Mental Health Services –Individual/Group psychotherapy and counseling –VA or by contract 28

29. 29

30. 30 www.caregiver.va.gov

31. How Can You Help? Help educate Servicemembers/Veterans/Caregivers Spread the word about the 1010CG applications Share the Caregiver Support Line Number Share the Website Link Refer appropriate Veterans/caregivers to their local CSC Connect Veterans/Caregivers with their local caregiver support coordinator 31

32. VA Medical Center Caregiver Support Coordinators: Asheville-Patricia Kitlasz Durham- Christy Knight Fayetteville- Walter Hair ( Acting CSC) Salisbury-Deborah Volkmer 32

33. Questions?? 33