A Proposed Model of Field Work Experience for Colleges and Universities REST (Respite Education and Support Tools) Introduction Caregiving is a national crisis, with 67.5 million individuals currently caring for a loved one (family members including elderly parents, spouses and children with disabilities and/or chronic illnesses) for at least 20 hours per week. Without this care provided at home, most of these individuals would require placement in institutions or health care facilities. The baby boomer generation is aging and they maintain a strong desire to continue to live within their communities. Many have chosen to live close to colleges and universities as these areas tend to offer culturally rich activities. As these individuals age, whether living on their own or with their families, they will require increased care and supervision. There is a growing need for respite services for these caregivers short breaks that allow these caregivers to step away and refresh and recharge themselves so they may continue providing compassionate, loving care to those who depend on them. The REST program offers a structured training and field service experience that can be integrated with college courses and service learning programs to provide respite for community caregivers who care for individuals across the lifespan. Working Caregivers Caregivers are under enormous strain as they try to juggle their responsibilities. They often feel enormous guilt when they have to step away from caregiving. U.S. businesses incur high costs in terms of decreased productivity by working caregivers with high levels of stress. A study by Metlife estimates the loss to U.S. employers to be between $17.1 and $33.6 billion per year. 1 This includes replacement costs for employees who quit due to overwhelming caregiving responsibilities, absenteeism, and workday interruptions. In an Iowa survey of parents of children with disabilities, a significant relationship was demonstrated between the severity of a child s disability and a parent s loss of work hours compare d to other employees. The lack of available respite care appeared to be a factor that interfered with parents accepting new job opportunities. 2 Caregivers Making An Economic Impact Family caregivers nationwide provide at least $306 billion in uncompensated services an amount comparable to Medicare spending in 2004 and more than twice what is spent nationwide on nursing homes and paid home care combined. 3 Family caregivers may suffer from physical, emotional and financial difficulties that impede their ability to give care now and also support their own care needs in the future. Without attention to their needs, their ability to continue providing care to their family members may well be jeopardized. Respite care is one of the services that Alzheimer s caregivers say they need most. One study found that $1.12 billion can be saved annually if respite care can delay institutionalization of a person with Alzheimer s disease by as little as a month. 4 A similar study in 1995 found that as respite use increased, the probability of nursing home placement decreased significantly. 5 Caregiver Health Significant percentages of family caregivers report physical or mental health problems due to caregiving. A recent survey of caregivers of children, adults and the disabled found that while 70% of respondents reported finding an inner strength they didn t know they had, 27% reported having more headaches, 24% reported stomach disorders, 41% more back pain, 51% sleeplessness and 61% reported more depression. 6
Three-fifths of family caregivers ages 19-64 surveyed by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non-caregivers. 7 Caregivers reported chronic conditions at nearly twice the rate of non-caregivers. A 1999 study in the Journal of the American Medical Association found that participants who were providing care for an elderly individual with a disability and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls. 8 Caregiver Support Respite has been shown to improve family functioning, improve satisfaction with life, enhance the capacity to cope with stress, and improve attitudes toward the family member with a disability. Data from an outcome based evaluation pilot study found that respite may also reduce the likelihood of divorce and help sustain marriages. 9 There was a statistically significant reduction in somatic complaints by primary caregivers of children with chronic illnesses, and a decrease in the number of hospitalization days required by children, as a direct result of respite care. The Nebraska statewide lifespan respite program conducted a statewide survey of a broad array of caregivers who had been receiving respite services, and found that one in four families with children under 21 reported that they were less likely to place their child in out-of-home care once respite services were available. In addition, 79% of respondents reported decreased stress and 58% reported decreased isolation. 10 Respite for the elderly with chronic disabilities in a study group resulted in fewer hospital admissions for acute medical care than for two other control groups who received no respite care. 11 After one year, 64% of caregivers of the elderly receiving 4 hours of respite per week reported improved physical health. Seventy-eight percent improved their emotional health, and 50% cited improvement in the care recipient as well. Forty percent said they were less likely to institutionalize the care recipient due to respite services. 12 The Lifespan Respite Act Recognizing this significant contribution and the needs faced by America s caregivers, the United States Congress passed The Lifespan Respite Care Act of 2006, which was signed into law in December of 2006. 13 Specifically, the law authorizes funds for: Development of state and local lifespan respite programs Planned or emergency respite care services Training and recruitment of respite care workers and volunteers Caregiver training. Call To Action Caregivers can now receive affordable respite (short term breaks) so that they can sustain a supportive, nurturing environment with their loved ones. Marklund, a non-profit organization, created a training program for volunteer respite workers to support caregivers. The training program, named REST (Respite Education and Support Tools), allows volunteers who want to help, but don t know how, to gain the skills needed to support caregivers in their communities. We are conducting national trainings through the country. REST is based on a train-the-trainer format that equips and prepares trainers to conduct an eight-hour volunteer respite worker training. This interactive program helps volunteers gain a clearer perspective of both caregivers and care recipients. Training volunteers to provide respite allows caregivers caring for people with special needs across the lifespan (children, adults, and seniors) to build networks of support that prevent burnout and ultimately delay long term
Appendix L placement of their loved ones. This training is applicable to those with developmental disabilities, as well as people who are aging and dealing with needs caused by strokes, dementia, etc. The REST program also offers support tools for both trainers and volunteers to continue education and address any concerns of trainers/volunteers. This unique program fosters personal networks of support utilizing resources from faith-based communities, colleges/universities, volunteer organizations and state departments. It is a customizable program that enables organizations to add content to infuse their policies, procedures, and beliefs as well as specific information for those populations they are serving. The program was designed using the principles of adult learning and is based on experiential learning. REST College/University Respite Service Learning Model The idea of pairing a large student base with a state-of-the-art training program (REST) aligns with the needs of our nations caregivers. Trained students would be able to offer caregivers routine breaks, which will ultimately lead to a decrease in stress-related conditions of these caregivers. The REST approach fosters partnerships with faith-based and volunteer organizations. Pairing with colleges and universities expands these networks of support within their communities, while decreasing reliance on state and federal funding for respite needs. The worker/volunteer registry of trained students will provide a sustainable system for both consumers and caregivers to assist them at their individual point of need. This cost effective Train-the-Trainer program is focused not only on technical skills, but also emphasizes cultural sensitivity, sensory input, behavioral interpretation, adaptive activities and communication skills. Utilizing REST as a field work experience for students in medical, nursing, sociology, human services, therapy and social work programs allows student to gain an overall perspective of the challenges of caregiving in a home environment, as opposed to medical facilities and clinics. Inclusion of this experience will result in a more empathetic approach to caregivers in more traditional treatment models and improve the quality of compassionate care they offer their patients in the future. In addition to this new perspective, students will have the chance to experience the absolute joy of connecting one-on-one with the care recipients in their home environments this is often a life changing experience for respite workers. The REST program will allow colleges and universities to actively support those in need in their commun ities providing much needed respite care, as well as letting their students learn and apply important care and interpersonal skills in a real-life environment. Respite could be offered to caregivers wishing to further their education but who do not have the needed support to attend school giving them time to attend classes or participate in on-line learning, feeling secure that their loved ones are receiving caring, skilled care. REST offers a structured course to help prepare college students to provide trained respite care. The course itself is highly interactive, allowing trainers and students to collaborate in the classroom through discussion, group exercises and peer evaluation. This program could also facilitate cooperation between disciplines measurement of the efficacy of respite care and caregiver satisfaction could be compiled by the mathematics/statistics departments or marketing for the program implemented by the communications department.
The following is a suggested model for 100+ hours of classroom/fieldwork, but it can be modified to suit your institution s academic requirements: 12 hours Minimum classroom REST training for volunteers (8 hours) plus 4 hours of added customized content specific to institution s requirements 80 hours Fieldwork respite hours (8 hours per week for 10 weeks) 3 hours Documentation of respite experience completed by student and caregiver. Includes intake process for family prior to respite care 5 hours Evaluation of experience/final project Additional On-line/live group discussions during 10 weeks of respite care, CPR and First Aid Training The classroom instructors would attend a 2-day REST training to become a registered REST Trainer, which prepares them to then conduct the 8-hour student volunteer training. This Trainer course includes key concepts and exercises and is geared toward facilitating adult learning. In addition, your institution could opt to send personnel through the Master Trainer course, which would allow them to then teach both the Train-the-Trainer course, as well as the 8-hour volunteer student course. Additional Statistics/Studies Regarding Respite In a 2004 survey conducted by the Oklahoma Respite Resource Network, 88% of caregivers agreed that respite allowed their loved ones to stay at home, 98% of caregivers stated that respite made them a better caregiver, 98% of caregivers said respite increased their ability to provide a less stressful home environment, and 79% of caregivers said respite contributed to the stability of their marriage. 14 Data from an ongoing research project at Oklahoma State University on the effects of respite care found that the number of hospitalizations, as well as the number of medical claims, decreased as the number of respite care days increased. 15 A Massachusetts social services program designed to provide cost-effective family-centered respite care for children with complex medical needs found that for families participating for more than one year, the number of hospitalizations decreased by 75%, physician visit decreased by 64%, and antibiotics used decreased by 71%. 16 An evaluation of the Iowa Respite Child Care Project for families parenting a child with developmental disabilities found that when respite care is used by the families, there is a statistically significant decrease in foster care placement. 17 A 1999 study of Vermont s then 10-year-old respite program for families with children or adolescents with serious emotional disturbance found that participating families experience fewer out-of-home placements that nonusers and were more optimistic about their future capabilities to take care of their children. 18 Caregivers of relatives with dementia who use adult day care experience lower levels of caregiving related stress and better psychological well-being than a control group not using this service. These differences were found in both short-term (3 months) and long-term (12-month) users. 19 In a 1989 U.S. national survey of families of a child with a disability, 74% reported that respite had made a significant difference in their ability to provide respite care at home and 35% of the respite users indicated that without respite services they would have considered out-of-home placement for their family member. 20
Appendix L 1 The Metlife Caregiving Cost Study: Productivity Losses to U.S. Business. Metropolitan Life (MetLife) Mature Market Institute. 2006 2 Respite care needs of families with children with developmental disabilities. Focus on Autism and Other Developmental Disa bilities; 14; 96-109. Abelson, A.G. 1999 3 Arno, Peter S., "Economic Value of Informal Caregiving," presented at the Care Coordination and the Caregiving Forum, Dept. o f Veterans Affairs, NIH, Bethesda, MD, January 25-27, 2006 4 Leon, J., Cheng, C. K., & Neumann, P. J. (1998). Alzheimer's disease care: costs and potential savings. Health Affairs, 17(6), 206-216. 5 Kosloski, K., & Montgomery, R. J. (1995). The impact of respite use on nursing home placement. Gerontologist, 35(1), 67-74. 6 National Family Caregivers Association. Caregiving statistics: Statistics on family caregivers and family caregiving. 2011. Retrieved July 18, 2011, from http://www.nfcacares.org/who_are_family_caregivers/care_giving_statstics.cfm. 7 A Look at Working-Age Caregivers' Roles, Health Concerns, and Need for Support, Alice Ho, Sara R. Collins, Ph.D., Karen Davis, Ph.D., and Michelle M. Doty, Ph.D., The Commonwealth Fund, August 2005. 8 Schulz, R., & Beach, S. (1999). Caregiving as a risk for mortality. Journal of the American Med ical Association, 282, 2215-2219. 9 Wade, C., Kirk, R., Edgar, M., & Baker, L. (2003). Outcome Evaluation: Phase II Results. Chapel Hill, NC: ARCH National Resou rce Center for Respite and Crisis Care. 10 Jackson, B. Munroe-Meyer Institute, University of NE Medical Center. January 2001. 11 Chang, J.I., Karuza, J., Katz, P.R., & Klingensmith, K. (1992). Patient outcomes in hospital-based respite: A study of potential risks and benefits. Journal of the American Board of Family Practice, 5, 475-481. 12 Theis, S.L., Moss, J.H., Pearson, M.A. (1994). Respite for caregivers: An evaluation study. Journal of Community Health Nursing, 11 (1). 31-44. 13 H.R. 3248--109th Congress: Lifespan Respite Care Act of 2006. (2005). In www.govtrack.us. Retrieved February 26, 2014, from http://www.govtrack.us/congress/bills/109/hr3248 14 U.S. Senate. Finance Committee. Strategies to Improve Access to Medicaid Home and Community Based Services. S. Hrg. 108-637; Date: April 7, 2004). Text in: Government Printing Office; Accessed: February 28, 2014. 15 Oklahoma. (1999). Annual Report: FY 1998 Maternal and Child Health Block Grant. 16 Mausner, S. 1995 Social work in health care. Families helping families: an innovative approach to the provision of respite care for families of children with complex medical needs. Vol./is.21/1(95-106), 0098-1389. 1995. Source Medline from PubMed, Accessed February 28, 2014. 17 Cowen, P. & Reed, D. (2002). Effects of respite care for children with developmental disabilities: Evaluation of an intervention for at risk families. Public Health Nursing, 19(4), 272-83 18 Bruns, E.J. & Burchard, J.D. (2000). Impact of respite care services for families with children experienci ng emotional and behavioral problems and their families. Children s Services: Public Policy, Research and Practice, 3, 39-61. 19 Zarit, S. H., Stephens, M. A., Townsend, A., & Greene, R. (1998). Stress Reduction for Family Caregivers: Effects of Adult Da y Care Use. Journal of Gerontology: Social Services, 53(5), S267-S277. 20 Knoll, J. & Bedford, S. (1989). Respite services: A national survey of parents' experience. Exceptional Parent, 19 (4), 34 37.