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Family Support Promising Practices Identification and Assessment of an Initial Set of Promising Practices Joe Caldwell National Council on Aging Katie Arnold & Randa Abdelrahim University of Illinois at Chicago November 2017

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Page 1: Family Support Promising Practices - FSRTCfsrtc.ahslabs.uic.edu/wp-content/uploads/sites/9/2017/11/Family... · universally agreed upon definition or criteria for promising practices

Family Support Promising Practices

Identification and Assessment of an Initial Set of Promising Practices

Joe Caldwell National Council on Aging

Katie Arnold & Randa Abdelrahim University of Illinois at Chicago

November 2017

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Table of Content

LIST OF TABLES & FIGURES ............................................................................................................. 3

FAMILY SUPPORT PROMISING PRACTICES .............................................................................. 4

OVERVIEW ............................................................................................................................................... 4 ENVIRONMENTAL SCAN ......................................................................................................................... 4 EXPERT WORKGROUP ............................................................................................................................. 8 CRITERIA FOR ASSESSING EVIDENCE OF OUTCOMES ............................................................................. 8 CONCLUSION ........................................................................................................................................ 10 REFERENCES .......................................................................................................................................... 13

APPENDIX: PROMISING PRACTICES BY DOMAIN ................................................................ 14

CONNECTIONS & PARTNERSHIPS (EMOTIONAL SUPPORTS) ............................................................... 15

Building Better Caregivers ........................................................................................................... 16 By Caring for Myself I Can Care for Others .............................................................................. 18 New York University Caregiver Intervention ........................................................................... 20 Parent to Parent ............................................................................................................................. 23 Powerful Tools for Caregivers ..................................................................................................... 25 Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II .................................... 28 Savvy Caregiver ............................................................................................................................. 31 Sibshops ........................................................................................................................................... 34 Stress-Busting Program for Family Caregivers ........................................................................ 36

DISCOVERY & NAVIGATION (INFORMATION AND TRAINING SUPPORTS) .......................................... 38

Care of Persons with Dementia in their Environments (COPE) ............................................ 39 Caregiver Coach Program ............................................................................................................. 41 Center for Future Planning ........................................................................................................... 43 Family to Family Health Information Centers ......................................................................... 45 National Alliance for Mental Illness (NAMI) Family-to-Family ......................................... 47 Parent Training and Information Centers ................................................................................. 49 Partners in Policymaking ............................................................................................................. 51

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Positive Parenting Program ........................................................................................................ 54 Sibling Policy Forums ................................................................................................................... 56 Skills2Care ...................................................................................................................................... 58 Tailored Caregiver Assessment and Referral Support System (TCARE) .............................. 62 The Conversation Project ............................................................................................................. 65 The Future is Now .......................................................................................................................... 67

GOODS & SERVICES (INSTRUMENTAL SUPPORTS) ............................................................................... 69

Delaware Lifespan Respite Care Network ................................................................................ 70 Illinois’ Home-Based Support Services Program ..................................................................... 71 Interfaith Care-Partners Care Team® program ........................................................................ 73 Mobile Day Care Program............................................................................................................ 74 The New Hampshire Family Caregiver Support Program (NHECSP) ................................... 76 VA Program of Comprehensive Assistance for Family Caregivers ........................................ 78

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List of Tables & Figures TABLE I: SOURCES REVIEWED FOR PROMISING AND EVIDENCE-BASED PRACTICES ......................................................... 6

TABLE II: WINGSPREAD FAMILY SUPPORT FRAMEWORK ..................................................................................................... 7

TABLE III: ADMINISTRATION FOR COMMUNITY LIVING EVIDENCE-BASED CRITERIA ..................................................... 8

FIGURE 1: CDC THEORETICAL FRAMEWORK FOR EVIDENCE-BASED DECISION MAKING ............................................... 9

TABLE IV: CONTINUUM OF EVIDENCE DEVELOPED BY ARCH NATIONAL RESPITE NETWORK..................................... 11

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Family Support Promising Practices Identification and Assessment of an Initial Set of

Promising Practices

Overview

The purpose of this project was to identify and evaluate promising practices in family support across the lifespan. Identification of promising practices can assist with scaling up effective practices across local settings and states. It can also help identify needs for research to improve the evidence of outcomes or translate knowledge of effective approaches and models across different population, if appropriate.

We conducted a broad-based environmental scan, consisting of nominations from the

aging and disability communities and a literature review. A family support expert workgroup was convened to assess each practice, prioritize which ones to highlight, and provide additional guidance on describing practices. Based on this process, we developed summaries for 28 practices arranged in three domains: Connections & Partnerships (Emotional Supports); Discovery & Navigation (Information and Training Supports); Goods & Services (Instrumental Supports).

Environmental Scan

An environmental scan was conducted to identify practices. A “Call for Information” was widely disseminated between April and August of 2015 across the aging and disability communities to solicit nominations for promising practices in family support. The Family Support Research and Training Center (FSRTC) advisory committee –which consists of aging, disability, and caregiver organizations –assisted with dissemination. In addition, dissemination occurred through the Disability and Aging Collaboration, which consists of over 40 national aging and disability organizations. Finally, the National Council on Aging (NCOA) distributed the “Call for Information” to a list of over 5,000 state-based aging and disability policy experts in home and community-based services. This list consists of leaders of local and state consumer organizations (e.g. Centers for Independent Living, Area Agencies on Aging, Developmental Disabilities Councils, Protection and Advocacy organizations, University Centers for Excellence in Developmental Disabilities, and state and local affiliates of AARP, Easterseals, The Arc, United Spinal Association, Alzheimer’s Association), state government staff of aging and disability services agencies, providers, and managed care health plans.

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An electronic survey was developed to capture basic information about nominated

practices. The survey included the following: name of practice; level (local, state, national); caregiver population served; types of services and supports provided; description of program; evidence of outcomes; contacts for additional information. As an alternative to completing the online survey, contact information was provided for project staff for individuals to email or call to nominate a practice. We received 101 nominations from the “Call for Information.” However, some nominations were of agencies that provide a wide variety of family support services. It was unclear whether a specific practice was being nominated. Project staff followed up with contacts to gain additional information. We then assessed each nomination to determine: 1) Is a specific practice being nominated; and 2) In the case of a program with multiple practices, is there an overarching theory or structure that could serve as a model practice? Of the 101 responses, 52 met this criteria for inclusion.

In addition to the “Call for Information” a literature and internet search was conducted

by project staff. We identified and reviewed previous efforts to identify promising and evidence-based practices highlighted in Table I. We added an additional 15 practices through the literature review, bringing the total list of nominated practices that met the inclusion criteria to 67. We prioritized adding practices currently being implemented in the community, versus research pilots that have not been replicated. The majority of interventions we found in the literature focused on caregivers of individuals with dementia and Alzheimer’s. While we included many of these interventions, we sought balance with interventions for other caregiver populations.

Practices were grouped into three family support domains based on an initial framework

adopted at the 2011 Wingspread Conference on Developing a Family Support Agenda (Hecht, Reynolds, Agosta, & Ginley, 2011). The framework has also been used by the National Community of Practice on Supporting Families of Individuals with Intellectual and Developmental Disabilities (http://supportstofamilies.org/). As highlighted in Table II, the framework consists of three domains: Connections & Partnerships (Emotional Supports); Discovery & Navigation (Information and Training Supports); Goods & Services (Instrumental Supports).

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TABLE I: Sources Reviewed for Promising and Evidence-Based Practices

Source Description

Heller, Gibbons, & Fisher (2015)

Literature review of family support interventions in aging journals and developmental disabilities journals. Identified 69 peer-reviewed articles of family support interventions.

The National Academies of Sciences, Engineering, and Medicine (2016)

Report from a consensus study that included family support interventions for caregivers of older adults. Reviewed 8 evidence-based caregiver interventions currently being implemented. Available at: http://www.nationalacademies.org/hmd/Activities/Aging/FamilyCaregivingforOlderAdults.aspx

The US Administration on Aging (2003)

The US Administration on Aging (2003) report highlight 11 projects of national significance and 28 innovations programs. Available at: http://www.cmcoa.org/downloads/caregiverpromisingpractices.pdf

ACL Evidence-Based Programs for Title III-D of Older Americans Act

List of evidence-based health promotion/disease prevention programs. Contains 5 programs that focus on family caregivers. Available at: https://www.ncoa.org/wp-content/uploads/Title-IIID-Highest-Tier-Evidence_Feb.-2017-1.pdf

ACL and AoA Alzheimer’s Disease Supportive Services Program (ADSSP)

The ADSSP program funded translation of 10 evidence-based interventions by community-based organizations (Link, 2015). More information at: https://nadrc.acl.gov/

Rosalynn Carter Institute for Caregiving Database

Databased of 71 family caregivers interventions arranged in two levels by evidence. Available at: http://www.rosalynncarter.org/caregiver_intervention_database/

The Family Caregiver Alliance Repository

List of 26 evidence-based practices, 13 emerging practices, and 17 model programs. Available at: https://www.caregiver.org/program-development

SAMSHA Registry of Evidence-Based Programs and Practices

Registry of over 466 evidence-based programs. Available at: https://www.samhsa.gov/capt/tools-learning-resources/national-registry-evidence-based-programs

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TABLE II: Wingspread Family Support Framework

Connections & Partnerships (Emotional Supports)

Examples:

¾ Parent-to-Parent Support ¾ Self-Advocacy Organizations ¾ Family Organizations ¾ Sib-shops ¾ Support Groups ¾ Professional Counseling ¾ Non-disability community support

Discovery & Navigation (Information and Training Supports)

Examples:

¾ Information on disability ¾ Information about options and possibilities for employment, community living,

relationships, recreation ¾ Knowledge about best practices and values ¾ Skills to navigate and access services ¾ Ability to advocate for services and policy change

Goods & Services (Instrumental Supports)

Examples:

¾ Self/Family-Directed services ¾ Transportation ¾ Respite/Childcare ¾ Adaptive equipment ¾ Home modifications ¾ Financial assistance ¾ Cash Subsidies ¾ Short/Long term planning ¾ Caregiver Supports and training

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Expert Workgroup An expert workgroup was organized consisting of 10 members, including researchers,

policymakers, family caregivers, and individuals with disabilities. The workgroup met via video conference and phone three times between April and June 2017. On each call workgroup members considered one domain (Emotional Supports, Information and Training Supports, and Instrumental Supports). Prior to the call, workgroup members were provided with descriptions of practices in that domain. They were asked to complete an internal survey rating each practice on a 4-point Likert scale (high, medium, low, or none) based on the following three criteria: 1) the evidence and outcomes, 2) potential to replicate in other setting, and 3) potential to replicate with different populations. Workgroup members were also asked to prioritize the top five practices they would select to highlight within that domain.

Criteria for Assessing Evidence of Outcomes

The expert workgroup provided additional guidance on assessing the evidence of outcomes. While the project was charged with identifying “promising” practices, there is no universally agreed upon definition or criteria for promising practices. There is greater agreement around criteria for “evidence-based” practices. Most approaches have used criteria similar to that adopted by ACL and AoA to assess Title III-D Older American Act programs (see Table III).

TABLE III: Administration for Community Living Evidence-Based Criteria

¾ Demonstrated through evaluation to be effective for improving the health and wellbeing or

reducing disease, disability and/or injury among older adults; and

¾ Proven effective with older adult population, using Experimental or Quasi-Experimental Design; and

¾ Research results published in a peer-review journal; and

¾ Fully translated in one or more community site(s); and

¾ Includes developed dissemination products that are available to the public.

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However, as noted by the FSFTC advisory committee and our expert workgroup, this

criteria works well for assessing discrete interventions. However, it does not apply well for assessing broader approaches and policies that have sought to support families. Furthermore, there are long-standing family support practices in the field, particularly within the disability community. While there is a great deal of experiential knowledge and support for benefit of these programs, little formal evaluation or research has been conducted. Therefore, we sought to assess evidence on a broader theoretical framework.

The CDC Division of Violence Prevention developed a useful theoretical framework for

evidence-based decision making (See Figure 1). The framework consists of three overlapping dimensions: 1) Best Available Research Evidence; 2) Experiential Evidence; and 3) Contextual Evidence. Best available research evidence enables researchers, practitioners, and policy-makers to determine whether or not a program, practice, or policy is actually achieving the outcomes it aims to and in the way it intends. The more rigorous a study’s research design, the more compelling the evidence is that the strategy is effective. Experiential evidence is based on the professional insight, understanding, skill, and expertise that is accumulated over time and is often referred to as intuitive or tacit knowledge. Contextual evidence is based on factors that address whether a strategy is useful, feasible to implement, and accepted by a particular community. These three facets of evidence, while distinct, overlap and are all important and necessary aspects for evidence-based decisions.

FIGURE 1: CDC Theoretical Framework for Evidence-Based Decision Making

x x x

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In order to asses “best available research evidence,” we adopted a continuum developed by the ARCH National Respite Network (Kirk & Kagan, 2015). This criteria was developed by an expert panel on respite research. It consists of four levels highlighted in Table IV. We adopted this criteria due to its direct relevance to assessing family support practices. While we assessed best available research evidence on these four levels, we also acknowledged the other dimensions of the CDC evidence-based decision-making framework (experiential and contextual evidence). Criteria for these dimensions is less specified. However, the CDC framework provides some direction, such as the extent of implementation in the real-world setting, implementation fidelity across sites, implementation with various populations and communities. We noted these factors in the practice descriptions when discussing evidence of outcomes.

Conclusion

The promising practices in family support identified in this report provide an initial set of practices that can be focused on for scaling up as well as translation to additional populations. The Appendix lists the practices and they are searchable on the FSRTC website for organizations to learn from and glean ideas for developing family support practices at the state and local level.

A number of the promising practices identified have strong evidence to support

outcomes and could be scaled up further to reach more caregivers. Currently, many of these evidence-based practices are not being widely implemented. Funding sources, such as Medicaid, could be better used to pay for scaling up practices. States have flexibility within various HCBS authorities to implement these programs. CMS could provide guidance and technical assistance to make states more aware of these programs and ways to bill Medicaid. In addition, health care entities engaged in managed care, duals integration, accountable care organizations, and other payment and delivery initiatives could assist with scaling up these successful initiatives. Practices that met the highest level of evidence included: Powerful Tools for Caregivers, NAMI Family-to-Family, New York University Caregiver Intervention, REACH II, Stress Busting Program for Family Caregivers, Savvy Caregiver, Skills2Care, COPE, TCARE, and Illinois Home Based Support Services Program. In addition, “evidence-informed” practices included: The Future is Now, Parent to Parent, and By Caring for Myself I Can Care for Others. Positive outcomes are associated with these interventions. They could be scaled up along with additional research and implementation fidelity.

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TABLE IV: Continuum of Evidence Developed by ARCH National Respite Network

Level I: New Ideas, Novel Approaches (single site, single program)

Qualitative: Interviews, surveys, consumer satisfaction, case studies, observational studies. Quantitative: Administrative data (e.g., service utilization; model compliance; incident analysis such as placement, maltreatment); standardized instruments (e.g., depression inventories, stress inventories, quality of life inventories).

Level II: Emerging Practices and Models (two or more pilot study sites)

Qualitative: Interviews, surveys, consumer satisfaction, case studies, observational studies. Quantitative: Administrative data (e.g., service utilization; model compliance; incident analysis such as placement, maltreatment); standardized instruments (e.g., depression inventories, stress inventories, quality of life inventories); cost-effectiveness analysis. Samples of convenience, possible comparison to unserved caregivers/care receivers.

Level III: Evidence-Informed Practices (one or more sites, high fidelity implementation, comparison groups, quasi-experimental designs)

Qualitative: Interviews, surveys, consumer satisfaction, case studies, observational studies, funder surveys, community surveys, fidelity checklist. Quantitative: Administrative data (e.g., service utilization; model compliance; incident analysis such as placement, maltreatment); quantitative outcome documentation such as standardized instruments (e.g., depression inventories, stress inventories, quality of life inventories); multivariate measurement systems (outcomes for both the caregiver and care receiver across a broader spectrum, including psychological, health, biomarkers if available); larger samples, comparison groups, matched if possible, multivariate analyses, advanced statistical modeling.

Level IV: Evidence-Based Practices (one or more sites, high fidelity implementation, control groups, experimental or quasi-experimental designs, possibly randomized controlled trials; if multiple sites, focus on possible intervening variables and account for their variance)

Qualitative: Surveys (e.g., consumer satisfaction, funder surveys, community surveys), case studies, fidelity checklist. Quantitative: Administrative data (e.g., service utilization; model compliance; incident analysis such as placement, maltreatment); quantitative outcome documentation such as standardized instruments (e.g., depression inventories, stress inventories, quality of life inventories); multivariate measurement systems (outcomes for both the caregiver and care receiver across a broader spectrum, including psychological, health, biomarkers if available); larger samples, randomized or matched comparison groups, multivariate analyses, advanced statistical modeling.

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Some of the promising practices have potential to be adapted and applied to new

caregiver populations. For example, a version of Powerful Tools for Caregivers is being piloted for family caregivers of children with special healthcare needs. Building Better Caregivers has been primarily tested and implemented with caregivers of younger veterans with disabilities. However, the online platform and content could be modified and tested with other caregiver population. Interventions developed for individuals with Alzheimer’s and dementia might be modified for other caregivers, particularly of individuals with behavioral issues. Peer-led support interventions common in the intellectual and developmental disabilities community (such as Parent to Parent, Family to Family Health Information centers, and Partners in Policymaking) might serve as models for interventions in the aging community. By Caring for Myself I Can Care for Others could serve as a model for culturally competent translations. Adaptations would require additional pilot testing and research to make sure knowledge is translated effectively for other populations.

Many of the practices identified would benefit from additional research to clearly show the effectiveness to support families. There are some practices that are widely used and thought to have positive outcomes, but there is little rigorous research about them –for example, Partners in Policymaking and Sibshops. Other practices are new and innovative but have not been tested or implemented widely. This initial set of promising practices provides a starting point for effective family support practices. Many family support practices could be scaled up to reach more caregivers, translated to new populations in a culturally relevant manner, and researched more to show the effectiveness for supporting family caregivers.

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References CDC Injury Prevention & Control: Division of Violence Prevention (no date). Understanding

Evidence. Available at: https://vetoviolence.cdc.gov/apps/evidence/ Hecht, E., Reynolds, M., Agosta, J., & McGinley, K. (2011). Building an agenda for supporting

families with a member with intellectual and developmental disabilities. Report of the Wingspread Conference on Building a Family Support Agenda, March 6-8, 2011. Racine, Wisconsin: Johnson Foundation.

Heller, T., Gibbons H.M., & Fisher, D. (2015). Caregiving and family support interventions:

Crossing networks of aging and developmental disabilities. Intellectual and Developmental

Disabilities, 53(5), 329-45. Kirk, R.S. & Kagan, J. (October, 2015). A research agenda for respite care: Deliberations of an

expert panel of researchers, advocates, and funders. ARCH National Respite Network and Resource Center.

Link, G. (2015). The Administration for Community Living: Programs and initiatives providing

family caregiver support. Generations, 39(4), 57-63. National Academies of Sciences, Engineering, and Medicine (2016). Families caring for an aging

America. Washington, DC: The National Academies Press. Available at: http://www.nationalacademies.org/hmd/Activities/Aging/FamilyCaregivingforOlderAdults.aspx

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APPENDIX Promising Practices by Domain

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Connections & Partnerships (Emotional Supports)

¾ Building Better Caregivers

¾ By Caring for Myself I Can Care for Others

¾ New York University Caregiver Intervention

¾ Parent to Parent

¾ Powerful Tools for Caregivers

¾ Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II

¾ Savvy Caregiver

¾ Sibshops

¾ Stress-Busting Program for Family Caregivers

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Building Better Caregivers Primary Practice: Online psychoeducational training workshop Description: Building Better Caregiver (BBC) is a 6-week, internet-based workshop for 20 to 30 caregivers aimed at enhancing caregiving skills. It is offered on a dedicated website. The workshop does not require “real-time” attendance and uses discussion boards for social networking. Each workshop is moderated by a pair of trained peer or professional facilitators with caregiving experience. Training includes taking the BBC workshop, attending four webinars, and following a detailed protocol. Facilitators remind participants to log on, model action planning and problem-solving, offer encouragement, and post to the bulletin boards. They also monitor the daily posts for safety and report problems. Each week participants, using screen names, are asked to logon at least 3 times. Weekly activities include reading and interacting with the week’s lessons, and posting. There are six components to each workshop: the Learning Center (interactive, didactic material), the Discussion Center (4 bulletin boards: action planning, celebrations, difficult emotions and problem solving), My Tools (individualized tools, including problem behavior diaries and exercise logs), a Post Office (where participants communicate one on one), Resources (web links and documents), and Help (a tutorial and links to facilitators and project staff). New content is added each week in the Learning Center, while previous content remained available. Links provided access to pages with information on specific optional topics, such as TBI, PTSD, and Alzheimer’s. The Learning Center also populated the Discussion Center with new discussion questions. Target Population(s): Caregivers of veterans Implementation: Building Better Caregivers is currently offered through the Department of Veterans Affairs. Caregivers for someone with dementia, memory problems, post-traumatic stress disorder, a serious brain injury, or any other serious injury or illness can join a workshop. To participate in the online VA Building Better Caregivers™ program, the caregiver or the care recipient must be enrolled in VA Healthcare. Over 5,000 referrals have been made, resulting in 2,654 caregivers being assigned to workshops; 75% of caregivers completed a workshop.

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Goals/Objectives: The workshop addresses specific needs of caregivers who care for someone with dementia, memory problems, traumatic brain injury, post-traumatic stress disorder (PTSD), or any other serious injury or illness. The program aims to enhance caregiver skills and knowledge, reduce caregiver stress and depression, and increase their overall well-being. Evidence of Outcomes: Emerging Practice/Model

Only one pilot study has been conducted on the program, without a control group. However, there is support for outcomes. The program is being widely implemented with a high level of high fidelity. Lorig, Thompson-Gallagher, Traylor, Ritter, Laurent, Plant, & Hahn (2012) conducted a pilot study with 60 caregivers of veterans at three site using pre-test and 3-month follow-up surveys. Caregivers showed significant reductions in caregiver burden, depression, pain, and stress. Caregivers showed improvement in self-efficacy and two exercise measures that were conducted. Additional Information: National Council on Aging. (2017). Building Better Caregivers™. Available at:

https://www.ncoa.org/healthy-aging/chronic-disease/building-better-caregivers/ References: Dupke, N., Plant, K., & Kosteas, J. (2016). Supporting caregivers of veterans online: A

partnership of the National Council on Aging and VA. Federal Practitioner, 33(1), 41-46. Lorig, K., Thompson-Gallagher, D., Traylor, L., Ritter, P. L., Laurent, D. D., Plant, K., Hahn, T.

J. (2012). Building better caregivers: A pilot online support workshop for family caregivers of cognitive impaired adults. Journal of Applied Gerontology, 423-437.

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By Caring for Myself I Can Care for Others Primary Practice: Health education intervention for Latina mothers with peer health promoters (promotoras) Description: "By caring for myself..." is a culturally tailored intervention that aims to deliver health education to Latina caretakers of children and adults with intellectual and developmental disabilities. Latina mothers of children with IDD face more chronic health conditions compared to Latina mothers who do not have these caregiving responsibilities. This intervention utilizes the “promotores de salud model”, that is, engaging peer leaders who are indigenous to the target community and can serve a bridge between the target community and the service system. This is coupled with Bandura's self-efficacy theory. Two promotoras (peer health promoters who themselves are mothers of children with IDD) hold 6 two-hour workshops where up to 10 parents attend. These workshops elaborate on following topics: the importance of self-care, health care utilization and navigation, well-being activities, nutrition, physical activity, depression and stress, including others and social support, and sustaining personal growth Promotoras implement performance accomplishment, vicarious experiences, verbal persuasion and emotional states in the educational sessions in order to develop self-efficacy throughout the health education. Target Population(s): Caregivers of children and adolescents with disabilities or special health care needs, caregivers of adults with intellectual and developmental disabilities. Implementation: The program has been implemented primarily in Chicago with funding from the Midwest Royal Center for health Promotion and Translation and Illinois Department of Public Health. Goals/Objectives: Improve health behaviors of Latina mothers of youths and adults with intellectual and developmental disabilities. Evidence of Outcomes: Evidence-Informed Practice

Magaña, Li, Miranda, & Sayu (2015) conducted an evaluation of the program with 90 caregivers using an experimental design with a randomed control group. Intervention participants showed

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greater increases between pre- and post-test in health-related self-efficacy; self-care, nutrition and overall health behaviors. Both groups reported decreases in depressive symptoms and caregiver burden. References: Magaña, S., Li, H., Miranda, E., & Sayu, R. P. (2015). Improving health behaviours of Latina

mothers of youths and adults with intellectual and developmental disabilities. Journal of

Intellectual Disability Research, 59(5), 397-410.

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New York University Caregiver Intervention Primary Practice: Counseling and Support Group Intervention led by Professionals Description: The NYUCI includes six sessions of individual and family counseling, support group participation, and additional counseling by telephone for the primary caregiver and family members. Each caregiver receives all components of the intervention, and is provided with ad hoc phone/email support for an indefinite period of time. A detailed intake assessment and interview, as well as periodic follow-ups, guide the counseling. The first component consists of two individual andfour family counseling sessions that include relatives suggested by the caregiver (in the original NYUCI, the person with dementia was not included, although in some implementations this is no longer the case). The content of these sessions is determined by a needs assessment of each caregiver and other participating family members (e.g., learning techniques for management of behavioral issues, and promoting communication among family members). Counselors also provided education about AD and community resources. The second component of the intervention is participation in a support group to provide the caregiver with continuous emotional support and education. The third component of the program is “ad hoc” counseling—the continuous availability of counselors to caregivers and families to help them deal with crises and with the changing nature and severity of their relatives’ symptoms over the course of the disease. The emergence of new psychiatric and behavioral symptoms, or difficulties with ADLs, often precipitated ad hoc calls from caregivers. Ad hoc counseling makes it possible for caregivers and families to determine the amount of contact they have with the counselors beyond the scheduled structured sessions. Target Population: Caregivers of individuals with dementia Goals/Objectives: NYUCI was designed to improve caregiving skills, mobilize the support of naturally existing family networks, and provide counseling as needed over the entire course of caring for a spouse with dementia.

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Evidence of Outcomes: Evidence-Based Practice

A longitudinal randomized control study was implement starting 1987 and lasted 9.5 years. During that time 206 caregivers received the intervention and reported a decrease in caregiver depression, a decrease in negative caregiver appraisals of behavior problems in the person with dementia, and delays in nursing home placement of the person with dementia. Patients whose spouses received the intervention experienced a 28.3% reduction in the rate of nursing home placement. A second study was conducted in the US, England and Australia and had 154 caregivers; half of them randomly received the NYUCI. Similar positive outcomes were also reported by participants of this study. Community translations of the intervention in Minnesota, Vermont and Medicaid Managed Care in NYC have served more than 100 caregivers and new community sites around the country are currently enrolling additional caregivers. In the original NYUCI, each counselor was responsible for more than 50 families. An independent evaluation of the first community translation in Minnesota, which began in 2007, estimated that the direct service costs per caregiver would be between $850 and $1430 with an average cost of $1,226. Additional Information: Description of NYU Caregiver Counseling and Support Intervention from Rosalynn Carter Institute

for Caregiving: http://www.rosalynncarter.org/caregiver_intervention_database/dimentia/nyu_caregiver_counseling_and_support_intervention/

References: Mittelman, M., Ferris, S., Shulman, E., Steinberg, G., Ambinder, A., Mackell, J., & Cohen, J.

(1995). A comprehensive support program: Effect on depression in spouse-caregivers of AD patients. The Gerontologist, 35, 792-802.

Mittelman, M.S., Ferris, S.H., Shulman, E., Steinberg, G. & Levin, B. (1996). A family intervention

to delay nursing home placement of patients with Alzheimer disease. Journal of the

American Medical Association, 276, 1725-1731. Mittelman, M.S., (2002). Family caregiving for people with Alzheimer’s disease: Results of the

NYU spouse caregiver intervention study. Generations, 26 (1).

Mittelman, M.S. (2003). Psychosocial intervention for dementia caregivers: What can it

accomplish? International Psychogeriatrics, 15, Suppl. 1, 243-249.

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Mittelman, M.S., Roth, D.L., Haley, W.E. & Zarit, S.H. (2004). Effects of a caregiver intervention

on negative caregiver appraisals of behavior problems in patients with Alzheimer’s disease: Results of a randomized trial. Journals of Gerontology, Psychological Sciences,

59B(1), P27-P34. Mittelman, M.S., Roth, D.L., Coon D.W. and Haley, W.E. (2004). Sustained benefit of supportive

intervention for depressive symptoms in Alzheimer’s caregivers. American Journal of

Psychiatry, 161(5), 850-856. Jang,Y., Clay, O.J., Roth, D.L., Haley, W.E. &. Mittelman, M.S. (2004). Neuroticism and

longitudinal change in caregiver depression: Impact of a spouse-caregiver intervention program. The Gerontologist, 44, 311-317.

Roth, D.R., Mittelman, M.S., Clay, O.J., Madan, A., Haley, W.E. (2005). Changes in social support

as mediators of the impact of a psychosocial intervention for spouse caregivers of persons with Alzheimer’s disease. Psychology and Aging, 20(4), 634-644.

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Parent to Parent Primary Practice: Matching of parents with experience, trained support parents of children with special health care needs. Description: Parent to Parent programs offer parent to parent support as a core resource for families with children who have a special health care needs, disabilities, or mental health issue. Through a one to one "match," experienced support parents provide emotional support to families and assist them in finding information and resources. Parent to Parent programs are committed to listening and learning from families and developing an array of services and supports in response to family identified needs. Parent to Parent of the United States was created in 2003 and became a non for profit organization 501(c)(3) in 2006. Parent to Parent USA has identified and connected all statewide Parent to Parent programs nationally and created an Alliance amongst all family support programs in the country. The Parent to Parent network is a national resource for families. Target Population(s): Caregivers who have children or adolescents with a special health need, mental health issue or disability Implementation: Nationally, Parent to Parent has received funding from the Robert Wood Johnson Foundation, Maternal and Child Health, the Beach Center on Disability and Family Voices. Goals/Objectives: To ensure that families nation-wide whose children have special needs access services related to their needs Evidence of Outcomes: Evidence-Informed Practice

An evaluation of Parent to Parent programs was conducted in five states using an experimental design. While there is support for the model, since it is grassroots driven there is considerable variability across programs. The national organization, Parent to Parent USA, has provided greater connection across programs.

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Singer, Marquis, Powers, Blanchard, DiVenere, & Santelli (1999) evaluated Parent to Parent mentoring programs in 5 states. Parents were assigned to either a treatment group or a waiting list comparison group. The treatment group participated in Parent to Parent for 2 months. Groups were compared on measures of coping, attitude, and progress on addressing problems. Analyses showed statistically significant positive gains for the parents in the treatment group. Changes on a measure of empowerment were not statistically significant. A qualitative study based on consumer satisfaction interviews with parents provided insight into what makes the Parent to Parent program work. Additional Information: Parent to Parent USA. (2017). Parent to Parent USA endorsed practices for matching and follow-up

support. Available at: http://www.p2pusa.org/wp-content/uploads/2016/01/Endorsed-Practices-for-Matching-and-Follow-up.pdf

Parent to Parent USA. (2017). Parent to Parent USA guidance for recruiting and training support

parents. Available at: http://www.p2pusa.org/wp-content/uploads/2017/03/Support-Parents.Recruiting-and-Training.2.07.17.pdf

Parent to Parent USA. (2017). Parent to Parent USA endorsed practices for parent to parent support.

Available at: http://www.p2pusa.org/wp-content/uploads/2016/01/Endorsed-Practices-for-Matching-and-Follow-up.pdf

References: Singer, G., Marquis, J., Powers, L., Blanchard, L., DiVenere, N., & Santelli, B. (1999). A Multi-site

evaluation of parent to parent programs for parents of children with disabilities. Journal

of Early Intervention, 22(3), 217-229.

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Powerful Tools for Caregivers Primary Practice: In-person psychoeducational self-care program Description: Powerful Tools for Caregivers is six-week self-care psychoeducational training program for family and friends caring for older adults with cognitive and chronic impairments. In the six weekly classes, caregivers develop a wealth of self-care tools to: reduce personal stress; change negative self-talk; communicate their needs to family members and healthcare or service providers; communicate more effectively in challenging situations; recognize the messages in their emotions, deal with difficult feelings; and make tough caregiving decisions. Classes are typically 2.5 hours and consist of groups of 10-15 caregivers. Powerful Tools is based on a train-the-trainer model for community-based organizations with a detailed, scripted curriculum. Caregiver classes are co-led by certified, trained class leaders. Training for class leaders is a two-day training conducted by master trainers. Powerful Tools was developed by Legacy Caregiver Services and Mather LifeWays Institute on Aging in Portland, Oregon. It originated through grant funding in 1998 and is based on the highly successful model of the Chronic Disease Self-Management Program developed by Kate Lorig and colleagues at Stanford University. Training for class leaders, master trainers, and curriculum materials are managed through a central hub. Trainings are held throughout the year in different locations. Costs vary, including licensing fees. Target Population(s): Family caregivers of older adults; a version of the program for family caregivers of children with special needs is being developed and tested. Implementation: Initiated through grant funding, the program has been offered for over 12 years. Currently, over 2,200 class leaders have been trained in 36 states. Since the program’s inception, Powerful Tools for Caregivers materials have reached over 80,000 caregivers. Goals/Objectives: To improve self-care behaviors, management of emotions, self-efficacy, and use of community resources

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Evidence of Outcomes: Evidence-Based Practice

Several evaluations and studies have been conducted on the Powerful Tools for Caregivers program, including one using a quasi-experimental design. The intervention is widely used in multiple sites with a high level of fidelity. Boise, Congleton, & Shannon (2005) evaluated the program using pre, post, and 6-month follow-up surveys. Class participants rated the classes very positively, reported high use of the tools taught during the series, and showed significant improvements in self-efficacy, emotional well-being, and self-care behaviors. Won, Fitts, Favaro, Olsen, & Phelan (2008) used pre and post-test surveys to study the impact on health-risk behaviors, self-care, and psychological well-being among 118 adult caregivers who participated in western Washington state between July 2001 and June 2004, about half of whom were aged 65 or older. Health-risk behaviors were reduced and self-care and psychological well-being improved significantly. Savundranayagam, Montgomery, Kosloski, & Little (2010) used a quasi-experimental design to study the impact of the program on caregiver burden of spouse caregivers. Participants in the Powerful Tools group reported significantly lower levels of stress and objective burden than the comparison group. Kuhn, Hollinger-Smith, Presser, Civian, & Batsch, N. (2008) conducted an exploritory study to assess an interative online version of the program. Pilot studies have been done to test an adaptation of the program for the families of children with special needs. Preliminary findings from these pilots suggests that the same outcomes are achieved. Additional Information: Powerful Tools for Caregiving website: www.powerfultoolsforcaregiving.org References: Boise, L., Congleton, L., & Shannon, K. (2005). Empowering family caregivers: the Powerful

Tools for Caregiving Program. Educational Gerentology, 31(7), 573-586.

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Kuhn, D., Hollinger-Smith, L., Presser, J., Civian, J., & Batsch, N. (2008). Powerful tools for caregivers online: an innovative approach to support employees. Journal of Workplace

Behavioral Health, 23, 51-69. Savundranayagam, M. Y., & Brintnall-Peterson, M. (2010). Testing self-efficacy as a pathway

that supports self-care among family caregivers in a psychoeducational intervention. Journal of Family Social Work, 13, 149-162.

Savundranayagam, M., Montgomery, R., Kosloski, K., & Little, T. (2011). Impact of a

psychoeducational program on three types of caregiver burden among spouses. International Journal of Geriatric Psychiatry, 388-396.

Won, C., Fitts, S., Favaro, S., Olsen, P., & Phelan, E. (2008). Community-based “powerful tools”

intervention enhances health of caregivers. Archives of Gerontology and Geriatrics, 46(1), 89-100.

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Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II Primary Practice: Individual (in-person, telephone) and support-group education and skill building intervention for caregivers of individuals with dementia Description: Based on the stress health process model the multisite National Institute on Aging/National Institute of Nursing Research randomized controlled trial (RCT), Resources for Enhancing Alzheimer’s Care- giver Health (REACH II) is a multicomponent psychosocial and behavioral training intervention for caregivers (21 years and older) of patients with Alzheimer's disease or dementia. The intervention is designed to reduce caregiver burden and depression, improve caregivers' ability to provide self-care, provide caregivers with social support, and help caregivers learn how to manage difficult behaviors in care recipients. REACH II participants are provided with educational information, skills to manage care recipient behaviors, social support, cognitive strategies for reframing negative emotional responses, and strategies for enhancing healthy behaviors and managing stress. Methods used in the intervention include didactic instruction, role-playing, problem-solving tasks, skills training, stress management techniques, and telephone support groups. Intervention materials and assessment instruments have been translated in Spanish and allow for regional variation in language expression. Bilingual and bicultural staff were employed for the evaluation, and all assessors and interventionists received cultural-sensitivity training Target Population(s): Caregivers of individuals with dementia and/or Alzheimer’s Implementation: REACH II has been conducted at numerous sites through the funding from the VA, state aging programs, AAAs, and implemented internationally in Korea, Hong Kong, and Germany. Goals/Objectives: Improve caregivers’ health and well-being, safety, social support; and handling of problem behaviors of care recipients with dementia. Evidence of Outcomes: Evidence-Based Practice

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Randomized control studies support decreased burden and depression, enhanced self-care, and social support of caregivers; reduced behavioral problems of individuals with dementia receiving care. In the randomized controlled trial of REACH, the intervention was delivered over 6 months by certified interventionists holding at least a bachelor's degree. The protocol included 12 individual sessions (9 at home and 3 by telephone) and 5 structured support-group sessions by telephone. Participants were supplied with resource notebooks that contained educational materials and telephones with visual display screens linked to a computer-integrated telephone system to support conference calling. The intervention was implemented with 642 in-home caregivers at 5 sites in 5 cities (Birmingham, Alabama; Memphis, Tennessee; Miami, Florida; Palo Alto, California; and Philadelphia, Pennsylvania). All five sites were evaluated for outcomes. REACH II also was implemented within the Veterans Health Administration in 29 sites from 24 facilities in 15 States, with a total of 127 caregiving dyads participating, and was implemented by 2 Area Agencies on Aging in Kentucky and Illinois. The intervention is also being used by the Rosalynn Carter Institute at Georgia Southwestern State University with rural dementia caregivers through an Administration on Aging grant. Approximately 900 individuals have participated in this intervention. The program makes it possible for people with dementia to live in their own homes longer by addressing problems related to caregiver health that often force people to move their loved ones to long term care facilities. If the caregiver is better able to manage the challenges of caregiving, the person he or she cares for will benefit as well. Burgio and colleagues (2009) founded positive pre-post effects for caregiver health, social support, subjective burden, frustration, and depression, and care recipient behavior problems and mood. Nichols and colleagues (2009) adapted the REACH II intervention for use in Veterans Administration Medical Centers as part of clinical practice. From baseline to six months, caregivers reported significantly decreased burden, depression, and frustration, and fewer troubling dementia-related behaviors. Czaja and colleagues (2013) tested an adapted version of the program using video technology with one hundred ten (56 Latino and 54 African American) caregivers of patients with dementia in the greater Miami area. Caregivers who received the intervention reported a decrease in burden, an increase in perceived social support and positive perceptions of the caregiving

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experience. No effect was observed for depression. Most participants indicated that the intervention improved their caregiving skills and found the technology to be easy to use. References: Belle, S. H., Burgio, L., Burns, R., Coon, D., Czaja, S. J., Gallagher-Thompson, D., . . . Zhang, S.

(2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: A randomized, controlled trial. Annals of Internal Medicine, 145, 727-738.

Burgio, L. D., Collins, I. B., Schmid, B., Wharton, T., McCallum, D., & DeCoster, J. (2009).

Translating the REACH caregiver intervention for use by Area Agency on Aging personnel: The REACH OUT program. The Gerontologist, 49(1), 103-116.

Burgio, L., Corcoran, M., Lichstein, K. L., Nichols, L., Czaja, S., Gallagher-Thompson, D., . . .

Schulz, R. (2001). Judging outcomes in psychosocial interventions for dementia caregivers: The problem of treatment implementation. The Gerontologist, 41(4), 481-489.

Cho, J., Ory, M., & Stevens, A. (2016). Socioecological factors and positive aspects of caregiving:

findings from the REACH II intervention. Aging Mental Health, 20(11), 1190-1201. Czaja, S. J., Schulz, R., Belle, S. H., Burgio, L. D., Armstrong, N., Gitlin, L. N., . . . Stahl, S. (2006).

Data and safety monitoring in social behavioral intervention trials: The REACH II experience. Clinical Trials, 3(2), 107-118.

Czaja S.J., Loewenstein D., Schulz R., Nair S.N., Perdomo D. (2013). A videophone psychosocial

intervention for dementia caregivers. Am J Geriatr Psychiatry. 21(11), 1071-81. Gitlin, L. N., Belle, S. H., Burgio, L. D., Czaja, S. J., Mahoney, D., Gallagher-Thompson, D., . . .

Ory, M. (2003). Effect of multicomponent interventions on caregiver burden and depression: The REACH multisite initiative at 6-month follow-up. Psychology and Aging,

18(3), 361-374. Nichols, L. O., Martindale-Adams, J., Burns, R., Graney, M. J., & Zuber, J. (2011). Translation of

a dementia caregiver support program in a healthcare system-REACH VA. Archives of

Internal Medicine, 171(4), 353-359. Schulz, R., Burgio, L., Burns, R., Eisdorfer, C., Gallagher-Thompson, D., Gitlin, L., & Mahoney,

D. (2003). Resources for Enhancing Alzheimer's Caregiver Health (REACH): Overview, Site-Specific Outcomes, and Future Directions. Gerontologist, 43(4), 514-520.

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Savvy Caregiver Primary Practice: Psycho-educational training program for Dementia Caregivers Description: Savvy Caregiver is a psycho-educational training program intended to train families and others about the unfamiliar role they face as caregivers of a relative or friend with Alzheimer’s disease or dementia. Savvy Caregiver is a 12-hour program that is delivered in 2-hour sessions over a 6-week period. Available materials for the program include a detailed trainer manual, a caregiver manual, a training videotape and a CD-ROM. The program focuses on helping caregivers think about their situation objectively and on providing them with the knowledge, skills, and attitudes they need to manage stress and carry out the caregiving role effectively. Target Population(s): Caregivers of individuals with dementia and Alzheimer's. Implementation: In-person training has been implemented by at least 4 Area Agencies on Aging and caregiver programs and in 25 local communities. An online version is also available. Objectives: The main objective is for caregivers to gain knowledge, skills, & outlook to become more effective in their caregiving role. Evidence of Outcomes: Evidence-Based Practice

The program is widely implemented across the country by community-based organization. In general, the Savvy Caregiver program has been found to improve caregivers’ beliefs about caregiving, reactions to the behavioral symptoms of their care recipient, and their feelings of stress and burden. A self-contained version of Savvy Caregiver was originally was field tested with 140 family caregivers in rural Minnesota, Denver, and Anchorage, Alaska, with positive responses from participants (Hepburn et al., 2003). Hepburn and colleagues (2005) conducted a randomized trial with 215 dyads (caregivers and care receivers). The program contributed to strengthening caregivers’ ability to better

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understand and undertake their caregiving role. It reduced feelings of distress and improved caregiving attitude at 6 months. Hepburn, Lewis, Tornatore, Sherman, & Bremer (2007) conducted a randomized control study to assess the ability to translate the original program developed and tested at the University of Minnesota to other community-based sites. A total of 52 caregivers completed both questionnaires (22 were in the wait-list control group). Experimental participants’ scores on measures of mastery and distress were significantly better than control participants’ scores at follow-up. Kally and colleagues (2014) examined the impact of the program on English-speaking caregivers of Hispanic, Black/African American, and Asian/Pacific Islander descent. Findings showed more caregiver competence, reduced depression, greater tolerance for care recipients' memory problems, better management of their overall situation, and improved perception of that situation 6 months and 12 months post-enrollment. Griffiths, Whitney, Kovaleva, & Hepburn (2014) tested the preliminary efficacy of Tele-Savvy, an internet-based version of the in-person Savvy Caregiver Program for dementia caregivers. A convenience sample of 30 dementia caregivers from the Atlanta VA Medical Center enrolled in the Tele-Savvy clinical demonstration program (22 caregivers completed both pre- and post-test evaluations). While additional research is needed, results showed decreases in burden, anxiety, and depressive symptoms and marginally significant increases in caregiver competence. References: Griffiths, P.C., Whitney, M.K., Kovaleva, M., & Hepburn, K. (2014). Development and

implementation of Tele-Savvy for Dementia Caregivers: A Department of Veterans Affairs Clinical Demonstration Project. Gerontologist, 56(1), 145–154.

Hepburn K.W., Tornatore J., Center B., & Ostwald S.W. (2001) Dementia family caregiver

training: Affecting beliefs about caregiving and caregiver outcomes. Journal of the

American Geriatrics Society, 49(4), 450-457. Hepburn K.W., Lewis M., Sherman C.W., & Tornatore J. The Savvy Caregiver Program:

Developing and testing a transportable dementia family caregiver training program. (2003) Gerontologist 43(6), 908-915.

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Hepburn, K., Lewis, M., Narayan, S., Center, B., Tornatore, J., Lindstrom-Bremer K., & Kirk, L. (2005). Partners in caregiving: A psychoeducation program affecting dementia family caregivers’ distress and caregiving outlook. Clinical Gerontologist, 29, 53-69.

Hepburn, K., Lewis, M., Tornatore, J., Sherman, C. W., & Bremer, K. L. (2007). The Savvy

Caregiver Program: The demonstrated effectiveness of a transportable dementia caregiver psychoeducation program. Journal of Gerontological Nursing, 33, 30–36.

Kally, Z., Cote, S. D., Gonzalez, J., Villarruel, M., Cherry, D. L., Howland, S., Higgins, M.,

Connolly, L., & Hepburn, K. (2014). The Savvy Caregiver Program: Impact of an evidence-based intervention on the well-being of ethnically diverse caregivers. Journal of

Gerontological Social Work, 57, 681–693. Ostwald S.K., Hepburn K.W., Caron W., Burns T., & Mantell R. (1999). Reducing caregiver

burden: A randomized psychoeducational intervention for caregivers of persons with dementia. Gerontologist, 39(3), 299-309.

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Sibshops Primary Practice: Support groups for school-age siblings of individuals with disabilities Description: Sibshops are peer support and educational programs where school-age brothers and sisters meet other young siblings (usually for the first time), have fun, laugh, talk about the good and not-so-good parts of having a sibling with special needs, play some great games, and learn something about the services their brothers and sister receive. The Sibshop model was developed by Don Meyer of the Sibling Support Project and he trains Sibshop facilitators across the country and the world. Sibshops facilitators are often family members of people with disabilities or service providers. Target Population: Young siblings of individuals with special health care needs. While Sibshops were developed for sibs in the 8-13 year-old age range, Sibshops (depending on the community) are being offered for sibs as young as six and for teens as well Implementation: There are over 450 Sibshops in most US states and Canadian provinces and in eight countries. A wide range of agencies sponsor Sibshops: early intervention centers, school districts, children’s hospitals, chapters of The Arc, Easter Seals programs, autism societies, Down syndrome groups, developmental disabilities councils, Jewish community centers, churches, parks and recreation programs, etc. Often, local agencies work with other like-minded agencies to cosponsor one Sibshop for all the brothers and sisters in a given community Goals/Objectives: The objective of Sibshops are to provide a space for siblings to connect with each other for peer support as well as to learn information about disabilities and navigating social situations related to their brothers and sisters with disabilities Evidence of Outcomes: Emerging Practice/Model

The program is widely implemented and has fidelity in training of facilitators. Limited research has been conducted on Sibshops. A small pilot study with 16 children and their parents did not find impacts on self-esteem but qualitative interviews indicated satisfaction and benefits of participating in the program (D’Arcy, Flynn, McCarthy, O’Connor, & Tierney, 2005).

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A retrospective follow-up survey of 30 Sibshop participants was conducted by the University of Washington (Johnson & Sandall, 2005). Respondents indicated that participation had a positive effect on the feelings they had for their siblings; Sibshops taught coping strategies to over two-thirds of respondents; three-fourths reported that Sibshops affected their adult lives; and 94% said they would recommend Sibshops to others. Additional Information: Conway, S., & Meyer, D. (2008). Developing support for siblings of young people with

disabilities. Support for Learning, 23(3), 113-117. References: D’Arcy, F., Flynn, J., McCarthy, Y, O’Connor, C., & Tierney, E. (2005). Sibshops: An evaluation

of an interagency model. Journal of Intellectual Disabilities, 9(1), 43–57. Johnson, A. B., & Sandall, S. (2005). Sibshops: A Follow-Up of Participants of a Sibling Support

Program. University of Washington, Seattle.

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Stress-Busting Program for Family Caregivers Primary Practice: Multi-component in-person intervention led by facilitators Description: The Stress Busting Program (SBP) for Family Caregivers is a multi-component program where two facilitators meet with a small group of family caregivers for 1 ½ hours once a week for 9 consecutive weeks to facilitate education, support, problem solving, and stress management. It takes a holistic approach addressing the emotional, physical, spiritual, and cognitive needs of family caregivers. Content includes the topics of (1) stress and relaxation; (2) grief, loss, and depression; (3) dealing with challenging behaviors of people with dementia; (4) coping with stress; (5) positive thinking; (6) taking time for yourself; and (7) choosing a path of wellness. Stress management techniques are taught including (1) relaxation breathing, (2) meditation, (3) imagery, (4) art, (5) music, (6) journaling, and (7) aromatherapy. Target Population(s): Caregivers of individuals with dementia and older adults with chronic conditions Implementation: From 1996 – 2010, the Stress-Busting Program was developed through funding from the National Institutes of Health. From 2010 – 2012 the program was disseminated to the community with funding from the Administration on Aging in partnership with The WellMed Charitable Foundation. The program is recognized by the Administration on Aging as the highest-level criteria for an evidence-based program and by the VA as evidence-supported program. The program is written into the Texas State Plan on Alzheimer’s disease under Goal IV. The program is currently offered in at least 10 states. Goals/Objectives: It is designed to (1) improve the quality of life of family caregivers and (2) help caregivers manage their stress and cope better with their lives Evidence of Outcomes: Evidence-Based Practice

The program is widely implemented at multiple site with a high level of fidelity in materials and master facilitator training. The Stress Busting program was evaluated with a convenience sample of 209 caregivers from a large metropolitan area in south Texas. Caregivers were surveyed at four points in time: pre-

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test (Time 1), middle of intervention at 4 weeks (Time 2), end of intervention at 9 weeks (Time 3), and follow-up session 2 months following completion of the program. Results of both the original research and the dissemination phases of the SBP indicate that caregivers had significant decreases in perceived stress, depression, caregiver burden, anxiety, and anger/hostility. In addition, they also had improvements in general health, vitality, social function, and mental health scores. Follow-up data indicated that these changes were maintained at 2 and 4 months after the intervention. Additional Information Stress-Busting Program for Caregivers website: http://www.caregiverstressbusters.org/ References: Lewis, S.L., Miner-Williams, D.M., et al. (2009). A Stress-Busting Program for Family Caregivers.

Rehabilitation Nursing, 34 (4), 151-159.

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Discovery & Navigation (Information and Training Supports)

¾ Care of Persons with Dementia in their Environments (COPE)

¾ Caregiver Coach Program

¾ Center for Future Planning

¾ Family to Family Health Information Centers

¾ National Alliance for Mental Illness (NAMI) Family-to-Family

¾ Parent Training and Information Centers

¾ Partners in Policymaking

¾ Positive Parenting Program

¾ Sibling Policy Forums

¾ Skills2Care

¾ Tailored Caregiver Assessment and Referral Support System

(TCARE) ¾ The Conversation Project

¾ The Future is Now

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Care of Persons with Dementia in their Environments (COPE) Primary Practice: In-person caregiver education program delivered by professionals (OTs) Description: Care of Persons with Dementia in their Environments (COPE) is a training program designed to support the physical function and quality of life for patients with dementia and the well-being of their caregivers. It addresses core elements of dementia care including optimizing physical health and function, engaging in daily activities, maintaining quality of life, and supporting caregivers. The program is composed of three sections: assessment, education, and training. The program begins with an assessment that is administered by an occupational therapist (OT). The therapist conducts an interview with the caregiver to identify the person with dementia routines, previous and current roles, habits and interests, and caregiver concerns. Moreover, the therapist perform a cognitive and functional test to identify the person with dementia strengths and deficits in attention, initiation and perseveration, construction, conceptualization, and memory. Results from the assessment are then used to provide a personalized education and training program. Caregiver education include understanding the capabilities of the person with dementia, potential effects of medications, and general health concerns such as pain, dehydration, constipation…etc. Lastly, occupational therapists train caregivers to modify home environments, daily activities, and communications to support patient capabilities, use problem- solving to identify solutions for caregiver-identified concerns, and reduce stress. For each targeted concern, a written action plan is provided describing treatment goals, patient strengths, and specific strategies. Caregivers receive up to 10 sessions over 4 months with occupational therapists and 1 face-to-face session and 1 telephone session with an advance practice nurse. Goals/Objectives: To support individual with dementia capabilities by reducing environmental stressors and enhance caregiver skills, problem-solving, and reduce stress. Target Population: Caregivers of adults with dementia Implementation: The program is being implemented in some Medicaid Home and Community-Based Services (HCBS) programs.

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Evidence of Outcomes: Evidence-Based Practice A randomized experimental design was used to determine the efficacy of the program. Data were collected at 4 months and 9 months from 12 participants. Results indicated that caregivers who received the training showed an improvement in well-being and in confidence using activities. Moreover, by 4 months, 63% of caregivers who received the training vs 45% of those in the control group eliminated 1 or more caregiver-identified problems. Results persisted at 9 months only for caregivers and not for the person with dementia. References: Gitlin, L. N., Winter, L., Dennis, M. P., Hodgson, N., & Hauck, W. W. (2010). A bio-behavioral

home-based intervention and the well-being of patients with dementia and their caregivers: The COPE randomized trial. Journal of the American Medical Association, 304(9), 983-991.

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Caregiver Coach Program Primary Practice: In-person navigational support delivered by professionals Description: The Caregiver Coach Program comprises a coordination system that helps caregivers navigate available services. It was established by La Crosse County Aging Unit in 2013. The core principle of the program was established in response to frequent complaints from caregivers such as not knowing where to start and feeling overwhelmed. Caregivers are referred to the coach through healthcare providers at La Crosse, Gundersen and Mayo Healthcare Systems. The coach visits with the caregiver and their loved one to determine what services would fit their needs and their desire at the current time. Additionally, the coach is available by phone or in person as a mentor, giving support, reassurance and addressing changes in the care plan as needed. Reassuring support, mentoring, problem solving with the help of the coach relieves some of the burden on caregivers. The coach also helps caregivers attend support groups. Target population(s): Caregivers of older adults, individuals with dementia Goals/Objectives: Improved coordination/navigation of services Implementation: The program is currently offered through La Crosse County Aging Unit (Wisconsin) and is available for caregivers and/or care receiver who are age 60+ for free. Previously the program was funded the National Family Caregiver Support Program (NFCSP). Evidence of Outcomes: New Idea/Novel Approach

No formal research has been conducted on the program. As of May 2015 the program has served 208 individuals. Additional Information: Caregiver Coach brochure:

http://www.lacrossecounty.org/adrc/docs/Caregiver%20Coach%20Brochure%202014.pdf

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Brezinka, A. (2016) Caregiver Coach Program Initial Report. Aging and Disability Resource Center of Western Wisconsin.

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Center for Future Planning Primary Practice: On-line information and interactive future planning tool Description: The Arc’s Center for Future Planning aims to support and encourage adults with I/DD and their families to plan for the future, particularly aging caregivers of adults with I/DD. The Center provides reliable information and practical assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning. The Arc’s Center for Future Planning hosts an interactive and user-friendly tool (Build Your Plan®) designed to assist families with building a plan for the future. Target Population(s): Individuals with I/DD and their families Goals/Objectives: The goal of this project is to support aging caregivers of adults with I/DD to plan for the future of their adult son or daughter with I/DD. Objectives are to provide families with information, resources, and practical assistance in person-centered planning; guardianship and supported decision-making; housing and residential options and supports; special needs trust and representative payee services; financial planning; and personal care and independent living supports. Implementation: In 2014, The Arc was awarded a grant from the May and Stanley Smith Charitable Trust to develop a National Center on Future Planning for families and individuals with intellectual and developmental disabilities (I/DD). The Center for Future Planning website was launched on December 1, 2015. Since that time, 10,225 unique users have visited the website. Each week, there is about 239 unique visitors to the site, each stay for an average of 2 minutes and 50 seconds. The Build Your Plan® tool was launched on December 2015. Between then and 10/23/2016, 488 accounts were created. That is about 15 sign-ins to accounts each week. Of the 488 accounts, 311 are parents, 45 siblings, 35 people with I/DD, 28 other family and friends, and 66 professionals. Evidence of Outcomes: New Idea/Novel Approach

No formal research has been conducted on outcomes.

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Additional Information: Center for Future Planning website: https://futureplanning.thearc.org/

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Family to Family Health Information Centers Primary Practice: Information and referral delivered in-person and over the phone by peer family members Description: Family to Family Health Information Centers (F2FHIC) offer assistance and training to families of children (or youth) with special health care needs (CSHCN) or those with disabilities. Services that are offered through these centers include a hands-on assistant for families to apply for public programs, connect them with another parent who is in a similar situation, connect them with support groups, give advice and guidance on how to advocate with their child, and provide training in such areas as Medicaid, the Affordable Care Act, leadership development, and more. F2F HICs are uniquely qualified to help families because they are staffed by family members who have first-hand experience navigating the maze of health care services and programs for CYSHCN. F2F HIC staff understand the issues that families face and help families make informed decisions. All F2F HICs provide:

x Assistance to families and professionals in navigating health care systems; x Information, education, training, support and referral services; x Outreach to underserved / underrepresented populations; x Guidance on health programs and policy; x Collaboration with other F2F HICs, family groups, and professionals to improve services

for CYSHCN; and x Evaluation and outcome assessment

Target Population(s): Caregivers of children and youth with disabilities or special health care needs. Implementation: The family to family health information centers are funded by the U.S. Health Resources and Services Administration (HRSA). There are 52 family to family health information centers across the nation. Family Voices is the national organization that represent these centers. Goals/Objectives: To promote optimal health for children (and youth) with special health care needs and disabilities and facilitate their access to an effective health delivery system by meeting the health information and support needs of families and the professionals who serve them.

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Evidence of Outcomes: Emerging Practice/Model Family to Family Health Information Centers exist across the US and Family Voices provides connection across states. While no formal research on the program has been conducted, families who have received services and supports report positive outcomes. According data collected by Family Voices, between June 2009 and May 2010 approximately 1.5 million individuals received services (69% were family members while 31% were professionals). Services provided included: assistance, training, and broad outreach. The type of information that was requested by individuals (almost equal proportions) included transition, navigation system, screening, financing, medical home, and parenting. Approximately 81% of families reported that they are better able to partner with provider, 90& were better able to navigate community services, and 86% felt more confident in getting needed services. Additional Information: Family Voices website: http://www.familyvoices.org/

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National Alliance for Mental Illness (NAMI) Family-to-Family Primary Practice: Psycho-educational program led by peer families Description: The National Alliance on Mental Illness (NAMI) Family to Family is a psychoeducational program for family, significant others and friends of people living with mental illness. It is a 12-week course taught by trained families of individuals living with a serious mental illness for other family members. The model emphasizes education, support, self-care and problem solving. NAMI Family-to-Family is taught by trained peer family members who have participated in the program and been certified as trainers. The curriculum includes presentations, discussion and interactive exercises. Target Population(s): Caregivers of individuals with mental illness Implementation: NAMI’s Dr. Joyce Burland developed Family-to-Family in 1991. It is has been used widely across the country, with over 300,000 people having taken the course, and 3,500 individuals having been certified as trainers. Family-to-Family has been translated into many languages, and has been culturally adapted and used successfully for Spanish communities in America and in Mexico and Puerto Rico (called NAMI de Familia de Familia). Goals/Objectives: Improve the coping and problem-solving abilities of caregivers of individuals with a mental health condition. Evidence of Outcomes: Evidence-Based Practice

A major randomized clinical trial of the program was conducted, showing that program significantly improved coping and problem-solving abilities of participants. The program is currently widely implemented and has fidelity. Dixon, Lucksted, Medoff, Burland, Stewart, & Lehman (2011) conducted a randomized clinical trial with 318 participants in five Maryland counties. Participants were counties were randomly assigned to take FTF immediately or to wait at least three months for the next available class with free use of any other NAMI supports or community or professional supports. FTF participants had significantly greater improvements in problem-focused coping as measured by

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empowerment and illness knowledge. Exploratory analyses revealed that FTF participants had significantly enhanced emotion-focused coping as measured by increased acceptance of their family member’s illness, as well as reduced distress and improved problem solving. Subjective illness burden did not differ between groups. Mercado and colleagues (2016) also conducted an evaluation of the program with 83 participants from New York. While this study did not use randomized assignment, it indicated improvements in family empowerment, family functioning, engagement in self-care activities, self-perception of mental health knowledge, and emotional acceptance as a form of coping. Scores for emotional support and positive reframing also improved significantly. Additional Information: National Alliance on Mental Illness. (2013). NAMI Family-to-Family. Available at:

https://www.nami.org/Find-Support/NAMI-Programs/NAMI-Family-to-Family National Alliance on Mental Illness. (2014, March 21). NAMI Family-to-Family: Evidence Meets

Experience. Retrieved 2017, from National Alliance on Mental Illness: https://www.nami.org/Blogs/NAMI-Blog/March-2014/NAMI-Family-to-Family-Evidence-Meets-Experience

References: Dixon, L., Lucksted, A., Medoff, D., Burland, J., Stewart, B., & Lehman, A. (2011). Outcomes of

a randomized study of a peer-taught Family-to-Family Education Program for mental illness. Psychiatric Services, 62(6), 591-7.

Dixon, L., Lucksted, A., Stewart, B., Burland, J., Brown, C. H., Postrado, L., et al. (2004).

Outcomes of the peer-taught 12-week family-to-family education program for severe mental illness. Acta Psychiatrica Scandanavica, 109(3), 207–215.

Lucksted, A., Stewart, B., Forbes, C.B. (2008). Benefits and changes for Family to Family

graduates. American Journal of Community Psychology, 42, 154–166. Mercado, M., Fuss, A.A., Sawano, N., Gensemer, A., Brennan, W., McManus, K., Dixon, L.B.,

Haselden, M., & Cleek, A.F. (2016). Generalizability of the NAMI Family-to-Family Education Program: Evidence from an Efficacy Study. Psychiatric Services, 67(6), 591-593.

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Parent Training and Information Centers Primary Practice: In person/phone educational and advocacy training programs by peer family members Description: Parent Training and Information Centers (PTIs) serve as a resource for information and training to parents of children with disabilities. Families reach out to PTIs to gain information about their child disability, learn about what IDEA means for their child, and gain information about options, programs and services that are available to help the child and the family. Moreover, families learn how to communicate effectively with people who are working with their child, actively participate in decision making processes and learn valuable methods to advocate for themselves and for their child. Most of the services that are offered by PTIs are free. However, certain services might require a modest fee. Target Population(s): Parents of children and adolescents with disabilities or health issues, and professionals working with such families who need assistance with navigating the educational system. Implementation: PTIs are maintained through Centers for Parent Information and Resources (CPIR) that are made possible through funding from the Office of Special Education Programs (OSEP) at the U.S. Department of Education. Almost every state has a PTI (but with different names). Goals/Objectives: The main objectives of PTIs are to provide training and information for caregivers in various topics such as their rights, responsibilities and protections under IDEA, so as to more effectively participate in decisions with/for their child regarding early intervention, educational and transitional services. Evidence of Outcomes: Emerging Practice/Model

No formal research has been conducted on outcomes. However, positive outcomes are reported by centers. Each state is required to report yearly and must submit an annual performance report for their Parent Training and Information Centers that demonstrates how they met the above goals/objectives to OSEP. Additional Information: Website: http://www.parentcenterhub.org/

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Partners in Policymaking Primary Practice: Advocacy and leadership training for family caregivers and individuals with disabilities. Available online and in person provided by peer family members Description: Partners in policy makers is a leadership training program that train participants on means to collaborate and establish positive relationships with policy makers. Partners work towards insuring that the rights of people with disabilities are maintained in future public policies. The program’s curriculum includes 128 hours of instruction that are taught over 8 weekends. It is delivered by organizations or individual coordinators who are responsible for recruiting participants, class organization, communication with expert trainers, and organizing financial aspects. The curriculum covers several topics that are related to individuals with developmental disabilities and their families. These topics include the history of services, self-advocacy and independent living movements, critical skills that would help the participants draft a vision for the year 2020 and beyond for people with disabilities, skills that enhances leadership such as understanding how a bill become a law, identifying critical federal issues and the process by which participants can personally address their concerns, and learn how to meet a public official and discuss their needs. An online program has been offered since 2003. The program offers five online courses that aim to introduce the basic concepts of Partners in Policymaking. These courses are Partners In Living, Partners in Time; Partners in Education, Partners in Making your Case; and Partners in Employment. The program offers up to date knowledge that participants can access to increase their knowledge and understanding of best practices in the disability field and learn how to communicate effectively with their elected officials. The program also offers participants the opportunity to supplement their learning. Target Population(s): Families and caregivers of individuals with developmental disabilities Implementation: The program was developed by the Minnesota Governors Council on Developmental Disabilities in 1987. It has been widely implemented across the country and internationally. By 2015, there were more than 27,000 Partners graduates, including nearly 3,000 internationally.

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While Partners in Policymaking programs have been initiated in several countries outside of the United States, funding sources have varied and efforts to secure funding on an ongoing basis have been met with mixed results. State DD Councils have often provided funding to implement the program within their states. Over time, programs have been offered in the following countries or regions: Australia, The Netherlands, New Zealand, Portugal, Republic of Ireland, and United Kingdom. Goals/Objectives: The goal of this program is to empower individuals with developmental disabilities and families to become leaders and influence policy. Evidence of Outcomes: Emerging Practice/Model

Several small-scale quantitative and qualitative evaluations have been conducted on the Partners in Policymaking program. While none have used an experimental design with a control group, there is support for outcomes in empowerment and policymaking. The program is widely implemented with a high level of fidelity. Zirpoli, Wieck, Hancox, & Skarnulis (1994) conducted quantitative and qualitative follow-up surveys and interviews with program graduates. Results indicated both satisfaction with the program and the advocacy actions and leadership taken by graduates. Balcazar, Keys, Bertram, & Rizzo (1996) and Reynolds (2011) conducted quantitative and qualitative studies on the impact of the program on empowerment and advocacy development of participants. Johnson, J.R. & Bethke (unpublished) are conducting research on the long-term outcomes of the program using pre-test, 6-month, and 5-year follow-up surveys. Preliminary findings indicate increases in self-rated advocacy and leadership, ability to secure services, and advocacy outcomes associated with graduates. Qualitative findings also support impact of the program on advocacy and leadership. In 2014, the Minnesota Governor’s Council on Developmental Disabilities contracted with MarketResponse International to conduct a survey of Minnesota Partners in Policymaking graduates. The report contains rich quotes and descriptions from people with disabilities and family members about how the program impacted their lives. Additional Information: Partners in Policymaking website: http://mn.gov/mnddc/pipm/

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References: Balcazar, F., Keys, C., Bertram, J., & Rizzo, T. (1996). Advocate development in the field of

developmental disabilities: A data-based conceptual model. Mental Retardation, 34(6), 341-351.

Johnson, J.R. & Bethke, H. (unpublished) Partners in Policymaking: Long term outcomes.

Unpublished presentation of preliminary findings of long-term evaluation. Available at: http://mn.gov/mnddc/pipm/pdf/LongTermResearch_Partners.pdf

Minnesota Governor’s Council on Developmental Disabilities (July, 2015). Partners in

Policymaking: Changing Lives. Changing policies. Available at: http://mn.gov/mnddc/pipm/pdf/PiP-Changing-Lives-Changing-Policies1.pdf

Reynolds, M.C., (2011). Understanding the Partners in Policymaking Program and the Impact

of Participation on Parents of Children with Developmental Disabilities in Missouri. Unpublished doctoral dissertation. University of Missouri-Kansas City.

Zirpoli, T., Hancox, D., Wieck, C., Skarnulis, E. (1989). Journal of the Association for Persons

with Severe Handicaps, 14(2), 163-167. Zirpoli, T., Wieck, C., Hancox, D., & Skarnulis, E.R. (1994). Partners in policymaking: The first

five years. Mental Retardation 32(6), 422-42.

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Positive Parenting Program Primary Practice: Multipronged Approach to Build Parenting Skills for Parents with ID Description: Positive Parenting is a resource center that is offered through The United Arc of Greenfield, MA. This program provides intensive support to parents with intellectual disabilities and their children. Some of the services that are available for parents include individualized parent and groups support, supervised visitation, grandparents’ caregiver support, consultation and mentoring support. Individualized parent support include education, parent skills training, case management, service advocacy and family support. While the support groups sessions focus on child development, parent/child communication, health and wellness, family literacy, basic household and financial stability, positive discipline and limit setting, safety factors and prevention of abuse and neglect, and access of community resources. Most groups have a target parent population, i.e. parents with young children or parents of teens. Groups have educational themes and draw from a primary curriculum such as The Nurturing Parent or The Family Game. In addition to parenting skills instruction, the positive parenting program provides a service when children are in state’s custody that enables parents with disabilities to live with their child(ren) in their own apartments and provide a 24-hour a day on-site person support. Target Population(s): Caregivers with cognitive challenges, intellectual limitations or learning disabilities Implementation: Local level in Greenfield, MA Goals/Objectives: To provide support and education for parents with intellectual disabilities and advocate for their rights and equal opportunities within the community. Evidence of Outcomes: New Idea/Novel Approach

No formal research has been conducted on outcomes.

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Additional Information/Resources: Website: http://www.theunitedarc.org/positiveparenting.shtml

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Sibling Policy Forums Primary Practice: In person training for adult siblings of people with disabilities on advocacy skills for policy change with peer family members Description: The Sibling Policy Forums were conducted to educate siblings of people with disabilities to advocate with their brothers and sisters with disabilities on issues important to them and their entire families. Siblings often have the longest relationship of their lives with each other and they are an untapped constituency for policy advocacy. Siblings of people with disabilities can help educate policymakers in the movement toward full inclusion and participation of all individuals with disabilities. Two community dialogue forums were held to engage siblings of people with disabilities in a policy discourse that resulted in recommendations for disability policy. The forums were peer led by two adult siblings from the Sibling Leadership Network with experts on specific policies provided by siblings who skyped into the sessions. A total of 42 people attended and were educated about relevant policy issues from experts and given a Sibling Advocacy Toolkit with research and policy briefs, sample letters to policymakers, talking points, and steps to effectively share one’s story to impact change. Increased knowledge and empowerment of siblings through education was a major outcome of this initiative. Target Population(s): Adult siblings and their brothers and sisters with disabilities. Implementation: The forums were funded by the Institute for Policy and Civic Engagement at the University of Illinois at Chicago. Goals/Objectives:

x To teach siblings to advocate with their brothers and sisters with disabilities x To educate siblings about relevant policy topics x To increase the sibling voice at the policy table on issues important to them and their

entire families

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Evidence of Outcomes: New Idea/Novel Approach No formal research has been conducted on the practice to date. In a follow up surveys after the forums, participants said they would be more likely to become involved in disability policy, get involved in advocacy efforts, join/get more involved in advocacy organizations, and share what they learned with their family. Additional Information: Sibling Leadership Network website: http://siblingleadership.org/sibling-policy-forum/

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Skills2Care Primary Practice: Home-based intervention delivered by professionals (OTs) that modifies home environment and delivers caregiver education and skill development Description: Skills2care is a home-based environmental intervention designed to help family caregivers of persons with dementia learn specific strategies through education, skill-building, and environmental strategies. These strategies are designed to help caregivers modify their living space so that they develop a more supportive environment for the person with dementia. This intervention is based upon a competence-environmental press framework and personal control theory. In general, the intervention involves five 90-minute home visits by an occupational therapist who evaluates the home environment, observes performance of the person with dementia and the caregiving and communication style of the caregiver. Based on this assessment, the therapist provides basic education about dementia and the stressors of caregiving, and trains caregivers in specific strategies to help caregivers cope with daily care challenges. Strategies provided reflect simple modifications to the physical environment (e.g., removal of hazardous objects, use of a memory board or daily calendar) and social environment (e.g., communication techniques, cueing and approaches to simplifying everyday tasks). These strategies also include more resource dependent recommendations (e.g., installing grab bars or handrails), as well as basic problem solving and stress management techniques. All in all, the aim is for the person with dementia to exhibit fewer disruptive behaviors and experience a slower rate of decline and dependence in instrumental and basic activities of daily living (IADLs and ADLs). In each subsequent home visit, the occupational therapist reviews the previous week’s assignment/homework, reinforces education about dementia through written materials and discussion, addresses a targeted problem area, observes the caregiver using previously recommended strategies, provides refinements to those strategies, and or offers new recommendations. The occupational therapist helps the caregiver generalize the process to newly emerging problem areas. In the process of providing verbal instruction and training, the therapist uses cognitive restructuring and validation to instill greater perceived control and confidence in the caregiver’s own abilities to manage the problem and to develop more realistic appraisals of the caregiving situation, dementia-related behaviors, and expectations. In the final session, the occupational therapist reviews previously introduced strategies and how they might be applied to future potential problems.

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Approximately 25 to 30 hours of training specific to the intervention is needed for an occupational therapist to deliver the intervention. Training covers the following topics 1) how to effectively collaborate with the caregiver, 2) how to understand the cultural tenets of the caregiver-patient dyad that structure and inform caregiving in the home environment, 3) how to develop strategies that are tailored to individual problems and which resonate with cultural values of the dyad, 4) how to validate caregiver efforts and reinforce use of strategies, and 5) a range of strategies for specific problem areas. Therapists are also introduced to the intervention protocol, specific strategies, and treatment documentation. Target Population(s): Caregivers of individuals with dementia and Alzheimer’s Implementation: At least 20 home care agencies; AAAs; and OTs in private practice; covered by Medicare. Goals/Objectives: Help family caregivers learn specific strategies through education, skill-building and environmental modification Evidence of Outcomes: Evidence-Based Practice

Several studies have shown evidence supporting the impact of this intervention on family caregiver functioning of persons with dementia (e.g., Corcoran et al., 2001; Gitlin et al., 2001; Gitlin et al., 2003; Gitlin et al., 2006). Specifically, from the original randomized controlled trial (RCT) with 202 dementia caregivers, Gitlin et al. (2001) found that at 3-month follow-up, intervention environmental recommendations resulted in improvements for both caregivers and care-recipients. Caregivers who received the intervention, compared with caregivers in usual care, reported less decline in instrumental activities of daily living, a trend toward fewer declines in self-care, dependency, and fewer behavior problems at 3-months post-intervention. Additionally, spouses who received the intervention reported less upset with behavioral manifestations, women reported enhanced self-efficacy in managing troublesome behaviors, and women and African American caregivers reported enhanced self-efficacy in managing functional dependency compared with their counterparts in the control group. Other research has shown that the intervention helps sustain caregiver affect for those enrolled for more than 1 year. Lastly, Chee and colleagues (2007) found that modifiable caregiver and treatment implementation factors, including active engagement of caregivers, were associated with adherence, whereas patient characteristics were not. Caregivers with poor health may be at risk for not benefiting from intervention and suggest that efforts, including instruction in

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preventative care and allocating time to attend to their own health care needs, be directed towards improving their health. As part of the Philadelphia REACH study, Gitlin and colleagues (2003) more recently expanded upon the initial 3-month ESP caregiver intervention involving more occupational therapy time in the home, as well as the actual implementation of special equipment and other low-cost environmental strategies that had been recommended but not actually provided in their initial intervention. Compared with controls (n = 101), caregivers in the intervention group (n = 89) reported less upset with memory-related behaviors, less need for assistance from others, and better affect. Intervention spouses reported less upset with disruptive behaviors; men reported spending less time in daily oversight; and women reported less need for help from others, better affect, and enhanced management ability, overall well-being, and mastery relative to control group counterparts. Benefits from the intervention are apparent at both 3 and 6 month-follow-up. Caregivers have also been shown to be receptive and willing to try strategies offered during the intervention (total of 1,068) and subsequently use them independently post-intervention (869 strategies). Moreover, caregivers tended to use a greater number of strategies that modified the task and social environments than the objects layer of the environment. Of the problem areas facing these family caregivers, the most frequently identified as problematic included caregiver-centered concerns, catastrophic reactions, wandering, and incontinence. More recently, Gitlin and colleagues (2006) examined the impact of the program at 12-months and found that caregiver affect improved and there was a trend for maintenance of skills and reduced behavioral occurrences, but not on other outcome measures. Additional Information: Description from Rosalyn Carter Institute for Caregiving:

http://www.rosalynncarter.org/caregiver_intervention_database/dimentia/environmental%20skill-building%20program/

References: Chee, Y. K., Gitlin, L. N., Dennis, M. P., & Hauck, W. W. (2007). Predictors of adherence to a

skill-building intervention in dementia caregivers. Journal of Gerontology: Medical Sciences,

62A(6), 673-678. Corcoran, M., & Gitlin, L. N. (2001). Family caregiver acceptance and use of environmental

strategies in occupational therapy intervention. Physical & Occupational Therapy in

Geriatrics, 19(1), 1-20.

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Gitlin, L. N., Corcoran, M., Winter, L., Boyce, A., & Hauck, W. W. (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41, 4-14.

Gitlin, L. N., Winter, L., Corcoran, M., Dennis, M., Schinfeld, S., & Hauck, W. (2003). Effects of

the Home Environmental Skill-Building Program on the caregiver-care recipient dyad: Six-month Outcomes from the Philadelphia REACH Initiative. The Gerontologist, 43(4), 532-546.

Gitlin, L. N., Hauck, W. W., Winter, L., et al. (2006). Effect of an in-home occupational and

physical therapy intervention on reducing mortality in functionally vulnerable older people: Preliminary findings. Journal of the American Geriatrics Society, 54, 950-955.

Gitlin, et al. (2006). A randomized trial of a multi-component home intervention to reduce

functional difficulties in older adults. Journal of the American Geriatrics Society, 54, 809-816.

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Tailored Caregiver Assessment and Referral Support System (TCARE) Primary Practice: Assessment and referral support system Description: Tailored Caregiver Assessment and Referral (TCARE) is a care management protocol designed to support family members who are providing care to adults, of any age, with chronic or acute health conditions. It was designed to help care managers efficiently triage resources and services available within a community to effectively address the caregivers’ needs. The comprehensive system includes software, assessment tools, decision algorithms, and a training and technical assistance program. TCARE is grounded in the Caregiver Identity Theory, which conceptualizes caregiving as a series of transitions that result from changes in the caregiving context and in personal norms that are grounded in familial roles and culture. TCARE is implemented by a care manager who is certified as a TCARE assessor. The care manager uses a web based software to conduct an interview with the caregiver to obtain information including demographics, length and phase of caregiving, obligations, and physical and emotional health. The care manager also collects information related to the person with disabilities such as demographics and activities of daily living. A final score is given after the assessment (interviews), which the care manger uses in order to identify intervention goals, strategies, and an initial list of recommended services and resources (e.g., respite services, psychoeducational skills training, cognitive behavioral therapy, family counseling) from a catalog of 90 types of services. These recommendations, including the type of services and the amount of services, are tailored to the caregiver’s needs, preferences, and availability. The care manager consults with the caregiver to discuss the findings and provides the caregiver with information to make an informed choice on whether to use the recommended services and how the services will help with his or her caregiving needs. The process is repeated at 3-month intervals for the care plan to be adjusted as appropriate. The full assessment and referral process require 2½ to 3 hours of staff time to complete. Target Population(s): Caregivers of older adults

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Implementation: TCARE has been implemented in multiple agencies, including Washington State’s Family Caregiver Support Program and Washington State Department of Social and Health Services; Area Agency on Aging. Goals/Objectives: Process to assess caregiver needs and link with appropriate services and supports. Evidence of Outcomes: Evidence-Based Practice

A longitudinal, randomized, and controlled intervention study with 266 family caregivers served by 52 care managers in 4 states was conducted using repeated measures random effects regression procedures (Montgomery, Kwak, Kosloski, & O’Connell, 2011). Caregivers in the intervention and control groups were repeatedly assessed for up to 9 months on caregiver identity discrepancy, 3 areas of caregiving burden—objective, relationship, and stress burdens; depression; and intention for nursing home placement. There were significant group by time interaction effects for caregiver identity discrepancy, relationship burden, stress burden, depression, and intention for nursing home placement. Caregivers in the intervention group experienced significant improvement on these measures, whereas caregivers in the control group worsened on these measures over time. Kwak, Montgomery, Kosloski, & Lang (2011). Conducted a longitudinal, randomized controlled trial with 97 caregivers enrolled in a demonstration project in Georgia. A greater variety of services were recommended to and used by caregivers in the intervention group than in the control group. Caregivers in the intervention group had lower caregiver identity discrepancy, stress burden, and depressive symptoms over time than caregivers in the control group. Additional Information: TCARE Website: http://tailoredcare.com/ References: Kwak, J., Montgomery, R.J.V., Kosloski, K., & Lang, J. (2011). The Impact of TCARE® on service

recommendation, use, and caregiver well-being. The Gerontologist, 51(5), 704–713. Montgomery, R.J.V., Kwak, J., Kosloski, K., & O’Connell Valuch, K. (2011). Effects of the

TCARE® intervention on caregiver burden and depressive symptoms: preliminary findings from a randomized controlled study. The Journals of Gerontology, Series B:

Psychological Sciences and Social Sciences, 66(5), 640–647.

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Montgomery, R.J.V. (May, 2014). Has the use of Tailored Caregiver Assessment and Referral® System

Impacted the Well-being of Caregivers in Washington? Report to the Washington Aging and

Long-Term Support Administration. Helen Bader School of Social Welfare University of Wisconsin-Milwaukee.

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The Conversation Project Primary Practice: Self-Guided Training on End of Life Conversations Description: The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. It offers several starting kits that are targeted toward different audiences. One of the kits include questions that target relevant areas such as how to initiate the conversation with a loved one and what wishes the person has in terms of how he wants to spend his time and where he wants to be when that time comes. Another kit is available for caregivers of a person with Alzheimer or dementia that helps them initiate the conversation with their loved one. Similarly, another kit is available for parents of children with end of life conditions. Each kit includes four stages that the person should complete. The first stage is called Get Ready and includes an introduction and general information that are relevant to each audience. The second stage is called Get Set and it includes a set of questions that the caregivers should think about and have with their loved ones. The third stage is called Go, which include a set of guidance and information that will help the caregiver go through the needs of their loved ones. It also includes some suggestions in case the caregiver has provided all the needs of his loved one. The final stage is called Keep Going and it aims at sustaining the results of the program. The kits were translated into many languages including French, Hebrew, Korean, Mandarin, Russian, Spanish and Vietnamese. Target Population(s): All caregivers Implementation: Training and resources are available online at no cost. Thus far, over 500,000 people have visited the resources on the website and nearly 290,000 downloaded the Conversation Starter Kit. Goals/Objectives: To make it easier to initiate conversations about dying and to encourage people to talk as often as necessary so that their wishes for end-of-life care are expressed and respected. Evidence of Outcomes: New Idea/Model Approach

No formal research has been conducted on outcomes.

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Additional Information: The Conversation Project website: http://theconversationproject.org/

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The Future is Now Primary Practice: Psychoeducational future planning intervention co-led by peer facilitators Description: The Future is Now was developed by the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago. The program is designed to assist aging family caregivers and adults with developmental disabilities to plan for the future when aging caregivers pass away or are no longer able to provide care. Workshops include family members as well as their relatives with developmental disabilities. In addition to primary caregivers, siblings of individuals with DD and other family members who may take on future caregiving roles are encouraged to participate. Families meet jointly at the beginning and end of each session then break out into separate groups. Training materials for individuals with DD use simple language, pictures, role playing, and other accommodations to assist with communication and understanding. Workshops consists of five 2.5-hour sessions, including breakout sessions for family members and individuals with DD. Each group is co-facilitated by a professional and a peer mentor (family members who have done future planning and self-advocates with DD). Curriculum content includes dreams for the future; expanding support networks; future living arrangements; work, education, and retirement; and safeguards to ensure their future plan will be implemented. Families also receive training in legal and financial aspects of planning. Families set individual planning goals and work towards achieving them. Target Population(s): Caregivers of adults with developmental disabilities Implementation: The program has been implemented at multiple locations across the US and internationally in Switzerland and Ireland. Goals/Objectives: The goal of the training is to decrease stress of family caregivers, increase self-determination and involvement of individuals with I/DD in future planning, and contribute to families taking concrete future planning activities (i.e. letter of intent, residential planning, legal financial planning).

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Evidence of Outcomes: Evidence-Informed Practice

Heller & Caldwell (2006) conducted a evaluation of the program using an experimental design with 48 families. Families were randomly assigned to control and intervention groups based on their service agency. Pre-test and 12-month follow up surveys were completed. A lag design was used so that all families were ultimately provided an opportunity to receive the training. Findings supported decreased caregiver burden and increased opportunities for daily choice making of the individuals with developmental disabilities. The intervention also increased families’ knowledge and confidence in their ability to engage in future planning, secure special needs trusts, and take action on residential planning. Additional Information: DeBrine, E., Caldwell, J., Factor, A., Heller, T., Keiling, K., & Kramer, J. (2009). The future is now:

A future planning training curriculum for families and their adult relatives with developmental

disabilities (Rev. 2nd Ed.). Chicago: Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago.

References: Heller, T., & Caldwell, J. (2006). Supporting aging caregivers and adults with developmental

disabilities in future planning. Mental Retardation, 44(3), 189-202.

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Goods & Services (Instrumental Supports)

¾ Delaware Lifespan Respite Care Network

¾ Illinois’ Home-Based Support Services Program

¾ Interfaith Care-Partners Care Team® Program

¾ Mobile Day Care Program

¾ The New Hampshire Family Caregiver Support Program (NHECSP)

¾ VA Program of Comprehensive Assistance for Family Caregivers

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Delaware Lifespan Respite Care Network Primary Practice: Respite Voucher Program Description: Delaware Lifespan Respite Care Network, through Easter Seals as the lead agency, helps caregivers find and fund respite care. The program provides eligible caregivers with up to $500 in voucher funding to help them pay for respite care - to take a break from caregiving. The program is unique because caregivers find their own respite provider; it could be a friend, a neighbor, or a provider agency. The program does not put stipulations on who can provide the respite care. Caregivers then pay the respite provider and submit an invoice to Easter Seals for reimbursement. In addition, Case Managers provide additional resources and information to those families, including assistive technology. Target Population(s): The program serves caregivers of individuals with disabilities and older individuals across the lifespan Implementation: Funded in part by the Delaware Division of Services for Aging and Adults with Physical Disabilities and Easter Seals Goals/Objectives: The purpose of DLRCN is to ensure that children and adults with disabilities and their caregivers will have easy access to quality, affordable respite care Evidence of Outcomes: New Idea/Novel Approach

No formal evaluation has been conducted on the program. Additional Information: Delaware Lifespan Respite Program website: http://www.easterseals.com/de/explore-

resources/for-caregivers/easterseals-lifespan-respite.html

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Illinois’ Home-Based Support Services Program Primary Practice: Medicaid Support Waiver for individuals with developmental disabilities living at home with family Description: The Illinois Home Based Support Services Program is a family support program that provides individuals with disabilities and their families with an individualized budget to purchase services and supports based on their needs. The program originated in the 1990s as a state-only funded demonstration project. At that time the program focused exclusively on supporting adults with severe disabilities living in the family home, with the goals of strengthening informal, unpaid supports and preventing undesirable out-of-home placements. In 2002, the program was converted into a Medicaid 1915(c) Home and Community-Based Services waiver program. This resulted in some changes to the program, most notably more restrictions on how funding could be used by families (Caldwell, 2006). Eligibility for the program was also broadened to individuals with developmental disabilities regardless of severity or living situation. However, the majority of individuals served by the program live at home with family. Adults in the program receive a budget of approximately two time SSI. Service facilitators, employed by the state, assist families with developing service plans and coordinate payments for approved services by the state. Frequently purchased services include: respite, personal assistance services, home modifications, assistive technology, employment services, social/recreational services, therapies and transportation. The program allows flexibility in hiring individuals to provide services; in more than half of families a family member is receiving payment. Target Population: Individuals with I/DD Implementation: Implemented statewide through a Medicaid 1915(c) HCBS waiver Goals/Objectives: Provide services that allow individuals to remain in their own home or live in a community setting

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Evidence of Outcomes: Evidence-Based Practice Extensive evaluations and research on the program have been conducted since its inception. The original program selected families randomly through a “lottery,” which presented a rare opportunity to study the impact of this program with an experimental design using a randomized control group. Research has demonstrated that program decreased unmet needs for services and out-of-pocket family expenses. Impacts on family caregivers included: fewer out‐of‐pocket disability expenses, better access to health care, greater social and leisure opportunities, greater employment and better mental health of lower income caregivers (Heller et al., 1999; Caldwell & Heller, 2003; Caldwell, 2006). Individuals with I/DD experienced greater community participation and employment outcomes (Heller at al., 1999). Longitudinal research over nearly a decade indicated that the impacts were sustained. Moreover, the program significantly reduced out-of-home residential placements, particularly in institutional settings (Caldwell & Heller, 2007; Heller & Caldwell, 2005). References: Heller, T., Miller, A. B. and Hsieh, K. (1999). Impact of a consumer‐directed family support

program on adults with disabilities. Family Relations, 48, 419–427. Caldwell, J. and Heller, T. (2003). Management of respite and personal assistance services in a

consumer‐directed family support programme. Journal of Intellectual Disability Research,

47(4/5), 352–366. Caldwell, J. & Heller, T. (2007). Longitudinal outcomes of a consumer-directed program

supporting adults with developmental disabilities and their families. Intellectual and

Developmental Disabilities, 45, 161-173. Caldwell, J. (2006). Consumer‐directed supports: economic, health, and social outcomes for

families. Mental Retardation, 44(6), 405–417. Caldwell, J. (2007). Experiences of families with relatives with intellectual and developmental

disabilities in a consumer-directed support program. Disability & Society, 22, 549-562. Heller, T. and Caldwell, J. (2005). Impact of a consumer‐directed family support program on

reduced out‐of‐home institutional placement. Journal of Policy and Practice in Intellectual

Disabilities, 2(1), 63–65.

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Interfaith Care-Partners Care Team® program Primary Practice: Faith-based volunteer care team and respite program Description: Interfaith CarePartners helps congregations form and equip teams of caring volunteers that provide assistance to individuals and families whose welfare and well-being are challenged by chronic illness or disability. The Care Team® Program utilizes the infrastructure of congregations to provide high quality and person-centered informal care to persons who need support with socialization, activities of daily living (ADLs), and instrumental activities of daily living (IADLs), as well as respite for caregivers. Care Team members are trained to offer respite from the constant demands of caregiving, enabling them to prolong care for their loved ones. CarePartners also offers support groups and caregiver education and training programs. Target Population(s): All family caregivers across the lifespan. Implementation: The Care Team® program is limited to greater Houston, Texas area. However, CarePartners provides support to assist other local congregations and communities to establish similar programs. Goals/Objectives: The primary goal of Care Team Program is to support individuals and caregivers to enhance the capacity of caregivers and prolong support for individuals at home. Evidence of Outcomes: Emerging Practice/Model An independent evaluation was conducted on March 2010 that focused on program design and conformity. Results indicated that The Care Team program is an effective tool in supporting impaired and frail elders in the community. In addition, the program provides a volunteer experience that enables participants to be effective and enjoy their work. The accumulated wisdom, experience, structure, and practices have been distilled in an internal publication available to all interested parties. It contains an instructional manual for organizations, information and guidance toolkit for teams, and 30+ continuing education modules. Additional Information: Interfaith Care Partners Website: www.interfaithcarepartners.org

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Mobile Day Care Program Primary Practice: Mobile adult day program Description: The Mobile Adult Day Care Program is Georgia’s concept of providing adult day care, by bringing staff to locations where people need services but there is little to no access to adult day care services. The program allows professional, informal and family caregivers in rural counties a period of respite. Mobile day care (MDC) enables rural communities to have their own day care program while “sharing” staff who travel between locations. The staff along with materials and supplies needed for the day is mobile. They leave from a central location to a rural site which may be located in a church or senior center. Depending on the needs of the community, the site may be open for five to eight hours per day, one to three days each week. A typical staff may include:

x An activity director or recreational therapist, x The activity director’s aide, x An RN supervisor who periodically visits the MDC sites, and may supervise other

programs as well, x A case management coordinator- a social worker that assesses clients for Day Care

attendance, assists families with seeking other available community resources, and conducts reassessments,

x A community development coordinator- responsibilities include public relations, trouble shooting for day center operations, and making local arrangements for educational programs. They are also responsible for developing a coalition of community professionals and caregivers that will assist in promoting the mobile daycare program, and

x An executive director and/ or administrative assistant who handles the budget, payroll, and other tasks at the central office.

The Mobile Day Care Program has encountered a number of challenges in providing this service to rural Georgia. Foremost among these challenges has been gaining the community’s trust. To meet this challenge, the program fosters community involvement through the establishment of local advisory boards, hiring local individuals to work in the program, enlisting local volunteers, and selecting well-known locations in the community (such as a senior center or church) to serve as the service site. Lack of resources is a key concern for rural areas with limited funding to establish their own “bricks and mortar” respite services. By sharing staff between sites, utilizing existing facilities in the communities, and capitalizing on available resources, rural areas are

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able to overcome many resource barriers to provide social day care for clients with Alzheimer’s and/ or other chronic diseases and respite care for their families. Target population(s): Rural caregivers of individuals with dementia and Alzheimer’s and other older adults Implementation: Georgia through 12 area agencies on aging via funding from the Older Americans Act, National Family Caregiver Support Program. The program was also replicated in Louisiana. Goals/Objectives: Allow caregivers in rural counties a period of respite from their 24 hour-a-day caregiving responsibilities for persons with dementia. Evidence of Outcomes: New Idea/Novel Approach

No formal research has been conducted on outcomes. The program was featured in the Supporting Rural Family Caregivers satellite broadcast on March 2008, sponsored by the Department of Health and Human Services. In 2005, it received Honorable Mention from the Archstone Foundation and the Gerontological Health Section of the American Public Health Association for Excellence in Program Innovation. Additional Information: Website: http://aging.dhs.georgia.gov/mobile-day-care

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The New Hampshire Family Caregiver Support Program (NHECSP) Primary Practice: Multi-faceted family support program based on combination of evidence-based programs Description: The NHFCSP is a nationally recognized family caregiver support program that was informed by the work of Dr. Mary Mittelman and colleagues (2006), who developed an evidenced-based caregiver support program at New York University (NYU). Their work provided evidence that a combination of individual counseling and additional support interventions improved overall caregiver well-being, delaying the necessity for nursing home placement. Effective interventions developed at NYU were instrumental in informing the design of the NHFCSP. The NHFCSP is a family-directed program that is managed at the local level through the Service Link Resource Center (SLRC) network. The SLRC network is NH’s single entry point for all NH residents; regardless of age, disability or income levels, to receive information and assistance in navigating the spectrum of long-term services and supports. The NHFCSP incorporates a number of components and is available to anyone caring for a person over the age of 60. Program components include information and referral; a comprehensive caregiver assessment; one-on-one counseling and support; ad-hoc telephone assistance; funding for respite care; flexible funding for caregiving related goods and services; caregiver support programs and training; and an evidence-based caregiver education program (Powerful Tools for Caregivers). Participants in the program may choose to receive any or all of the above services and supports, although financial support for respite care and caregiver supports are limited to those who meet program eligibility criteria. Upon entry into the program a caregiver specialist meets with the caregiver and conducts an assessment of both caregiver and care recipient needs. From this assessment, a plan of support is developed with the family caregiver, utilizing a person- centered approach. Those individuals who are eligible for respite and/or supplemental services have the opportunity to develop a budget for services with assistance from the Caregiver Specialist. The Caregiver Specialist’s role is more of a coach or guide in this process, but the family caregiver ultimately chooses what services they want and how they want to utilize their allotted funds. An Agency with Choice fiscal agent model is utilized to assist caregivers to manage their budget, pay invoices, and manage payroll responsibilities. Target Population(s): Caregivers of older adults, and caregivers of individuals with dementia or Alzheimer's

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Implementation: The program is located in every community in NH, local and state level. The NH Family Caregiver Support Program (NHFCSP) is funded under the Older Americans Act, Title IIIE and administered by the New Hampshire Bureau of Elderly and Adult Services (BEAS) Goals/Objectives: To improve, or at minimum maintain, the family caregiver’s ability to continue to provide care without sacrificing their health and well-being. Evidence of Outcomes: Emerging Practice/Model This program is a combination of various programs into an overall program delivered at the state level. The University of NH conducted research to assess the effectiveness of the program. Assessments of both the caregiver and care receiver were conducted upon entry into the program and again at six months. Researchers found that levels of caregiver burden, depressive symptoms, and mental and physical well-being remained stable even as care recipient functional levels, as measured by activities of daily living (ADLs), showed significant declines. These findings provide promising evidence to support the effectiveness of providing even a short period of organized caregivers supports. Additional Information: Website: http://www.dhhs.nh.gov/dcbcs/beas/familycaregivers.htm References: Vidyalakshmi, S., Fox, S.W., Phillips, K.G. (2014). Transitions in caregiving: Evaluating a person-

centered approach to supporting family caregivers in the community. Journal of

Gerontological Social Work, 57(6-7), 750-765.

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VA Program of Comprehensive Assistance for Family Caregivers Primary Practice: Multifaceted family caregiver support program, including a caregiver stipend Description: The Program of Comprehensive Assistance for Family Caregivers, established by the Caregivers and Veterans Omnibus Health Services Act of 2010, has allowed VA to provide additional supports and services to family caregivers of eligible Veterans injured in the line of duty post 9/11. The program provides the following to caregivers:

x Monthly stipend x Travel expenses (including lodging and per diem when the veteran has to travel for

medical care) x Access to health care insurance through ChampVA (if the caregiver is not

already entitled to care or services under a health care plan) x Mental health services and counseling x Comprehensive VA caregiver training provided by Easter Seals x Respite care (not less than 30 days per year)

Target Population(s): Family caregivers of eligible veterans injured in the line of duty on or after 9/11 (including individuals with traumatic brain injury, psychological trauma or other mental disorders). While this program is currently limited to this specific population, there are proposals pending in Congress to expand the program. Moreover, the VA offers a wide range of caregivers supports more broadly to other caregivers of veterans. Implementation: Since its inception, over 32,000 family caregivers have benefited from the program. Goals/Objectives: Support the veteran to remain at home in the community and improve their health and support the family caregiver. Evidence of Outcomes: Emerging Practice/Model This program is a multifaceted program based on evidence. A formal evaluation of the program is being conducted.

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Additional Information: VA Website: http://www.caregiver.va.gov/support/support_services.asp

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The contents of this report were developed for the University of Illinois at Chicago Family Support Research and Training Center (FSRTC) under a grant from the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RT50320-01-00. However, those contents do not necessarily represent the policy of the Department of Health and Human Services (DHHS), and you should not assume endorsement by the Federal Government.