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In this issue (scroll down to see each section):
- National Lifespan Respite Conference was a Huge Success!
- New from ARCH
- Federal Agency News
- New Reports and Resources
- Research
- Policy Updates
- Upcoming Events and Webinars
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2019 National Lifespan Respite Conference |
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Respite Funding Opportunities
ARCH frequently posts funding opportunities from the federal government as well as national and local foundations and other philanthropic entities. A new announcement from ACL on National Volunteer Care Corps and funding announcements from the Retirement Research Foundation and the Brookdale Foundation Group were recently posted. Be sure to check out new Funding News and Opportunities on the ARCH website and visit frequently.
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In case you missed them - recently archived ARCH Webinars
Person-Centered Planning, Thinking and Practice for Respite with Shawn Terrell, Office of Policy Analysis and Development, Administration for Community Living; Alixe Bonardi and Bevin Croft, Co-Directors, National Center on Advancing Person Centered Practices and Systems (NCAPPS).
Putting a dollar sign to it: The FRIENDS Cost Analysis Template Adapted for Respite with Casandra Firman, ARCH and FRIENDS National Resource Center and MaryJo Caruso, FRIENDS National Resource Center
Building Pathways to Sustainability - Resources from the Aging and Disability Business Institute with Marisa Scala-Foley, Director, Aging and Disability Business Institute at the National Association for Area Agencies on Aging (n4a)
Opportunities for Innovation: Home Care Worker Cooperatives with Margaret Bau, Cooperative Development Specialist at USDA Rural Development in Wisconsin and Joseph Lugo, Manager of ADRC/No Wrong Door, Office of Consumer Access and Self-Determination, Administration for Community Living.
Volunteer Respite – Putting the Pieces Together: Implementation from Recruitment to Matching with MaryJo Caruso, FRIENDS National Resource Center and Alliance for Respite Care, PA.
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May is Older Americans Month |
Every May, the Administration for Community Living leads our nation’s observance of Older Americans Month. Read More.
The 2019 theme, Connect, Create, Contribute, encourages older adults and their communities to:
- Connect with friends, family, and services that support participation.
- Create by engaging in activities that promote learning, health, and personal enrichment.
- Contribute time, talent, and life experience to benefit others.
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ACL’s Voluntary Consensus Guidelines for State Adult Protective Services (APS) Systems
The Administration for Community Living (ACL) has held a series of webinars to obtain feedback on the draft updates to the National Voluntary Consensus Guidelines for State APS Systems (Guidelines). ACL published the Guidelines in 2017 to provide the APS field with guidance about effective practices based on findings from published studies as well as experiences from the field. This year, ACL is updating the Guidelines to incorporate new research findings and new areas of interest in APS practices and policies.
Register for the last webinar to be held Friday, May 10, 2019, 2:00 – 3:30 p.m. ET. Questions to be addressed include appropriateness of the draft updates, what additional topics should be added, topic areas where research on APS practices is lacking, and what is the most efficient way to provide input about the Guidelines in the future. The draft revised Guidelines are available from the ACL website. Comments on all parts of the original and revised Guidelines are welcome. Submit by May 31st, 2019 through a Request for Information link on the Public Input page.
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Research Brief: Administration for Community Living Supports for Family Caregivers Across the Lifespan
Administration for Community Living AGing Integrated Database (AGID)
This research brief, available on the AGID (Aging Integrated Database) website, serves as an introduction to the National Family Caregiver Support Program and related programs administered by ACL that provide support to caregivers of older adults as well as caregivers of persons with disabilities. In 2016, the National Family Caregiver Support Program provided support services to more than 212,000 individual caregivers. This included 61,989 caregivers who received respite services and 120,100 individuals who received counseling. ACL also reached more than 20 million caregivers with their informational services.
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Caregiving Infographic Featuring 2015-2017 Combined National Data from the Behavioral Risk Factor Surveillance System (BRFSS)
Centers for Disease Control and Prevention
Informal or unpaid caregivers are the backbone of long-term care provided in people’s homes. While some aspects of caregiving may be rewarding, caregivers can also be at increased risk for negative health consequences. These may include stress, depression, difficulty maintaining a healthy lifestyle, and staying up to date on recommended clinical preventive services. Read the new infographic overview and the state by state infographics on caregiving.
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New Reports and Resources |
2018 Support Needs of People With I/DD and Co-Occurring Mental Health Challenges and Their Families
The Arc, 2019
This issue brief focuses on the needs of individuals with intellectual and developmental disabilities who are also experiencing mental illness. The Arc organized several focus groups and worked with a national panel of young adults with co-occurring issues. The findings from these activities are summarized and recommendations are included for the development of new training, research, and greater public awareness. One recommendation is to expand training for caregivers of these individuals to help reduce caregiver burden. Consistently in the focus groups, parents discussed the challenges of managing stress and burden. Increasing evidence-based training to help caregivers identify and manage stresses may help support families.
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Home Alone Revisited: Family Caregivers Providing Complex Care
AARP Public Policy Institute, April 2019
Home Alone was the first national study of how family caregivers are managing medical/nursing tasks, normally performed by trained professionals in hospitals. Findings from the new study, Home Alone Revisited, include:
- Family caregivers receive little training in how to perform medical/nursing tasks.
- Most family caregivers who perform these tasks believe they have no choice.
- Seven out of ten family caregivers performing these tasks include pain management.
- Social isolation compounds difficulties with complex care, across generations and cultural groups.
Although the CARE Act is now law in 42 states, only 20% of family caregivers were given at least 24 hours’ notice of hospital discharge. One of the report recommendations is for employers to provide access to discounted respite. Also read the infographic on Generational Differences among family caregivers providing complex care.
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Medicaid Home and Community-Based Services Enrollment and Spending
Kaiser Family Foundation, April 2019
This issue brief, using data from KFF’s annual state survey, found that more than 4 1/2 million enrollees received $82.7 billion in Medicaid HCBS in 2017. Among the findings:
- 86% of all Medicaid HCBS enrollment and 93% of spending were for services provided at the state option. Home health state plan services are the only mandatory HCBS.
- Services provided through waivers account for the majority of HCBS enrollment.
- The national average per enrollee for Medicaid HCBS spending was about $17,800 nationally, varying substantially among states.
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Key State Policy Choices About Medicaid Home and Community-Based Services
Kaiser Family Foundation, April 2019
This issue brief provides the latest data from the KFF’s annual survey of Medicaid HCBS program policies in the 50 states and DC. States use Medicaid HCBS to advance community integration and offset the historical bias toward institutional care. States use more recent HCBS state plan authorities, including Section 1915 (i) and Community First Choice (CFC), to grow or enhance the populations and services they cover under waivers. In response to key federal regulations affecting HCBS, states continue to make policy changes. Currently most states have utilization caps on services including respite.
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Key Questions About Medicaid Home and Community-Based Services Waiver Waiting Lists
Kaiser Family Foundation, April 2019
Using KFF’s annual survey of state Medicaid home- and community-based services programs, including tables with state-level data, this issue brief gives the latest data and answers key questions about HCBS waiver waiting lists. As of 2017, more than 707,000 people are on HCBS waiver waiting lists in 40 states. Over 1/4 are seniors and adults with physical disabilities.Non-expansion states (69%, 13 of 19) had a bigger increase in waiver waiting list enrollment than in expansion states (41%, 13 of 32) between 2013 and 2017. The populations served and their definition vary among states, and not all on waiting lists may qualify for services.
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The Impact of Caregiving on Military Children Report
Elizabeth Dole Foundation, National Military Family Association and Wounded Warrior Project
April 2019
To date, no evidence-based research has been conducted on military caregiver children. In partnership with National Military Family Association and Wounded Warrior Project, the Elizabeth Dole Foundation hosted an Impact Forum in July 2018. It brought together researchers, experts, partners, and caregivers to examine caregiving's impact on military children. Recommendations include: "Improve access to respite and self-care opportunities to allow the caregiver parent to recharge and properly care for their own needs as well as the needs of their family". Read the Children of Military Caregivers Impact Forum Report to find out what was learned.
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Committee Letter: VA Concurs with all Recommendations Presented by Veterans’ Families, Caregivers and Survivors Federal Advisory Committee
Elizabeth Dole Foundation, March 29, 2019
The Department of Veterans Affairs has concurred in principle with all twelve recommendations from the Committee formed by the Secretary to explore and address gaps in services and support for Veterans’ families, caregivers, and survivors. Recommendation 6 states: "Finding and taking advantage of respite care continues to be one of the biggest struggles for caregivers and families. Connecting these groups to respite care is critical because it lessens the stress of their enormous responsibilities, reduces the strain on their mental and physical health, and ultimately helps them offer better support to their veterans. Therefore, the Federal Advisory Committee recommended the VA conduct a thorough analysis of the need for respite care resources, their availability, and their effectiveness. Also, the committee recommended that the VA offer a range of respite care programs to improve access to and delivery of respite care for caregivers and family members." The 12 recommendations are under final review.
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The Caregiver's Guidebook
Novartis and National Alliance for Caregiving, 2018
Caregivers face a range of challenges that include assuming the role of emotional supporter, decision maker, and advocate for care recipients. The Caregiver’s Guidebook offers checklists and worksheets to help caregivers organize information and daily tasks, and gain insight into what to expect along the caregiving journey. In addition to the guidebook, the forCare mobile app is available for iPhone providing information, tools, and resources to help caregivers in supporting their loved ones.
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Not Just Along For The Ride: Families Are The Engine That Drives Pediatric Home Health Care
Cara L. Coleman, Health Affairs Blog, April 18, 2019
The author knows first hand that "families of children and youth with special health care needs and disabilities are the engine that drive home- and community-based services for their children." She shares her experience and that of other parents who provided pediatric home health care. She states that "providers, pediatric home care, payers, and policy makers must...partner with families in the co-design of family-centered care, policies, and programs". They must respect and support the families, who without them, the pediatric home care system cannot exist. Read the blog.
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Health-Promoting Self-Care in Family Caregivers of People With Dementia: The Views of Multiple Stakeholders
Deborah Oliveira, Steven H Zarit, and Martin Orrell, The Gerontologist, April 6, 2019
This study explored the views of carers and other stakeholders about the factors related to health-promoting self-care behavior. The authors found that "poor service organization and coordination, lack of respite breaks, lack of continuity of care, poor staff attitudes, as well as difficulty to prioritize own needs, health impact, financial impact, and relationships and feelings were related to poorer carer health-promoting self-care behavior." This often led to crisis situations of carers’ health issues, need for emergency services, and unplanned care home placement. Carers need high-quality respite to have time for themselves, better coordinated and compassionate services support, and more education and self-awareness about their own needs. Read the abstract.
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Adult Day Program services for seniors with dementia: An innovative model of community–college partnership (Innovative Practice)
Mirou Jaana, Dementia, First Published April 3, 2019
This study describes and evaluates an innovative Adult Day Program model resulting from a community–college partnership. Three data sources were used, including existing documents, seniors' records, and a survey of caregivers. The historical development of the Adult Day Program and its partnership is presented. The model proved the feasibility and satisfaction in the community served, and demonstrated a real setting opportunity for students’ training. Efforts to support the expansion and replication of services based on this model in other settings should be considered. Read the abstract.
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Self-Direction
The Journal of Gerontological Social Work, Volume 62, 2019
This special self-direction issue is available for free online through June 2019. Published as a ten-year follow-up to the Cash & Counseling results, the articles present findings on what unmet needs remain. How do people with disabilities and their caregivers rate the option which allows them to direct their own home and community-based services and supports and individualize their own budgets? What does the latest research show about what is needed to improve this approach and make this option more widely available? Also included are the results of the Council of Social Work Education's project with nine schools of social work to develop training modules to promote person-centered planning and self-direction.
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Bipartisan, Bicameral Lifespan Respite Reauthorization Bill (S. 995; H.R. 2035) Introduced
Senator Susan Collins (R-ME) and Senator Tammy Baldwin (D-WI) introduced the bipartisan Lifespan Respite Care Reauthorization Act of 2019 (S. 995) in the Senate on April 4, 2019. The program's long-time champions, Rep. Jim Langevin (D-RI) and Rep. Cathy McMorris Rodgers (R-WA), introduced the bill (H.R. 2035) in the House on the same day. The bill authorizes $200 million over five years, a significantly higher authorization level than in past reauthorization bills. For a bill summary, bill text, Congressional press releases, and legislative updates, visit the National Respite Coalition's Lifespan Respite Reauthorization Center.
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House Subcommittee on Labor-HHS-Education Appropriations Bill Reports Out FY2020 Funding Bill
On April 30, 2019, the House Subcommittee on Labor-HHS-Education Appropriations marked-up the FY 2020 funding bill for programs administered by the U.S. Departments of Health and Human Services, Labor and Education and related agencies, including Social Security. "In total, the draft bill includes $189.8 billion in discretionary funding, an increase of $11.7 billion over the 2019 enacted level and $47.8 billion over the President’s 2020 budget request." The bill provides $245 million in total for Family Caregiver Services, an increase of $26 million above the 2019 enacted level. As we go to press, we do not have the specific line-item numbers for the Lifespan Respite Care Program, the National Family Caregiver Support Program, or the RAISE Act. We expect more detailed funding levels to be released when the when the bill is considered by the full House Appropriations Committee this Wednesday, May 8. See Subcommittee Press Release and funding bill.
The ARCH National Respite Coalition (NRC) submitted detailed testimony to the subcommittee in early April in support of $20 million for the Lifespan Respite Care Program. In addition, the NRC sent a letter from 29 national organizations to the the Chair and Ranking Member of the House Labor-HHS-Education Appropriations Subcommittee in support of $20 million for Lifespan Respite and $202.7 million for the National Family Caregiver Support Program for FY 2020. Last March, 36 House Members sent a bipartisan letter spearheaded by Reps. Jim Langevin (D-RI) and Rep. Brian Fitzpatrick (R-PA) to the Appropriations Committee requesting $20 million for Lifespan Respite.
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Compare Medicare-for-all and Public Plan Proposals
Kaiser Family Foundation
Want to read more about the mulitiple Medicare-for-all and other Public Plan proposals such as Medicaid buy-in? The Kaiser Family Foundation is hosting a very useful webpage on side-by-side comparisons all of the proposals introduced in the 116th Congress to date. Keep checking back for updates.
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Medicaid Services Investment and Accountability Act of 2019 Signed into Law
In early April, the Senate passed the Medicaid Services Investment and Accountability Act of 2019 (H.R. 1839), passed previously by the House, that extends protections for Medicaid recipients of home and community-based services against spousal impoverishment for another six months; provides an additional $20 million for the Money Follows the Person Rebalancing Demonstration; extends the Community Mental Health Services Demonstration Program through June 30, 2019; and establishes a State Medicaid option to provide coordinated care to children with complex medical conditions through health homes. The bill was signed into law on April 18, 2019 (Public Law No: 116-16).
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Supporting America's Caregivers and Families Act Introduced in the Senate
The Supporting America's Caregivers and Families Act (S. 1017) was introduced in the Senate on April 3, 2019, by Senators Richard Durbin (D-IL) and Tim Kane (D-VA). The bill would amend the Older Americans Act to raise the authorization level for the National Family Caregiver Support Program to $360,000,000 for each of fiscal years 2020 through 2024; increase the use of caregiver assessments; establish a National Family Caregiver Resource and Technical Assistance Center; and provide assistance to the aging network on business acumen, capacity building and other sustainability strategies. Read the bill.
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2019 Global Intergenerational Conference, Bridging the generations
Generations United's 20th Biennial Conference co-hosted by Bridge Meadows
Hilton Portland Downtown, Portland, OR
June 12-14, 2019
The one-of-a-kind 20th biennial intergenerational conference provides an opportunity for professionals from all over the world to learn, network and share about innovative research, policies, and practices in the intergenerational field. Read more and register.
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The Second Global Carework Conference
Toronto, Canada
June 9-11, 2019
The Carework Network is hosting a three-day conference for carework researchers in Toronto, Canada from June 9 - June 11, 2019. The conference will focus on major issues relating to caregiving, such as "how inequality structures carework" and "how caring work is recognized and compensated". The conference welcomes scholars and advocates in caregiving from all academic fields, non-profit organizations, and public and private sector organizations to submit proposals for papers, fully-constituted panels, or workshops. To learn more, click HERE.
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This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration for Community Living. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. These contents, however, do not necessarily represent the policy of the U.S. Department of Health and Human Services and endorsement by the Federal Government should not be assumed. |
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