ARCH ARCH Quick News Updates

ARCH Quick News Update, October 22, 2012

Fri, 21 Dec 2012 17:03:40 GMT

Events

New Jersey

The Family Support Center of New Jersey is hosting the 2012 National Caregivers Conference, which will be held on Thursday, November 1, 2012 at the Renaissance Woodbridge Hotel in Iselin, New Jersey. "Caregiving at the Crossroads" will concentrate on the critical importance of caregivers in this country. The conference will provide caregivers and professionals with information on easily accessible and cost effective support to all populations, regardless of age or disability. Register at [1]www.nationalcaregiversconference.org. The conference will also serve as a networking opportunity for family members and professionals.

The conference will be preceded by a Lifespan Respite Summit on October 31, from 9 am to 1 pm at the Renaissance Woodbridge Hotel. Stakeholders in the respite care delivery system will provide input into the creation and implementation of a coordinated system of accessible respite for families and caregivers.

Massachusetts

The Massachusetts Lifespan Respite Coalition will host the first annual CARE Conference: Connecting and Advocating Respite for Everyone on Friday, November 2, 2012. The event will be held from 8:00 AM to 4:00 PM at the Yawkey Special Olympics Training Center, Marlborough, MA. Everyone, including family caregivers, are invited and there is no charge to attend. For more information, follow this link: [2]http://www.eventbrite.com/event/3858031476#

Ohio

The Ohio Respite Coalition is hosting a Lifespan Respite Summit on Tuesday, November 20th, 8:00 a.m. – 10:30 a.m. at the Ohio Statehouse Atrium, Columbus. Come for breakfast and hear about –
• Medicaid managed care plans for respite
• The use of respite in Medicaid
• The Ohio Respite Coalition’s strategic plan

To request a registration form, email [3]ohiorespitecoalition@gmail.com[4] or call Mozelle Mackey at 614-466-0749

New Reports

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children
National Council on Disability
September 27, 2012

More than 4 million parents—6 percent of American mothers and fathers—have disabilities. This number is expected to rise as a result of social integration, civil rights, and new adaptive technologies. The number of veterans with service-connected disabilities, who are parents or will become parents, will contribute to the expected increase. The report provides a comprehensive review of the barriers people with diverse disabilities—including intellectual and developmental, psychiatric, sensory, and physical disabilities—experience when
assumng parental roles. The need for respite and many other legal, social and health resources are documented. To download the report, [5]click here.

Home Alone: Family Caregivers Providing Complex Chronic Care
AARP Public Policy Institue
October 2012

Authors: Susan C. Reinhard, RN, PhD, FAAN, Senior Vice President and Director, AARP. Carol Levine, MA, Director, Families and Health Care Project, United Hospital Fund & Sarah Samis, MPA, Senior Health Policy Analyst, United Hospital Fund

This [6]report documents how the role of family caregivers has dramatically expanded to include performing complex medical/nursing tasks. The AARP Public Policy Institute and the United Hospital Fund undertook the first nationally representative population-based online survey of 1,677 family caregivers to determine what medical/nursing tasks they perform. This report reveals the complexity and difficulty of specific tasks, the lack of support and training family caregivers receive, and the effect on their quality of life.

November is National Family Caregivers Month

The theme for National Family Caregivers Month this year is Family Caregivers Matter. The purpose of NFC Month is
* To raise awareness of family caregiving issues with multiple audiences
* To celebrate the efforts of family caregivers
* To educate family caregivers about self-identification
* To increase support for family caregivers

The National Family Caregivers Association has developed an array of logos, posters, press kits and other information to help get the word out. To access this information and to help plan your own state or community activities, [7]click here.

To view previously released ARCH Quick News Updates, see the [8]News Archive

ARCH National Respite Network and Resource Center
4016 Oxford Street
Annandale, VA 22003
[9]www.archrespite.org
703-256-2084

This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration for Community Living, Administration on Aging. 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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References

1. http://www.nationalcaregiversconference.org/
2. http://www.eventbrite.com/event/3858031476
3. mailto:ohiorespitecoalition@gmail.com?subject=Lifespan%20Respite%20Summit
4. mailto:ohiorespitecoalition@gmail.com?subject=Lifespan%20Respite%20Summit
5. http://www.ncd.gov/publications/2012/Sep272012/
6. http://www.aarp.org/home-family/caregiving/info-10-2012/home-alone-family-caregivers-providing-complex-chronic-care.html
7. http://nfca.typepad.com/nfcmonth_2012/
8. http://www.icontact-archive.com/cm/rRNQRindhS5HIvh7qIc3x8n1O0j_Aw1e-DU8HjWzrsgPa-jMFLUJsA==?w=3
9. http://archrespite.org/
10. http://www.facebook.com/archrespite?ref=hl
11. http://twitter.com/archrespite
12. mailto:jbkagan@verizon.net?subject=ARCH%20respite%20information

ARCH Quick News Update, Sept 24, 2012

Mon, 01 Oct 2012 14:25:59 GMT

Events

8th International Short Break Association Conference

Just two weeks until the 8th International Short Break Association Conference inToronto, Ontario, Canada. Join us October 10-12 at the Le Meridien King Edward Hotel. Delegates arriving early on October 9 are invited to join the International & Canadian Committees along with other early arrival delegates in the lobby Consort Bar for networking & socializing reception at 7 pm with a performance by [1]Melba Mercer. To register and see the complete conference program, visit [2]www.isba2012.net.

National Forum on Disability Issues

Edward M. "Ted" Kennedy, Jr., and Rep. Cathy McMorris Rodgers (R-WA) are speaking on behalf of their respective parties at the [3]National Forum on Disability Issues (NFDI) to present their campaign's positions on matters relating to Americans with disabilities ([4]see full press release). The event takes place between 12:30 p.m. and 3:30 p.m., Friday, Sept. 28 in Columbus, Ohio.

Over [5]80 other disability and aging organizations are sponsoring this
non-partisan forum. It is the only national event that brings together
representatives from President Barack Obama's and former Massachusetts Gov. Mitt Romney's campaigns and provides them with a platform to present their candidate's policy positions on disability issues. You can register for the live webcast by visitng the [6]National Forum on Disability Issues.

New Reports

Maintaining and Strengthening Supplemental Security Income for Children with Disabilities by Rebecca Vallas and Shawn Fremstad September 12, 2012

Supplemental Security is an effective support for children with severe
disabilities and their families. Research shows that Supplemental Security:
* Reduces costly and harmful institutionalization of children with severe
disabilities by supporting family-centered care
* Reduces poverty and increases economic security by offsetting some of the extra costs and lost parental income associated with raising a child with a severe disability
* Serves as a critically important complement to other services provided to children with disabilities

About 1.3 million—or 1.6 percent—of U.S. children receive Supplemental Security Income benefits. Under the Social Security Administration’s definition of childhood disability, a child may qualify for Supplemental Security if she or he has a medically determinable physical or mental impairment that results in marked and severe functional limitations and if she or he lives in a household with very low-income and less than $3,000 in assets. SSI provides important economic support to the most vulnerable families despite the modest monthly amount. While most families rely on SSI to for basic sustenance, SSI funds can be used to help pay for respite. To read the full report, [7]click here.

Across the States 2012: Profiles of Long Term Services and Supports by AriHouser, Wendy Fox-Grage, Kathleen Ujvari, AARP Public Policy Institute
September 2012

This report is the ninth edition of the AARP Public Policy Institute’s state
long-term services and supports reference report and describes comparable state-level and national data for more than 140 indicators. To see the full report, [8]click here.

Meeting the Needs of Diverse Family Caregivers by Susan C. Reinhard, PhD, RN, Rita Choula, AARP Public Policy Institute
September 2012

Utilizing qualitative research employing a series of focus groups with Hispanic and African American family caregivers, nurses and social workers across the nation, the AARP Public Policy Institute developed this report to explore and address the needs of racially and ethnically diverse family caregivers to help reduce unnecessary hospitalizations and nursing home care, and improve care transitions. To read the full report,[9] click here.

ARCH National Respite Network and Resource Center
4016 Oxford Street
Annandale, VA 22003
[10]www.archrespite.org
703-256-2084

This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration on Aging. 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.

[11] Join us on Facebook

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References

1. http://www.isba2012.net/en/agenda/other-details/109-melba-mercer.html
2. http://www.isba2012.net/
3. http://www.nfdi.org/
4. http://www.aucd.org/template/news.cfm?news_id=8210&parent=16&parent_title=Home&url=/template/index.cfm?
5. http://www.nfdi.org/sponsors/
6. http://www.nfdi.org/webcast_register/
7. http://www.americanprogress.org/issues/poverty/report/2012/09/10/37115/maintaining-and-strengthening-supplemental-security-income-for-children-with-disabilities/
8. http://www.aarp.org/home-garden/livable-communities/info-09-2012/across-the-states-2012-profiles-of-long-term-services-supports-AARP-ppi-ltc.html
9. http://www.aarp.org/home-family/caregiving/info-09-2012/meeting-the-needs-of-diverse-family-caregivers-insight-AARP-ppi-ltc.html
10. http://www.archrespite.org/
11. http://www.facebook.com/archrespite?ref=hl
12. http://twitter.com/archrespite

ARCH Quick News Update

Thu, 02 Aug 2012 16:47:40 GMT

The Mental Health and Substance Use Workforce for Older Adults: In Whose Hands? by Jill Eden, Katie Maslow, Mai Le, and Dan Blazer, Editors; Committee on the Mental Health Workforce for Geriatric Populations; Board on Health Care Services; Institute of Medicine (IOM), July 10, 2012

At least 5.6 million to 8 million - nearly one in five - older adults in America have one or more mental health and substance use conditions, which present unique challenges for their care. With the number of adults age 65 and older projected to soar from 40.3 million in 2010 to 72.1 million by 2030, the aging of America holds profound consequences for the nation. Following its 2008 report highlighting the urgency of expanding and strengthening the geriatric health care workforce, the IOM was asked by the Department of Health and Human Services to undertake a complementary study on the geriatric mental health and substance use workforce. An expert committee assessed the needs of this population and the workforce that serves it. To read the report online or to download, visit the IOM website at http://www.iom.edu/Reports/2012/The-Mental-Health-and-Substance-Use-Workforce-for-Older-Adults.aspx

Americans With Disabilities: 2010, by Matthew W. Brault, U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau, P70-131, Issued July 2012

The report, Americans with Disabilities: 2010, presents estimates of disability status and type and is the first such report with analysis since the Census Bureau published statistics in a similar report about the 2005 population of people with disabilities. According to the report, the total number of people with a disability increased by 2.2 million over the period, but the percentage remained statistically unchanged. Both the number and percentage with a severe disability rose, however. Likewise, the number and percentage needing assistance also both increased. To see the complete report, visit http://www.census.gov/prod/2012pubs/p70-131.pdf

Raising Children with Emotional and Behavioral Problems, Rise, 18, Spring 2011

This magazine article includes personal accounts from parents of children with mental health issues about their need for respite and family support.

Abstract: Children who come to the attention of the child welfare system have very high rates of emotional and behavioral problems. Many families, especially those in isolated or poor communities, have trouble accessing effective supports. Above all, families need service providers to listen and become their partner in caring for the child. In this issue, parents write about caring for their children and themselves. (Author abstract)

Printable version (PDF): http://www.risemagazine.org/PDF/Rise_issue_18.pdf

Rise supporters include the Annie E. Casey Foundation, Casey Family Programs, Center for the Study of Social Policy, Child Welfare Fund, Hedge Funds Care, the Hite Foundation, North Star Fund, NYC Children’s Services, New Yorkers for Children, NYU Sunshine Fund, Steve and Lauren Pilgrim and Gary Pilgrim, and the Van Ameringen Foundation.

American Time Use Survey -- 2011 Results, by US Bureau of Labor Statistics (BLS), June 22, 2012

This June BLS press release summarized data about eldercare providers. In 2011, 16 percent of the U.S. civilian noninstitutional population age 15 and over were eldercare providers. This and other information about eldercare providers and the time they spent providing care were collected for the first time in the 2011 American Time Use Survey (ATUS). This release also includes the average amount of time per day in 2011 that individuals spent in various activities, such as working, household activities, childcare, and leisure and sports activities. To see the data summary, visit the BLS site at http://www.bls.gov/news.release/atus.nr0.htm

ARCH Quick News Update

Fri, 22 Jun 2012 20:06:06 GMT

Next Wednesday, June 27, 2012 at 2pm, EDT, the U.S. Department of Health and Human Services (HHS) will hold a webinar on “Managed Long-Term Services and Supports: Engaging in the Stakeholder Process.” For more information and to register, click here.

Archived Webinar from the Family Caregiver Alliance: Caregiver Assessment I: Why and What Should We Assess? (part 1 of a two-part series)

The session covered: Benefits of Respite for Family Caregivers; Who, What, Why, When, Where and How Aspects of Assessments; Relevant Assessment Domains; Voice From the Field: A Family Consultant's Perspective; and Updates on Caregiver Assessment Instruments - Where Do We Go From Here?

For those who missed the webinar or those who want to listen to it again click here.

Condition-Specific Profiles for Children with Special Health Care Needs

When engaged in respite needs assessments or strategic plans for future activities, access to specific state data on the number of individuals with certain conditions can be very helpful. Explore national and state level data using the Data Resource Center for Child and Adolescent Health’s newly released condition-specific profiles. These profiles allow you to customize data briefs for your state or the nation on child health conditions such as Asthma, Autism or Depression.

For more information: http://childhealthdata.org/browse/snapshots?geo=1

State Medicaid Integration Tracker©

On a monthly basis, the National Association of States United for Aging and Disabilities (NASUAD) publishes a website “Tracker” tool that focuses on state actions in managed care for people who receive Medicaid-funded long-term services and supports (LTSS) and on state initiatives relating to services and costs. The Tracker includes updates on State Demonstrations to Integrate Care for Dual Eligible Individuals, the Balancing Incentives Payment Program (BIPP), states developing or implementing Medicaid State Plan amendments under §1915(i), and states pursuing the Communities First Choice Option under §1915(k).

For more Information: http://www.nasuad.org/medicaid_reform_tracker1.html

Medicaid and HCBS Data Update – PAS Center

The Center for Personal Assistance Services (PAS) website presents various data and resources related to Personal Assistance Services by state. Recent updates include two sets of information concerning Medicaid home-and community-based services (HCBS). Users can select a state or select a specific topic such as state statistics, program data, and other PAS projects.

For state-by-state information on HCBS Medicaid waivers, http://pascenter.org/state_based_stats/pick_a_state.php?url=http%3A%2F%2Fpascenter.org%2Fstate_based_stats%2Fmedicaid_waivers_info.php

Archived Webinar from Care.com and the National Alliance for Caregiving: Supporting Employees Caring for a Child with Special Needs.

Care.com hosted a free webinar: Supporting Employees Caring for a Child with Special Needs. The speakers of this webinar were Gail Hunt, President & CEO from the Alliance and Dr. Deborah Viola, Research Scholar, Center for Long Term Care Research & Policy, School of Health Sciences and Practice, New York Medical College. The following questions were answered during the webinar:

•· Why are caregiver support programs important to both employers and employees?
•· What are the key elements of a successful caregiver support program?
•· What are the key employer benefits to providing such a program?

For those who missed the webinar or those who want to listen to it again click here.

ARCH Quick News Update

Tue, 19 Jun 2012 21:18:54 GMT

Bridging the Aging and Developmental Disabilities Service Networks: Challenges and Best Practices

March 15, 2012

People with developmental disabilities are aging at unprecedented rates and have unique health and service needs. Adults with developmental disabilities have a higher risk of developing chronic health conditions at younger ages than other adults, due to the confluence of biological factors related to syndromes and associated disabilities. They also may face poor access to adequate health care, as well as lifestyle and environmental issues. These unique service needs of this population pose new challenges for existing service networks. Traditionally the aging and developmental disabilities services systems have run on parallel tracks. Large-scale legislative changes that target long-term care services and supports will require greater communication and coordination between the two systems. In this time of great transformation, it is critical for the two systems to work together as their populations face similar needs including managed long-term, integrated care for people who are dually eligible for Medicaid and Medicare, and rebalancing initiatives that promote community living. This report from the Institute on Disability and Human Development at the University of Illinois at Chicago identifies policy and service delivery issues pertaining to adults aging with developmental disabilities and their families. This initiative includes discussion of the differential and shared philosophies and values underpinning the aging and developmental disability networks. It also provides information for the Administration on Developmental Disabilities (ADD) and other federal agencies on being catalysts for promoting progressive policies across aging and disability populations. And finally this report recommends opportunities to enhance collaboration among the aging, disability, and long-term care networks.

Citation: Factor, A., Heller, T., & Janicki, M. (2012). Bridging the aging and developmental disabilities service networks: Challenges and best practices. Chicago: Institute on Disability and Human Development, University of Illinois at Chicago.

This report can be downloaded at http://www.rrtcadd.org.

The Risk and Prevention of Maltreatment of Children with Disabilities

June 2012

This bulletin from the Child Welfare information Gateway describes child abuse and neglect of children with disabilities in terms of the scope of the problem, risk factors, and strategies for prevention, including those that incorporate respite. The background section looks at statistics and research and highlights what might be happening with families that come into the child welfare system. The second section offers tips to identify and assess abuse and neglect in children with disabilities, respond collaboratively, and locate training resources.

URL: http://www.childwelfare.gov/pubs/prevenres/focus/
PDF: http://www.childwelfare.gov/pubs/prevenres/focus/focus.pdf

HHS Announces Funding to Help Seniors, People with Disabilities Access Long-Term Services & Supports

The U.S. Department of Health and Human Services (HHS) has announced $25 million in funding under the Affordable Care Act to help states provide home and community-based long-term services and supports to seniors and people with disabilities. This funding will support Aging and Disability Resource Centers (ADRC) in nearly every state. The U.S. Department of Veterans Affairs’ will make an additional $27 million available through VA Medical Centers to help Veterans with disabilities receive home and community-based services.

For News Release: http://www.hhs.gov/news/press/2012pres/05/20120531d.html

From the Scan Foundation:

June 6, 2012

Fact Sheets on Growing Demand for Long-Term Care in CA and the U.S.

• Growing Demand for Long-Term Care in the U.S.

• Growing Demand for Long-Term Care in California

Health Affairs: The Care Span Special Issue

The June 2012 issue of Health Affairs is focused exclusively on the Care Span initiative, featuring stories on aging and long-term care.

• To read the Table of Contents, please click here.

• To read the letter from the editor-in-chief, "Going The Distance To Improve The Care Span," by Susan Dentzer, please click here.

• To read the article, "Dignity-Driven Decision Making: A Compelling Strategy For Improving Care For People With Advanced Illness," by Bruce C. Vladeck and Erin Westphal, please click here

HHS Clearinghouse on Long Term Services and Supports Updated

May 31, 2012

Department of Health and Human Services announced its LTSS clearinghouse has been updated.
Learn more now.

ARCH Quick News Update

Fri, 25 May 2012 16:30:46 GMT

Stepping Up for Kids: What Government and Communities Should do to Support Kinship Families

May 23, 2012

The Annie E . Casey Foundation | KidsCount Policy Report

As more of America's children are raised by relatives other than their parents, state and local governments need to do better in helping these families cope with an array of financial and emotional challenges, a new report concludes. Donna Butts of the advocacy group Generations United estimated that kinship caregivers save U.S. taxpayers more than $6 billion a year by sparing state and local governments the cost of foster care. "We shouldn't then just leave them alone," Butts said. "They need information, they need support, they need respite. Both the children and the caregivers need help." The report includes highlights from a program in Allegheny County in Pennsylvania. The county partnered with A Second Chance, Inc. (ASCI), a licensed foster care agency designed to meet the unique needs of kinship care families. As part of its comprehensive approach, ASCI provides kinship care training specially designed to address the dynamics of kinship families; intensive in-home services; emergency assistance, including a clothing bank and flexible funding for other necessary expenses; transportation; and respite services.

Report: http://www.aecf.org/~/media/Pubs/Initiatives/KIDS%20COUNT/S/SteppingUpforKids2012PolicyReport/SteppingUpForKidsPolicyReport2012.pdf

Latino Alzheimer’s Disease Caregivers and Depression: Using the Stress Coping Model to Examine the Effects of Spirituality and Religion

May 15, 2012

Sun, Fei and David R. Hodge. (2012). Journal of Applied Gerontology.

Abstract

This study used stress coping theory to examine the effects of spirituality and religion on depression among a sample of Latino family members caring for a person with Alzheimer’s disease (AD) in the United States. Participants consisted of 209 Latino caregivers (CGs) drawn from baseline data from the Resource for Enhancing Alzheimer’s Caregivers Health (REACH) II clinical trial. The findings indicate that church attendance moderates the relationship between subjective forms of stress and depression in tandem with exhibiting direct effects on depression. Consistent with the central role religion plays in Latino culture, the results imply that religious involvement may play an important role in mitigating depression through indirect and direct pathways.

Best Practices in Workplace Eldercare

March 2012

National Alliance for Caregiving (NAC)

Have you explored corporate and other employers in your state as partners in your Lifespan Respite program? This NAC study was commissioned by ReACT (a coalition of companies working to support employers and their employees who are family caregivers) and supported by a grant from the Alzheimer's Immunotherapy Program of Janssen Alzheimer Immunotherapy and Pfizer Inc. The study was conducted to identify current trends and innovations in workplace policies and practices to support employees with responsibilities for caring for older adults (eldercare). In addition, the study examines key benefits to employers, including worker retention, improved productivity, lower stress and improved health among workers. These programs are seen also as a plus for attracting new employees. You can use this study to encourage more companies to provide these kinds of programs for their employees. See especially page 31 of the report to read about Johnson & Johnson of New Brunswick, NJ, which employs 118,000 people worldwide (www.jnj.com). They provide a set number of respite hours through a third-party vendor for their caregiving employees as part of a comprehensive package of family caregiver supports. The study is available on NAC’s website: http://www.caregiving.org/pdf/research/BestPracticesEldercareFINAL.pdf

ARCH Quick News Update

Fri, 11 May 2012 20:39:44 GMT

Register Now! Webinar on Funding Sustainability for Lifespan Respite Programs, Thursday, May 30, 2012, 3:00 – 4:30 pm eastern. To register, click here.

State Long-Term Services and Supports Scorecard: What Distinguishes High- from Low-Ranking States? Overview of Three Case Studies

May 2012

by Susan Reinhard, Enid Kassner, Leslie Hendrickson, and Robert Mollica, AARP Public Policy Institute.

In June 2011, the AARP Public Policy Institute released Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers The State Long-Term Services and Supports Scorecard (http://www.longtermscorecard.org/Report.aspx), which ranked states on 25 indicators to compare states’ performance in the provision of long-term services and supports (LTSS) for the adult and aging populations. The Scorecard examined state performance across four key dimensions of LTSS system performance: (1) affordability and access; (2) choice of setting and provider; (3) quality of life and quality of care; and (4) support for family caregivers. While the Scorecard started a discussion about state’s LTSS performance, it did not explain why states ranked high, low, or somewhere in between. A series of case studies were undertaken as a follow-up to the Scorecard to provide a context for understanding state performance. Site visits were made to the top-ranked state (Minnesota) and to a middle-ranked state (Idaho, ranked 19th) and a low-ranked state (Georgia, ranked 42nd).

The case studies can be found at http://www.longtermscorecard.org/?utm_source=5-10-12%3A+TSF+Comments+on+Duals%2C+Scorecard+AARP+docs&utm_campaign=May+Eblast&utm_medium=email

Building a National Agenda for Supporting Families with an Individual with Developmental or Intellectual Disabilities

April 2012

In March 2011, ARCH was invited along with a group of diverse national and state family support leaders and stakeholders to participate in a three-day intensive conference held at the Johnson Foundation's Wingspread Conference Center in Racine, Wisconsin. The purpose of the conference was to generate recommendations for a National Agenda on Family Support for families of people with intellectual and developmental disabilities (I/DD). Because of the role that families continue to play in the lives of their family members with intellectual and developmental disabilities, future policies and practices must reflect the family as part of the system of support. The goal of Building a National Agenda for Supporting Families with an Individual with Developmental or Intellectual Disabilities is to advance policy and strategies at the federal and state level for building an infrastructure for supporting families of people with developmental disabilities. This document outlines recommendations, including support for Lifespan Respite programs, that must occur to ensure that individuals with I/DD are fully integrated and included in our society and that recognition of their families’ role in their lives is part of the equation for success.

View, download, or print this document at www.familysupportagenda.org. You can post comments with your feelings and reactions to the document in an interactive format here: http://en.calameo.com/books/0013300559e4b141f1ad3

SAMHSA Report Highlights the Prevalence of Mental Illness in Older Adults

April 25, 2012

On April 25, the Substance Abuse and Mental Health Services Administration (SAMHSA) released Mental Health, United States, 2010, the latest in a series of publications issued biannually by SAMHSA since 1980. Modeled after CDC's annual report, Health, US, SAMHSA's new report includes mental health statistics at the national and State levels from 35 different data sources. In part, the report discovered that in 2009, 10.8 percent of persons aged 65 or older had any mental illness (AMI), and in 2004, nearly half, 49.2 percent, of nursing home residents had a diagnosis of some type of mental illness. Additionally, in 2009, Serious Mental Illness (SMI) was particularly prevalent among adults living in poverty (9.1 percent) and among those covered by Medicaid/Children's Health Insurance Program (10.7 percent).

To download a copy of the report, please follow this link.

Preliminary Report: Did Expanding Eligibility for the Family Caregiver Support Program Reduce the Use of Long-Term Care?

May 2012

The Family Caregiver Support Program (FCSP) at the Washington Department of Social and Health Services (DSHS) provides resources and services to unpaid family caregivers in Washington State. In concert with the state’s 13 Area Agencies on Aging, the FCSP provides information and outreach; screening, assessment, consultation, coordination of services, and caregiver support services and resources. The program directly served 5,800 caregivers in fiscal year 2011. For fiscal year 2012, the state legislature increased funding for FCSP to expand in-depth services to more caregivers. The legislature also directed the Washington State Institute for Public Policy to work with DSHS to establish and review outcome measures associated with the FCSP expansion. The goal of the study is to assess whether the expansion of this program delays entry of care recipients into Medicaid-paid long-term care. This report gives a brief description of the program and outlines the approach to evaluation. A final report will be published by August 30, 2012. (February 2012) Jim Mayfield, Marna Miller. #12-02-3901.

To download a copy of the preliminary report, visit this link. http://www.wsipp.wa.gov/rptfiles/12-02-3901.pdf

Citation: J. Mayfield & M. Miller (2012) Preliminary Report: Did expanding eligibility for family caregiver support program reduce the use of long-term care? (Document No. 12-02-3901). Olympia: Washington State Institute for Public Policy.

Report Finds Facility Care Costs Growing, Home Care Costs Remaining Stable

Genwood Financial recently released the 2012 edition of its annual Cost of Care Survey. The report found that nursing home and assisted living facility care costs continued to grow while home care costs remained flat in 2011. The report used data from more than 15,000 long-term care providers throughout the country to determine the median rates for a range of long-term care services:

Licensed Homemaker Services - $18 median hourly rate; no change from 2011
Licensed Home Health Aide Services - $19 median hourly rate; no change from 2011
Adult Day Health Care - $61 median day rate; up 1.67 percent from 2011
Assisted Living Facility, One Bedroom, Single Occupancy - $3,300 median monthly rate; up 1.2 percent from 2011
Nursing Home, Semi-Private Room - $200 median daily rate; up 3.63 percent from 2011
Nursing Home, Private Room - $222 median daily rate; up 4.23 percent from 2011

The report can be accessed here.

E-Journal Explores Childhood Disability

The spring 2012 issue of The Future of Children explores the prevalence, nature, treatment, and consequences of childhood disability. The issue, a collaboration between Princeton University's Woodrow Wilson School of Public and International Affairs and the Brookings Institution, focuses not on individual disabilities but rather on cross-cutting themes that apply broadly to the issue of childhood disability. Topics include the definition of childhood disability, its prevalence and trends over time, and the costs it imposes both on the individual child and on the child's family. Contributors also consider disability within the context of the nation's educational, health insurance, and medical systems; the impact of emerging technologies on the experience of disability; and the definition of health care quality. The volume concludes with a discussion of the prevention of childhood disability.

The full journal, executive summary, policy brief, and article summaries are available at http://www.futureofchildren.org/futureofchildren/publications/journals/journal_details/index.xml?journalid=77

For monthly in-depth news updates, please subscribe to The Newsletter of the Technical Assistance Centers for Caregiver Programs and Lifespan Respite, by clicking on this link. This is a joint effort between the Family Caregiver Alliance and the ARCH National Respite Network.

ARCH Quick News Update

Fri, 27 Apr 2012 18:52:53 GMT

Consumer-Directed Personal Care: Comparing Aged and Non-Aged Adult Recipient Health-Related Outcomes Among Those With Paid Family Versus Non-Relative Providers by Robert Newcomer PhD; Taewoon Kang PhD, and Julia Faucett, Health Care Services Quarterly Vol. 30, Iss. 4, 2011

Abstract: Risk factors associated with the incidence of recipient injuries, bedsores and contractures, and health care use (i.e., emergency department and hospital use) among aged and non-aged adult personal care recipients are investigated. Data are from a statewide survey of aged and non-aged adult personal assistance service (PAS) recipients (n = 913) in California's In-Home Supportive Services (IHSS) program. This is a consumer-directed PAS program. Outcomes among recipients using relatives (other than spouses or parents) as paid providers are compared with those of recipients having non-relatives as providers. No differences were found by provider-recipient relationships. Non-aged recipients, those in poorer health, those with more than three activities of daily living (ADL) limitations, and those changing providers during the year were all at greater risk for adverse health outcomes. African American, Hispanic, and Asian recipients were at lower risk for injuries and hospital stays than were White recipients. The full article is available for purchase at http://www.tandfonline.com/doi/abs/10.1080/01621424.2011.622245#preview

Do Medicaid Home and Community Based Service Waivers Save Money? by Charlene Harrington PhD, Terence Ng JDMA, and Martin Kitchener PhD. Health Care Services Quarterly, Vol. 30, Iss. 4, 2011

Abstract: This article estimates the potential savings to the Medicaid program of using 1915c Home and Community Based Services (HCBS) waivers rather than institutional care. For Medicaid HCBS waiver expenditures of $25 billion in 2006, we estimate the national savings to be over $57 billion, or $57,338 per waiver participant in 2006 compared with the cost of Medicaid institutional care (for which all waiver participants are eligible). When taking into account a potential 50% “woodwork effect” (for people who might have refused institutional services), the saving would be $21 billion. This analysis demonstrates that HCBS waiver programs present significant direct financial savings to Medicaid long-term care (LTC) programs. The full article is available for purchase at http://www.tandfonline.com/doi/abs/10.1080/01621424.2011.622249#preview

Respite Programs For Family Caregivers Face Cuts Despite Growing Need By Jessica Marcy, Kaiser Health News, April 26th, 2012, 3:00 PM

Kaiser Health News reports on state cuts, actual and proposed, to respite services. Several ARCH Respite Coalition and Network members contributed to this story. To see the full article, visit

http://capsules.kaiserhealthnews.org/index.php/2012/04/respite-programs-for-family-caregivers-face-cuts-despite-growing-need/

New FY 12 Lifespan Respite Program Announcements from Administration on Aging (AoA)

Sat, 17 Mar 2012 17:30:12 GMT

The Program Announcements (PAs) for the FY 12 Lifespan Respite Care Programs grants to states are now posted on AoA's website and Grants.gov. All announcements can be found at this link to funding opportunity section of AoA's website.

http://www.aoa.gov/AoARoot/Grants/Funding/index.aspx

The program announcements include:

● Grants to New States for Lifespan Respite Programs for eligible state agencies which did not receive funding under this program previously. Grants are for planning, establishing and expanding/enhancing Lifespan Respite Care systems in the states, including new and planned emergency respite services, training and recruiting respite workers and volunteers and assisting caregivers with gaining access to needed services. Funding Opportunity Number HHS-2012-AoA-LR-1203

● Building Integrated & Sustainable Lifespan Respite Care Programs for current Lifespan Respite Grantees who are one of 12 eligible state agencies which received funding in FY 2009. Grants are for bringing to scale and more fully integrating respite services across the lifespan with continued and measurable progress towards the realization of sustainable Lifespan Respite systems. Funding Opportunity Number HHS-2012-AoA-LI-1205.

● Expansion Grants for current state agencies which received Lifespan Respite Grants in FY 2010 or FY 2011. The primary focus of these one-year Competitive Expansion Supplement grants is the provision of respite services to eligible populations. In addition to using the funds to provide respite services, successful applicants may also use funds to further enhance activities begun during years one and/or two of their existing grants. Federal Opportunity Number HHS-2012-AoA-LR-1206

All Letters of Intent are due April 2, 2012. The deadline date for submission of all applications is 11:59 p.m., Eastern Time, on May 14, 2012. Check the AoA website for information on open information teleconferences for applicants to be held in March. All questions regarding the content of these applications should be directed to:

Greg Link

Office of Home and Community-Based Services

Washington, DC 20201

202-357-3545

E-mail: greg.link@aoa.hhs.gov

New America Media publishes new series on family eldercare

Tue, 13 Mar 2012 14:13:54 GMT

The following articles are part of a series on family eldercare and what caregivers should know about minimizing their stress and maintaining their health. Paula Spencer Scott, a senior editor at Caring.com, wrote these articles as part of a MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America.

Avoiding Stress in Eldercare: What 7 At-Risk Groups Need to Know

Eldercare Stress: What's Different for MalesundefinedEspecially Black Men

Centers for Disease Control Report Child Abuse Costs Victims $200,000 Over A Lifetime

Tue, 13 Mar 2012 14:12:37 GMT

In a newly released report, The economic burden of child maltreatment in the United States and implications for prevention, the Centers for Disease Control and Prevention estimates that the average cost to someone who experiences maltreatment as a child -- defined as physical abuse, psychological abuse, sexual abuse or neglect -- is $210,012 over the course of a lifetime. To read the abstract, visit http://www.sciencedirect.com/science/article/pii/S0145213411003140

Citation: Fang, Xiangming^a; Derek S. Brown^b, Curtis S. Florence^a, James A. Mercy^a. (2012). The economic burden of child maltreatment in the United States and implications for prevention.^a National Center for Injury Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA, USA^. ^b RTI International, Public Health Economics Program, Research Triangle Park, NC, USA^. Received 28 April 2011. Revised 30 September 2011. Accepted 12 October 2011. Available online 31 January 2012. http://dx.doi.org/10.1016/j.chiabu.2011.10.006

2012 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association

Tue, 13 Mar 2012 14:09:52 GMT

The Alzheimer’s Association released its 2012 Alzheimer’s Disease Facts and Figures report. It provides a statistical overview and analysis of Alzheimer’s prevalence, mortality, caregiving, and increasing costs as well as a special report on those living alone with Alzheimer’s. The full report, as well as a video, graphs, and state specific information are now available at www.alz.org/facts.

Key findings of the report include:

The cost of caring for those with Alzheimer's to American society will total $200 billion in 2012. Medicare and Medicaid will shoulder approximately 70 percent of these costs; an estimated $140 billion. Total costs to society will soar to an estimated $1.1 trillion (today’s dollars) per year by 2050.
Individuals with Alzheimer’s or other dementias are high consumers of hospital, nursing home, and long-term care services, translating into high costs for Medicare, Medicaid, and families. People with Alzheimer’s and other dementias cost Medicaid 19 times more than seniors without these conditions.
As the number of people with Alzheimer’s grows from the 5.4 million today to as many as 16 million in 2050, costs to Medicare and Medicaid will increase 500 percent and out-of-pocket costs for families will increase 400 percent.
There are 15.2 million family members and friends who provide 17.2 billion hours of unpaid care per year. The economic value of this contribution is $210 billion.
This year’s special report finds that 1 out of 7 people who have Alzheimer’s live alone – and up to half of these individuals do not have an identifiable caregiver.

New Survey of Caregivers of Individuals with Multiple Sclerosis

Tue, 13 Mar 2012 14:07:55 GMT

Multiple Sclerosis Caregivers, 2012. National Alliance for Caregiving and the National Multiple Sclerosis Society

Today, March 8, 2012, the National Multiple Sclerosis Society released a survey of family caregivers of people with Multiple Sclerosis conducted by the National Alliance for Caregiving. This study sheds new light on several new aspects of family caregiving for someone with MS. In particular:

The long life cycle of the disease suggests that the total number of years one serves as a caregiver will be much, much longer than caregivers in general: 9 years for these caregivers compared to less than 5 years for all caregivers. The average age of these people with MS was only 50 years; they can be expected to live to about 68-70.
The most common aspects of MS caregivers’ lives which are negatively impacted is their overall financial situation, ability to participate in hobbies and/or things they enjoy, and then mental health. Caregiving for someone with MS has a substantial negative impact on the family’s financial situation in 43% of the cases.
The areas with the biggest positive impacts relate to relationshipsundefinedthose with the care recipient, the children of the caregiver, and other family members.
For delaying institutionalization, 82% of caregivers say that assistance in paying for in-home care would help and two-thirds say that respite care would help. When the care recipient also has cognitive impairment, the percentage of those saying respite would be helpful to avoid or delay nursing home placement jumps to 75%.

For more findings and to read or download the full report, click here

Assistant Secretary for Aging, Kathy Greenlee, addressed the National Multiple Sclerosis Society’s Public Policy Meeting in DC this week to indicate AoA’s ongoing support for family caregivers across ages and conditions. The MS Society has identified Lifespan Respite funding and reauthorization among their top legislative policy priorities this year. The National Respite Coalition also spoke to the group, giving them background on the pending reauthorization bill, HR 3266, before the 300 meeting participants visited Congress in support of the legislation and in support of funding for FY 13. Thank you NMSS!

AARP Call To Action

Sat, 03 Mar 2012 18:48:30 GMT

The AARP Public Policy Institute has released a new paper, A Call to Action: What Experts Say Needs to Be Done to Meet the Challenges of Family Caregiving. The paper highlights policy recommendations from an AARP Solutions Forum and summarizes 10 common themes from the work of 10 authors examining family caregiving today. These authors collectively call for a reexamination of policies and strategies to strengthen caregiving families.

Institute of Medicine Report Cites Benefits of Respite

Sun, 19 Feb 2012 16:23:17 GMT

New Report from the Institute of Medicine Cites Benefits of Respite

The Centers for Disease Control (CDC) and the nonprofit Arthritis Foundation asked the Institute of Medicine (IOM) to help identify ways to reduce disability and improve the function and quality of life for people living with chronic illness. Living Well with Chronic Illness: Public Health Action to Reduce Disability and Improve Functioning and Quality of Life, a new report released in January by the Institute of Medicine (IOM), includes recommendations that all major federally funded programmatic and research initiatives in health include an evaluation on health-related quality of life and functional status. Also, the book recommends increasing support for implementation research on how to disseminate effective long term lifestyle interventions in community-based settings that improve living well with chronic disease. Citing important research evidence about the benefits of respite in the chapter on Community-based Interventions, the report concludes: “As the evidence shows, although respite services provide proven benefits, most caregivers feel that what’s out there is not enough (Paraponaris et al., 2011; Stirling et al., 2010). In addition, because a majority of those among lower socioeconomic status often experience difficulties in gaining access to these kinds of services and because informal care consumes almost two thirds of all care in a year, more services should be offered (Paraponaris et al., 2011).” To download a prepublication version of the report and retrieve the citations, visit the IOM website.

Report Citation: IOM (Institute of Medicine). 2012. Living well with chronic illness: A call for public health action. Washington, DC: The National Academies Press.

Stress in America Survey - findings on caregivers

Sun, 19 Feb 2012 16:11:38 GMT

American Psychological Association (2012), Stress in America™ Survey

American Psychological Association has published an important synopsis of new data on caregiver stress and the health related consequences based on the latest Stress in America survey (http://www.apa.org/news/press/releases/stress/2011/health-risk.aspx). The Stress in America™ survey was conducted online within the United States by Harris Interactive on behalf of the American Psychological Association between August 11 and September 6, 2011, among 1,226 adults aged 18 and older who reside in the U.S. Results are published for the nation, by region, and by major cities, including Atlanta, Chicago, Denver, Detroit, Los Angeles, New York City , Seattle, and Washington, DC . A few highlights of national findings from the survey:

Caregivers are more likely to say that their health is fair or poor (34 percent vs. 20 percent) and are also significantly more likely to cite personal health concerns as a significant source of stress (66 percent vs. 53 percent).
Caregivers are more likely to report experiencing physical (94 percent vs. 76 percent) and non-physical (91 percent vs. 71 percent) symptoms of stress when compared to the general population. In particular, caregivers are far more likely than the general population to lay awake at night (60 percent vs. 44 percent), overeat or eat unhealthy foods (53 percent vs. 39 percent) or skip a meal (48 percent vs. 29 percent) because of stress.
Caregivers are more likely than the general population to report that they get sick five times a year or more (17 percent vs. 6 percent).
Even younger caregivers, age 49 years and younger, were less likely than their counterparts in the general population to report that their overall health is excellent/very good (28 percent vs. 43 percent, respectively).

New Study Cites Benefits of Respite

Sun, 19 Feb 2012 18:13:22 GMT

For every $1,000 states spent on respite services in the previous 60 days, researchers at the University of Pennsylvania found an 8 percent drop in the odds of hospitalization. This is the major finding from a new study published in this month in the Archives of Pediatrics and Adolescent Medicine. The findings come from a study of records for over 28,000 kids with autism ages 5 to 21 who were enrolled in Medicaid in 2004. The authors concluded: “Respite care is not universally available through Medicaid. It may represent a critical type of service for supporting families in addressing challenging child behaviors. States should increase the availability of respite care for Medicaid-enrolled children with ASDs”. To see an abstract of the study, click here. The citation is:

David S. Mandell, ScD; Ming Xie, MS; Knashawn H. Morales, ScD; Lindsay Lawer, MA; Megan McCarthy, MA; Steven C. Marcus, PhD. The Interplay of Outpatient Services and Psychiatric Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum Disorders. Arch Pediatr Adolesc Med. 2012;166(1):68-73. doi:10.1001/archpediatrics.2011.714

ARCH Quick News Update

Sun, 19 Feb 2012 16:15:58 GMT

Federal Resources for Building Faith Based Partnerships

Please check out the general resources available at The Center for Faith-based and Neighborhood Partnerships at the US Department of Health and Human Services (HHS).The Center works in collaboration with the White House Office of Faith-Based and Neighborhood Partnerships. The White House Office of Faith-based and Neighborhood Partnerships works to build bridges between the federal government and nonprofit organizations, both secular and faith-based, to better serve Americans in need. The Office advances this work through 11 Agency Centers across government and a Strategic Advisor at the Corporation for National and Community Service. While not specifically focused on family caregiving, the Center has valuable tools and resources for working with the faith-based community and identifies national help to recruit volunteers (see pages 57-69 of their Partnership Guide for Faith-Based and Neighborhood Organizations). For building partnerships with faith-based and community-based organizations, see also Capacity Building Toolkits for Faith-Based and Community Organizations from the Office of Community Service at the Administration for Children and Families at HHS. While the Compassion Capital Fund is no longer awarding new grants, they produced some materials that provide good resources for capacity building. Please also revisit ARCH’s resources on Faith-Based Respite: 1) Webinar on Faith-Based Respite; and 2) Fact Sheet on Respite and the Faith Community.

IRS Announces New Voluntary Worker Classification Settlement Program; Past Payroll Tax Relief Provided to Employers Who Reclassify Their Workers

Last September, the Internal Revenue Service (IRS) created a new settlement program in an effort to correct employee classification of independent contractors. This will provide an avenue for programs which have been incorrectly classifying employees as independent contractors to redeem themselves without facing stiff penalties. The question regarding use of consultants rather than employees has been raised by respite agencies in the past. The Voluntary Classification Settlement Program (VCSP) is a new optional program that provides taxpayers with an opportunity to reclassify their workers as employees for future tax periods for employment tax purposes with partial relief from federal employment taxes for eligible taxpayers that agree to prospectively treat their workers (or a class or group of workers) as employees. To participate in this new voluntary program, the taxpayer must meet certain eligibility requirements, apply to participate in the VCSP by filing Form 8952, Application for Voluntary Classification Settlement Program, and enter into a closing agreement with the IRS. Full details are available in Announcement 2011-64.

Notice of Proposed Rulemaking to Amend the Companionship and Live-In Worker Regulations

On December 27, 2011, the Department of Labor’s Wage and Hour Division (WHD) issued proposed changes to the companionship and live-in worker regulations under the Fair Labor Standards Act. While Congress expanded protections to “domestic service” workers in 1974, these Amendments also created a limited exemption from both the minimum wage and overtime pay requirements of the Act for casual babysitters and companions for the aged and infirm, and created an exemption from the overtime pay requirement only for live-in domestic workers. For more information, see an explanation of the proposed rule by the WHD.

The Notice of Proposed Rulemaking (NPRM) would revise the companionship and live-in worker regulations for two purposes:

•● To more clearly define the tasks that may be performed by an exempt companion

•● To limit the companionship exemption to companions employed only by the family or household using the services. Third party employers, such as in-home care staffing agencies, could not claim the exemption, even if the employee is jointly employed by the third party and the family or household.

Interested parties are invited to submit written comments on the proposed rule on or before February 27, 2012 at www.regulations.gov.

To see one view on the proposed regulations, see remarks of Steven Dawson, President of PHI, an organization that advocates on behalf of direct care workers and is also the sponsor of two large home care agencies in PA and NY at http://phinational.org/archives/phi-president-steven-dawson-addresses-business-owners-concerns-about-the-dols-decision-on-the-companionship-exemption/ Be sure to also read the comment following his article by Constance Laymon on December 22.

ARCH Quick News Update

Sat, 10 Dec 2011 22:33:58 GMT

Family Matters: Multigenerational Families in a Volatile Economy

On December, 2011, Generations United released a report, “Family Matters: Multigenerational Families in a Volatile Economy.” The definition of “multigenerational household” used by the Generations United poll and the Census Bureau is “one that contains three or more parent-child generations.” The Census Bureau found in 2010 that 3.8 percent of all U.S. households were multigenerational. The report illustrates the findings that the number of families living in multigenerational households has increased more than 10 percent since 2007, to 51.4 million Americans of all ages in 2011. Of these families, 66 percent say the economy played a major role in their decision to consolidate households, and 21 percent say it was the only reason. Policy recommendations include changing housing systems to accommodate multigenerational families, increasing funding for the National Family Caregiver Support Program to $250 million, fully funding the Lifespan Respite Care Program, and enacting a federal caregiver tax credit. The full report can be found online here.

Children with Special Health Care Needs in Context: A Portrait of States and the Nation 2007

U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children's Health 2007. Rockville, Maryland: U.S. Department of Health and Human Services, 2011

14 to 19 percent of U.S. children have a chronic physical, developmental, behavioral or emotional condition.
Among children who live with their mothers, 52.2 percent of children with special health care needs (CSHCN) compared to 42 percent of non-CSHCN have mothers are not in excellent or very good physical and mental health, regardless of the mother's marital status. This discrepancy between children with and without special health care needs was evident in fathers' health status as well.
CSHCN are more than twice as likely to have a parent who reported “usually or always” feeling stressed.

The findings come from a report released last week by the federal Health Resources and Services Administration, US Department of Health and Human Services, looking at how children with special health care needs are faring as compared to their peers. It’s based on a 2007 survey of parents of more than 90,000 kids from across the country. These findings are significant because the physical and emotional health of parents can affect their ability to care for their children and can influence the health and well-being of the family as a whole and have implications for establishing a need for respite. The survey covered nearly all aspects of a child’s well-being, looking at everything from home to school life. Both national and State level data are included in the report. Researchers at the Oregon Health & Science University School of Medicine produced the report for the federal government. To see the entire report, visit http://mchb.hrsa.gov/nsch/07cshcn/index.html

Revamped Medicaid Website Improves Access to Information

Medicaid.gov is the revamped website from the Centers for Medicare and Medicaid Services (CMS). It presents extensive updated information on Medicaid Waivers (largest federal source of funding for respite) by state in a searchable data base. Unfortunately, it is no longer searchable for terms that are not in the title of the waiver, such as “respite,” but you can search by condition, such as “mental health” or “developmental disabilities.” For information on home and community-based waivers that specifically fund respite by state, please contact ARCH and be sure to check the new state-by-state pages in the new ARCH National Respite Locator Service that will launch in January at www.respitelocator.org. As the result of efforts at CMS to revitalize the information about these programs available from the Federal government, this site focuses on items stakeholders said they care the most about including state-specific program information and search capabilities.

ARCH Quick News Update

Thu, 25 Aug 2011 16:49:07 GMT

Family Caregiver Alliance Award Deadline Extended

The deadline for applying for the 2011 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards has been extended to Friday, September 16, 2011. Applications are online at www.caregiver.org.

Organized by the National Center on Caregiving at Family Caregiver Alliance and sponsored by the Rosalinde and Arthur Gilbert Foundation, the Innovation Awards will recognize excellence in Alzheimer's disease care and caregiver support in three categories: Creative Expression, Diverse & Multicultural Communities, and Policy & Advocacy. The amount of each award is $20,000.00. If you have any questions, please contact FCA at: awards@caregiver.org.

Compound Caregivers

Perkins, E. A. (2011). Compound caregivers: overlooked and overburdened [White paper]. Tampa, Florida: University of South Florida, Florida Center for Inclusive Communities. Retrieved from http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf

Compound caregiver refers to those parents who are already providing considerable caregiving responsibilities to their son/daughter with intellectual disabilities, who subsequently becomes a caregiver for an additional family member. Their caregiving duties are effectively compounded by their additional caregiving roles, especially as their son/daughter may be unable to give any substantive assistance to the additional care recipient. This white paper explains how compound caregiving differs from both general caregiving and sandwich caregiving, how respite barriers are more complex, and recommends several policies to improve support for these caregivers, including increased funding for the Lifespan Respite Care Program. Additional resources are available from ARCH, including:

Haley, William H. and Elizabeth Perkins. (2004). Current Status and Future Directions in Family Caregiving and Aging People with Intellectual Disabilities. Journal of Policy and Practice in Intellectual Disabilities. Volume 1 Number 1 pp 24–30.

Perkins, Elizabeth A.(2010) 'The Compound Caregiver: A Case Study of Multiple Caregiving Roles', Clinical Gerontologist, 33: 3, 248 undefined 254

Perkins, Elizabeth A. and William E. Haley. (2010) Compound Caregiving: When Lifelong Caregivers Undertake Additional Caregiving Roles. Rehabilitation Psychology. Vol. 55, No. 4, 409–417.