ARCH Quick News Updates

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

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.

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!

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. 

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.

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).

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

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.

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.

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.