Family Caregiver Alliance's Policy Digest

Policy Digest Newsletter
A Newsletter of FCA's National Center on Caregiving

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May 30, 2012

Volume XII, Number 11

I nthis issue section head

State Legislation, Policy & Reports 

  1. CT: Delays Continue In Connecticut Home Care Program For Elders More...
  2. MA: State Senate Approves Requirement For Doctors/Nurses To  Discuss End-Of-Life Health Options More...
  3. IL: State Plans Three Year Plan On Aging, Advocates Voice Concerns  More...
  4. VT: Elder Abuse Reporting Law Vetoed By Governor  More...
  5. CA: Revised Budget Released, Two Laws Supporting Caregivers Move Forward More...  

Federal Legislation, Policy & Reports 

  1. NCOA/GSA Report Calls For Strengthening Research Capabilities In Older Americans Act More...
  2. Money Follows The Person: Progress Slow, Varies By State More...
International News 
  1. UK: Pilot Program Allows People To "Bank" Caregiving Hours By Volunteering Now  More...

Research Reports & Journal Articles

  1. Study: Spirituality And Religion May Mitigate Caregiver Depression More...
  2. Study:  One In Five Medicare Beneficiaries' Out-Of-Pocket Spending Exceeds Assets More...
  3. Report: Caregiver Penalty Still A Problem For Women  More...

Conferences & Trainings

  1. n4a 37th Annual Conference And Trade Show  More...
  2. American Brain Tumor Patient and Family Conference  More...
  3. 8th International Short Break Association 2012 Respite Conference More...
  4. Forum: "Speak Up! Influential Women Give Voice To The Challenges Of Eldercare"  More...

Funding, Media & Miscellaneous 

  1. PA: State Appeals Court Rules That Adult Son Is Responsible For Mom's $93,000 Nursing Home Bill More...
  2. MN Attorney General Focuses On Hospital Bill Collectors More...
  3. Poll Finds Recently Sick/Hospitalized Americans Have Different Views Of Health Care System More...

Research Registry 

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The Connecticut Mirror reports that seniors applying for the Connecticut Home Care Program for Elders are continuing to face delays as the state works through a backlog of applications. There are two programs/funding sources, one program is entirely funded by the state and has a lower eligibility threshold. Delays in approving applications in this program have been tied to an insufficient number of eligibility workers. However, with recent hires, this program has reduced the backlog to 200 cases and is currently processing applications from March. The other program, funded in part by the federal government (through Medicaid) is also experiencing delays, and lawyers from Legal Aid sued on behalf of an estimated 5,000 people whose applications were delayed beyond the  45-day time period required by Medicaid. State officials are changing how they assess applications, including changing the level of analysis spent reviewing an applicant's finances for the five years prior to applying for Medicaid. The department also received approval to hire 60 new eligibility employees. For more information, visit:


Connecticut Mirror: "Seniors wait for home care while their applications linger in 'black hole'" 


Kaiser Health News reports that an amendment that focuses on end-of-life counseling was attached to a broader health care bill and unanimously passed in the Massachusetts Senate earlier this month.  Amendment number 121, "Palliative Care Awareness" would require physicians and nurses to speak with terminally ill patients about their end-of-life options, risks and benefits to each option, and how to best manage their symptoms and pain. However, patients are not required to have the conversation or document their preferences. An expert panel focused on end-of-life care last year, and this amendment is one of the panel's recommendations. Dr. Lachlan Forrow, who chaired the panel, explained that some people may want to extend life as long as possible in the intensive care unit while others may choose to be in their homes, surrounded by family. The Massachusetts Family Institute, a right-to-life group, does not oppose this amendment, however, a physician-assisted suicide referendum could be on the ballot in the fall and if it is approved, the organization would oppose including this as an option when counseling terminally ill patients. Senator Richard Moore, who sponsored the amendment, attributed the success to a concerted effort "not to demonize anybody in the process."  For more information, visit:

The Peoria Journal Star reports that the Illinois Department of Aging is in the process of drafting the state's three-year state plan on aging. The draft plan cites strong demand for alternatives to nursing home care, as well as baby boomer preferences for consumer-directed care, and suggests that policymakers will have to provide sufficient care as well as the types of services that older adults and their family caregivers want. The Community Care Program, one of the largest HCBS programs in the state, has grown from a caseload of 38,950 in FY 2003 (cost $223.8 million) to more than 75,000 in FY 2012 (cost of $678.4 million). The state will evaluate its assessment process for Medicaid Waiver services, and the Determination of Need threshold may be increased to 37 points for the Community Care Program. The assessment process will also be evaluated in 2014 and possibly revised to reflect national best practices. Similar to other states, Illinois is also considering changes to case management. Under the current system, all case management is provided through Community Care Units, however, the Department will consider moving some responsibilities like eligibility determination to organizations like Area Agencies on Aging. The state is gathering public feedback until June 15, 2012 and comments can be emailed to: [email protected]. For more information, visit:

The Bennington Banner reports that Vermont Governor Peter Shumlin vetoed a bill earlier this month that would have required additional reporting from the state Adult Protective Services division.  A lawsuit against the state was filed five months earlier because of an alleged backlog of investigations of physical and financial elder abuse. In response to the lawsuit, lawmakers passed a bill that was supported by Disability Rights Vermont and the Community of Vermont Elders. One of the provisions would have required a report about the number of calls that were not answered within 48 hours. The Governor vetoed the bill, saying it added more bureaucracy. For more information, visit:


The Los Angeles Times reports that Governor Brown released a revised budget proposal earlier this month that calls for increased cuts to social safety net programs. The budget, revised from his January budget, reflects the fact that revenues were over-estimated by about $4.3 billion, while $1.7 billion worth of anticipated cuts have been blocked by judges or the federal government. To address the $16 billion deficit, Brown's revised budget calls for a 5% reduction in state worker pay, $1.2 billion in Med-Cal cuts, and a $500 million cut to the state's court system. Brown's budget also assumes voter passage of a tax initiative expected to raise $8.5 billion through personal income taxes on people making $250,000 or more annually, as well as sales and use taxes. In the IHSS program, a seven percent, across-the-board reduction in hours is proposed as well as the elimination of hours for domestic and related services for IHSS recipients who live with other people.  An earlier 20% reduction in hours in the IHSS program, included as part of a series of "trigger cuts" has been blocked by a federal judge. 


Two laws supporting family caregivers also moved forward this month.  Assembly bill 1999 would add "family caregiver status" to the list of protected categories (e.g. race, sex, religion) under the employment provisions of the Fair Employment and Housing Act (FEHA).  Assembly bill 2039 would amend the California Family Rights Act (CFRA) by broadening the definition of eligible family to also include caring for a seriously ill sibling, grandparent, grandchild, adult child, and parent-in-law. For more information, visit:



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NCOA/GSA Report Calls For Strengthening Research Capabilities In Older Americans Act


A recent report from the National Council on Aging and the Gerontological Society of America advocates for a stronger, more rigorous research approach in Title IV (Activities for Health, Independence, and Longevity-Program Innovations) of the Older Americans Act. Title IV authorizes the Assistant Secretary for Aging to fund training, research, and demonstration projects. However, Congress did not fund Title IV in FY 2012. Research conducted with Title IV funding paved the way for current Title III programs, including congregate meals, Area Agencies on Aging, and the On Lok model for adult day care. Recommendations include creating a new Chief Science Officer, establishing a national advisory council for aging services program research, renaming Title IV, and others. The authors explain, "Rigorous evaluations of effectiveness will be essential, using both process and outcomes measures that go far beyond findings that service recipients simply like or use a service. The key will be to understand if and how the Aging Services Network can improve the lives of older adults and do its part in slowing the growth in expenditures of major entitlement programs like Medicare and Medicaid."  For more information, visit:

NCOA/GSA: "Strengthening the Effectiveness of Services for Older Americans" 


Money Follows The Person: Progress Slow, Varies By State


Kaiser Health News recently reported on the Money Follows the Person program and the difficulty some states have had in using the program to move elderly and disabled people out of institutional care and into community living with supportive services. Original projections for the program, which started in 2007, called for 35,380 people moving in the first five years, though states had only moved 22,500 as of March 2012. While an estimated 900,000 people meet the eligibility requirements, progress varies widely across states. Challenges cited in a 2011 Mathematica report included intensive medical needs, a lack of community-based services, and arranging assistance from family members. Affordable housing has also been a challenge, including for elderly participants who may no longer have a house or apartment. The program was extended as part of the Affordable Care Act, and 44 states are participating in the program.  Texas has transitioned the most participants, with 5,298 people moved by the end of 2011.  An upcoming GAO report, set to be released in June, will examine state approaches for providing HCBS, including Money Follows the Person. For more information, visit:

Kaiser Health News: "States Encounter Obstacles Moving Elderly And Disabled Into Community" 



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UK: Pilot Program Allows People To "Bank" Caregiving Hours By Volunteering Now

The Guardian reports on a pilot program in the Isle of Wight in the United Kingdom called "Care4Care" that will allow people to volunteer with seniors and "bank" their volunteer hours for when they themselves need long-term care. The pilot, designed by Professor Heinz Wolff, is designed to address the gap between what government can provide and what communities can do on their own. The program received a grant of �47,000, and the pilot began in March this year.  For more information, visit:

The Guardian: "Give and take scheme provides a new blueprint for elderly care" 



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Study: Spirituality And Religion May Mitigate Caregiver Depression


A study in the May issue of the Journal of Applied Gerontology analyzes the effects of spirituality and religion on caregiver depression.  The study focused on a sample of 209 Latino caregivers (drawn from the REACH II clinical trial) who are caring for a loved one with Alzheimer's disease.  The authors find that church attendance moderates the relationship between subjective forms of stress and depression. The authors conclude: "the results imply that religious involvement may play an important role in mitigating depression through indirect and direct pathways." For more information, visit:

Journal of Applied Gerontology: "Latino Alzheimer's Disease Caregivers and Depression: Using the Stress Coping Model to Examine the Effects of Spirituality and Religion" (abstract is free) 


Study:  One In Five Medicare Beneficiaries' Out-Of-Pocket Spending Exceeds Assets 

Paula Span cites research presented at the scientific meeting of the American Geriatrics Society and suggests that President Lyndon B. Johnson's hope for Medicare alleviating financial pressure on seniors may not have been fulfilled. A recent study used data on 3,209 Medicare beneficiaries to analyze their spending in the last five years of life, and the authors found that the average health-related out-of- pocket spending during the last five years of life was over $38,000.  If a house is not included in total assets, then out-of-pocket spending exceeds total assets for one in three people, if a house is included, then spending exceeds assets for one in five.  Dr. Amy Kelly, the lead author, and a geriatrician, explained that she wasn't surprised by the results because Medicare doesn't pay for eye care and glasses, dental care/dentures, hearing aids, insurance costs, nursing homes, co-payments, or long-term care. Nursing home costs accounted for half of the expenses for people in the top quartile of spending. For more information, visit:


New Old Age: "L.B.J. Was Wrong"

American Geriatrics Society Presentation Slides: "Out-of-Pocket Spending in the Last Five Years of Life"   



Report: Caregiver Penalty Still A Problem For Women


The Older Women's League (OWL) released its annual Mother's Day Report, and the author explains that the "Caregiver Penalty" is still a pressing issue.  Seventy-five percent of middle-aged women are working, women are still the primary caregivers (both for children and older loved ones), and an estimated 46% of women are part of the sandwich generation, caring for both a child and a parent.   Despite these caregiving responsibilities, only 28% of full-time workers and 39% of part-time workers report having flexible work hours.  Employees have also cited the financial inability to take unpaid leave under the Family Medical Leave Act as a barrier to using it.  For more information, visit:


OWL: "Women and the Workforce: Challenges and Opportunities Facing Women as They Age"  





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The National Association of Area Agencies on Aging will hold their 37th annual conference and trade show in Denver, Colorado, from July 7-11. Topics will include AAAs and their roles in managed care; care transition grants; opportunities in the Affordable Care Act; and livable communities.  Early bird registration ends June 7, for more information, or to register for the conference, visit:


n4a Conference




The American Brain Tumor Association's annual conference will take place July 27-79 in Chicago.  In addition to discussing the latest brain tumor research and treatment options, sessions will also include tumor-specific workshops, caregiving strategies, and post-treatment wellness.  For more information or to register, visit:


American Brain Tumor Association Conference 



8th International Short Break Association 2012 Respite Conference


The theme for this year's conference, held in Toronto from October 10-12 is "Respite is Key." Themes during the conference include: "Opening the Door to the Community," "The Key to Strengthening Families," "Unlocking Resources," and "Treasures Found."  Early bird registration is due by June 1, 2012, for more information, or to register, visit:


Short Break Association 2012 Respite Conference 



Forum: "Speak Up! Influential Women Give Voice To The Challenges Of Eldercare" 


A Health Policy Forum Roundtable, hosted by the Altarum Institute on June 5, will include authors Lynn Alexander, Eleanor Clift, Muriel Gillick, Joanne Lynn and Cheryl Woodson.  Each of the women will discuss their experiences and their books, which range from hands-on advice for caregivers to discussions of the political, social, and cultural ramifications of a fragmented health and social service system. The event will take place in Detroit, Michigan from 9:30-3:30PM, and will also be webcast. For more information, or to register, visit:


Altarum Institute Health Policy Forum Roundtable 



Funding, Media & Miscellaneous banner

PA: State Appeals Court Rules That Adult Son Is Responsible For Mom's $93,000 Nursing Home Bill


Howard Gleckman recently wrote about a filial responsibility case in Pennsylvania in which an appeals court ruled that an adult son was responsible for his mother's unpaid nursing home bill. Gleckman explains that 30 states have filial responsibility laws, and about 2/3 of the states allow long-term care providers to sue family members for unpaid costs.  In this particular case, the mother was in a nursing facility for six months after a car accident.  Her monthly income from Social Security and a pension was only $1,000, and while she applied for Medicaid, she ended up leaving the facility while her application was still pending.  The facility sued her son for the bill, and the appeals court said that family members could be sued as long as the facility can prove that the relative has resources to pay.  For more information, visit:

Forbes: "Will Adult Children Have to Pay Mom's Nursing Home Costs?"


MN Attorney General Focuses On Hospital Bill Collector


NPR's Health Blog, "Shots," recently focused on Accretive Health, a business that was originally sued by Minnesota's Attorney General for privacy violations after a laptop was stolen. The publicly-traded company then came into the national media spotlight this spring after the Minnesota Attorney General also released a scathing report suggesting the company used aggressive collections tactics that included stationing debt collectors inside emergency rooms at hospitals in Minnesota. In response to the AG's investigation, the company has hired and/or aligned itself with a number of politicians and former government leaders, including Chicago Mayor Rahm Emanuel, former HHS Secretary Mike Leavitt, former Medicare chief Mark McClellan, former GOP leader Bill Frist, former HHS Secretary Donna Shalala, and former Democratic leader Tom Daschle.  For more information, visit:


NPR Shots: "Embattled Hospital Debt Collector Taps Politicians For Defense"


Poll Finds Recently Sick/Hospitalized Americans Have Different Views Of Health Care System


A recent poll of 1,508 people by the Harvard School of Public Health, NPR, and the Robert Wood Johnson Foundation included both the general public, and sick Americans (defined as "a serious illness, injury or disability requiring "a lot of medical care," or overnight hospitalization within the past 12 months").  Three out of four people who had been recently sick said cost was a very serious problem and half said that they felt burdened by out-of-pocket health care expenses.  People who had been ill in the last year also had issues with quality: 13% believe they were given the wrong diagnosis, treatment or test while 26% said their condition was not well-managed, and 23% reported having to see multiple medical professionals and no one doctor understood or kept track of all the different aspects of their medical issues and treatments. Twenty-three percent of sick Americans report having an issue with their insurance paying a hospital, doctor, or other health care provider in the past 12 months. The general public faulted insurance companies (77%), drug companies (76%), and hospitals (74%) for charging too much money as a major reason for rising health care costs. For more information, visit:


NPR: All Things Considered: "Poll: What It's Like To Be Sick In America 

Poll Summary 



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The National Center on Caregiving at Family Caregiver Alliance works to advance the development of high-quality and cost-effective policies and programs for caregivers in every state in the country. The National Center is a central source of information and technical assistance on family caregiving for policymakers, health and service providers, program developers, funders, media and families. For questions or further information about the National Center on Caregiving, contact [email protected] or visit the Family Caregiver Alliance website at

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