Family Caregiver Alliance's Policy Digest

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A Newsletter of FCA's National Center on Caregiving

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June 27, 2012

Volume XII, Number 13

I nthis issue section head

State Legislation, Policy & Reports 

  1. GAO Report: More Options For HCBS, But State Officials Have Reservations  More...
  2. NC: Advocates Voice Concerns About State Budget And Waiting Lists  More...
  3. CA: Seven Hour Appeal Meeting For 90-Year Old Client Denied For New Adult Day Care Program   More...

Federal Legislation, Policy & Reports 

  1. All Eyes On US Supreme Court Ruling Expected Tomorrow  More...
  2. Senate Appropriations Committee Approves FY 2013 Budget  More...
  3. Public Comment Period Open For Proposed Rulemaking On Medicaid HCBS  More...
International News 
  1. UK: 56% Of Social Care Workers Report Adult Day Center Closures  More...

Research Reports & Journal Articles

  1. Survey: Buying LTC Insurance Related To Beliefs About Product, Need, And Family Availability  More...
  2. Loneliness Tied To Increased Functional Decline And Increased Risk Of Dying  More...
  3. Survey: 1/3 Of Women Alzheimer's Caregivers Are Part Of Sandwich Generation  More...

Conferences & Trainings

  1. Webinar: New Administration For Community Living, July 2  More...
  2. "Why Assess Family Caregivers?" Archived Webinar Now Available  More...

Funding, Media & Miscellaneous 

  1. Application For 2012 Rosalinde Gilbert Innovations In Alzheimer's Disease Caregiving Legacy Awards Now Available  More...
  2. Report: Average Boomer's Nest Egg Fell 1/3 Since 2007  More...
  3. Op-Ed: "Will Medicaid Reformasaurus Come For Us Next?"  More...

Research Registry  

  1. Family Caregiver Research Study  More...

If you are interested in having your registry listed, please contact [email protected] 


Connect with FCA:

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A recent GAO report provides a detailed analysis of existing resources for states to provide HCBS, including changes made through the Affordable Care Act for two existing programs (Money Follows the Person and 1915(i) State Plan Option) and two new options (Community First Choice and the State Balancing Incentives Program).  Ten state officials were interviewed as part of the report. Staffing shortages were cited as one challenge for states in deciding whether or not to offer a new HCBS program.  New Mexico officials explained that a staff of 190 currently administers their $4 billion Medicaid program, and the current staff would have to take on the additional duties if the state was interested in offering additional HCBS.  Other challenges included a lack of existing infrastructure, staff time already devoted to implementing required changes under the Affordable Care Act, and concerns about adding another program that would add another "silo" of reporting structure, enrollment system, etc.  Maryland, Iowa, Mississippi, Missouri, and Georgia recently joined New Hampshire in participating in the State Balancing Incentives Program.   For more information, visit:

GAO: "States' Plans to Pursue New and Revised Options for Home- and Community-Based Services" "Balancing Incentives Program" 


The Winston Salem Journal reports that senior advocates in North Carolina are concerned about funding (or lack thereof) for programs serving seniors and their families. The Division of Aging and Adult Services (DAAS) reported in a May issue brief that over 12,300 seniors are waiting for services from any funding source within the past six months (based on a survey of providers who maintain waiting lists).  Eighty-eight percent of senior centers in the survey reported increased demand for their programs and services (an increase from 76% in 2010 and 85% in 2011).  The Journal reports that the wait list number is expected to increase to 17,000 if the state doesn't increase the $31.7 million currently allocated to the Home and Community Care Block Grants.  Governor Perdue's budget included an additional $2 million for these grants, the House proposed an additional $500,000, while the Senate proposed no increase.  Fifty-seven percent of responding providers said county funds had been reduced or eliminated while 60% reported the same issue with municipal funding.  For more information, visit:

The San Jose Mercury News reports that the transition from the Adult Day Health Care (ADHC) Program to its replacement program, Community Based Adult Services (CBAS), has been difficult for clients, families, and providers.  Of the approximately 35,000 people who were enrolled in ADHC, 7,000 were found to be ineligible for the new program, and about 1,800 of these clients are appealing.  Appeal hearings started in June, and Debbie Toth, the CEO of Rehabilitation Services of Northern California, told the San Jose Mercury News that an appeal hearing she attended for a 90-year old man from Walnut Creek lasted seven hours and the state sent an attorney and three officials.  California Healthline reports that part of the appeals are tied to ADHC clients who were originally identified as "presumptively eligible" for CBAS.  While advocates suggest that between 75-90% of these clients are being subsequently deemed ineligible for CBAS, a state official suggested that the denial rate is closer to 10-20%.  The co-owner of a Sunnyvale program expressed frustration that evaluations by nurses who originally assessed clients as eligible have subsequently had their assessments overturned by reviewers.  A number of centers are continuing to provide services while appeals are conducted, with the hope that they will re-coup their costs if a client is later found eligible.  The budget for CBAS for this year, with 20% fewer people is $144 million, as compared to $158 million last year for ADHC. For more information, visit:


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All Eyes On US Supreme Court Ruling Expected Tomorrow


The United States Supreme Court is expected to announce its ruling tomorrow on the constitutionality of the Affordable Care Act.  There are a number of possible scenarios with the ruling, and Kaiser Health News noted earlier this month that a ruling against the law could potentially eliminate some benefits that 49 million Medicare beneficiaries have begun using, including a 50% discount on brand-name drugs in the "doughnut hole," the annual wellness visit, and preventive services.   Advocates have prepared a variety of press releases, and CBS notes that a Senate candidate from Indiana accidently released videos he'd prepared for all outcomes, with statements including: "Well, we've had our brief moment of celebration because the Supreme Court ruled that Obamacare is in fact unconstitutional"; "We now know that Obamacare came down as a split decision"; and  "They've ruled that Obamacare is constitutional."  Intrade, an Ireland-based website that allows for betting on political events, has allowed betting on the decision, and as of Tuesday, 76% of people betting on the outcome thought that it would be found unconstitutional.  For more information, visit:

Kaiser Health News: "What's At Stake For Medicare Beneficiaries In Supreme Court Decision" 

CBS This Morning: "Democrats and Republicans gird for Supreme Court health care ruling fallout"

ABC News: "Health Care Games: The Odds Are Not In Obamacare's Favor" 


Senate Appropriations Committee Approves FY 2013 Budget


The Senate Appropriations Committee approved the appropriations bill for FY 2013 to fund the Departments of Labor, Health and Human Services, and Education, and Related Agencies on June 14.   Funding for services related to family caregivers remained relatively stable from the prior year, for example the National Family Caregiver Support Program received $153.6 million, the same amount allocated in FY 2012.  The Committee recommended $4.9 million for the Lifespan Respite Care Program, while last year's funding and President Obama's budget was $2.4 million.  While President Obama requested $9.5 million for Alzheimer's Disease Demonstration Grants (for states), the committee requested $4 million.  An appropriation of eight million dollars for adult protective service demonstrations was recommended by President Obama and by the Committee.  For more information, visit:


US Senate Committee on Appropriations FY 2013 Bills 


Public Comment Period Open For Proposed Rulemaking On Medicaid HCBS

In May, CMS announced proposed rule-making to revise regulations for state plan home and community-based (HCBS) services, also known as the 1915(i) benefit.  The proposed rules encompass several areas, including authority created under the Affordable Care Act for 5-year demonstration projects for dually eligible individuals.  In addition, the proposed regulation would require that "some individuals will be served under the State plan HCBS benefit who are not eligible to be served by Medicaid institutional services."   Family caregivers are addressed in section 7 of the Background section: "...the Act requires that the development of the service plan take into account the extent of family or other natural supports...This means that individuals with equivalent needs for support but differing levels of family or other natural supports may be authorized for different levels of HCBS."  In Subpart L, which defines the 1915(i) benefit, the definition of an independent assessment (441.662) also suggests assessing caregivers: "...and when unpaid caregivers will be relied upon to implement the service plan, a caregiver assessment."  A bill introduced by Senators Kohl and Mikulski to reauthorize the Older Americans Act also includes funding for a grant program to include caregiver assessments in programs funded by the Older Americans Act.  Comments on the proposed rules are being accepted until July 2, 2012.  For more information or to submit your comments, visit:


Medicaid Program; State Plan Home and Community-Based Services

FCA Blog: "Day 17: Assessing the Needs of Family Caregivers: An Outlook from Capitol Hill"  




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UK: 56% Of Social Care Workers Report Adult Day Center Closures

The Guardian reports on a new survey that finds that budget cuts in the United Kingdom are forcing adult day centers to close and/or dramatically reduce the services they provide.  The survey, conducted by a researcher and commissioned by UNISON (a union) was sent to 200 employees at adult day centers, and 123 responded.  While the author notes that the survey is not representative of all staff and centers, there were several themes that emerged.  Fifty-six percent of respondents reported that day centers were closing in their areas, with clients transferred to centers located further away, being combined into multi-use centers, and/or spending more time at home. Two-thirds of respondents noted that charges have been either introduced or increased for attendance, meals, and transportation.  For more information, visit:

Guardian: "Disabled and elderly see their day centres and key services disappear as budget cuts bite" 

Report: "What is Happening to Day Centre Services" 




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Survey: Buying LTC Insurance Related To Beliefs About Product, Need, And Family Availability


A recent article in Health Affairs discusses findings from a survey of approximately 3,000 American households and their attitudes towards long-term care insurance. Survey participants were asked about four factors that could influence their decisions about purchasing long-term care insurance.  The factors include preferences and beliefs (including whether or not a person believes they will become disabled); substitutes for insurance like savings; family as a substitute for professional long-term care, and concerns about long-term care insurance as a product.  Each of these four factors were correlated with whether or not participants had purchased a LTC insurance policy, for example, people who thought they could rely on family were less likely to purchase the insurance.  The authors suggest that policies intended to increase the uptake of private long-term insurance will need to target more than just one of these factors.  For more information, visit:

Health Affairs: "Long-Term Care Insurance Demand Limited By Beliefs About Needs, Concerns About Insurers, And Care Available From Family" (Abstract is free) 


Loneliness Tied To Increased Functional Decline And Increased Risk Of Dying

A recent study conducted at the University of California, San Francisco was published in the Archives of Internal Medicine and found strong ties between loneliness and function and death.  The Washington Post reports that the authors used three questions related to loneliness, and found a 60% increased risk for functional decline during a six-year follow up period (as compared to participants deemed "not lonely.").  Loneliness was also tied to a 45% higher risk of dying during the follow-up period.   While acknowledging that primary care doctors are already very busy, the authors conclude: "Ultimately, by asking about psychosocial concerns important to patients, our treatment focus may shift, and we will likely enhance the physician-patient relationship. By identifying loneliness we will be better able to target interventions intended to prevent functional decline and disability."  For more information, visit:


Washington Post: "Loneliness linked to older people's death, disability"

Archives of Internal Medicine: "Loneliness in Older Persons A Predictor of Functional Decline and Death" (Abstract and Study are free)   



Survey: 1/3 Of Women Alzheimer's Caregivers Are Part Of Sandwich Generation


A recent online survey of 2,479 women provides insight to the impact that caregiving for a loved one with Alzheimer's has on American women today.  Of the 2,479 women who responded to the survey, 58% were employed, and over 1,200 were current or former (last five years) family caregivers, and of these caregivers, 1/3 also have children under 18 living at home.  While the survey results indicate an increase in loved ones being cared for in the home, the reasons for this varied.  One-third of caregivers reported that they wanted to provide the care themselves, a quarter said they were respecting wishes of their loved one to avoid a nursing home or assisted living, but 39% reported that "no other family member could do it,""it felt expected," or "they couldn't afford or didn't like the available facility care."  About half of caregivers said they wish their loved one had an earlier diagnosis, and 84% of caregivers said they would want an early diagnosis.  Data on financial, employment, and health challenges faced by caregivers is also included in the survey write-up report, which was written by the Working Mother Research Institute.  For more information, visit:


"Women and Alzheimer's Disease: The Caregiver's Crisis"  




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Grantmakers in Aging will sponsor a webinar on Monday, July 2, from 11:00AM-12:00PM (PDT) with Kathy Greenlee, the Administrator of the recently created Administration for Community Living (ACL) and the Assistant Secretary for Aging.  The ACL was created in April 2012 by combining the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities.  The webinar will focus on the rationale for the changes, and the administration's efforts going forward.  The announcement creating the ACL received little media attention, though Dr. G Allen Power raised concerns about whether or not society is ready to embrace "full participation," and asks: "Will there be community gathering places that are truly multi-generational, or will the elders only have a "senior center" nearby for their use?"  Chris Langston at the Harford Foundation (which is sponsoring the webinar) noted that even with a greater emphasis on community living, there will remain a need for "high quality institutional care."  For more information, or to register, visit:


"Recent Changes at the Administration on Aging: Impact on the Aging and Disability Networks- Conversations with GIA"

Health AGEnda Blog: "Farewell Administration on Aging? Farewell Assistant Secretary for Aging?" 

CCAL Blog: "An "Administration for Community Living"? Yes, but..." 




Earlier this month, the Technical Assistance Center for Caregiver Programs and Lifespan Respite hosted part one of a two-part series of webinars focused on family caregiver assessment.  Carol J. Whitlatch, PhD, from the Margaret Blenkner Research Institute at the Benjamin Rose Institute on Aging, and Christina Iriving, MSW, from the Bay Area Caregiver Resource Center presented on a number of issues during the webinar, including the Who, What, Why, When, Where and How aspects of assessments.  The recorded webinar and slides are now available on Family Caregiver Alliance's website.  For more information, visit:


 Caregiver Assessment I: Why and What Should We Assess? 



Funding, Media & Miscellaneous banner

Application For 2012 Rosalinde Gilbert Innovations In Alzheimer's Disease Caregiving Legacy Awards Now Available


With continuing support from The Rosalinde and Arthur Gilbert Foundation, Family Caregiver Alliance (FCA) is pleased to oversee the annual Caregiving Legacy Awards program now in its fifth year. The program stimulates innovation in the field of Alzheimer's disease caregiving by recognizing and rewarding those efforts which lead the way in addressing the needs of Alzheimer's disease caregivers.  The deadline to apply is August 17, 2012.  For more information, visit:

Award Application

FCA Blog Post About 2011 Award Recipients and Award Reception 


Report: Average Boomer's Nest Egg Fell 1/3 Since 2007


A Bulletin from the Federal Reserve released earlier this month analyzed income, savings, and debt of Americans and found a large decrease in economic security from 2007 to 2010.  David Callahan, a senior fellow at Demos, wrote about what the decrease means for baby boomers.  For households where the head of household is between 55 and 64 years old, the median net worth was $266,200 in 2007, and dropped to $179,400 in 2010.  In addition, only 60% of families in this age group report having owning a tax-advantaged retirement account, and the median amount for families with these accounts is only $100,000.  Even without considering potential costs associated with caregiving for parents or spouses, Callahan concludes:  "Indeed, it's hard to look at the data on how the broke the Baby Boomers are without concluding that Social Security and Medicare are going to have to be more generous, not less, than these programs are today. Strangely, few leaders in Washington seem to be tuned in to this grim reality -- or ready to deal with it."  For more information, visit:


Huffington Post: "Broke Boomers and the Coming Crisis of Elderly Poverty"

Federal Reserve Bulletin: "Changes in U.S. Family Finances from 2007 to 2010: Evidence from the Survey of Consumer Finances" 


Op-Ed: "Will Medicaid Reformasaurus Come For Us Next?"


Mike Ervin, a writer and disability rights activist, wrote an Op-Ed for the New York Times earlier this month reflecting on the recently enacted legislation in Illinois that includes $1.6 billion in Medicaid "reform."  He explains that disabled children and young adults who are medically fragile, technology dependent (MFTD), will be faced with new co-payments and income caps which could force some into institutional care.  Ervin is 55 years old, uses a wheel-chair, and depends on a Medicaid waiver that helps pay for his self-directed "pit crew" who help with "the ho-hum stuff everybody does every day, like getting dressed and cooking and the laundry."  His wife also sometimes uses a motorized wheelchair, and he explains that the service they receive probably costs at least $50,000 a year.  If the waiver was eliminated, they would likely "let ourselves become impoverished to the point where we could qualify for ordinary Medicaid, which would then have to pay for our incarceration in a nursing home- probably at a much higher cost."  He concludes that if state lawmakers are willing to enact reforms that affect the MFTD kids, then  "what chance is there for a bearded, sarcastic, unsympathetic character like me?"  For more information, visit:


NYT: "Will the Reformers Come for Me, Too?" 



Research Registry section head


Family Caregiver Research Study


If you are a family member currently caring for an adult patient who due to his/her medical condition, illness, or advanced age needs help with daily living activities, or have been involved in family caregiving in the last five years, you are invited to participate in a psychological study and share your perceptions and experiences. Participants will be asked to complete a demographic profile and a series of brief questionnaires online (approx. 20-30 min). A good reading knowledge of English is required.  This study is being conducted by researcher Veronica Semenova, a doctoral candidate in the Ph.D. Health Psychology program at Walden University.  Please click here to participate.



To find caregiver support services in your state, visit FCA's Family Care Navigator

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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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