Courtesy of AARP: Long-Term Care Data at Your Finger Tips

Published in the Woonsocket Call on September 2, 2018

Across the States 2018: Profiles of Long-Term Services and Supports, by Ari Houser, Wendy Fox-Grage, Kathleen Ujvari, of AARP’s Public Policy Institute, was released days ago. The jampacked 84-page AARP reference report gives state and federal policy makers comparable state-level and national data culled from a large number of research studies and data sources, some of the data gleaned from original sources.

AARP considers the 10th edition of Across the States, published for the past 24 years, “the flagship publication” to assist policy makers make informed decisions as they create programs, and policies for long-term services and supports (LTSS). State-specific data “is easily found, “at your fingertips,” claims AARP.

Across the States, released August 27, 2018, includes a myriad of aging topics include: age demographics and projections; living arrangements, income, and poverty; disability rates; costs of care; private long-term care insurance; Medicaid long-term services and supports; family caregivers; home- and community-based services (HCBS); and nursing facilities. Each state profile is a four-page, user-friendly, print-ready document that provides each state’s data and rankings.

Looking at Trends

AARP Public Policy Institute researchers have identified four trends in reviewing state data. Of most importance to Congress and state legislatures, Across the States gives a warning that America’s population is aging. The nation’s age 85 and over population, those most in need of aging programs and services, is projected to triple between 2015 and 2050, a whopping 208 percent increase.

But, by comparison, the population younger than age 65 is expected to increase by only 12 percent. The under age 65 population, currently, 85 percent of the total population, is projected to be 78 percent in 2050. Bad news for propping up the Social Security system with the worker-to – beneficiary ratio declining.

Across the States researchers say that the demographic shift of an increasing older population will have an impact on family caregiving. “The caregiver support ratio compares the number of people ages 45–64 (peak caregiver age) to the number ages 80+ (peak care need),” notes the report. Today, there are about 7 people ages 45–64 for every person age 80. By 2050, that ratio will drop to 3 to 1.

America’s older population is also becoming more diverse, reflecting overall trends in the general population. Across the States researchers note that the Hispanic population age 65 and over is projected to quadruple between 2015 and 2050.

Finally, Across the States report notes that State Medicaid LTSS systems are becoming more balanced due to the increase of state dollars going to fund home and community-based services (specifically to care for older people and adults with disabilities). But, this trend varies in level of balance, say the researchers, noting that: “The percentage of LTSS spending for older people and adults with disabilities going to HCBS ranged from 13 percent to 73 percent in 2016. While 40 states became more balanced, 11 states became less balanced for older adults and people with physical disabilities in 2016 compared with 2011.”

Taking a Closer Look

Across the States notes that the age 85 and over population is projected to significantly outpace all other age groups when the aging baby boomers begin turning age 85 in 2031. In 2015, people ages 85 and older made up 2 percent of the US population. By 2050, they are projected to represent 5 percent. By contrast, in the Ocean State the age 85 and over population was 2.7 percent of the state’s population. By 2050, look for the oldest-old population to inch up to 5.4 percent.

Throughout the nation the cost for private pay nursing facility care is well out of reach of most middle-income families. Across the States notes that in 2017 the annual median cost for nursing facilities is $97,455 for a private room and $87,600 for a shared room. But, in Rhode Island the annual cost is higher, with a private room costing $ 104,025 and $ 101,835 for a shared room. The researchers say that for the cost of residing in a nursing facility for one year, a person could pay for three years of home care or five years of adult day services.

Because of the high costs, most people go through their life savings paying for costly care and ultimately have to rely on the state’s Medicaid program. Nationally, the percent of Medicaid as primary payer in 2016 was 62 percent (61 percent in Rhode Island).

According to Across the States, family caregivers provided $470 billion worth of unpaid care in 2013, more than six times the Medicaid spending on home and community-based services. In Rhode Island, 134,000 provided 124 million hours of care annually with an economic value $ 1.78 billion. But, AARP’s report warns federal and state policy makers about the stark demographics in America’s future that will for the nation’s “Oldest Old” to scramble to find a caregiver, due to a shortage. Will state’s have the financial resources to fund programs and services to make up for this demographic reality.

For a copy of Across the States report and Rhode Island specifics, go to: http://www.aarp.org/content/dam/aarp/ppi/2018/08/across-the-states-profiles-of-long-term-services-and-supports-full-report.pdf.

AARP Gives Us a Snapshot of the Millennial Caregiver

Published in the Woonsocket Call on June 3, 2018

AARP’s latest caregiver report places the spotlight on the Millennial generation, those born between 1980 and 1996, ages 22 to 38 in 2018. “Millennials: The Emerging Generation of Family Caregivers,” using data based primarily from the 2015 Caregiving in the U.S. study, notes that one-in-four of the nearly 40 million family caregivers in America is now a Millennial.

The 11-page report, released by AARP’s Public Policy Institute on May 22, 2018, takes a look at the Millennial’s generational experiences and challenges as they support an aging parent, grandparent, friend or neighbor with basic living and medical needs.

“Caregiving responsibilities can have an impact on the futures of younger family caregivers, who are at a particular time in their lives when pivotal social and professional networks are being formed,” said Jean Accius, PhD, Vice President, AARP Public Policy Institute, in a statement with the report’s release. “We must consider the unique needs of millennial family caregivers and ensure that they are included in programs and have the support they need to care for themselves as well as their loved ones,” she says.

The Millennial Caregiver

According to the AARP report, Millennial caregivers are evenly split by gender but also the most diverse group of family caregivers to date, notes the report. More than 27 percent of the millennial caregivers are Hispanic/Latino, or 38 percent of all family caregivers among Hispanic/Latinos.

The AARP report notes that Millennials are the most diverse generation of family caregivers when compared to other generations. Eighteen percent are African-American/Black, or 34 percent of all African-American/Black family caregivers. Eight percent are Asian American/Pacific Islander, or 30 percent of all the AAPI family caregivers, says the report, noting that less than 44 percent are white, or 17 percent of all white family caregivers. Finally, twelve percent self-identify as LGBT, which makes them the largest portion of LGBT family caregivers (34 percent) than any other generation.

About half of the Millennial caregivers (44 percent) are single and never married while 33 percent are married. If this demographic trend continues a smaller family structure will make it more likely to have a caregiver when you need one.

More than half of the Millennial caregivers perform complex Activities of Daily Living (ADLs), including assisting a person to eat, bath, and to use the bathroom, along with medical nursing tasks, at a rate similar to older generations. But, nearly all Millennials help with one instrumental activity of daily living including helping a person to shop and prepare meals.

While Millennial caregivers are more likely than caregivers from other generations to be working, one in three earn less than $30,000 per year. These low-income individual’s higher out-of-pocket costs (about $ 6,800 per year) related to their caregiving role than those with higher salaries, says the AARP report.

As to education, Millennial caregivers have a high school diploma or has taken some college courses but not finished. But, one in three have a Bachelor’s Degree or higher.

According to the AARP report, 65 percent of the Millennial caregivers surveyed care for a parent or grandparent usually over age 50 and more than half are the only one in the family providing this support. However, these young caregivers are more likely to care for someone with a mental health or emotional issue — 33 percent compared to 18 percent of older caregivers. As a result, these younger caregivers will face higher emotional, physical and financial strains.

The AARP report notes that Millennials are the most likely of any generation to be a family caregiver and employed (about 73 percent). Sixty two percent of the boomers were employed and were caregivers. On top of spending an average of more than 20 hours a week (equivalent to a part-time job) in their caregiving duties, more than half of the Millennials worked full-time, over 40 hours a week. However, 26 percent spend more than 20 hours of week providing family care.

Although most Millennial caregivers seek out consumer information to assist them in their caregiving duties, usually from the internet and from a health care professional, the most frequent source of information is from other family members and friends.

While Millennial caregivers consume information at a higher rate, most (83 percent) want more information to supplement what they have. The tope areas include stress management (44 percent) and tips for coping with caregiving challenges (41 percent).

A Changing Workforce

Millennials are encountering workplace challenges because they are less understood by supervisors and managers than their older worker colleagues. More than half say their caregiving role affected their work in a significant way, says the AARP report. The most common impacts are going to work late or leaving early (39 percent) and cutting back on work hours (14 percent).

As we see the graying of America, it makes sense for employers to change their policies and benefits to become more family friendly to all caregivers, including Millennials, to allow them to balance their work with their caregiving activities.
It’s the right thing to do.

To read the full report, visit: https://www.aarp.org/ppi/info-2018/millennial-family-caregiving.html.

Visit http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Prepare to Care Guides.

Congress Passes RAISE Family Care Givers Act

Published in the Woonsocket Call on January 14, 2018

With the dust finally settling after the heated partisan battles over the dismantling President Obama’s landmark Obamacare and later reforming the nation’s tax code, Congressional Democrats and Republicans put political and philosophical differences aside to overwhelming pass by voice vote the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017.

The RAISE Family Caregivers Act of 2017, introduced in the U.S. Senate by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), was passed on January 8, 2017. Two months earlier a House companion measure (H.R. 3759), introduced by Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL), was passed. At press time, the legislation now heads to the President’s desk to be signed into law.

The caregiver legislation would direct the U.S. Secretary of Health and Human Services to develop and sustain a strategy to recognize and support family caregivers across the nation. This bipartisan legislation has been endorsed by more than 60 aging and disability organizations, including AARP, the Alzheimer’s Association, the National Committee to Preserve Social Security and Medicare, the Elizabeth Dole Foundation, the Michael J. Fox Foundation, and the Arc.

Universal Praise for Congressional Passage

Congress clearly understands that caregiving is not a partisan issue but a life experience for millions of Americans.Yes, everyone at some time in their life may take on the role of caregiver for parents, spouses, children and adults with disabilities, or personally know caregivers.

According to AARP’s Public Policy Institute, there are 40 million family caregivers in the United States who provided an estimated $470 billion in uncompensated long-term care in 2013. In the Ocean State at any time during the year, an estimated 134,000 Rhode Island family caregiver step up to provide 124 million hours of care for an aging parent or loved one, most often helping them to live independently in their own homes.

“Family caregivers play an essential role in our communities by dedicating time and attention and making countless personal and financial sacrifices to care for their loved ones,” said Sen. Collins upon the Senate bills passage. “I am delighted that our bipartisan legislation to develop a coordinated strategic plan to leverage our resources, promote best practices, and expand services and training available to caregivers will now become law,” adds the Maine Senator, who chairs the Senate Special Committee on Aging.

Senator Sheldon Whitehouse sees the value of the RAISE Family Caregivers and its impact to Rhode Island caregivers. “The passage of the bipartisan RAISE Family Caregivers Act is an important first step toward easing the burden on the caregivers who mean the world to the family members they care for.” says the Rhode Island Senator who serves on the Senate Special Committee on Aging.

“Family caregivers play a key role in supporting their loved ones in Rhode Island and throughout the nation. adds Democratic Policy and Communications Committee Co-Chair David N. Cicilline. “The RAISE Family Caregivers Act ensures that family caregivers have the support and the resources they need to do their jobs safely and effectively. As a co-sponsor of H.R. 3759, I made sure my colleagues understood that this bill needed to become law as soon as possible, and I am glad that it passed both Chambers without objection. Now I urge President Trump to sign it and allow this important law to take effect”

“Thanks to the efforts of bipartisan Senate and House champions—Senators Collins and Baldwin and Representatives Harper and Castor—the RAISE Family Caregivers Act will help address the challenges family caregivers face,” said AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond, in a statement. “Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources, and take a break so they can rest and recharge,” she says.

According to LeaMond, family caregivers take on a range of tasks including managing medications, helping with bathing and dressing, preparing and feeding meals, arranging transportation, and handling financial and legal matters. She estimates that the unpaid care that family caregivers provide helps delay or prevent costly nursing home care, which is often paid for by Medicaid.

What’s in the RAISE Family Caregiver Act?

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and update a national strategy to support family caregivers. The legislation would also create a Family Caregiving Advisory Council comprised of relevant Federal agencies and non-federal members, also including family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocacy organizations engaged in family caregiving, state and local officials, and others with expertise in family caregiving.

The newly established Advisory Council (meetings open to the public) would be charged with making recommendations to the Secretary. The strategy would be updated to reflect new developments. The Advisory Council’s initial report would include an initial inventory and assessment of federally funded caregiver efforts that would be incorporated into the initial strategy. The strategy would then identify recommended actions that government, providers, communities, and others could take to support family caregivers.

The development of the initial strategy would take up to 18 months, followed by updates of the strategy biennially. The bill would improve the collection and sharing of information, including information related to evidence-based or promising practices and innovative models regarding family caregiving; better coordinate, assess, maximize the effectiveness, and avoid unnecessary duplication of existing federal government activities to recognize and support family caregivers. The strategy and work around it could help support and inform state and local efforts to support family caregivers, promoting greater adoption of person- and family-centered care in all health and Long-Term Service and Support (LTSS) settings, with the person and the family caregiver (as appropriate) at the center of care teams

In addition to requiring the development of a strategy to support the nation’s family caregivers, the bill also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.

The activities under the bill would be funded from existing funding appropriated for the Department of Health and Human Services. No new funding is authorized and it would sunset in five years.

Calls for More Caregiver Assistance

“In Rhode Island, we’re working hard at staying ahead on legislation supporting caregivers,” said AARP Rhode Island State Director Kathleen Connell. “We passed temporary caregiver insurance, which covers thousands of working caregivers with salary protection much like TDI (Temporary Disability Insurance). Earned-paid sick leave fills in a gap that caregiver TDI may not cover in emergency situations. The AARP-back CARE Act now requires hospitals, upon admitting patients, identify a designated caregiver, inform that person on discharge and provide training for at-home medical tasks. We have passed legislation making it easier for caregivers to modify their homes. And just this month, the state opened applications for a grant program we fought for in the current budget that provides up to $5,000 in hard cash for caregivers who make qualifying home improvements.” (Download a grant application at http://www.aarp.org/ricaregiving)

“We cannot stop here,” added Connell. “And the RAISE Act keeps the need for ongoing strategic planning and smart policymaking on the front burner. The numbers demand escalating action that will improve conditions not just for people who need care, but their family caregivers as well. But it is very important to emphasize that all taxpayers benefit when someone with chronic illness or aging disabilities can stay in their homes, rather than move into Medicaid-supported nursing homes. We all win when we support caregivers.”

NOTE: “The Rhode Island Chapter of the Alzheimer’s Association has a commitment to assisting caregivers navigate the various challenges of caring for someone living with Alzheimer’s and other related dementias,” says Donna McGowan, Executive Director of the Alzheimer’s Association, RI Chapter. Call 1-800-272-3900 for details about caregiver and provider services (including confidential support, information, and referrals to local resources via access to a 24/7 Helpline, care consultation, caregiver support groups, education programs for families, and online information (www.alz.org/ri ).