Caring for our Seniors: Rebalancing Long-Term Care Services in North Carolina

Donna Futoransky never expected to be looking for a part-time job. She never expected to be personally caring for her elderly parents well into her own retirement. She never expected that she would one day have to move her mother and father into her own 869-square-foot home.

But that’s what happened when her parents’ life savings and thoughtful planning became another victim of the Great Recession.

“They lost a tremendous amount of money,” says Donna, a 70-year-old former physical therapist and director of nursing home public relations.

Donna decided to move to North Carolina in 2006 to be closer to her daughter, son-in-law, and grandchildren. Her parents moved into an assisted-living facility nearby, as well.

“I had figured with what they would pay a month, including inflation, with the money they had, they would be able to live there until they were 96,” Donna says.

But then the recession hit in 2008, gutting her parents’ life savings and the careful plans for their long-term care. It became clear to Donna that her parents would not be able to stay in the assisted-living facility.

Donna decided she would have to move her parents in with her. After speaking with her parents, they decided to build an apartment extension on to Donna’s house, keeping the family close together. They took what was left of her parents’ savings, combined with Donna’s own savings, and began construction.

In 2009, with construction complete, Donna’s parents moved in with her. Her parents managed well, helping each other with daily activities. This gave Donna peace of mind when she was away, knowing they were together in the event of an emergency.

Then in 2010, her father passed away, one month shy of his 90th birthday. Initially, Donna still worked full time. She was fortunate to have an employer that understood her situation and was willing to be flexible with her schedule.

“When you don’t have anyone else to think about, you really don’t think about, ‘Well, I have to make an appointment, but the doctor’s not there on Monday or Friday. Oh well, I’ll go Tuesday,’” says Donna. “Well, if you are working, and Monday and Friday are your best days then you have to make some kind of arrangement to change your work schedule or whatever. Fortunately, I was in a situation that it wasn’t critical that I be there at a certain hour, but I still had to put my hours in.”

Eventually, Donna retired, but with her parents’ depleted savings and the cost of caring for an aging mother, she needed to look for a part-time job to help make ends meet.

“My mother gets social security. She gets Medicare taken out, and then she has to pay for her secondary insurance, and for the dentist,” says Donna.

“We had to use the money. We had to provide a place [for them],” Donna says. “If we hadn’t, and then my mother and father’s money had run out, and we had this little house, then what? We used up what we had in order to accommodate all of us, and now, now we’re in a position where we need money. I’m 70 years old and now I’m in a place where I have to look for a job.”

“There aren’t a lot of people looking for someone 70 years old for work.”

Yet Donna and her mother Sophia are upbeat and optimistic about their situation. They know that not everyone has extended family close by who can help care for an aging parent when the primary caregiver needs a break. They know that not everyone has the means—financial, physical, and emotional—to live with an aging parent and instead must consider institutionalized care.

“There are so many people that have this same situation but that are not as fortunate as we are,” says Donna. “They don’t have family supports; they don’t have a nice place to live.”

An Aging Demographic

In North Carolina and across the nation, long-term care for the elderly is increasingly becoming a social, economic, and political issue. The growing population aged 65 and older, as well as budget constraints at the state level, are central to this issue.

Nationally, the first wave of Baby Boomers are entering retirement at a time when their parents are living longer and both generations have witnessed an erosion in their savings due to the Great Recession. It has been described as a “Silver Tsunami,” a demographic shift that will swell the ranks of those 65 years old and over, with a Baby Boomer turning 65 every eight seconds in this country.¹ Currently, there are more than 40 million Americans aged 65 and older, 13 percent of the total population.² Of those seniors, 34 percent live at 200 percent below the poverty level and five million need long-term care services.³

A U.S. Census Bureau report projects that, by 2050, more than 88 million Americans will be aged 65 and over, a more than 48 million person increase from 2010.⁴  By 2030, all of the Baby Boomer generation will be aged 65 and older, increasing the nation’s older population from 13 percent of the total population in 2010 to 19 percent by 2030.⁵ The number of those aged 85 years and older, a group that is most likely to need long-term care and assistance with activities of daily living (ADLs), will increase by 70 percent between now and 2033.⁶ (See Figure 1.)

Figure 1⁷

In 2013, 14 percent of the state’s residents were 65 and over.⁸

By 2033, 20 percent of the state’s population will be over the age of 65 and the percentage of residents 85 years and older will grow to 2.6 percent of the state’s total population. (See Figure 2.)

Figure 2⁹

That translates to a nearly 54 percent projected increase in the 65- to 74-year-old age bracket between 2013 and 2033, a 102 percent increase in the 75- to 84-year old age group, and an 88 percent increase in residents 85-years old and over.¹⁰

Of the population aged 65 and over in the state, the age group of 75- to 84-year-olds will grow more rapidly in the next two decades. Beyond 2030, the growth will shift into the ages 85 and over bracket, as the 2.4 million baby boomers move into this age group. However, 41 counties in the state are already projected to have more growth in the 85 and over population between 2013 and 2033.

In 2013, North Carolina had 60 counties with a larger population of residents 60 years and older than 17 years and younger. By 2025, that number is projected to jump to 90 counties.¹¹ By 2018, the state as a whole will have more residents 60 and over than 17 years and younger (see Figure 3).

Figure 3¹²

Another way to measure the impact of the increase in the nation’s elderly population is through a “dependency ratio,” or “the ratio of the dependent-age population young or old) to the working age population.”¹³

Between 2010 and 2030, the nation’s dependency ratio is projected to experience a sharp increase due almost entirely to the aging of the Baby Boomer generation.¹⁴

A 2011 News & Observer editorial by demographer James Johnson, a professor at the University of North Carolina–Chapel Hill’s Kenan-Flagler Business School, noted that as of 2010 there were 66 dependents for every 100 employed workers.¹⁵

Johnson has described the state’s growing elderly population and the resulting economic ramifications as a “huge dependency problem for the state,”¹⁶ with the state’s uneven population growth as “a fiscal train wreck in the making.”¹⁷

Financial Impact of Long-Term Care

An investment company’s survey noted that Baby Boomers are ill-prepared for retirement and are increasingly relying on credit cards to make ends meet, with as many as 74 percent of respondents saying they will need to “rely heavily on Social Security in retirement.”¹⁸

And a separate survey conducted by Nationwide Financial noted that only a quarter of respondents over age 50 said they had purchased long- term care insurance and about 22 percent indicated they would use retirement savings to pay for any long-term care services they might need.¹⁹

The financial issues facing future retirees is compounded by the effects of the Great Recession, meaning depleted savings, retirement, and, in cases of unemployment, lost wages. In addition, many continue to financially support adult children who are themselves trying to recover from the economic downturn.

“A lot of the baby boomers are staying in the workforce longer to assist their adult children and using their savings,” says Dr. Peggye Dilworth-Anderson, Interim Co-Director of the University of North Carolina at Chapel Hill’s Institute on Aging and Co-Director of the Institute’s Aging and Diversity program. “That means less retirement for them.”

North Carolina’s dependency problem is compounded by the fact that many seniors move into poverty as they age,²⁰ a trend that is likely to continue and increase as Baby Boomers live longer and spend down their retirement and other savings.

Also, many aging Boomers and those recently retired are forced to care for aging parents who are living longer and will increasingly need supports for activities of daily living.

The “sandwiched” nature of the generation also means that more and more Boomers are faced with the difficult decision of how to spend time with and money on aging parents, adult children, and grandchildren.²¹ The study analyzes data from the 2008 panel of the National Health and Retirement Study combined with estimates  to determine the extent to which older adult children provide care to their parents, the roles gender and work play in that caregiving, and the potential cost to the caregiver in lost wages and future retirement income as a result of their support. After cases with missing data were eliminated from the 2008 panel, the sample was restricted to 1,112 men and women who had a parent living.]

Long-Term Care Spending

In 2010, spending in the United States for long-term care totaled $342 billion dollars. More than 40 percent of that amount was covered by Medicaid. In 2009, Medicaid spent $34,579 on average per elderly enrollee who was receiving some form of long-term care service, such as nursing home care, community care, in-home health care, home modifications, or transportation. That same year, only “32 percent of elderly Medicaid enrollees used long-term care services, but they accounted for 74 percent of all Medicaid spending on the elderly.”²²

While institutional care, such as nursing home care,²³ still accounts for the majority of long-term care spending in most states, there is a growing trend toward rebalancing Medicaid spending to include more home- and community-based services (HCBS). The trend toward a more equal rebalancing of long-term care spending is based in part on a realization that the cost of nursing home care usually exceeds that of home- and community-based care, as well as an increased consumer demand for services outside the institutional setting. The U.S. Supreme Court’s ruling in the 1999 Olmstead vs. L.C. case, which declared that states have to provide treatment for individuals with mental disabilities in the least restrictive setting, forced states to expand access to community-based care.²⁴

In the 10-year period between 1999 and 2009, HCBS spending increased substantially, and HCBS expenditures now account for 19 percent of Medicaid long-term care spending nationally.²⁵  Between 2000 and 2010, annual Medicaid spending on HCBS as a proportion of total Medicaid long-term care services and supports spending increased from $19.5 billion to $52 billion nationally.²⁶

In many ways, North Carolina has made good progress toward rebalancing its Medicaid long-term care spending.

A 2013 national analysis of Medicaid spending for fiscal year 2009 shows that 32 percent of the state’s long-term care expenditures for elderly Medicaid enrollees went to home- and community-based care, ranking the state eighth highest in the country for the fiscal year and well above the national average of 19 percent.²⁷

Additionally, North Carolina ranked 11th in the nation in total Medicaid spending on elderly enrollees ($1.946 million) and was 7th  in total enrollment for Medicaid- eligible elderly enrollees (182,522), ranking the state 17th in the country in terms of elderly Medicaid enrollment as a percent of total Medicaid enrollment (10 percent).²⁸

By other measures, however, North Carolina lags behind other states in spending on its elderly Medicaid enrollees. For example, in terms of total expenditures for elderly enrollees as a percentage of total Medicaid expenditures, the state ranked 40th (18 percent), falling below the national average of 23 percent, and the spending of neighboring states such as Virginia (20 percent) and South Carolina (20 percent), as well as other regional neighbors like Georgia (19 percent) and West Virginia (22 percent).²⁹

In the 2009 fiscal year, the state ranked 10th in total number of elderly Medicaid enrollees in a nursing home (30,391), yet spent only $24,569 per elderly long-term enrollee, placing it sixth from the bottom in national rankings and well below the national average of $34,579.³⁰

Based on state expenditures³¹ for individuals 60 years and older, almost 43 percent of the state’s spending went to institutional care in fiscal year 2012–13, a slight increase from 40 percent in 2003–04. And the state spent 15.5 percent on home health and in-home care and just 6 percent on adult home care in 2003–04, compared to 15.2 percent on home health and in-home care and 4.5 percent on adult home care in 2012–13.³²The percentages have remained relatively constant over the past ten years, and there has been minimal movement at the state level from institutional care to home- and community-based expenditures. By State Fiscal Year³³ (SFY) 2012–13, institutional care accounted for 43 percent of the state expenditures, yet spending on home health and in-home care and adult home care remained the same or decreased. (See Figure 4.)

Figure 4³⁴

Though spending on institutional care maintained a somewhat steady increase from SFY 2003–2004 to SFY 2012–13, spending on home health and in-home care peaked in SFY 2007–2008 at 19.5 percent of total state expenditures, but declined to 15.2 percent by SFY 2012–13.³⁵

In terms of real dollars for state expenditures on individuals 60 years and older, the state spent $1,387,659,583 on institutional care in SFY 2012–13, a $294,318,241 increase from SFY 2003–04 spending of $1,093,341,342. (See Figure 5.) On average, between SFY 2003–04 and SFY 2012–13, the state spent $1,318,254,066 on institutional care for individuals 60 years and older.³⁶

Figure 5³⁷

By comparison, the state spent a combined $642,113,247 in the categories of adult-care homes and home health and in-home care in SFY 2012–13, an increase of $47,149,530 from the combined spending of the SFY 2003–04 expenditures of $594,963,717 for those service categories. On average, between SFY 2003–04 and SFY 2012–13, the state spent $707,496,371 on adult-care homes and home health and in-home care for individuals 60 years and older, $610,757,695 less than the amount spent, on average, for institutional care during that same time period.³⁸

Emotional and Financial Impact on Family Caregivers

Health Impact

According to Heather Burkhardt, a planning and evaluation coordinator at the North Carolina Department of Health and Human Services’ Division of Aging and Adult Services, family caregivers provide the backbone of the state’s long-term services and supports. They will shoulder the greatest burden of meeting the increased demand for long-term care services as more North Carolinians age into the elderly demographic and need assistance with activities of daily living, increasing demand on state resources.

A study by The MetLife Mature Market Institute reported that the “percentage of adult children providing personal care and/or financial assistance to a parent has more than tripled over the past 15 years” and that 25 percent of adults, typically Baby Boomers, are providing care to an aging parent.³⁹

“We know that family caregivers provide 80 percent of the long-term care services and supports,” says Burkhardt. “They provide a huge resource. Providing supports to family caregivers are the kinds of low-cost solutions that enable them to provide care longer, thereby avoiding or delaying the need for costly institutional care.”

Burkhardt believes the state can support those unpaid caregivers through education, training, and support groups. And, perhaps most importantly, through respite programs that offer family caregivers a weekly opportunity to step away from their responsibilities. In 2008, Burkhardt’s office did a two-part survey of caregivers and those they provided services to. The first survey asked whether caregivers needed a respite from their duties. Then, one year later, the survey followed up with the same caregivers.

“We found that people who needed respite and didn’t get it were much more likely to place their loved one in institutional care than those who got the respite they needed,” says Burkhardt.

“We need programs that enable older adults to remain in the place of their choice with appropriate services and supports and supporting family caregivers is a key feature in making that a reality for many families.”

One survey of long-term care providers found that 92 percent of community residents who need long-term care receive unpaid help,⁴⁰ usually in the form of family members who are “far and away the principal providers of assistance to the long-term care population living in households.”⁴¹ More than 75 percent of community-based adults needing long-term care assistance depended upon a family member for those services. Depending on age, unpaid caregiving responsibilities usually fall on a spouse until about age 74 and then mostly on adult children.⁴²

The strain of caring for an aging relative can have a negative effect on the health of the caregiver, including increased levels of anxiety and depression.⁴³

“When caregivers don’t get respite, whatever form that may take, they have more physical and emotional problems. Meaning they don’t get away from the caregiving role,” says Dr. Peggye Dilworth-Anderson, Interim Co-Director of the University of North Carolina at Chapel Hill’s Institute on Aging and Co-Director of the Institute’s Aging and Diversity program. “Caregivers need a lot of education on what it means to be a caregiver. It is about more than love. It is about having skills, respite, resources, and a system of care that supports you. Most people don’t realize that.”

Financial Impact

In addition to health issues, full-time adult caregivers also face staggering losses in personal wealth and potential income.The MetLife Mature Market Institute study found that the total lost wages and benefits for someone leaving the workforce to act as a full-time caregiver was $274,044 for a woman and $233,716 for a man. When losses to private pension funds are factored in, the amount increases to $324,044 for women and $283,716 for men.⁴⁴

The MetLife report notes that when the average amount, $303,880, of lost wages, benefits, and retirement savings is calculated and “multiplied by the 9.7 million people 50+ caring for their parents, the amount lost is $2,947,636,000,000, or nearly $3 trillion” in lost wages and savings.⁴⁵

In addition to lost income, an individual’s caregiving responsibilities can also affect career advancement due to missed opportunities for “promotions, business travel, relocation, and education,” as well as lost skills and training.⁴⁶

Family Structure

As more and more seniors need long-term care, and extra strain is put on family members to provide that unpaid care, policymakers and business leaders will need to consider the changing makeup of the modern family structure as they provide supports to their citizens and employees. As the 60+ demographic grows over the next two decades, the families that care for these older adults will include more same sex families, more families with multiple parents, and more families caring for adult children.⁴⁷

“The largest caregiving workforce is the family,” says Dr. Dilworth-Anderson. “If the family changes in configuration and structure, then we have to change our structure to engage the needs of the elderly within that structure. Needs are not different, but the families are different.”

Not only is the traditional structure of the family evolving, but more families are becoming geographically dispersed, meaning adult children are farther away from aging parents who may need care. One of the benefits of the state’s increasingly metropolitanization is that urban centers have more amenities and care centers for seniors, making access to care less of a roadblock.

“When you get out in to the rural areas, you don’t have that,” says Dr. Dilworth- Anderson. “It is a myth that family members are next door. In fact, rural patients are more likely to be institutionalized.”

Affording the Care

Cost Differences of Institutional Care, Assisted-Living Communities, Adult-Day Services, and Home Care Services

In 2011, the MetLife Mature Market Institute conducted a market survey of the costs of long-term care options in the United States, including institutionalized (nursing home), assisted-living communities, home care, and adult-day services.⁴⁸

The findings show a national average increase of 4.4 percent in the cost of institutionalized care. The cost of a private room in a nursing home rose from $83,585 in 2010 to $87,235 in 2011. A semi-private room increased from $74,825 to $78,110 in the same time period.⁴⁹  Those costs can increase for the care of those suffering from dementia or afflicted with Alzheimer’s. Of those few facilities reporting separate rates based on Alzheimer’s and dementia diagnoses, the 2011 average annual rate for a private room was $91,615 per year and $81,030 for a semi-private room.⁵⁰

The national cost for assisted-living communities, on average, increased 5.6 percent from $39,516 per year in 2010 to $41,724 in 2011.⁵¹ As with nursing home care, the annual cost in an assisted-living community can increase for those with dementia or Alzheimer’s. Of those assisted-living facilities reporting separate rates for Alzheimer’s and dementia patients, the 2011 average annual rate was $55,428, which actually represents a decrease from the 2010 rate of $57,144; however the cost is still greater than facilities for those without dementia or Alzheimer’s.⁵²

Figure 6⁵³

The cost of community-based care and in-home services, though well below the average annual costs of nursing home and assisted-living care services, increased at a similar rate. The annual costs of adult-day services increased 4.5 percent, from $67 a day in 2010 to $70 in 2011. The cost of home care was $20 an hour for a home-health aide and $19 an hour for a homemaker (non-medical assistance). In terms of annual costs, adult-day services cost $18,200 in 2011, compared to $21,840 for a home- health aide and $19,760 for a homemaker.⁵⁴

Figure 7 ⁵⁵

In North Carolina, the average cost of nursing home care for 2011 was $217 per day for a private room ($79,205 per year) and $194 for a semi-private room ($70,810 per year).⁵⁶ The average cost for an assisted-living facility in the state was $3,605 per month ($43,260 per year).⁵⁷  Adult-day services cost on average $51 a day in North Carolina ($13,260 per year).⁵⁸ The average cost of a home-health aide in the state was $19 per hour for 2011.⁵⁹ A 2014 Cost of Care Survey found the following average rates:

Cost Survey ⁶⁰

Financial Benefits of In-Home and Community-Based Care

A 2011 survey by the AARP’s Public Policy Institute examined existing state-level analyses of the cost savings of rebalancing long-term care spending to include more  home  and  community-based  services  (HCBS). The  studies  indicate “cost containment and a slower rate of spending growth as states have expanded HCBS” and “much lower per-individual, average costs for HCBS compared with institutional care.”⁶¹

The report was a literature review of 38 reports from 25 states with published data on long-term care funding for the elderly and disabled. According to the report, North Carolina had no published studies and was not included in the review.⁶²

Examples of potential cost-effective approaches include a 2008 analysis of transitioning “low-care need” nursing home residents to community-based programs in Arkansas. The report found the state spent approximately $59 million on its 12,399 institutionalized low-care Medicaid recipients, an amount that could be reduced by transitioning those individuals to a community-based setting.

A 2011 analysis of the state’s Community Connector Program, a program “that targets individuals at risk for entering nursing homes and links them with appropriate community-based services and supports,” found that HCBS services resulted in “a 23.8 percent average reduction in annual Medicaid spending per participant” and net savings of “$2.619 million for the 919 individuals included in the study’s intervention group, or a return on investment of $2.92 per dollar invested in the program.” ⁶³

A California study found the state spent three times more on Medicaid recipients in institutionalized care than in home- and community-based care, more than $32,000 for institutionalized care per recipient compared to just over $9,000 for those receiving care in a home- or community-based setting.⁶⁴

A 2011 Maryland assessment of the state’s Money Follows the Person program, a federal demonstration grant to transition eligible individuals out of institutional care and back into their homes and communities, found that the state’s Medicaid system saved more than $3,000 per member, per month after transitioning from institutionalized care to home- and community-based care.⁶⁵

Ohio experienced a 114 percent increase in individuals claiming the state’s HCBS Medicaid waivers, resulting in a savings of $100 million from 1997 to 2009. An analysis of New Jersey’s efforts to rebalance its long-term care spending found the state saved $138 million from 2008 to 2011. Another study found Rhode Island’s rebalancing efforts saved the state more than $35 million over a three-year period.⁶⁶

The AARP policy brief notes that some of the state-level studies cited the difficulty in evaluating a comprehensive cost-benefit analysis of institutional care and home- or community-based care, due in part to the difficulties of gathering and analyzing data dispersed across multiple state and federal agencies.

Long-Term Care Programs in NC:

Program for All-Inclusive Care for the Elderly (PACE)

Money Follows the Person

Just For Us

In-Home Health Care Aides

According to the U.S. Bureau of Labor Statistics’ Occupational Handbook, the growth rate for home-health and personal-care aides will increase by 48 percent and 49 percent, respectively, between 2012 and 2022.⁶⁷ Home-health aides provide basic medical services in the home and personal-care aides assist elderly and disabled clients with the basic activities of daily living, such as bathing, housekeeping, and cooking.⁶⁸  Combined, changes in employment for both professions is expected to increase by 1,005,000 positions by 2022. The potential growth in both career fields could provide jobs for millions left unemployed due to the Great Recession, particularly those with only a high-school diploma or less. A high-school diploma or less is generally sufficient education for home-health and personal-care aides, with employers often willing to provide on-the-job training.⁶⁹

According to the U.S. Bureau of Labor Statistics, the median average annual salary of a home-health aide as of 2012 was $20,820 and $19,910 for a personal-care aide. That is an annual salary that translates into a median hourly compensation of less than $10.00 per hour for a full-time job.⁷⁰

A CNNMoney article notes that “it’s no surprise that about 40% of home aides rely on public assistance, such as Medicaid and food stamps, just to get by.”⁷¹

The same article states that home health aides are not covered under federal laws governing minimum wage and overtime compensation, due to an exemption in the 1974 Fair Labor Standards Act.

The results of the 1974 law classified home health aides as companionship workers, the same categorization as babysitters, meaning that in some cases employers do not have to pay them minimum wage or time-and-a-half for overtime. In September 2013, the United States Department of Labor announced a change to the exemption in the 1974 Fair Labor Standards Act. Effective January 2015, employers will be required to pay direct-care workers a minimum wage and compensate for overtime.⁷²

A report by the National Domestic Workers Alliance on domestic workers, which includes personal caregivers, found that those professions are also disproportionally female and minority, with 95 percent of all domestic workers being female and 48 percent being Latino and African American.⁷³

The job of a health aide is the “single most common job for black women.”⁷⁴

Additionally, most of these positions do not provide benefits, including retirement and insurance. The report notes that 65 percent of domestic workers do not have health insurance, only 2 percent receive retirement benefits or a pension, and nearly half do not earn a wage that can support a family.⁷⁵

The CNNMoney article notes that the home health care industry is struggling to keep its services affordable at a time of rising demand and when states are cutting Medicaid services to trim their budgets.⁷⁶

Rates ⁷⁷

“There is a high turnover rate in terms of certified nursing assistants,” says Dr. Peggye Dilworth-Anderson. “We need to educate the workforce, train the existing workforce, and pay people more money.”

“The high turnover rate is due in large part to the low wages and lack of job security and benefits on the job,” says Dr. Dilworth-Anderson. “The industry is disproportionately skewed toward poor women, immigrant women, and women of color. It is a barnacle workforce taking care of a barnacle population. That is a risky situation. It does speak to how we are not valuing individuals—the older people and the workforce. It is a varied gender situation because we are talking about poor women taking care of other sick women. That is very political in the sense of who we value in society. Some would argue we don’t value women in the workforce. Some would say we don’t value the elderly. There is a lot of evidence to say both are true.”

Conclusion

Over the next two decades, the state of North Carolina will be faced with a growing cohort of older residents, many of whom will need assistance with activities of daily living and more intense long-term care services. The increasing demand on state resources will inevitably strain the state’s Medicaid system and place demands on other governmental agencies that provide economic supports and human services.

“We can’t meet the demand we have now,” says Heather Burkhardt, with the North Carolina Department of Health and Human Services’ Division of Aging and Adult Services. “We need more creative solutions and to support public/private partnerships. It can’t be just more government funding.”

To meet the demand for increased long-term care, the state will need to focus on all the forms of caregiving available to an individual and their families, including better governmental supports for private caregivers, training and education for employers on how to support employees caring for aging loved ones, and a more strategic use of Medicaid long-term care expenditures to make sure costly institutional care is provided only for those who need it most. For older adults who can stay in their homes and communities, programs like PACE, Just for Us, and Money Follows the Person, should provide the support and resources instead.

“It is not simply that North Carolina or other states spend too much money on institutional care,” says Dr. Gregory Boyer, a research associate at the University of North Carolina at Chapel Hill’s Institute on Aging. “With Medicaid, it is a required benefit under law since it has been enacted, whereas home- and community-based care is at the mercy of the economy. We know there are people being institutionalized who could be served better in the home or community, but if there aren’t the appropriate funding or policies [in place], they will be institutionalized.”

The growing demographic of seniors means the state, as well as families and businesses, will need to reconsider how the aged and medically frail are cared for as illnesses and disabilities affect their independence. It means moving beyond a linear path of retirement to aging to illness to nursing home and instead to a more dynamic continuum of care where nursing homes are available for those who need them but systemic policies are in place for those who don’t. These seniors can then transitio back into homes and communities as they heal. It can be a more cost-efficient model, and one that is more individual-centered rather than system-driven.

“I like to think about care on a continuum and with transitions,” says Dr. Dilworth-Anderson. “People can go from home to hospital to sub-acute care to back home again. It is not home and institution. All this care is being given at the same time.”

“North Carolina needs to maintain a strong continuum of care that includes high quality community options as well as high quality institutional care,” says Heather Burkhardt. “If we have all the options, people will have a choice in which setting best meets their preference and needs. We need to have a long-term service and support system that is person-centered and provides various levels of care and settings.”

For Donna Futoransky, who is caring for an aging loved one and navigating her own retirement, the day-to-day obligations of her caregiver role have caused her to reflect more on her own future care.

“Every day that I get older, I think about it [long-term care],” says Donna. “I don’t know if it scares me, but I do think about it. And I have thought about it more when I see what is happening with other people and where they have to put their parents.”

Donna’s time working in the nursing home industry helped her appreciate how important the nursing home option is for families who can no longer afford to care for a sick family member, despite their desire and willingness to do so.

“I was crying right along with the people who were bringing their family members in,” says Donna. “They were so devastated. [These were] large families with sons and daughters who would have opened their homes in a minute, but didn’t have the capability to take care of them [anymore].”

“Some of the nursing homes I worked at were wonderful—some were ok,” Donna says. “But I don’t want to have to visit my mother in a nursing home, so we will do everything we can to make sure she doesn’t have to do that [move to a nursing home].”

Yet Donna often wonders how others in similar situations manage, especially those whose families weren’t as well prepared as hers.

“Fortunately, I was in a position where I could do this. I was making the decision for myself. And I signed up for it,” says Donna. “[But] if you sign up for it or not, it’s a challenge. Period. It’s a challenge. It’s a challenge for my mother, because she doesn’t have the privacy she would ordinarily have. It’s a challenge for me that I don’t have the freedom that I might have had, and that’s not a complaint, it’s just a fact.”

 

For now, she’s enjoying the time she has been given with her mother and the chance for her grandchildren to know their great grandmother.

“I’m so glad we have the opportunity to be able to have her here.”

Her mother, Sophia, agrees. “She’s such a loving daughter. She’s been so good to me. I’ve got a happy life.”

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Todd Brantley is a researcher and writer from Raleigh. Amy Brantley is a medical instructor and physician assistant at Duke Family Medicine Center in Durham.

Figure and Graph Design by Carol Majors.

Aging