Caring For Our Loved Ones Got Complicated

Wake up America! The care needs for people with long-term health problems are drastically increasing (https://www.ncbi.nlm.nih.gov/books/NBK217736/). They can be medical (physical and mental) and/or social. More clients in need of long-term care are finding themselves alone, with no family or friends to help with caretaking. And even those with support systems in place realize that the complexity of caring for someone with chronic or permanent health conditions is overwhelming.

We really have our heads in the sand with this issue since we have few policy changes occurring in the medical, social, financial, and political arenas. Our current system has tremendous shortcomings, and yet the financial burden of long-term care is escalating.

What is Long-Term Care ?
Health Care Financing Review defines Long-Term Care (LTC) as ”the health, social, and residential services provided to chronically disabled persons over an extended period of time.” Although we associate long-term care with the elderly population, LTC also includes the physically and mentally disabled of any age. The U.S. Department of Health and Human Services notes: “Long term health care refers to the professional or personal services required on a recurring or continuous basis by an individual because of chronic or permanent physical or mental impairment.”

What is the usage and cost of LTC?

• According to the U.S. Census Bureau, the aging population (over 65) will increase from 14.9 %  (47.8 million) to 19% in 2030.  In 2018, the U.S. long-term care market size was valued at USD 415.2 billion (https://www.grandviewresearch.com/industry-analysis/us-long-term-care-ltc-market).
• At least 2/3 of the elderly population in America will require long-term care.
• The average daily price of a nursing home in NYS is $361/day, which translates to over $131,000/year and for that price you get to share a room (https://www.dfs.ny.gov/consumer/ltc/ltc_about_cost.htm).
• But more people want to stay in their homes, so the trend is moving to long-term care in the home. There are 34.2 million Americans who have provided unpaid care to an adult aged 50 or over in the past 12 months at an estimated dollar value of $470 billion (https://www.morningstar.com/articles/879494/75-mustknow-statistics-about-longterm-care-2018-ed).
• There are shortages of direct-care givers (home health aids), and they are paid poverty wages: $13,000 - 16,000/year on average with little dignity (https://www.payscale.com/research/US/Job=Live-In_Caregiver/Salary). Many of these caregivers have been immigrants and with current changes in policies, we will likely face an even higher scarcity in the workforce.

How will people cover LTC costs?
The wealthy will be able to cover their costs for LTC, and the poor will not.”Sandwiched in the middle are people with some financial assets, but not necessarily enough to fund a $300,000 (or more) long-term care outlay at the end of their lives” (https://www.morningstar.com/articles/879494/75-mustknow-statistics-about-longterm-care-2018-ed). Long-term care insurance is an option, but it is expensive and the insured face the risk of hikes in their premiums, along with an unpredictable future economy.

What are the policy themes being studied by the NIH?
(https://www.ncbi.nlm.nih.gov/books/NBK217736/)
The National Institute of Health(NIH) is investigating four research areas for LTC:

1. What are the needs for and use of long-term care ?
2. What resources are required for LTC?
3. How do we establish measurements of the needs for LTC?
4. How do we finance and reimburse for LTC?

LTC Challenges That We Don’t Like to Think About

1. There is no national strategy to finance and provide long-term care in the U.S., and it is considered one of the biggest challenges in healthcare policy today in order to provide services for the elderly and people with disabilities.
   
2. The public is simply not engaged, nor is the government.
   
3. "A lot of folks don't know it, but nearly two-thirds of Medicaid is spent on nursing home care for Medicare seniors who are eligible for Medicaid. And a lot of that money is also spent to help people with disabilities, including middle-class families whose kids have Down syndrome, autism or other severe conditions”  (https://www.commonwealthfund.org/publications/newsletter-article/aging-population-crisis-p4.lain-sight).
   
4. Middle-income seniors are being “ignored and underserved in today’s long-term care market, and it’s a problem that’s going to explode over the next 20 years,” said Caroline Pearson, a health researcher at NORC (formerly the National Opinion Research Center) at the University of Chicago and lead author of the study https://www.nytimes.com/2019/05/10/health/assisted-living-costs-elderly.html). Other than LTC insurance plans (which are costly), health insurance does not cover the cost of direct caregivers. A study published by the Social Science Research Network is based on what is called “the coming storm of broke elderly.” Bankruptcy rates have increased 204 percent from 1991 to 2016 for those citizens over the age of 65 – with healthcare costs playing a significant role (https://blog.credit.com/2018/10/bankruptcy-rate-has-doubled-for-seniors-187765/).
   
5. Here is another challenge: Try to find a caregiver to do LTC in your home. You might find some private company or public health service in your area to help you out, but the services are limited, costly and not well regulated, if at all. Although there are some wonderful caregivers, there is no systematic approach to determine the quality or training of home health aides as the care for your loved ones. Sadly, the home health aides are not the ones raking in the money; their wages fall within poverty level and their work is not respected or dignified, and yet they carry out extremely difficult work.
   

Do You Want to Start with a Local Solution?
The NY Caring Majority is a campaign that is “bringing together seniors, people with disabilities, family caregivers and homecare workers to fight for a just long-term care system in New York” (https://www.nycaringmajority.org/ ). Some ideas include support of the NY Health Act, secure the funding of pilot projects that will invest in the homecare workforce, and maintaining the “Consumer Directed Personal Assistance Program,” which allows the hiring of loved ones and support people to care for the LTC population (Caring Majority, Hudson Valley). If you are interested in this subject, check the website https://www.nycaringmajority.org/ or contact me and I will provide you with more information about the local campaign launch:
Caring Majority
Hudson Valley Campaign Launch
Thursday, September 27, 2019 from 4-6pm
13 Grand St., Kingston, NY 12401
 
Charlotte Michos is a clinical nurse specialist who values personal-centered care and serves as a Healthcare Consultant in helping others make informed decisions.