Be Part of the Solution

I spent the first half of my day today working on Travis stuff. I do spend several hours each week being not only a mom to my boy but also a caregiver.

I ordered Travis’s Bipap supplies. This needs to be done each month. Supplies are ordered in various intervals, some being available monthly, some every three months and others every six months.

While on the phone with the supply company I asked them to transfer me to their compliance unit. Unfortunately, Travis only used his Bipap for more than four hours on 9 nights over the last 30 days. If it is less than four hours, that day doesn’t count. He just doesn’t get it. He is unable to make the connection between feeling better and better overall health to using the Bipap machine.

We did have his appointment with the hematologist (blood specialist) last week. He did rule out blood cancer, which was a relief, but advised that Travis must get his elevated red blood cell count, hemoglobin and hematocrit numbers down or he is in danger of having a blood clot leading to a stroke, heart attack or pulmonary embolism.

His advice to lower the levels? Phlebotomy. Travis needs to start donating blood. Sooner than later. And more often than the typical donor. My boy that hates needles and passed out/convulsed on a couple of occasions giving a vial of blood now needs to donate a pint. Every four weeks until we get the levels down.

Am I being Punk’d? Have you ever seen that show? It was a hidden camera - practical joke reality TV show that was hosted by Ashton Kutcher. I have a tendency to ask if I’m being punk’d when I can’t believe something is happening. Like having to take Travis to donate blood. For him it is the needle thing. For me, it is another calendar thing. To add to all of the other appointments. In addition to trying to keep him calm through the process.

I’m his mom. I’m going to do whatever I have to in order to take care of his needs.

This morning I also reconciled Travis’s bank accounts and completed the annual representative payee report that I am required to send to Social Security.

There is a reason I am bringing up the amount of time invested in caregiving. I wrote last week about provider agencies being short staffed. So as Travis lost each provider, I picked up the slack. His last provider worked her last day last week. She moved out of state. I am currently managing his finances, managing seeing and receiving treatments from four different doctors, doing his shopping, and supporting him with cooking and cleaning.

Keeping his home clean and safe is harder than one might think. Travis is a hoarder. Have you ever driven by a pile of stuff on the curb with a free sign on it? When I do, I keep driving. Not Travis. He stops. And takes it all. He thinks he will find a use for all the things. Or that a friend might need some of it.

Plus he has a slew of individuals that come over and leave their mess. I have trouble understanding why his tribe and other “friends” do not pick up after themselves. Ever. I spend the first several minutes every time I am at his house walking around with the trash bin picking up trash. From his home and his car.

Eleven years ago I closed my business and focused on just the caregiving. Travis was getting close to aging out of school, and needed more attention.

This worked out okay for us. Tracy provides well for our family and we are financially stable. This is not always the case for other families.

Have you been checking your social security statements annually? It shows your earnings record and what your estimated payment amount would be at retirement. The last 10 years I don’t have any earnings. I would not be able to live on my estimated Social Security retirement payment. That is not the situation I will find myself in for many reasons. But that is the situation some retired individuals find themselves in. Because they traded earning wages for being an unpaid caregiver for a loved one.

My social security statement says to qualify for benefits, your earn “credits” through your work, up to four each year. Most people need 40 credits, earned over their working lifetime, to receive retirement benefits. If you have enough work credits, we estimate your benefits amount using your average earnings over your working lifetime.

I found an article, “Possible Caregiver Credit Toward Social Security in the Works”, posted by Leah Newman in September 2014, at www.lifeline.philips.com. Newman writes, “Millions of Americans serve as caregivers for their family members, but when your full-time job is caring for a loved one, you may be missing out on more than just a paycheck. Once you’ve retired, your monthly Social Security benefits are based on the amount you earned during your working years.

During any period of time that you’ve taken off to care for an ill or disabled loved one, you’re not paying into Social Security. That means you’re missing out on both a paycheck now and one during retirement.

But a proposal introduced in the House of Representative in July 2014 could change all that.

About the Proposal

Social Security payouts are calculated based on the total earnings a person has made during his working career. The caregiver credit offered through the proposal would be added to a caregiver’s career earnings to determine how much Social Security he would receive after retirement. This would increase the caregiver’s retirement income, even though he wouldn’t be working or paying into Social Security during this time.

Only people who provide care for at least 80 hours per month would be eligible for this credit, the value of which would be determined by a sliding scale based on previous income. There is also a proposed five-year maximum on the credit.

Possible Impact

Choosing to become a full-time caregiver for a family member requires sacrifices, which can be emotionally, physically, and financially exhausting. The last thing caregivers and their families should be worrying about is what their time off from work is doing to their financial security in the future. This tax credit could bring peace of mind, knowing that you will receive the largest payment possible when you begin drawing Social Security.

Women especially could benefit from this credit. According to the Family Caregiver Alliance, about 66 percent of all caregivers are women. Women already make less on average than their male counterparts. When women leave the workforce — or drastically cut their hours — to care for an aging parent (or child with special needs), they’re giving up even more of their income. And their self-sacrifices may not just impact them in the present. Their lower or absent earnings today could also translate into less income in retirement.”

After reading the article I couldn’t believe I didn’t know about this. Until after further research I found that the Social Security Caregiver Credit Act of 2014 didn’t pass. It came up before 2014 and continues to be discussed today. Including whether the credit should also be given when a parent stays home with their well child until the age of 12.

In the article, “Rescue Plan Help for Family Caregivers is a First Step”, written by Alexandra Drane, Molly Coyle and Esther M. Friedman in April 2021 located at www.rand.org, they write about the relief offered to millions of family caregivers due to hardships created during the pandemic.

Alexandra Drane is cofounder and CEO of ARCHANGELS and cofounded Eliza Corporation, Engage with Grace, and three other boot-strapped companies. Molly Coye is cofounder of HealthTech4Medicaid and former state health officer for New Jersey and California. Esther M. Friedman is a behavioral and social scientist and director of the Caregiving Initiative at the nonprofit, nonpartisan RAND Corporation.

Commentary gives RAND researchers a platform to convey insights based on their professional expertise and often on their peer-reviewed research and analysis.

For my blog today, I’m most interested in the information they give about pre-pandemic caregiving. This has been an issue long before the pandemic hit.

“The pool of family and friends providing unpaid care to loved ones with disabling conditions is large and growing. In 2015, it was estimated by NAC and AARP (PDF) that about 40 million caregivers were providing unpaid help in the United States. That number is now more than 50 million. In 2020, these individuals were doing 23.7 hours of caregiving per week on average. Valued at $14.58 per hour (the 2020 caregiver wage), that's $950 billion in annual economic value provided by caregivers. Even this number is likely an underestimate during the COVID-19 pandemic.

Other costs associated with caregiving are indirect, and ripple outward. The emotional strain of caregiving leads to increased absenteeism or presenteeism at work, harm to career advancement, and the associated lost wages and benefits. Workers with caregiving responsibilities cost their employers 8 percent more in health care costs (PDF) than those without such responsibilities—an estimated $13.4 billion per year.

Pre-pandemic, the BCBS Health Index found that unpaid caregivers had worse physical and mental health than the general population. Four months into the pandemic, the situation was dire: By late June, U.S. Department of Health and Human Services data was showing that 45 percent of unpaid adult caregivers reported signs of depression (compared with 17 percent of non-caregivers). More than 30 percent said they'd had suicidal thoughts (compared with 3.6 percent of non-caregivers).

This emotional and physical toll suggests that many caregivers are desperate for help. Employers can provide some aid by assisting with applications for services they may need, creating opportunities for flexible work hours and time off, and organizing respite programs.

Many caregivers, however, are forced out of the paid workforce. That means only national and state policies can protect this precarious group over the longer term. For example, protected and paid leave from work could keep caregivers attached to their jobs. Tax credits for unpaid caregivers who need to leave work could provide financial relief.

Growing and supporting the professional home health care workforce is also vital. Well-documented workforce shortages mean that even for those who want and can afford in-home care, there's no one available to hire.

Unpaid caregivers have been a critical part of the functioning economy, serving as the backbone of the health system, since long before the pandemic started. Adding them to the American Rescue Plan was an important step—but even after the pandemic is over, the financial security of these vital caregivers will need long-term protection.”

They mentioned that tax credits for unpaid caregivers could provide financial relief. I found some information on another potential tax credit.

In the article, “Credit for Caring Act Would Provide Tax Credit to Family Caregivers”, by Nancy Kerr, July 2021, at www.aarp.org, Kerr writes, “Some of America's 48 million family caregivers would get much-needed financial assistance under the Credit for Caring Act, introduced on May 18 in the U.S. Senate and House of Representatives. The bipartisan bill would provide an up to $5,000 federal tax credit for eligible working family caregivers — which could help defray the nearly $7,000 that many families spend each year in out-of-pocket caring costs.

Family caregivers are providing $470 billion in unpaid care each year — doing everything from helping prepare meals and paying bills to assisting with medication and general activities of daily living — most often so that their parents, spouses, and other loved ones can continue to live independently in their homes and communities. A whopping 61 percent of these caregivers do all of this while also holding down a job.

The bill's federal tax credit would give eligible family caregivers who work a 30 percent credit for qualified expenses they paid or incurred above $2,000. The credit could help offset the costs of services like home care aides, adult day care and respite care as well as home modifications like ramps and smart-home technology that make caregiving at home safer and easier.”

This is a tax credit for caregivers who work. The bill, unlike the existing child and dependent care credit, would help family caregivers who care for non-dependents or who do not live with the person they are assisting.

The different articles give different amounts for the amount of unpaid care that family caregivers are giving. I’m sure is depends on what they are using for such things as rate of pay. What we can agree on is that it is in the hundreds of billions of dollars.

Per AARP, “Eligible family caregivers assisting loved ones of all ages would receive the credit if the care recipient meets certain functional or cognitive limitations or other requirements certified by a licensed health care practitioner. The amount of the credit would be 30 percent of the qualified expenses paid or incurred by the family caregiver above $2,000, up to a maximum credit amount of $5,000. Individuals with higher incomes would be ineligible for the tax credit, and the bill includes provisions to prevent double-dipping with existing tax provisions.

Forty seven percent of family caregivers have experienced at least one financial setback due to caregiving.”

Wow! Right? When I think about all of the tax credits available to so many, I wonder why it is taking so long for the types of tax credits I highlighted today to pass legislation. Don’t you?

Being a caregiver is hard enough. I’m not sure what our situation would look like today if we didn’t have the means for me to quit work so that I had the time and energy to focus on caring for Travis. If we didn’t have the means to provide Travis a place to live. He most likely would be homeless.

Anytime I hear someone complain about the homeless population, I share our story. Because the difference between a homeless person and Travis is us. I would argue that most homeless people wouldn’t choose to live that way, and most likely are suffering from mental health issues. And don’t have a person in their lives who can commit to the level of advocating and caregiving necessary. Or a person who can commit to the financial needs of their loved one.

Tracy has a favorite saying, “If you’re not part of the solution, you’re part of the problem”.

Is there something we can each do to be part of the solution? To take some of the strain off of caregivers?

Well for one, we could support this type of legislation.

“It isn’t that they cannot see the solution. It is that they cannot see the problem.” - GK Chesterton

“Problems only get solved when you stop ignoring them.” - Unknown