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Caregiver Discrimination

The image shows how the challenges of managing home, work, and caregiving may seem overwhelming to a new caregiver.

Caregiver Discrimination

Equal Treatment

     For several months, we’ve seen groups proclaiming their rights for equal treatment under the law and by others. While I strongly disagree with the violence displayed in asserting those rights, I agree with the message. I believe all persons have a right from conception to be treated with respect and dignity. God created everyone to be equal, and he loves us all unconditionally. Unfortunately, I don’t believe everyone in the world shares my point of view. Due to that fact, laws exist to protect those groups who suffer from acts of discrimination due to age, religion, race/color, nationality, gender, sexual preference or identity, disability, or military status. Some states have more; some have fewer groups protected. However, I believe that caregiver discrimination is an issue that deserves to be recognized.  How do you feel about it?  Do caregivers need to be a protected class against discrimination?  Here’s why I believe they do.

      In the 2020 Report, Caregiving in the U.S.” conducted by AARP Family Caregiving and the National Alliance for Caregiving, 48 million adults provided care to family members over seventeen in the United States. That number was up sixteen percent from 2015. 

  • Twenty-four percent (24%) of them provide care to two or more family members.
  • Eighty-nine percent (89%) of the caregivers are relatives.
  • In the age group 75+, seventy-four percent (74%) of the caregivers are also 75+.
  • Eighty-one percent (81%) of caregivers ages 18-50 provide care to persons over 50.
  • Sixty-three percent (63%) need care due to long-term physical health needs.
  • Twenty-seven percent (27%) have mental health needs requiring oversite by a caregiver.
  • Thirty-two percent (32%) have memory disorders such as Alzheimer’s or dementia as the reason for a caregiver.

Family Member in hospice care at home.

What does this mean?

As a nation, more Americans are becoming caregivers for their family members every day due to an increase in the number of them who have long-term physical health, mental health, or memory problems.  The following observations could explain the reason why so many caregivers may be staying home to provide care. Despite these numbers climbing every five years, another part of the survey showed that the caregivers could not receive the resources they needed to care for their family members.

Data Indications

This data indicates that the family caregiver could not afford or could not access the care needed for their family member. Is that due to a broken health care system, or do lawmakers feel that these individuals’ needs do not warrant the resources necessary to fix the access problems? Could caregiver discrimination have something to do with the fact that caregivers are often women and the elderly?  Does that have anything to do with the fact that there is no urgency to fixing this problem to get them the assistance they need?

  • Only 48% (down from 53%) showed hospitalization in the past 12 months.
  • Only 31% received indicated they had paid help.
  • 26% reported more difficulty in coordinating care across various providers.
  • 27% reported more difficulty obtaining affordable services.

Many children take on the role of caregiver when parents become sick even when they are very young themselves.

Consequences

  • 21% of caregivers say they feel alone due to physical, emotional, and financial strain.
  • 41% (down from 48% report their health status as “very good or excellent.”)
  • 21% (up from 17%) say their health is “fair.”
  • 23% report difficulty seeing to their own health needs.
 
Why Do I Think Caregivers May Be Victims of Discrimination?

Discrimination has to do with making decisions or treating someone differently based solely on specific characteristics (ex., because you are a girl, you cannot be hired as a cowboy).

 
Lack of Respect by Healthcare Professionals

While they are front-line caregivers, they are not afforded the same respect and recognition as other healthcare providers.  For example, when a caregiver brings their family member into the hospital, doctors and nurses often ignore what they say about their symptoms and observations if the information doesn’t match what they expect to see, especially if they do not use the correct medical terms. Caregivers do not have training in medical terminology. Therefore, healthcare providers fail to give them the respect they are due when they attempt to share information about their family member’s health status. Caregivers wait in separate areas during a patient’s initial assessment in the emergency room or hospital admission. They are not included in team meetings to discuss medical care planning for the patient or long-term patient goals, nor are they included in discharge planning needs. Though no one has more knowledge about what the patient needs to survive once they go home, healthcare teams often fail to invite caregivers to team meetings to discuss discharge or care plans for patients because they assume the family has nothing significant to add.  Could caregiver discrimination in these situations be influenced by socioeconomic, ethnic, or gender considerations? 

 
Family Medical Leave Act Retaliation

Congress passed the Family Medical Leave Act to protect family members who needed to take time off work intermittently or continuously to deal with their illness or their immediate family’s.  They could miss up to 480 hours per 365 days. However, here’s the catch.  It’s unpaid. Though employers are not supposed to retaliate against workers, the resentment non-verbally (and sometimes verbally) expressed to workers using this benefit creates a hostile workplace for those who must use it. Frequent users of the protection have their work performance and behavior monitored closer than other employees. The incidence of terminations for workplace infractions of those who also use FMLA would probably show a close correlation. Therefore, while the law has good intentions, it also comes around to bite them in the end if they use it. In my opinion, this is a clear example of how caregiver discrimination comes into play.

 

Unemployable

Employers won’t hire individuals known to be caregivers.  While employers cannot ask questions related to caregiving on applications, during the interview process, when reviewing hours of work, availability discussions often reveal (if the applicant is honest) the potential for lateness or occasional absenteeism. What is not understood by employers is that caregivers need health insurance and a reliable source of income desperately. If they find a loyal and understanding employer, the likely relationship that develops is one of commitment and excellence. (1) The caregiver doesn’t want to lose the job – they need the money and insurance. (2) They appreciate beyond words someone who understands their needs. (3) They know how rare it is to find a place that understands their situation, and they aren’t about to do anything that will mess that up on purpose.

Spouse providing care at home
Being a Married Caregiver is Penalized by Medicaid

Spouse caregivers are not eligible to receive financial assistance from  Medicaid to hire help in Virginia. However, if a relative other than a spouse (i.e., son, daughter, mother, etc.) lives apart from the one needing care, he can be eligible to receive Medicaid payments for providing caregiver services.

 
Conclusion

There are other situations where I feel caregivers are treated differently or prohibited certain privileges or access due to providing care, but I’ll save those for another day. Feel free to add comments. 

I’ve started a website to try to help caregivers with issues they encounter. “Becoming a Family Caregiver” provides information for new and experienced caregivers about how to perform care at home, tips on what to do in difficult situations, where to go to get help, and much more.  I hope you will give it a look.  https://becomingafamilycaregiver.com

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