Opinion | Patients and their caregivers face ‘broken healthcare system’

Opinion | Patients and their caregivers face ‘broken healthcare system’

Note to editors:

Regarding “Caregivers help us become a family. We are so lucky” by Rachael Scarborough King (review guest post, January 8):

Ms. King, the wife of Ady Barkan, who died in November, shared the harsh reality of what it means to be a caregiver for people with ALS. Their care journeys highlight political and policy choices that contribute to inequalities and challenges in accessing quality care.

Receiving dignified care should be a fundamental right for all people. Lawmakers need to pass federal paid family and medical leave policies like the FAMILY Act. Caregiving can lead to disruptions to caregivers’ job, career, and financial security. Without paid time off, providing long-term care will almost inevitably lead to financial instability.

Paid family and medical leave also allows people with disabilities to work and contribute to the economy, giving them paid time to manage their care. Family Values ​​@ Work Network helped 13 states win paid family and medical leave, and the Washington, D.C., victory is a blueprint for successful national programs.

Paid family and medical leave allows us to provide help to those who need us, whether it’s short-term or long-term, whether they’re recovering or taking their last breath.

Ady Barkan’s advocacy has made significant contributions to advancing the rights of workers and their families. At some point, we all need to give or receive care.

Josephine Callipeni
berwyn heights maryland
The author is the Executive Director of Family Values ​​@ Work.

Note to editors:

Do you remember what it was like to be quarantined at home during the pandemic? Do you feel stressed when your world shrinks to the walls of your home? Are you annoyed by the restrictions you are placed on?

I loved that time. I hope we can go back. No, I don’t want another pandemic. But I aspired to be like everyone else back then.

I am the informal caregiver for my husband who has a spinal cord injury and live in a limited world. Sheltering in place gave me a break from the different feelings of being an informal caregiver, obligated by passion and responsibility to spend more time loving and caring for my husband at home rather than being active in society. I suspect other informal caregivers can relate to this.

While Rachael Scarborough King’s article describes professional carers supporting her family, many of us informal carers provide care because the recipients of our care are not entirely dependent on professional care. We fill the gap, often wearing multiple hats as unpaid and untrained nurses and/or therapists (physical, occupational, respiratory, mental health).

We strive to make our care recipients’ lives easier and healthier, yet our value is rarely recognized by the outside world.

Julie E. Yank
grand rapids, michigan

Note to editors:

In April 2020, when the COVID-19 pandemic hit, my husband was diagnosed with ALS. By December, he was completely paralyzed and on a ventilator. He needs help 24/7. Due to COVID restrictions, friends and neighbors were unable to help me.

We were lucky enough to be connected with Compassionate Care ALS, a wonderful non-profit organization in West Falmouth, MA. We acquired medical equipment that was not covered by insurance. An attorney recommended that I divorce my husband of 54 years to reduce his assets so he would qualify for Medicaid. We found a facility that specialized in ALS care, and its staff faithfully stayed with him day and night until his death.

For $20,000 a month, I can keep him at home where our family can love and support him. Most people don’t have the resources that I have. Their loved ones were sent to poorly equipped nursing homes.

It’s shameful that this wealthy country has such a broken healthcare system. Rachael Scarborough King is right to point out that the population is aging and our Congress has done nothing to alleviate caregiving issues.

Deanna Downs
Acton, Massachusetts

Note to editors:

I have no problem with anything Rachel Scarborough King states or claims in her opinion piece. I admire what she does; I admire how her family handles the situations they face. I completely agree that home care should be available to those in need.

But what if I was diagnosed with a condition that left me bedridden, unable to perform basic life functions, requiring someone to change or clean my tracheostomy tube, and responding to alarms in the middle of the night while draining my Family resources available to energy spouses and other family members, I would like an alternative.

I would choose medically assisted death then. This needs to be made more accessible to those in need. I don’t want to be a burden to my family, even if it’s just in my own mind.

Sherry Corson
Westfield, New Jersey

Note to editors:

The relationship between Ady Barkan and one of his caregivers, Robert, reflects the close bonds that are often formed between family caregivers and the people they care for. As chair of the New York State Senate Health Committee, I often hear from caregivers who love their jobs but leave them because the pay is so low.

Recently, we have taken steps to increase home care wages, but hourly wages are still not enough to keep up with New York’s high cost of living. Even as we work to raise home care wages, we’re finding that the money isn’t reaching workers. Instead, New York uses private insurance companies to manage the home care of nearly 300,000 New Yorkers—and these companies pocket hundreds of millions of dollars in profits.

I’m working to end this wasteful system and ensure that state funds end up in the pockets of our family caregivers. Our bill, the Home Care Savings and Reinvestment Act, would eliminate these expensive middlemen.

As New York’s population ages, more New Yorkers will need care each year. We cannot hand over millions of dollars in profits to private insurance companies. Older people prefer home care to nursing homes – so we need to make sure we invest in the workforce so they can age in place at home.

Gustavo Rivera

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