Thursday, February 1, 2018

EDITOR'S NOTES: Caregivers get bi-partisan support in DC


Something happened last week that went mostly unnoticed - Democrats and Republicans agreed on a piece of legislation that President Donald Trump then signed into law.

No, I’m not talking about the national budget; that is a piece of stinking legislation that we are all tired of hearing about, but continues to keep both sides arguing.

What they did, instead, was pass legislation to benefit caregivers.

David B. Kennard
Twitter.com/davidbkennard

The RAISE Family Caregivers Act is a good first step to help the 40 million Americans who provide care to family members with disabilities, aging parents or people who are otherwise dependent.

I was happy to see this legislation pass.

Many of you know that for several years I have been the legal guardian of my youngest sister, Katie, who was born with Down syndrome. She’s 44 years old now, but still insists she is 9.

Not too many years ago she lived with my parents, who remained her primary caregivers until they started getting old. Dad died about 10 years ago and mom followed a little more than year later. As they aged, it was difficult to tell who was caring for who.

Consequently, the responsibility of caring for Katie fell to me and my younger brother - and our wives.

Katie is a joy. She loves to dance and sing along to every Disney song. She swims, bowls, skis and participates in Special Olympics. She’s very proud of her sports medals that she has collected over the years - almost as proud as her collection of McDonald’s Happy Meal toys.

We’ve enjoyed having Katie in our family as our kids have grown up. They’ve all had a hand in providing for her care in one way or another, but it’s my wife who has carried the bulk of the responsibility.

We often say that no good deed goes unpunished when it comes to securing resources, healthcare or the myriad other state and federal requirements of caring for a disabled adult.

There are government forms, court dates, social worker appointments, regular health exams, banking and financial requirements, transportation issues, training and education. This is all in addition to the daily hands-on tasks required to bathe, feed and clothe another person.

Most caregivers will tell you about the unquantifiable rewards for their labor of love, and they are many, but speaking as a caregiver, I can tell you that it’s a little like drowning in quicksand sometimes. And none of it is made easier by the loads of bureaucratic red tape required from the many agencies organized to help and protect Katie - or anyone with a disability.

So, I was happy to see this new requirement put into place.

The “Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act” is designed to pull stakeholders together to provide support to those that care for others, 60 percent of whom are 60 and older.

It makes sense then that the AARP was the primary force behind the legislation.

“This elevates this issue as a priority,” said Rhonda Richards, senior legislative representative of AARP.

According to an article for Forbes magazine, AARP rallied more than 60 aging and disability organizations “to support the idea, including the Elizabeth Dole Foundation, Paralyzed Veterans of America, Michael J. Fox Foundation and the Alzheimer’s Association.”

The act (S. 1028/H.R. 3759) requires the federal government, through the Department of Health and Human Services to develop a strategy to support family caregivers.

While there is little definition to what this will actually do, it will for sure begin a conversation that gives a voice to caregivers who are on the front lines of trying to do what’s best for those they have stewardship over.

I am encouraged by some specific entities on both the “private and public sectors” named in this new legislation, such as “family caregivers; older adults and persons with disabilities; veterans; providers of health care and long-term services and supports (LTSS); employers; state and local officials.”

It’s my hope that this first step will remove some of the barriers caregivers face and provide more real resources to help actual families care for those they love.

“Across America, family caregivers help parents, spouses, children and adults with disabilities and other loved ones to live independently,” the act states. “They prepare meals, handle finances, manage medications, drive to doctors’ appointments, help with bathing and dressing, perform complex medical tasks and more — all so loved ones can live at home.”

As situations go, I feel blessed that my family is able to provide for my sister with only a little inconvenience. Many families have far greater challenges. It is nice to be acknowledged for a change.

David Kennard is the executive editor of Summerville Communications, which publishes the Berkeley Independent, Goose Creek Gazette and Summerville Journal Scene. Contact him at dkennard@journalscene.com or 843-873-9424. Follow him on Twitter @davidbkennard.

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