On March 6, 24 energetic BAYADA employees and one BAYADA Assistive Care State Programs (ACSP) client gathered in South Carolina’s state capitol for a day of meaningful and heartfelt advocacy. The South Carolina Home Care and Hospice Association (SCHCHA) hosted its second annual Legislative Advocacy Day, and this year, a record-breaking total of nearly 60 advocates attended!
BAYADA’s advocates joined other attendees and walked the halls with a clear message: Investing in our Nursing Medicaid Waiver programs will save the state money and keep our medically fragile children, disabled adults, and seniors home with their loved ones and out of higher cost facilities. We care about home care, and so should you!
With their passionate message in hand, advocates spoke with over 50 legislators about the importance of home care. This year we were able to speak to all key lawmakers in both the House and Senate to ensure our message was heard by as many ears–and the right ears–as possible.
“Advocacy can’t be effective with only one person working towards a goal–one voice can only go so far! That’s why I am so proud to work in South Carolina, where so many of our office employees, field employees, and clients recognize the importance of sharing their voices too. The more impassioned people we have involved, the more of a difference we can make on behalf of all South Carolinians that rely on home care,” said GAO director Melissa Allman.
BAYADA employees were excited and inspired by the impact they made that day. Thank you to the many participants for the difference you make on behalf of all South Carolinians that rely on home care to stay independent in their communities!
As home care clients, employees, caregivers, and family members, we know one thing for a fact: Home health aides do incredible, compassionate work that enable hundreds of thousands of residents across the country to stay at home and out of costlier, more infectious settings like nursing homes and hospitals. And we certainly know another fact: The work that aides do is invaluable, and it’s time that they begin to receive a fair wage for the hard work they do.
Low aide wages have recently made national headlines and the message is clear: We will need more and more home health aides as America’s population continues to age. But home health care providers are having trouble recruiting and retaining the quality, reliable workforce needed to keep up with the growing demand.
Recently, Hearts for Home Care advocate and BAYADA Home Health Care’s chief government affairs officer, Dave Totaro, submitted his opinion on the matter to STAT News, a media company focused on finding and telling compelling stories about health, medicine, and scientific discovery. He posed the question:
“To say that home health aides’ work is demanding is an understatement. They make it possible for 14 million Americans to stay in their homes and out of expensive and impersonal institutional settings like hospitals and nursing homes. Performing this necessary and in-demand work takes a physical and emotional toll, yet these individuals do it with compassion day in and day out.
So why do we treat home health aides as low-wage, low-value workers?”
The problem lies primarily in states’ low Medicaid funding for home care programs. Though states typically pay an hourly rate for providers who deliver home health aide services, these rates have largely been low for many years, or raised periodically, but at a rate too low to keep up with real costs of living and providing services. Because these rates must cover wages, training, benefits, new hire costs such as background checks and TB shots, and supplies, it is nearly impossible for home health care companies to take such a low rate and provide aides with a wage high enough to compete with industries like fast food and retail.
News coverage of the issue has been effective in bringing greater public awareness to the issue, especially as nearly all individuals will be touched by home care at least once in their lives, whether it be for themselves, a parent, friend, or other loved one. Now is the time to take awareness and turn it into action. Call your state legislator and let them know what home care means to you. Contact firstname.lastname@example.org for information on what you can do to share your voice and support home health aides.
Katie Beckett’s parents advocated for better home care regulations, resulting in the creation of the Katie Beckett Waiver.
Today, May 18, marks the sixth anniversary of Katie Beckett’s death. Katie, namesake of the well-known Katie Beckett waiver, was able to live at home due to her parents’ commitment to advocating for better home care policies.
Former secretary of health and human services Kathleen Sebelius called Katie “an inadvertent pioneer in the civil rights movement for people with disabilities” and the inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981.
Four months after her birth in 1978, Katie contracted viral encephalitis, leaving her partly paralyzed and with lifelong respiratory difficulties. Her parents, who wanted desperately for Katie to live as normal of a life as possible at home, found themselves in bureaucratic limbo. Katie qualified for Supplemental Security Income (SSI), but if she had been taken home, her parents’ incomes would have caused her to lose that eligibility. Yet her hospital care was topping $12,000 a month—six times the cost of home care.
At a news conference in November of 1981, then-President Ronald Regan cited Katie’s case as an example of federal regulations that, though more expensive for taxpayers, force Katie and other medically complex children to stay in institutional settings even though she could be cared for effectively at home.
At the time of the conference, Katie was 3 years old and had been hospitalized since almost birth. The day following the news conference, then-secretary of health and human services Richard S. Schweiker waived federal rules to allow Katie to return home without the loss of federal support.
Secretary Schweiker also created a review board to handle similar cases. Seibelius said that “thanks to her mother, Julie’s, tireless advocacy…Medicaid policy fundamentally shifted” toward supporting home health care.
Home care worked for Katie, and for many others like her that thrive in a home environment surrounded by family and in-home caregivers that give her the proper amount of support. Despite needing nursing care five times a week and 12 hours a day on a ventilator, Katie graduated from Mount Mercy University in 2001 with a degree in English and creative writing. She also held several jobs over the years, including one as a secretary in a homeless shelter. At the time of her death, Katie was 34 years old—more than three times the age her doctors had predicted she would reach.
The Becketts’ advocacy not only allowed Katie to live a safe home life with comfort and dignity, but resonated around the country. The lasting effects of their commitment to their daughter’s well being have allowed for hundreds of thousands of disabled children to come home from the hospital. BAYADA Manager of Client and Family Advocacy Tara Montague is fortunate to raise her medically complex daughter, Mary, at home due to the Katie Beckett waiver, which is called the Community Care Waiver in her home state of New Jersey.
Tara says, “I am forever grateful to Katie Beckett and her parents. Because of their advocacy, my husband and I were able to bring our daughter home after two months in the NICU, and with home care, she’s been able to remain home with us for the past 20 years.”
If you are hesitant about sharing your voice and advocating for better home care policies, please think of Katie, her family, and their work, which has had a lasting effect across the United States. To get involved, please email email@example.com today.
Rest in Peace Katie, your legacy lives on. – March 9, 1978-May 18, 2012.