Better Speech and Hearing Month: Using Communication Devices to Advocate

May is Better Speech and Hearing month and we would like to celebrate how our Hearts for Home Care advocates, Mark Steidl and Ari Anderson have never let their diagnoses stand in the way of making their voices heard. They are an inspiration to so many of their peers and fellow advocates ─ stopping at nothing to help and improve the lives of medically complex individuals who rely on home care to keep them cared for and safe.

Mark Steidl, from Pittsburgh, PA, doesn’t let communication challenges stop him from sharing his story with legislators. Diagnosed with Cerebral Palsy, he uses a Dynavox communication device to educate lawmakers on the importance of home care and the impact his home health aides and nurses have had on him. Mark operates the device by using the switches that are affixed to his wheelchair at either side of his head. The Dynavox allows Mark to type out what he wants to say, and then the device’s speakers enable Mark to communicate out loud.

Pictured: Disability rights advocate Mark Steidl (center) joins the Pennsylvania Homecare Association’s Advocacy Day in Harrisburg to tell legislators about what home care means to him. He is pictured here with BAYADA Home Health Care Hearts for Home Care Ambassador Kimberly Gardner (left) and CEO David Baiada (right).

Mark and his mother travel to the state capitol in Harrisburg, and to Washington, D.C. at least once a year to take part in Hearts for Home Care lobby days — days in which dozens of advocates gather to make meetings with legislators that will be voting on home care-specific legislation.

In a conversation with Mark about his advocacy work, he said, “Thirty years ago – before the advent of electronic communication devices, I would not have been able to communicate with you. If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes. But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”

Ari Anderson, from Charlotte NC, truly understands the importance his home care nurses have had on his life, and because of this, dedicates his life to advocating for them and the other individuals who benefit from their care: My nurses have provided me with life-sustaining care,” he says. Most die from [Spinal muscular atrophy] SMA type 1 by age 2.Ari was diagnosed with SMA Type I at 6 months of age. 38 years later, thanks to his dedicated nurses, new technologies, and medical therapies he is living his life healthy and independently at home.

With the help of his communication device, Ari has become a passionate advocate, inspiring all who meet him. His team of highly skilled nurses has also enabled him to graduate from high school, receive his bachelor’s degree, and earn a master’s certificate in technical writing. He now authors a column for SMA News Today and dedicates much of his time to advocating for home care and educating the public on its value. Most recently, using his communication device and eye-gazing technology, Ari brilliantly crafted a video he uses to educate North Carolina legislators about the impact of home nursing.

For Ari, skilled home care nursing has long-been a lifeline that has allowed him to grow up and thrive despite his prognosis. Most importantly, it has enabled him to be where he wants to be: at home.

Both Mark and Ari rely on skilled in-home caregivers to remain safe and cared for surrounded by their families at home. Like Mark says, the American healthcare system has changed and high-quality care at home is becoming the new norm as families and their loved ones choose home care over long-term care and nursing facilities. Lower costs of care and preventable hospitalizations are just two of the many reasons that home nursing care is optimal for the state and its residents.

However, skilled home nursing programs are state funded by Medicaid and the reimbursement rates given to providers are not enough to keep up with the competitive wages hospitals and long-term care facilities are able to offer. Without competitive wages, providers are struggling to attract qualified nurses to the industry, thus leaving medically complex individuals like Mark and Ari at risk without care. Our advocates are urging state legislators to invest in home care and raise reimbursement rates ─ as the future of our healthcare system is in the home.

Mark and Ari are super-advocates who are inspiring those around them to make their voices heard.  For ways you can advocate for yourself, your loved ones, and your community at-large, please email advocacy@bayada.com

As Drawbacks of Nursing Homes are Recognized, It’s Time to Recognize Home Care as the Future

Medicaid Home Based Care
Home health aides help keep many families together at home.

Whether you are a professional or family caregiver, home care recipient, or otherwise, you know why home care is safer, more patient-preferred, and less costly than institutional care. Home care provides vulnerable seniors and adults with disabilities with one-on-one care that enables them to stay safe and independent in their own communities. While its benefits—and the inherent drawbacks of institutional care—are evident to us, home care is still not widely recognized as a long-term solution. This is because nursing home care is still often seen as the “default” option for those that need consistent care, particularly under Medicaid.

But tables are beginning to turn: As the COVID-19 pandemic has shed light on the dangers of nursing home care. With recent reports citing that a staggering 40% of COVID-related deaths have occurred in nursing homes, people are more widely recognizing home care as the long-term care setting of the future.

Home care saves state Medicaid programs money and helps vulnerable Americans stay out of costlier and more infectious settings like hospitals and rehab facilities. It enables more than 8.3 million Americans to remain healthy at home, thanks to the 3.2 million compassionate and dedicated frontline direct care workers, including home health aides and personal care assistants, that keep these at-risk populations safe, independent, and out of riskier institutional settings.

In a post-COVID world, home will become recognized much more widely as the care setting of the future. With the US’s aging population growing quickly, and with families’ recently-discovered reservations about placing their loved ones in a long-term care facility, it is important that governments across the country take steps to make sure that the home care industry grows proportionately along with the demand for it. This includes: Increasing state and federal Medicaid rates for home care services so that providers can raise wages and allow more caregivers to be recruited to the home care workforce; Rethinking outdated laws and regulations that allow vulnerable populations to more readily access nursing home care; and instituting built-in protections for Medicaid-based agencies, such as relief funding for extraneous costs that occur during an emergency like COVID-19.

A “Home First” mentality would allow for individuals to stay safe at home and away from group settings that encourage virus spread. Now more than ever, the potential dangers of institutional care are becoming a frightening reality and we as a nation need to consider the future of healthcare as our population continues to age, and as more medically-fragile and disabled individuals are able to live independently. By updating laws to prioritize home care, we have the opportunity to create a meaningful, cost-effective and common-sense change to healthcare for the post-COVID future.

If you are ready to advocate for home health care, please contact us at advocacy@bayada.com.

Plans for Healthcare Overhaul in Delaware

In his State of the State Address last week, Delaware Governor Carney said, “Here’s the bottom line.  We’re spending too much money on healthcare, and we’re not getting the best results.  We need to come to the table – state government and hospitals most of all – and be part of the solution… Now it’s time to make the hard decisions and change the way we deliver healthcare.”

We’ve heard Department of Health and Social Services’ (DHSS) Secretary Odom-Walker discuss similar issues over the last several months. In public hearings across the state, she has discussed health care reform in other states across the country and the need for fundamental changes to the way health care is delivered, how chronic health issues are prevented and treated and how funding can be used to encourage better coordination and more focused care to obtain good health outcomes.

Secretary Odom-Walker and Governor Carney have great faith that Delaware’s small size will enable quick transition to a new, more efficient delivery model. We are closely monitoring these developments and have reminded both the Secretary and the Governor of the importance of home health care in reducing costs and obtaining better outcomes for Delawareans.

If you have any questions about what’s going on in Delaware’s state capitol, let’s chat! Email me at sgahs@bayada.com.