The Heart of Client Advocacy: How You Can Make a Difference

Home care client advocates for his disabled wife and his home health aide
Mike Pollock (left) advocates on behalf of his wife Kathy (center in red) and Kathy’s aide Alma (standing)

Imagine this scene: A woman feels a familiar, nagging stiffness in her lower back as she leans over the edge of the tub to bathe her teenage daughter. Her daughter, who has a significant degenerative muscular disease, sits quietly and securely on a customized bath chair that fits snugly inside the tub. The tub area is decorated with different pieces of adaptive equipment such as a specialty grab bar, floor mat, hand-held shower head, and other items to make the bathing process possible for a person who cannot physically jump in and out of the shower. From start to finish, the entire bathing process takes more than an hour to safely complete.

Whether it is giving a bath, doing a tracheostomy change, starting a gastronomy tube feed, or transporting someone with multiple pieces of medical equipment, families who care for a loved one with a significant medical condition live a vastly different lifestyle than many other families. This lifestyle is not easily understood unless you’ve experienced it.

Legislative advocacy makes a difference

We have learned that when our clients and families talk to our elected officials and the people who make decisions about health care funding and regulations, it makes a difference. We have seen clear evidence across our country that when more people speak up, creating a stronger and louder voice, it is more likely that government-funded insurances—such as Medicaid and Medicare—will adjust funding and regulations to benefit families.

Many of our elected officials have personally not had the experience of bathing an adult child, performing a tracheostomy change, or providing the other types of medical and personal care that are frequently needed in the home. It’s also sometimes forgotten that this care is not just provided once a week or month, but many times a day or week, over years—over a lifetime. The continuous nature of these care needs is what makes home health care services so necessary.

We consult with legislators and insurance officials and ask for increases in our reimbursement rates so we can hire more employees and reduce open shifts for our clients. Our requests often are not approved. However, when the families who actually use the home care services join with us, it makes a big difference.

When clients and families explain why it is important to them not to have open shifts or why their paid caregiver needs a better wage, and share their personal experiences from within the home, it helps these officials understand the need for home care. The people who we petition for increases and better regulations are the same elected officials you vote for, and who are entrusted with serving the best interests of those they represent. This is at the heart of how and why people gathering and joining voices can make a difference. This is the heart of client advocacy.

How can you get involved?

Think about your personal experiences and consider what it’s like to care for a loved one who is in your home or nearby. Let’s unlock those firsthand experiences about the difference a home care nurse, aide, or therapist makes in the care that your loved one needs or receives. Voices of families coming together can create opportunities. Better insurance reimbursement can help us recruit more nurses and aides to fill open shifts. Better wages can mean a more sustainable career for home care workers, which in turn allows more people to remain at home while they receive the care they need.

For more information about how you can join the movement for a better tomorrow for home care, visit our website and sign up to be a Heart for Home Care today.

South Carolina Representative Garry Smith Visits Local Family to Learn How Home Care Impacts his Constituents

Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).
Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).

 

South Carolina State Representative Garry Smith (R, District 27) visited a local family in his district to learn how his constituents and many South Carolinian families rely on home care to keep their loved ones together at home and out of more expensive settings. Rep. Smith is one of the many legislators that Hearts for Home Care advocates bring into home care clients’ homes to show them how federal, state, and local policies affect home care recipients and their families.

During his visit, Rep. Smith met 21-month old BAYADA Home Health Care client Emma Ferguson, Emma’s mother Gina, and Emma’s in-home BAYADA Nurse Danielle Rian. Emma was born with a Chronic Lung Disease of Prematurity, which causes Emma to experience severe breathing problems, pain, and other symptoms. At her young age, Emma has already had several surgeries and currently still requires use of a Gastrostomy-Jejunostomy (G-J) Tube to assist with her feedings and medication management throughout the day. At birth, state Medicaid authorized Emma to receive private duty nursing (PDN) services in her home so that Emma can remain safely and comfortably at home with her mother.

In March, Emma’s PDN services were terminated when Medicaid determined that her skill level no longer qualified her to receive care in her home. From March until May, Emma attended a local day care facility for children with complex needs so that her mother could continue to work. During this time, Emma was hospitalized on several occasions and required ventilator support due to respiratory illness. In May 2018, Emma’s mother Gina reapplied for PDN services, and Emma was able to start receiving care at home again. Emma currently receives 32 hours of PDN services in her home, and since the reauthorization, she has not been readmitted to the hospital.

Emma’s mother Gina stated, “I’m grateful Rep. Smith was able to visit our home to see how Emma and other medically-complex children can grow up and thrive with in-home nursing. These kids deserve some normalcy in their lives, and I have seen first-hand how much better she does when she can be with me at home rather than in an institution. She only receives 32 hours a week, and this allows her to receive the care she needs in the best place–her home–and allows me to be able to work to support my family.”

After the home visit, Rep. Smith said, “visiting sweet Emma and her family has opened my eyes to what home care means to my constituents and to the many South Carolinians who depend on Medicaid home care to stay with their families and out of higher-cost settings. I look forward to exploring ways we can help keep families together while at the same time effectively managing the state’s budget.”

“One-on-one nursing services have allowed Emma to remain safely at home under the Medically Fragile Children’s Medicaid Nursing Waiver. This program is an alternative to nursing home placement at a lower cost to the state,” said Melissa Allman, Hearts for Home Care advocate and Director of Government Affairs for BAYADA. “In-home nursing care helps minimize deterioration and can prevent costly hospitalizations as staff can address subtle changes in the medical condition before it becomes serious. I hope that more legislators continue to learn about how cost-effective these services are to the state, and how valuable they are in keeping South Carolinian families together.”

Home visits like this one really give elected officials a better understanding of how their decisions on key issues like Medicaid impact real people who are seeking to remain safely at home with their families. To find out ways in which you can participate in a home visit with a local legislator, or other ways you can advocate, email advocacy@bayada.com.

Pediatric Nursing Shortage Featured in Two TV News Stories

Submitted by Laura Ness, Director, Government Affairs (GAO)

 It takes a special and highly trained individual to become a pediatric nurse.  You need to have the heart, be able to work independently and respond to the needs of your clients at a moment’s notice.  Because of the difficulty finding nurses to care for medically fragile children, families often have services from more than one agency, open shifts, or in some cases stay in the hospital longer than needed.

Recently, two regional news states featured two families whose children were not able to come home because of the lack of skilled nursing available.

Click the photos below to watch their stories.

 

 

 

Government Affairs Office Continues Advocacy Efforts in Massachusetts

Submitted by Laura Ness, Director, Government Affairs (GAO)

This week, the Government Affairs Office (GAO) traveled to Massachusetts to advocate for amendment 513. The amendment requires the state to collect and make publicly available data on the hospitalization costs of the continuous skilled nursing population. This was accepted in the Senate budget and now needs to be approved by the conference committee. Our request is that the legislature approves the amendment but requires the data to be available by December 31.

Rate Floor Bill Introduced in Delaware

Submitted by Shannon Gahs, Associate Director, DE Government Affairs (GAO)

Following a concerted education effort and participation by many members of the home health care industry, HB200, which sets a “rate floor” for skilled nursing paid by Medicaid managed care, has been introduced. Nine members of the legislature have said that home health care matters to them, and are sponsoring the bill. Every home health care provider who answered an industry-wide survey said their number of unfilled hours has increased over last year. HB200 would go a long way toward ensuring access to skilled nursing for home health care clients across the state. If the bill becomes law, managed care organizations would not be able to pay less than the Department of Health and Social Services pays directly for similar services.

MassHealth Announces Second Rate Increase In The Face Of Budget Deficit

Submitted by Laura Ness, Director, Government Affairs (GAO)

Last week, Chief Government Affairs Officer Dave Totaro, Boston Pediatrics Director Emery Hughes, and other industry leaders and families gathered together to meet with MassHealth.  MassHealth had asked for the meeting, in regards to the Continuous Skilled Nursing (CSN) program.  During the meeting, MassHealth stated that they recognized that low reimbursement rates were a major problem within the program.  They have planned to increase the rates by 2.25% effective July 1, 2017.  This is the second reimbursement increase we have been notified about within three months.  The organizations working to increase this rate were pleased with this movement but recognized that this is a fraction of what is needed to stabilize the rates.  We look forward to continuing our efforts to increase the CSN rates by a total of $15 per hour.

Setting A Rate Floor Gains Traction in Delaware

Representative Debra Heffernan, Vice Chair of the House Health and Human Development Committee, has offered to sponsor and draft a bill that would set a reimbursement rate floor for skilled nursing care for all payers under the state’s Medicaid equal to what Medicaid pays directly.  This bill would go a long way in helping home health care providers have consistency in their plans.  Rep. Heffernan represents an area north of Wilmington along the Delaware River, east of Fairfax.   Two other representatives have offered to sponsor the bill as well, and an additional representative has offered to co-sponsor the bill.

Buzz Builds About Continuous Skilled Nursing Program in MA

Submitted by Laura Ness, Director, Government Affairs (GAO)

On January 10, BAYADA hosted a lobby day in Boston with members of the Continuous Skilled Nursing (CSN) provider coalition, the Home Care Alliance of Massachusetts, and the Pediatric Home Nursing Care Campaign (a coalition of parents and grandparents).  During the lobby day, we introduced a Patient Bill of Rights that will allow for adequate reimbursement rates and other protections for those receiving services under the CSN program.  Since then, BAYADA testified along with other providers and parents about the need to increase the rate.  We have also obtained over 50 sponsors to our bill, and sent over 400 emails to legislators about the bill.  Most recently, one of the parents was featured on the CBS local affiliate WBZ Boston.  The video could not have made our point more clear.  See the full video here. The campaign was also featured in the Boston Globe the day after our lobby day. Click here to read more.

Landmark Legislation Introduced in Massachusetts

Submitted by Laura Ness, Director, Government Affairs (GAO)

Last week, BAYADA’s Government Affairs Office (GAO) along with the Boston Pediatrics office, helped host a lobby day for providers, support organizations, and family coalition members.  The purpose of the legislation was to introduce a patient bill of rights for the medically complex population receiving continuous skilled nursing services and to obtain co-sponsors.  The event was well attended by over 100 individuals and many legislators and staff.  During the lobby day, we had meetings with over 50 legislators and visited every office in the legislature to drop off our packet about the bill. We were also fortunate to have the Boston Globe cover our Lobby Day!  To date, we have over a dozen legislators that have signed onto the bill. Parents and supporters who were unable to be at the lobby day in person sent over 400 emails to legislators.  Click here for the full text and to see what your colleagues have said about the article:

Join the conversation: #mychildcantwait

Photo: Those in attendance at the lobby day.

Breakfast With A Purpose in North Carolina

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)

To commemorate the start of the 2017-2018 regular session, our staff attended an annual breakfast in Raleigh on January 11.  As hosts of the event, staff had a 30 minute private mingle with members.  We were able to thank lawmakers for the nursing increase last year, and to discuss the less-than-adequate aide rate and the overly burdensome and varying administrative requirements of Local Management Entity/Managed Care Organizations.  Further, Senator Shirley Randleman, a home care supporter, thanked us for keeping her in the loop on a constituent issue where a medically fragile child is in jeopardy of losing his private duty nursing.  To which Randleman said, “For the insurance company to say this baby is stable and doesn’t need home health care is unbelievable.”  She is willing to help in any way possible.  Events like this allow us to continue to build relationship with lawmakers.  Click here for photos.   Special thanks to the following staff members who represented BAYADA:

  • Chad Shore
  • Dena Hinkle
  • Donna Heatherly
  • Elizabeth Goad
  • Trip Smithdeal
Photo: BAYADA advocates at the Women in Politics breakfast on January 11.