We often think of advocacy as sharing our stories, our challenges, and asking for legislative support in addressing those challenges. But advocacy is much more multi-faceted: It’s about building relationships by cultivating legislative connections so that they become home care supporters for life, and it’s certainly about saying Thank You when the support pays off by resulting in a law or policy that is beneficial to the individual and to the home care community at-large.
Below, find a Thank You note written by North Carolina home care recipient and Hearts for Home Care advocate Ari A. Ari has been able to thrive and stay independent at home because of the skilled nursing services he receives under North Carolina’s Medicaid program. Recently, he wrote to Medicaid staff to thank them for resolving a critical issue that enabled him to continue these services. Medicaid staff are committed to improving health and well-being of North Carolinians, and their transactions are often behind the scenes and receive little recognition. Hearts for Home Care applauds Medicaid staff across the country for their commitment to helping individuals stay at home, and we applaud Ari for his sincere thankfulness of their work.
To All I Work with in NC DHHS and Medicaid,
Some of you I’ve known for years and some a short time. Through it all, the one and most important factor that has been consistent has been the capacity to care. Time and time again over the years I have had to get battle ready in order to keep my life-saving services. However, instead having to scale cold-hard hearts, impenetrable like a fortress, you invited me into your hearts. You consistently agreed to provide for my intensive care in my home instead of a medical facility; which essentially would have been leaving me out in the cold to die. Instead of fighting me you have been my allies, always being there for me when I needed you the most.
These truths became ever more apparent a couple weeks ago. For the past two years, my mom and I have been getting things ready to transfer my medications, physical therapy, and supplies to Medicare without de-stabilizing my PDN services under Medicaid. It has been a mind numbing, complicated process. We have been hyper-vigilant not to miss any details that could easily be overlooked. We recently turned in sensitive paperwork to the Department of Social Services (DSS) well before the deadline. On November 30 we spoke with the Director of Policy and Procedures for Medicaid Sandy Terrell about how to safeguard my PDN even more during the transition. Ms. Terrell told Saunja Wilson from PDN to double check if everything was in order by the end of the month. Thank God, Ms. Wilson decided to check right away. The sensitive paperwork we emailed to DSS was present, but hadn’t been pulled up yet even though my caseworker had the paperwork in her email. One of the Supervisors at DSS had also confirmed that we had it turned in. We were told email or fax was equally acceptable for documentation.
The breakdown was that this particular caseworker did not use her email for business and preferred to have documents faxed to her. My caseworker tried to alleviate a little bit of pressure off my mom and I by telling us to ignore the ‘Termination of Medicaid Services’ notice in the mail. Yet, the absolute terror that rose up from the pits of our stomachs when we received the notice was totally indescribable! Despite the paperwork being directly faxed to my caseworker, we still waited for the approval. Thankfully over a week later, the situation was taken over by one of the Supervisors at DSS. She rose to the occasion and kindly brought the matter to a close so that my mom and I could peacefully go on with our lives.
Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.
To my old and new friends in DHHS and Medicaid, I appreciate you always having my back. Also, my sincere gratitude to Saunja Wilson for catching a “Near-Miss” that would have been just as deadly to me as a medication overdose.
All of you keep doing a spectacular job and always keep your focus on the people you serve instead of the numbers, especially as NC transitions to Managed Care. If you ever need my help just let me know anytime! My best wishes in the coming year and Happy Holidays!
Ari A. Charlotte, NC
On March 28, our annual North Carolina Hearts for Home Care Ambassador Symposium took place, where we provided tools and resources to our volunteer Ambassadors. The training focused on a variety of topics, including leading a legislative meeting and building relationships with lawmakers.
In addition to special guests former Representative Bill Brawley, Senior Healthcare Campaign Director of MomsRising Felicia Burnett, Association for Home & Hospice Care’s VP of Government Affairs Tracy Colvard, and Staff Attorney with Charlotte Center for Legal Advocacy Louise Pocock, the shining star of the Symposium was client Dimpal, who inspired all of our Ambassadors with her story of her journey into advocacy.
Beyond detailing the specific challenges she and her family face as a result of low state Medicaid reimbursement rates, Dimpal also described the ways in which home care and her nurses have changed her life and granted her independence:
“Without my nurses, I wouldn’t have been able to go to college and to live a full life. Without them, I’d likely be stuck in a hospital or a nursing home,” said Dimpal.
It was this gratitude for her nurses that propelled Dimpal to share her story and to advocate for others who rely on the state’s Private Duty Nursing (PDN) program to survive.
To hear more about Dimpal and the importance of advocacy, you can watch her full speech here. You can also read about her nursing care in the Gaston Gazette after a reporter came to her house to learn more about how her nurses impact her everyday life.
Special thanks to our Hearts for Home Care Ambassadors for volunteering their time and talents advocating for our staff and clients!
To learn about ways you can get involved in advocacy, email firstname.lastname@example.org today
State Budget Update
In North Carolina and across BAYADA’s GAO states, our legislative goals tend to revolve around two main tenets: First, achieving policies that streamline processes so that service offices can operate without added burdens and so residents can readily access care, and second, to increase reimbursement rates so that we can recruit and retain the caregivers necessary and ensure that we have the supply necessary to meet the demand.
It seems like common sense—North Carolinians want to stay in their homes, and home care services cost states less than care delivery in a different setting. So why can’t legislators simply fund home care programs at higher rates? The truth is that there are many competing interests and priorities, and limited amounts of state resources.
It is important to recognize the constraints with which lawmakers must work. Last year, Health & Human Services represented 22.4% of North Carolina’s nearly $24 billion state budget, second only to education, which represented 57.5%. Looking forward to the upcoming budget year, the state’s fiscal research arm reported that top budget pressures include: public schools, higher education, the state health plan, and Medicaid/Health Choice—meaning that there is a lot of pressure on the state’s already tight budget—and that’s not to mention the other interest groups we compete with, such as state nursing homes and other healthcare coalitions.
As GAO continues to garner legislative support for $29.5 million in state funds needed for the Medicaid rate increases we are seeking, advocacy efforts will play an important role. Please watch for ways to support our legislative ask, and please reach out to Mike Sokoloski at email@example.com to learn how you can get involved in advocacy on behalf of your staff and clients.
NC Bills we are following
To date, 824 bills have been filed in the North Carolina General Assembly this session. GAO continues to work through the proposed bills to evaluate their impact on home health care, home care, and hospice. Below are a few bills that are of interest:
1. H70 – Delay NC HealthConnex for Certain Providers, sponsored by Representatives Dobson, Murphy, White, and Lambeth
Home care champion Representative Josh Dobson submitted the bill that extends the deadline by which certain providers, including home care and home health care agencies, must participate in and submit data to the state’s Health Information Exchange Network, NC HealthConnex. We commend the bill sponsors for this delay.
While participation in and submission to NC HealthConnex is important and necessary in that it grants both the state and providers electronic, timely access to demographic and clinical data, our industry and others provider sectors do not have a consistent platform or an easy way to gather and transmit the required data. Access to this data and clinical information will help the state and providers identify spending trends that will facilitate health care cost containment while also improving health care outcomes only if the data is reliable and consistently reported.
This extended deadline proposed by House Bill 70 grants us additional time to meet the reporting requirements. We thank all the bill signatories for recognizing the administrative burden and granting additional time to meet the requirement.
The bill passed both the House floor on March 27, 2019 and is headed to the Senate.
2. H745– Medicaid Funding Request for Private Duty Nursing (PDN), sponsored by Representatives White, Lambeth, Adcock, and Cunningham
Our health care members, a home care nurse (White), a hospital administrator (Lambeth), a nurse practitioner (Adcock), and a hospice nurse (Cunningham), introduced H745 to increase the Medicaid funding for nursing under PDN from $39.60 to $45.00 by requesting $4.1M for 2019-2020 and $8.3M for 2020-2021 in recurring state funds.
As health care leaders, they recognize the importance our services play in keeping some of North Carolina’s most clinically complex citizen at home and out of more expensive settings. While the necessary funds were not allocated in the House Budget, we have an opportunity to get it into the Senate Budget and are continuing to advocate for this option.
3. H728– Increase Innovation Waiver Slots, sponsored by Representatives Insko, Hawkins, and Lambeth
This bill appropriates 500 Innovation Waiver Slots to address the waiting lists. It would support North Carolinians living with intellectual and developmental disabilities (I/DD) and help them receive needed services within their home and community. The bill proposes to appropriate $5.3M for 2019-2020 and $10,9M for 2020-2021 in recurring funds.
4. S361– Increase Innovation Waiver Slots, sponsored by Representatives Insko, Hawkins, and Lambeth
This proposed bill attempts to address several different health care issues in one bill. This approach makes it challenging to garner support in its entirety. The bill includes the following provisions:
- Elimination of Certificate of Need (CON) – Any action that erodes the established process by which a need is determined may lead to destabilizing our health care industry. The established CON process allows for any group to apply for a Special Needs Determination should they feel health care needs are not being met in their community.
- Establishes a carve-out for PACE organization – Any action that allows a group to be exempt from following Home Care Licensure Rules puts recipients at risk as the organization would not be required to follow health and safety rules outlined state licensure.
- Medicaid Expansion – Any opportunity for the North Carolina’s working poor to have access to health care coverage, the better. This provision includes a work requirement with exceptions for individuals attending school and or deemed disabled.
- Addition of Innovation Waiver Slots – Any opportunity for more individuals living with intellectual and development disabilities (I/DD) to have access to needed services, the better.
The introduction of this bill is the first step in a long process. GAO will continue to monitor and support the I/DD slot provision which aligns with our access to care goals. Some of the other items are very controversial because they create a slippery slope on oversight.
To find out what you can do to encourage your legislators to support the introduction of this bill, contact Lee Dobson at firstname.lastname@example.org.
GAO can’t do it alone, and in North Carolina we are proud to have so many employees that understand the impact of sharing their voice on behalf of all our staff and clients!
SHE and GAS Host Impactful Home Visit
Last month two offices, SHE and GAS, teamed up to host a home visit with newly elected Senator Ted Alexander. Our BAYADA team of advocates, including MIM Division Director Joe Seidel, GAS Clinical Associate Cheryl Reading and GAS Client Services Manager Jillian Fernald, as well as the client’s long-time nurse Vikki, spoke passionately about our services and the challenges we face in care delivery.
The visit was a grand success! The importance of home care and the work you do every day was certainly not lost on Sen. Alexander, whose wife and daughter are both nurses: “Our goal,” he explained, “is to keep families where they belong, together and at home.” These types of interactions lay the foundation for support of our legislative asks because the decision-makers see first-hand the impact home care has on families.
RAN Builds Relationships in a Different Way
Last month, the RAN office hosted a ribbon cutting ceremony to commemorate the grand opening of our new state-of-the-art simulation lab and training center. This was no regular ribbon cutting ceremony where the office invited current and prospective nurses to tour and see-in-action the simulation lab. We took the opportunity to educate lawmakers on the scope and breadth of what is possible in the home by inviting Senator Wiley Nickel to welcome the group. We also included Ed Troha, Vice President for the NC Chamber, who has four nurses in his family, to speak about the importance of the training center in job creation.
Additionally, former Senior Chairman for House Appropriations Nelson Dollar issued a proclamation to show his strong and constant support for home care. This center allows BAYADA to train nurses using real life scenarios that helps develop confidence, competence, and builds career-building skills to home health care nurse. Increasing awareness among legislators and other community leaders on the benefits of home care helps garner support as we work toward our legislative goals.
Thank you to the many North Carolina staff and families that regularly share their voices in advocacy! To find out how you can get more involved, contact GAO Director Lee Dobson today!
Lawmakers returned to Raleigh on January 9 for the 2019-2021 long legislative session. We expect to see some changes in committee assignments and leadership, especially in the House Appropriations for Health & Human Service (HHS), with the election defeat of Chairman Nelson Dollar.
Dollar–the former chairman of the House Appropriation Committee—has transitioned from the public sector to a senior policy advisor to the Speaker of the House Tim Moore. Dollar has been a home care champion for years and was named BAYADA’s Legislator of the Year in 2016 and 2018 for his efforts. He was instrumental in securing much needed Medicaid reimbursement rates increases for nursing and aide services. He has also been instrumental in protecting from elimination the Certificate of Need (CON) process for our Medicare offices. His expertise and knowledge on complex issues at the statehouse will serve North Carolina well. As you may recall, Dollar lost his seat by 884 votes last November to Democrat Julie von Haefen.
While we are sad to see our former Champion lose this leadership position, there are other home care Champions that we anticipate seeing in key roles. We expect to see Representatives Donny Lambeth and Josh Dobson as co-chairs of HHS. Further, we anticipate Senators Ralph Hise and Joyce Krawiec in chair positions serving the Finance and/or Health Committees. All four legislators are well-versed in home care and the challenges our clients and staff regularly face throughout North Carolina due to our collective advocacy efforts. This puts BAYADA in a great position to move forward with our next round of asks.
Our major reimbursement priority this session is to increase the Medicaid private duty nursing (PDN) rate from $39.60 to $45.00 over the course of two years. This increase is necessary to help us recruit and retain the high quality, compassionate nurses we need to care for the many North Carolinians that need skilled care to stay at home.
Sharing your voice is key to achieving our goals: Be sure to look for opportunities to advocate as we seek to support our clients and staff. Of note, please save the date and be sure to look out for communications regarding our Legislative Day, which will be held in Raleigh on May 1.
Oftentimes, when we hear the word “advocacy” we think about attending a BAYADA-sponsored lobby day in a state capitol or visiting a legislator’s local office to ask him or her to support or oppose a piece of legislation. While both those options are in fact forms of advocacy, they’re not the only ones.
North Carolina client Dimpal Patel recently joined Hearts for Home Care, a program that BAYADA’s Government Affairs Office began to get clients, families, staff members, and the community at-large more engaged in legislative advocacy. She expressed that she wanted to get involved, but as an individual with a trach, vent, and wheelchair, she would need a lot of assistance traveling to advocate in person.
The Hearts for Home Care team immediately encouraged her to reach out to her local paper by submitting a short opinion piece about her thoughts on home care. She shared an insightful take on how her nurses enabled her to live on campus and graduate from UNC Charlotte, as well as how important Medicaid is for her and so many others that rely on home care.
The Gaston Gazette received her piece, but instead of publishing it, they sent a reporter to Dimpal’s home to get a better look at how home care impacts her life first-hand. The reporter spoke with Dimpal and her nurse, Amy, about the importance of legislators’ mindfulness of continued Medicaid funding—and her story made the paper’s front page!
“I’ve always wanted to get more involved in advocacy because I think it’s important that our state and federal decision makers hear our voice and understand how important home care is in our communities… but I was always worried because I can’t get to the state capitol or to legislative hearings as easily as others can. I’m grateful that Hearts for Home Care has given me the tools to help me begin my advocacy journey from home,” Dimpal told us recently.
Home care by its very nature often helps those with limited mobility to live a full life and remain at home. That’s why the Hearts for Home Care team developed a robust menu of advocacy activities—so that anyone who wants to get involved in advocacy can! Reaching out to legislators via traditional media or social media, calling into a town hall, sending a newspaper clipping or an email are just a few of the many ways individuals can advocate from their own home.
In today’s world elected officials and regular individuals alike are bombarded with messages, from advertisements on the bus to a long social media newsfeed, all the way to robotic phone calls and junk mail. It’s important that we take a step back to cut through the noise to deliver our advocacy message to state and federal decision makers: Home care is important to me, and it should be important to you too.
UPDATE, January 11, 2019: After advocate Dimpal Patel sent her opinion piece to her local paper–the Gaston Gazette–they sent out a reporter who profiled Dimpal and the impact her home care services have had on her in greater detail! Great work advocating Dimpal!
BAYADA Home Health Care client and Hearts for Home Care advocate Dimpal Patel shares her view on home health care in an opinion submitted to her local newspaper.
I might sound like your typical local 23-year-old: I recently graduated from UNC Charlotte with a bachelor’s degree in marketing. I absolutely loved living independently on campus, and I love to play games and watch movies. But I am very different from most 23-year-olds you know because I rely on a trach and ventilator in order to survive, and it’s because of my home care nurses that I am able to grow and thrive independently.
My two BAYADA Home Health Care nurses—Chastity and Toni—have been with me for nine and six years each. They are like family to me, and they really are lifesavers. Without them, my parents would not be able to work and keep me at home, and I certainly would not have been able to experience college life. Chastity and Toni not only provide me with the skilled services that I need to survive, but they really are like best friends to me. I can’t imagine what my life would be without them—not only would it be without my two friends, but I’d likely be stuck in the hospital, a nursing home, or rely on my mom or dad to quit their job to take care of me.
My worst fear is that lawmakers cut Medicaid funding like they tried to do in Washington last year. If this happened, not only would I likely lose my nurses, but I’d be at risk of having to move into a nursing home. As someone who has experienced living independently and how it has allowed me to earn a degree and contribute to society, I ask that our state and federal legislators be mindful of what funding and service cuts can mean—not only to the state’s financially needy or to the elderly—but to 23-year-olds like me who want to continue living a full life.
-Dimpal Patel, Belmont, NC
Great news for our NC Habilitation offices that operate under Partners Behavioral Health, a Local Management Entity/Managed Care Organization (LME/MCO) that oversees Medicaid’s Innovation Waiver in western North Carolina. After more than of a year of advocating for rate parity for like services, Partners announced yesterday rate increases for community-based services. The Community Living & Support rate will see a 9% increase, bringing it to $20.28 effective August 1, 2018.
This much-needed increase will allow BAYADA to hire and retain more qualified professionals and take care of more individuals at home and in the community. While this is a great step forward, our work is not done yet. BAYADA, along with our Hearts for Home Care advocates, will continue to push towards more rate increases so that we can ensure that North Carolina has enough high-quality caregivers to meet the growing demand for home care services. Our field staff deserve better wages, and our clients and all of those who wish to remain at home in North Carolina deserve better access to quality services.
Thank you to all our advocates who supported this increase through your input and your contact with legislators. We truly are #StrongerTogether.
This year has proven to be anything but normal at the General Assembly. Instead of adjournment with sine die, which indicates that no future business schedule this session, the Republican majority passed House Joint Resolution 1101, which calls back lawmakers on November 27. This political power move gives the Republican super-majority one last session no matter what happens on election day.
Despite this unusual legislative session, BAYADA managed to accomplish the following legislative priorities:
- Secured a 12.37% aide rate increase for CAP-DA, effective Jan 2019
- Protected Certificate of Need from elimination for our Medicare offices
- Secured a 9% rate increase from Partners Behavioral Health for our Habilitation offices, effective August 1, 2018
Thank You to our many ambassadors and advocates that helped us achieve these goals. We could not have done it without your passionate voices coming together to support all of North Carolina’s home care employees and clients.