Advocacy in Delaware: Super-mom Kateri Morton Advocates on ABC and in Dover

Mom Kateri Morton (right) was featured on ABC-47 with son Joey (left) to advocate for increased funding for DE’s PDN program

Hearts for Home Care super-advocate and super-mom Kateri Morton was recently featured on ABC-47 alongside her 8-year-old son Joey and his long-time nurse Diane to advocate for better state Medicaid reimbursement rates. To date, Delaware has not raised reimbursement rates for the state’s private duty nursing (PDN) program in 16 years. As funding for this important program falls behind rising costs of living and providing healthcare services, it’s families like Kateri’s that ultimately suffer.

“Most of our nurses have either left or stopped working in that area because of their own health factors. Or they had to go to different jobs for employment,” says Kateri. Home care agencies rely on the state’s reimbursement rate to provide nurses’ wages, supplies, training, and benefits. The 16-year stagnation has driven nurses to seek employment in hospitals and other facilities that can afford to pay nurses more in wages. As agencies struggle to recruit and retain enough caregivers, families experience more unfilled nursing shifts, sleepless nights, and struggles maintaining employment.

The COVID-19 pandemic has only exacerbated the issue, as staffing issues have limited nurses’ ability to care for high-risk clients and as precious personal protective equipment (PPE) has raised providers’ everyday costs. Nurse Diane says, “We’re struggling. We can’t retain our nurses, and with COVID going on, more and more families are being touched by home care nursing.”

One of the most compelling aspects of the reimbursement rate issue in Delaware and across the US is that increasing families’ access to home care would save state Medicaid programs significant funding dollars that currently go toward care that residents receive in ERs, hospitals, and other facilities.

The key to getting this issue on the top of legislators’ minds is to increase the number of affected family members who speak out and advocate on behalf of themselves and their children. Kateri’s network of DE moms and other guardians have shared their unique stories and struggles with one another, and with Delaware’s decision-makers. Recently, Kateri secured meetings with Delaware’s Medical Advisory Committee and the Department of Health and Social Services. “Advocating for Joey has empowered me. Without nursing, I can’t provide financially, physically, and emotionally to my fullest,” says Kateri. “As mothers of medically fragile children… when there is an opportunity to show an elected official how important this care is, that story paints a picture that a million facts and statistics cannot.”

Kateri recently created a Facebook group for DE families interested in advocacy. Check out her group and Hearts for Home Care to join others in advocacy opportunities today!

In New Hampshire, Home Care Advocacy Brings Results

BAYADA Home Health Care’s pediatric client G (Gina) with her her nurse Laura.

While much of the home health care community continued to reel from the onslaught of challenges faced from the COVID-19 pandemic, Hearts for Home Care advocate and BAYADA Home Health Care office director Cathy Slack has remained focused on the many positives. Namely, throughout the pandemic, she witnessed many caregivers, office staff, clients, and families advocate for better access to care, and also witnessed the state government’s response to hearing these voices.

One of the major wins that New Hampshire’s home care community saw as a result of their continued advocacy was the development of the Long-Term Care Stabilization Stipend Program (LTCSS), which served to borrow money from the state’s General Fund in order to offer stipends to essential healthcare staff to continue to work throughout the pandemic.

The state’s actions created an incredible domino effect that kept the positive changes coming. In Cathy’s office, coverage hours and the number of employed nurses both increased as RNs and LPNs transferred their passion for caregiving from their usual settings to the home care community. One such example is former full-time school nurse Laura Walker, who came to home care full-time after COVID suddenly halted normal school activity. Her transition was an immense positive for both Laura and her pediatric client, G, and G’s family. Laura’s care enabled them to feel security and peace-of-mind as G’s medical and academic routine suddenly flipped without warning.

“One day my medically fragile, intellectually disabled child went to school every day from 8 am to 3 pm where she was cared for by a nursing team and then came home to nursing services from the time she got off the bus until she went to bed. G’s school transferred to remote learning seamlessly, but how would my daughter respond to this new way of learning?” said G’s mom Michele. “My biggest concerns were: would she remain engaged without the school nurse keeping her safe, and how would she remain healthy at home with this gap in medical services? This is where Laura stepped up and went above and beyond.”

“These nurses put their own safety on the line to not stay home every day but to come out and care for our child. The stipend they earned through the state’s program was well deserved and I am grateful as a parent and a citizen of New Hampshire that the monetary recognition was given,” says Michele.

Michelle’s testimony is one of many that shows how medically-fragile families were given a lifeline through LTCSS during a time of uncertainty. Thank you to the many Hearts for Home Care Advocates, and to the State of New Hampshire, for making this lifeline available to the many residents that need home care to stay safe and healthy at home. To find out more about how Hearts for Home Care operates in New Hampshire or elsewhere, contact us at advocacy@bayada.com.

Client Spotlight: BAYADA NJ Client Jim Davies Turns Home Visit into an Opportunity to Fight for Nursing Coverage

BAYADA client Jim Davies (center, seated) hosted a home visit with Assemblyman Benson (upper left)

When BAYADA Home Health Care client Jim Davies received a notice in the mail last year that his insurance would be transitioning to another agency, he tried not to panic. After all, the letter stated there would be no change, he would still receive coverage for his home health care nursing and personal care home health aide services.

However, Jim was not convinced. The 66-year-old, who suffered a spinal cord injury as a result of a diving accident 20 years ago, is nearly paralyzed from the neck down. He relies on his nurses for his complex medical needs, which include wound care, range of motion exercises, mechanical transfers to and from bed, medication administration, catheter care, and care to prevent a serious complication called autonomic dysreflexia, which can lead to seizures, stroke, or even death.   

As a former sheriff and local fire commissioner, Jim is used to working collaboratively with others to make things happen. That’s why he immediately called a case manager at the insurance company, who reiterated what was explained in the letter, his home health care coverage would not change.

Coverage denied

Fast forward to the end of the year when Jim received another letter, this time from the new insurance company. Despite written and verbal assurance that his coverage would not change, the new company denied his home health care services, insisting Jim was stable enough and no longer needed nursing care.

Jim reached out to his BAYADA Mercer County Adults (MCA) office Director Meghan Hansen and Clinical Manager Sharon Wheelock who appealed the decision on his behalf, to no avail. That’s when they turned to BAYADA Government Affairs Area Director Louise Lindenmeier, who suggested Jim reach out to New Jersey Assemblyman Daniel Benson, a member of the state Health and Senior Services Committee.

Legislative home visit leads to positive change

“When I called Assemblyman Benson’s office, I wasn’t sure what the response was going to be, but I was pleasantly surprised,” says Jim. “The assemblyman made me feel that as his constituent, my problem was a major concern, and he owned it.”

Assemblyman Benson visited Jim and his wife of 40 years Rosemary at their home to witness, first-hand, the critical role home care nurses play in Jim’s health and well-being. During the visit, Assemblyman Benson also learned about the catastrophic medical consequences of stopping Jim’s nursing care and BAYADA’s unsuccessful efforts to appeal the denial from the insurance company.

Following the visit with Jim, Assemblyman Benson jumped into action. He joined BAYADA Managed Care (MCO) Director Pamela Soni, BAYADA Area Director for Pediatrics Managed Care (MCP) Stephanie Perna, and Louise for a meeting with the NJ Department of Banking and Insurance to discuss Jim’s case. In addition, he personally contacted the insurance company to negotiate the contract, resulting in a reversal of the denial. Thanks to his efforts, the issue was resolved within two weeks.

“It is really important to educate politicians on how insurance changes can impact their constituents,” says Jim, who encourages others in similar situations to reach out to legislators who may be more than willing to help. “Assemblyman Benson should be recognized for his prompt and professional response to my needs.”

Assemblyman Benson considered it a privilege to play a role in helping Jim. “It was my honor to work with Mr. Davies to ensure that he received the care he needs and deserves,” he says. “As legislators, it is our sworn duty to represent our constituents, and that means lending our assistance whenever possible, whether by simply cutting through red tape or elevating a situation to a higher level so that it is promptly addressed. I would encourage those in need to reach out to their elected representatives to learn what they can do for them.”

Want to Help Make a Difference: Register for Hearts for Home Care

Whether you can give a minute, an hour, or a day, there are many ways to get involved in advocacy. It can be as simple as sending a pre-written email to your local legislators, hosting a legislator in your home, or attending an event at a legislator’s office or your state capitol.To learn more, consider becoming a “Heart for Home Care” advocate. It only takes five minutes to register at heartsforhomecare.com. You’ll receive email updates about current issues and opportunities to make your voice heart.

Grassroots Advocacy: GAO Ambassador Program Completes an Expansive and Record-Breaking 2019!

Southeastern Ambassador Academy 2020: BAYADA’s Hearts for Home Care Ambassador program has been growing steadily each year

Each year, more and more of GAO’s efforts are successful due to the increase of our collective voice: That is, the united voice of our clients, families, employees, and industry partners. GAO staff can only do so much alone—it is our Hearts for Home Care (H4HC) Ambassadors and advocates who help to bring the message to legislators loud and clear.

And our Ambassador program continues to grow every year. In 2019, 335 BAYADA employees and caregivers served as Ambassadors—a 28% growth over 2018! Not only is the Ambassador program growing and expanding each year, the culture of advocacy is growing across the company. That is, Ambassadors are increasingly getting their coworkers and clients involved in advocacy efforts, and BAYADA and the home health care industry as a whole are seeing how their voices help make a significant impact.

In 2019, GAO saw a major expansion of the Ambassador program. Traditionally, each GAO state director would host an annual Ambassador Training day. After extensive research and development, GAO expanded and enhanced the program by hosting seven revamped on-site Ambassador academies, ten 30-minute educational Ambassador zoom sessions, and eight on-boarding sessions for new Ambassadors. Additionally, GAO developed the curriculum for, and hosted, the first-ever Advocacy Bootcamp during the National Association for Home Care and Hospice (NAHC) annual conference in Seattle, Washington. Here, GAO taught and trained other providers on BAYADA’s “best-in-the-industry” grassroots advocacy program.

The Ambassador program continues to grow every year in number and in recognition. In 2019, BAYADA’s grassroots and Ambassador programs were recognized as one of the most impactful in the entire home care industry. In 2019, Ambassadors continued to lead home visits, legislative roundtables, and office visits with legislators.

THANK YOU to all our Ambassadors
We would not be successful without you!

Delaware Hearts for Home Care Advocate Shares Heartfelt and Impactful Story with Legislators!

Recently, a Delaware pediatric licensed practical nurse (LPN), Charlene Chappell, signed up for Hearts for Home Care and wanted to get involved. And did she come out in full force!

After sharing powerful and heartfelt testimony in Dover, DE’s Legislative Hall about the impact she makes on families and the challenges low Medicaid rates bring to nurses who want to provide one-on-one care to families at home, Charlene listened to a radio show where host Joel Olsteen spoke about “an itch you just can’t scratch.”

That got Charlene thinking about more advocacy. Charlene said, “I feel that the majority of men and women that serve as elected officials have no clue what’s required of a family when they have a child that has special needs and is differently abled! They don’t understand that nurses need to be attracted to home care so that families can rely on this care to keep their medically-complex children at home.”

That inspired her to write the below story and send it to all Delaware legislators. Read Charlene’s powerful story below!

My Itch!

I have an itch! Mo matter how hard I try to let someone know, I can’t.  I’m 8 years old and I can’t tell Mommy where I itch! I can’t reach my itch! Its 2:30 in the morning and Mommy has fallen asleep in the chair next to my bed because she had to work today and then take my sister to her dance lesson. When she finally arrived home she threw some dirty laundry in the washer, and cooked dinner. After dinner she put the wash in the dryer, and then she loaded the dishwasher. She came in my room to check on me and feed me. Off she went to make sure my sister had done her homework and was in the shower. Oh no, an alarm is going off! Here comes Mommy. I wish I could tell her how much I love her for all she does and about my itch. She looks so tired. It’s almost 8:00 pm. The phone is ringing. Hurry Mommy before they hang up!

I can hear Mommy on the phone. “What! Oh no, please tell me it’s not true. I’m so tired tonight. I don’t know if I can stay up all night with him but I must. I have to make sure he’s ok on his ventilator and his medications are given at the right time, so he doesn’t have a seizure, and that the tube feeding is running properly. He has to be repositioned every two hours so his skin doesn’t break down. I have to check his diaper too. Well… thanks for the phone call.”

Oh no. Mommy just found out my favorite night nurse called out tonight, and the rest of forever. The agency is going to try and find a replacement as soon as possible, but that may take some time. Nurses aren’t as anxious to get into home health care nursing because they can make more money at a hospital. Mommy is going to miss work because she will have to stay up with me as Daddy’s gone from home with his job right now. Mommy may lose her job. I’m so sad my nurse left. She really knew me and she knew when I had an itch. She would gently scratch me all over till she found it, like Mommy does. She understands my cues and my facial expressions as I can’t talk, or walk, or move because of my illness. 

I heard Mommy talking to the lady at the agency about the nursing shortage in home health care. She told Mommy that the money provided for reimbursement by Medicaid, not Medicare, has not increased in 13 years! The last time there was an increase in Medicaid was in 2006! I wasn’t even born then! She also told Mommy that the companies are running out of their own funds to supply the raises the nurses deserve. God bless the nurses that do work in home health care, for a lesser wage then they deserve, and take care of not only me but my mommy and Daddy too. Without them my Mommy and Daddy would not get the proper rest, would have to quit work to care for me. It would not be a good thing for my family. We would all suffer. I don’t want to go anywhere but here in my room. What if we can’t find a new night nurse? Where will I go? I overheard the doctors and nurses at the hospital talking last time I was admitted for a bad seizure and they said that all children do better in the home setting for getting well once they can leave the hospital. They are less likely to get sick again from a disease they acquired while in the hospital, and all of us are more comfortable in our own bed!

I hope my story has helped you to understand why we need to increase the Medicaid budget. Not Medicare, but Medicaid. Mommy told me that some people get confused so that’s why I will say it one more time. Please increase the Medicaid funding for home health care nurses.

Thank you for reading this. Mommy thanks you as well as all the other children and their parents that require specialized home health care nursing.  And yes, Mommy found my itch!

Thank you, Charlene, for sharing your creative and passionate story with Delaware’s legislators. We must all share our voice to make an impact, and your advocacy highlights your deep commitment to your clients’ care.

Hearts for Home Care is seeking to advocate for higher reimbursement rates for skilled nursing services in Delaware so that nurses can be better attracted to home care, and so families that need this care to stay together at home can more easily and reliably access it. For information on how you can get involved, contact us today

Advocates in Action: Dimpal Patel Inspires NC Ambassadors at Ambassador Symposium

Client Dimpal P. inspires Ambassadors during North Carolina’s Ambassador Symposium

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 advocacy@bayada.com today

Delaware Sets Grassroots Advocacy Records in 2019!

More than 50 home care employees, clients, and family members attended the DE Association for Home and Community Care Legislative Day!

Delaware Ambassadors and employees have set participation records at two key annual advocacy events this year—The Delaware Association for Home and Community Care (DAHCC) Legislative Day and our annual testimony in front of Delaware’s Joint Finance Committee (JFC).

The first, the Delaware Association for Home and Community Care (DAHCC) Legislative Day on March 13, had a record attendance of more than 50 attendees! 41 registered for the event, which would have been a record itself, but the larger-than-expected turnout was an impressive surprise. Seven providers, including BAYADA, were represented, and the crowd included six families advocating for themselves and their nurses. Everyone wore their own company’s branded gear but united behind Hearts for Home Care buttons that proclaimed, “Home Health Care Matters to Me.” Legislators heard our message was heard loud and clear.

BAYADA employees made their voices heard in front of the DE Joint Finance Committee

In another first for Delaware, two legislators spoke in support of a large rate increase for Delaware’s home care RNs and LPNs at the DAHCC Day Press Conference. To make it even better, the two were none other than the Senate Majority Leader, Senator Nicole Poore, and the House Majority Leader, Representative Valerie Longhurst. Both spoke passionately about the importance of home care in our communities and the need to increase reimbursement to ensure that this vital care is available to those who rely on it.  They were joined in speaking by the Executive Director of DAHCC, Jean Mullin, and BAYADA client Haley Shiber.

A week later, on March 20, Delaware advocates broke another record when 15 members of our community testified before the powerful Joint Finance Committee (JFC) in support of increasing Medicaid home care reimbursement rates. Led by Jean Mullin, participants included Torie Carter, Jenny Scott, Mandy Brady, Judeth Smith, Ali Knott, Danielle Myers, Shannon Gahs, Dave Totaroand representatives from Epic/Aveanna and Maxim/Aveanna.  Client Haley Shiber was unable to attend in person but sent a powerful testimony video to the JFC members before the hearing. The Joint Finance Committee hears budget requests from all state agencies and testimony from the public before making an annual budget recommendation to the full General Assembly. The General Assembly frequently follows the majority of those recommendations. Members of the committee told BAYADA in the days following the hearing that they had never before seen such a large contingent testifying on a single issue!

The industry-wide coalition led by BAYADA and DAHCC is pushing the Delaware legislature for a 21% increase in the Medicaid home care RN and LPN rates, which would impact our Skilled Nursing practices—Pediatrics and Adult Nursing. Because of the home care Rate Floor passed two years ago mandating that Medicaid MCOs pay no less than Medicaid fee-for-service, these new higher rates would have to be paid not only for “straight Medicaid” hours but also those funded by managed care in Delaware. These two rates currently remain at their 2006 levels, harming our ability to recruit and retain the highly-skilled RNs and LPNs that are so important to the lives and welfare of our clients.

Thank you to our advocates who turned out and made sure that Delaware’s decision makers know that we are here to advocate on behalf of our staff and clients, and that home care makes a difference in the lives of so many Delawareans!

Maryland Receives Major Medicaid Rate Increase- 30% Over the Next Six Years!

Great things happen when we advocate together! After years of advocacy from BAYADA, our partners, and many parents and home care employees, the Maryland General Assembly recently passed two pieces of legislation that collectively will increase all Medicaid home and community-based services reimbursement rates by more than 30% over the next six years. Though initially met with opposition from Governor Larry Hogan, the Maryland General Assembly heard our voices and overwhelmingly voted to override his veto of one of the bills.

The first bill, the state’s annual budget, provides a rate increase of 3% that will go into effect July 1, 2019. The second bill, also effective July 1, 2019, contains an amendment which will increase reimbursement rates by 4% each year between July 1, 2020 and July 1, 2025.

Currently, Marylanders who rely on in-home nursing care have only 83% of their authorized hours filled, meaning that families struggle to fill their medically complex loved ones’ skilled home nursing care nearly 20% of the time! We have found that Medicaid rates have stagnated below the cost of living and below wages seen in other settings—such as hospitals and facilities—and surrounding states—and that families were struggling to fill these hours. We are hopeful that these access-to-care issues will be alleviated as providers will be able to recruit and retain nurses within the home care industry, and that more of Maryland’s most medically complex will be able to stay safe where they want to be—in their own homes.

This was a true team effort led by BAYADA and the Maryland National-Capital Area Home Care Association (MNCHA) and including MNCHA member providers, several individual families, parent advocacy organizations and disease-specific advocacy organizations. Special thanks to JoAnn Saxby, Patrick O’Malley, Eddie Dyer, Patty Watson, and Susan Ingalls who all played important parts in making this happen and to BAYADA Delaware employees Mandy Brady, Kristyn Kelsch, and Taylor Kosinski who went above and beyond to advocate in their sister state. Mike Sokoloski, Tara Montague, and Nicole Onofrio were instrumental in supporting two Town Halls and Legislative Day, and Alisa Fox coordinated timely articles in The Baltimore Sun, The Washington Post, and on WDVM TV in Western Maryland. Maggie Tracy managed countless logistical hurdles and supported direct lobbying and grassroots efforts.

Thank you to everyone who played a role in this major achievement! Advocacy cannot succeed if only one voice is heard, and your advocacy has contributed to the well-being of so many Marylanders in need of home care.

For more information on this increase, or how you can get involved in advocacy in Maryland, please contact Shannon Gahs at sgahs@bayada.com.

Ambassadors of the Year get Ready to Head to Washington, D.C. for Annual Awards Trip!

Ambassadors of the year in action! On May 9, each state winner will head to Washington D.C. and find out who this year’s overall winner is.

When the Government Affairs Office (GAO) launched the Hearts for Home Care Ambassador program nearly ten years ago, we envisioned that each service office would assign a designee who would essentially act as the GAO liaison for that office. How much we’ve grown! Today, our Ambassadors go above and beyond to be the voice for our staff and clients, and we are proud to reward them for their efforts!

Over the past year, the Ambassador program has grown tremendously, with nearly 80 more BAYADA office employees serving as Ambassadors than last year. Not only are these numbers a great indicator of growth, but our Ambassadors’ increased engagement shows how each one is truly a leader and innovator in their office, and in legislators’ offices around the country.

Each year, we choose an Ambassador of the Year from each GAO state, and each state winner joins GAO in a special recognition trip to Washington, D.C. The following Ambassadors went so far above and beyond in their advocacy efforts—whether it be through legislative visits, home visits, helping with testimony, or other creative ventures—that GAO chose them as their state’s Ambassador of the Year: Justin Booker (NY), Beth Schenck (RI), Lisa Minnella (NJ), Tom Johnson-Medland (PA), Victoria Carter (DE/MD), Trip Smithdeal (NC), Jenni Cairns (SC), and Doug McNew (GA). Additionally, each year GAO chooses a “Rookie Ambassador of the Year,” this year being Rebecca Gaughan of the Poppy Division.

All nine winners will attend the Ambassador of the Year Awards trip to Washington, DC, on May 9-10. During the trip, our guests will enjoy an overnight stay on Capitol Hill, a guided sightseeing tour, and a private awards dinner where we will announce the overall Ambassador of the Year winner! In addition to the trip, this year, GAO surprised each state winner “Publisher’s Clearing House-style” in person at their office in front of their peers. Our Ambassadors do so much to be the voice of our staff and clients, GAO is excited to take them on an exciting trip and make sure that they have a great time.

To learn about what each individual Ambassador did to win this prestigious title, click here for a summary or look back on previous Bulletin articles through March and April, where we highlighted their accomplishments and creative approaches to advocacy! The primary responsibility for the GAO Ambassadors is to develop and foster relationships with their legislators through district office meetings and home visits so that our state and federal decision makers understand what home care is and how it affects their constituents. 

Our Ambassador program continues to grow and reach new heights—and we are always open to more involvement! Our Ambassadors serve as the forefront of our advocacy program, and truly make the difference in educating local legislators about home care and its impact on clients and communities. If you are interested in learning more about the Ambassador program or how you can get involved, email msokoloski@bayada.com today!

Legislation Close to our Hearts: NJ Mobility Bill Named after Hearts for Home Care Advocate’s Daughter, Mary!

Mom Tara Montague (left) and daughter Mary (center) during a home visit with Asw. Carol Murphy. Asw. Murphy recently introduced “Mary’s Law.”

Home care supporter and New Jersey Assemblywoman Carol Murphy recently introduced a bill which will address unequal access to the purchase of modified vans through the Catastrophic illness in Children Relief Fund.

Assemblywoman Murphy was alerted to the issue after Hearts for Home Care manager and advocate Tara Montague told her about the issue, and how it has impacted her daughter, Mary, and many of New Jersey’s medically fragile children. Mary and Tara have utilized the fund, and have been important advocates in ensuring the fund is both adequately funded and accessible for the many New Jersey residents that need it.

Currently, families can apply to the Catastrophic Fund to purchase a modified van so that they can safely transport their medically fragile child. However, current regulations require that families pay for the van upfront and wait to be reimbursed by the Fund. This stipulation presents a sincere barrier to transportation for families that cannot afford to front tens of thousands of dollars while they wait to be reimbursed.

Mary’s Law addresses this issue by requiring the Catastrophic Fund to provide direct payments for the purchases of specialized, modified motor vehicles. In addition, this legislation will increase the annual surcharge for New Jersey employers from $1.50 to $3.00 per employee to insure the Catastrophic Fund is adequately funded to meet the its purpose and demands.

“Medically fragile children like Mary deserve to travel safely and freely. This legislation ensures that children and their families receive the help they need regardless of their financial situations. Ever since Mary was born, I’ve been a staunch advocate for her needs and for better laws and policies, but I never thought advocacy could hit so close to home–Mary and our family are ecstatic that we can bring about change for all New Jersey’s children and families that need it,” said Tara.

Thank you to Tara and Mary for continuing to be effective advocates on access to transportation. Hearts for Home Care will continue to provide updates as the legislation progresses through New Jersey committees and chambers. If you have questions about this legislation or how to get more involved in advocacy on behalf of yourself, a loved one, or your staff and clients, please contact advocacy@bayada.com today.