Advocate Spotlight: Christine Detweiler is a Voice for Her Pediatric Client Gideon

From home visit to house bill: Christine’s advocacy efforts lead to a bill introduction!

Pictured: Christine Detweiler (left) poses with fellow home care advocates and state Representative Craig Staats during The Pennsylvania Home Care Association’s Advocacy Day
Pictured: Christine Detweiler (left) poses with fellow home care advocates and state Representative Craig Staats during The Pennsylvania Home Care Association’s Advocacy Day

Pennsylvania Hearts for Home Care Ambassador Christine Detweiler has always been a diligent advocate, but recently, her efforts have proven that home care employees can truly go beyond the call of duty for clients and staff by serving as their voices in our state capitals.

“Home care is important to so many Pennsylvanians, and many aren’t as readily able to meet with legislators to share their stories,” said Christine. “I see advocacy as an extension of why I do what I do as a home care employee: We need to make sure we get out there to be a voice for those who don’t have one!”

Christine has been progressively adding more interactions to her advocacy portfolio—Over the past year-and-a-half she focused on meeting legislators in their district offices, and in the past few months she has hosted multiple home visits. Home visits are the most impactful way to demonstrate the importance of home care to legislators because it gives them a chance to see firsthand how clients receive services. To say Christine’s home visit resonated with Pennsylvania state Representative Marguerite Quinn is an understatement.

A few months ago, Christine led the representative on a home visit with five-year old client Gideon M. who suffers from Spinal Muscular Atrophy (SMA). His mother shared their heartwarming story and opened up about their family’s challenges and Gideon’s ever-growing needs. Her story impacted the representative so deeply that shortly after the visit, Rep. Quinn emailed Christine to further assess the family’s needs and determine how she could help them obtain a transportation cart that would make Gideon’s care easier. The outreach didn’t stop there.

Rep. Quinn recently reported to Christine that she has arranged for a builder to come into the family’s home to build custom doors to create a private area for Gideon downstairs. She also reported that she contacted a rotary to find out if the family can be provided with a generator so that they do not need to constantly worry about their home’s power going out. It is truly remarkable how Christine’s efforts have impacted her client and his care.

In addition to her efforts for Gideon’s family, Rep. Quinn recently introduced a bill that would add SMA screening to the newborn screening list to help diagnose this disease before a child is even born. As of today, the Spinal Muscular Atrophy Bill (HB 2484) has been introduced and placed in the Health Committee for consideration. Representative Quinn reached out to her House colleagues and asked for co-sponsors for the important resolution and to bring awareness to this condition and to assist families across Pennsylvania with early intervention. We are looking forward to this bill passing through committee once legislators are back in Harrisburg.

The Hearts for Home Care Team can’t be prouder of the impact that Christine has made! Her passion and tenacity has reached the hearts of many legislators, and she is truly making a name for herself in Harrisburg as a tireless advocate!

To learn more about how your office can host a home visit, or ways you can get involved with advocacy on behalf of all home care staff and clients, email advocacy@bayada.com today.

Rep. Marguerite Quinn’s home visit with a five-year old client with SMA led her to introduce a bill about newborn screening for the disease!
Rep. Marguerite Quinn’s home visit with a five-year old client with SMA led her to introduce a bill about newborn screening for the disease!

Angela Ortiz: A BAYADA Home Health Care Parent’s Journey into Advocacy

Home care advocate Angela Ortiz delivers the keynote address at a legislative reception held in the Massachusetts State House.

Angela Ortiz is a fierce advocate for her medically complex daughter, Ayla, and for other medically complex children and adults across Massachusetts.

Earlier this month, Angela delivered her keynote address at the 40th Annual Legislative Reception held by the Massachusetts Developmental Disabilities Council and The Arc of Massachusetts.

Angela’s inspiring speech, delivered in front of over 200 people, including several state legislators and Massachusetts Governor Charlie Baker, was met with uproarious applause and overwhelmingly positive feedback.

Angela stated, “One mother shared with me that she used to have that fight and fire within her when her daughter was younger, but that her flames had since burned out. She shared that my speech really spoke to her and reminded her of how important it is to find it again. I hope that sharing my story and my journey will inspire others to take action… No matter how slow-seeming your journey may be, it’s important we remember why we advocate: To give a voice to those without one.”

Angela is the founder of the Massachusetts Pediatric Home Nursing Care Campaign that was launched in April 2016 to address the longstanding crisis families have been in struggling to find and retain Continued Skilled Nursing to properly care for their loved ones with complex medical needs at home.

Below is the full transcript of her keynote address.


*Arc/MDDC 40th Annual Legislative Reception Keynote*
Angela Ortiz
March 7, 2018

Next month will mark two years since I entered the State House with a group of parents from the Mass Families Organizing for Change Leadership Series. I was a mother desperate to improve the quality of life for my daughter, Ayla, who was just two at the time, and very sick.

I was drowning in my own worries and fears that came with her complex medical needs, but more so in the inability to access vital home care services she was approved to receive yet didn’t come.

Imagine being thrown into the deepest of seas and when you call out for help there aren’t enough life vests to go around or enough lifeboats to bring you and your family to safety.

I felt so powerless…until…I entered this building. It’s the day I became an advocate!

I was equipped with a vision for my daughter and new tools and the confidence to be a part of some kind of change to address a burning need that affects her life and so many other medically fragile children and adults in the Commonwealth.

That day ignited a flame so deep within me…and I’ve been “FIRED UP” ever since.

I’ll never forget a moment I shared with Ayla shortly after her heart surgery. I put my index finger in the palm of her tiny hand, we locked eyes seeing past all the tubing and drains, and she wrapped her fingers around it and squeezed with such intensity. Wow! At just 3 days old…my fragile and recovering newborn showed her FIRE and fighting spirit…that energy moved me. It strengthened me. It gave me hope that things would work out and be okay.

You see, we all have it in us…this FIRE!

And today, I want to remind you of that and call attention to it in hopes that each of you will set out to find what it is that sparks or rekindles the flame within you. Because when it happens, it’s an unstoppable force, you feel you can move through anything, no hurdle is too high no matter what your life circumstances are in that moment. You find a way! It’s so deeply rooted in love, you can’t help but burst into action and be a part of something bigger than yourself and your own lived experience.

There is no greater time to awaken your inner fire and unleash that advocate in you than when your life or the life of a loved one depends on it. And that time is now! 

I’m counting on all your flames, and more importantly, the disability community is counting on them because it’s in our collective energy, strength, and spirit where I believe the resolve lies as we blaze through every obstacle that aims to unravel and weaken the civil rights of people with disabilities that so many before us have fought so long and hard for.

Yes, we face an uncertain future, but the one thing we have control over is our own certainty of being there, in some way, to do something; to take a stand; to have a voice; to be ready to take action to defend the current laws and protections in place while we also continue to advocate and lay the groundwork for new laws and protections that keep us moving forward.

Each one of you has a place and purpose on this advocacy journey! Whether you are just stepping on it for the first time or you’ve been paving the way for years, as Ayla’s favorite song demands…“This little light of mine, I’m gonna let it shine”. DO JUST THAT…let your light shine, let it shine, let it shine.

You will be a moving force…we will be a moving force… and the future will be bright.

Thank You


For information about how you can begin your journey into home care advocacy, contact advocacy@bayada.com.

Additionally, follow our Facebook and Twitter to keep up with regular updates about how you can get involved.

Advocacy Key to Getting Hospitalized Children Home

Increased wages for pediatric home nurses can bring more hospitalized children back home to their parents.

ThinkAdvisor recently published an article about numerous cases across the country in which hospitalized children are cleared to return home but cannot due to the severe shortage of home care nurses.  This means that these children must live in the hospital or other institution until they can get the nursing care they need at home. This lack of available skilled nurses has created a huge financial and emotional strain on these children’s parents and families.

So where are these nurses? Making higher wages in other settings and industries. Even though home nursing is almost always less expensive than hospital care, private insurance rarely covers the service and Medicaid pays very little for it. This leaves few nurses willing to work for these low wages, especially when they can receive higher pay in other settings or other industries entirely.

But it doesn’t have to be this way! Increasing the reimbursement rate for in-home nurses is possible, and increased wages increase parents’ access to in-home nursing care for their child. In Pennsylvania, for example, BAYADA home health care employees, clients, and clients’ family members advocated for a pediatric nursing rate increase and received a $5 per hour increase. BAYADA saw open hours for the program decrease by nearly 50% for one of our largest payors.

A parent coalition in Massachusetts successfully advocated for increased reimbursement rates after over a decade of stagnant rates. But in Massachusetts, the increase still is not enough—parents say that the wages remain too low to attract and retain enough home nurses for their state’s medically complex pediatric population.

In Pennsylvania, Massachusetts and in other states around the nation fighting an in-home nursing shortage, advocacy is the key. It’s important that we raise our voices about this issue so that legislators can understand what home care means to parents of medically complex children.

If you are interested in finding out what you can do to help bring these children home, let’s chat! Shoot an email to advocacy@bayada.com.

PA GAO: 2017 Wrap Up and 2018 Planning

2017 proved to be another eventful year for home care in Pennsylvania.  Notably, MCO implementation of the increased pediatric rate went into effect on January 1, 2017. As a result, our pediatric offices have been able to implement various programs for our nurses including increased wages, benefits, and bonuses throughout the year.

Early in 2017 the PA Government Affairs Office (GAO) worked with NJ GAO Director Louise Lindenmeier to lobby against New Jersey Governor Christie’s intent to end the NJ/PA tax reciprocity agreement. We were successful in getting the over 40-year agreement reinstated, thus saving BAYADA employees over $6 million in taxes.

Throughout the year we were active participants in PA’s move towards full implementation of Community Health Choices (CHC).  Our participation, as well as that of others in the industry, resulted in a temporary rate floor for personal assistance services. The rate floor ensures that implementation of CHC will not result in rate cuts for services within the program.

In May we submitted comments in favor of an “open” electronic visit verification (EVV) system, which would be more beneficial to our employees and to BAYADA than a closed system. The administration heard our concerns and is now planning to implement an open system. See our next article to learn more about PA’s EVV system.

Finally, PA took unprecedented steps by introducing legislation which would allow deemed eligibility for home care.  This legislation takes a big step toward equalizing access to home and community based services as it would allow those who appear to financially qualify for nursing home services to be deemed eligible for home care services as well.  After the legislation was introduced it was voted unanimously out of the House Public Health and Appropriations Committees and was voted out of the full House unanimously. Next up in the long and winding legislative process: The bill will now be considered in the Senate.

Towards the end of 2017 the PA GAO conducted a needs assessment with our PA division directors. Upon completion of the needs assessment our PA GAO Advisory Council met and recommended the following priorities for 2018:

  • Increase the personal assistance service rate by an average of 10%, creating a statewide reimbursement rate of $20.58 by 6/30/18.
  • Pass deemed eligibility for home care through legislation by 4Q18 (continuation of 2017 goal).
  • Allow physician signatures to be obtained within 30 days instead of 7 days.
  • Include requisite reimbursement increases in any state minimum wage increase.
  • Pass drug disposal legislation for Hospice.
  • Support the passage of Pennsylvania Orders for Life-Sustaining Treatment (POLST) legislation.
  • Lay the foundation for rate floor legislation in Pennsylvania.

Our PA legislative priorities have been approved by BAYADA’s Chief Executive Officer. We are looking forward to an exciting and challenging year ahead! Thank you to all PA staff, clients and families for your support and commitment to advocacy. Your efforts are paramount to our efforts to ensure that all Pennsylvanians can live a safe home life with comfort, independence, and dignity.

 

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.

 

 

 

A Successful Day for Advocacy in NJ

Submitted by Tara Montague, Manager, Client and Family Advocacy, NJ (GAO)

Last Tuesday, three of our pediatric clients met with their local legislators to show them what home health care is all about.  Assemblyman Michael Patrick Carroll, from District 25, visited the home of 20 year old client Lily K. out of our Morris Plains Pediatrics (PED) office.  Lily’s mom, Emma, and PED Director Christine Rios shared their thoughts on the necessity of home health care services with the Assemblyman, as they explained Lily’s various needs.  Lily just wanted him to play catch with her.

Photo (left to right): Registered Nurse Sylvia, Emma, Lily, Assemblyman Carroll, and Christine Rios

 

The second visit of the day, was to the home of two clients from the Passaic County Pediatrics (PCP) office.  Dawn Moeller, mom to clients Zak and Tyler, invited Senator Gerald Cardinale into their home to share what it’s like to have not one, but two children who are medically fragile and

Photo2 (left to right): Nurse Ryan, Tyler, Senator Cardinale, Rachel, Zak, AnneMarie Desantis and Nurse Denise

require nursing care.  The Senator talked to the boys and then sat down at the kitchen table with Dawn, as well as Clinical Manager Rachel Faber and Client Service Manager AnneMarie Desantis and had an honest conversation about the needs of their family and others who are medically complex.  The Senator even asked Dawn to stay in touch with him by email so he could help.

Toms River NJ Pediatrics Ambassador Arranges Her First Home Visit

Submitted by Tara Montague, Manager, Client and Family Advocacy, NJ (GAO)

As a new Hearts for Home Care Ambassador, Toms River Pediatrics (TRP) Client Services Manager Allison Nulton has been enthusiastically educating legislators on matters relating to her clients.  Earlier this summer, Allison took the initiative and invited state legislator Senator Samuel Thompson to a home visit for one of her clients.  So, on July 26, Allison, TRP Clinical Associate Suzanne McCuen, and the clients’ mom Jocelyn took turns explaining to Senator Thompson about the needs of the children and how important home health care has been in keeping the boys at home.

While Jake (right) is the only one who receives services from BAYADA his brother Ben (left) is also afflicted by the same disease.

Photo of Home Visit

 

 

Maryland: Stronger Together

Submitted by Shannon Gahs, Director, MD Government Affairs (GAO)

Over the last two weeks, the Government Affairs Office (GAO) has been busy behind the scenes, building a coalition to advocate together for increased reimbursements in pediatric care.  Working together, we show that this is an issue that matters not only to us as a potential provider in this area, but to clients, their families, our trade association, and current providers.  We are stronger together than we are individually!

Successful Storytelling at the North Carolina Legislative Day

Submitted by Mike Sokoloski, Grassroots Advocacy Manager, GAO

​On Wednesday, May 17, more than 60 BAYADA employees and one client arrived in their red attire to advocate to the North Carolina legislature, effectively communicating the importance of home care through storytelling to more than 110 legislators! We gathered on the red carpeted steps of the General Assembly to honor our Legislator of the Year, Senator Tommy Tucker. He has been a steadfast supporter of home care. Last year, he inserted language to increase the nursing rate by 10% for medically fragile children.

Click here to access our Hearts for Home Care Advocacy photo album on Facebook. >>
“While the medical condition of your clients puts them at high risk for hospitalization and placement in nursing homes, they deserve to stay at home, and they can with support of home nursing,” said Sen. Tucker. “The work that you do helps North Carolinians have a better quality of life, and saves the state tremendous amounts of money. We absolutely need to invest in these services.”

Speaking to the vital importance of advocacy, Chief Government Affairs Officer Dave Totaro said, “We must continue to recruit new voices to create the movement necessary to protect and retain benefits critical to the care of our clients. BAYADA has always led the way and we will continue to do so.”

I had the privilege of being joined by a new BAYADA employee, Gastonia, NC Pediatrics (GP) Client Services Manager Foster Krebs. He made an immediate connection with Sen. John Alexander with a story about a client family’s struggle, noting that we cannot retain field staff on one of his pediatric cases.

 

“After the first visit with Representative Hurley,” said Foster, “I was less anxious and felt more comfortable. In fact, once I realized my story resonated with lawmakers, I was able to enjoy myself.”

Keeping this engagement with legislators throughout the year is vital as well. Legislative Day is just a start to the numerous district visits, town halls, and home visits to come in 2017.

“I’m so proud of our staff,” said Area Director of Government Affairs Lee Dobson. “It was clear they had powerful stories to tell and were telling them. Their enthusiasm was contagious and in true BAYADA fashion, our smiles were seen and felt.”

We were there to seek an increase to the Medicaid aide rate from $13.88 to $17.00, over two years, and to communicate how one-on-one in-home aide services can help reduce health care expenditures by minimizing costs associated with falls, ER visits, and re-hospitalizations, and prevent or delay institutionalization while preserving quality of life. Home care also creates jobs in the community and allows families to continue to work, while being a cost-savings to the state.

This was understood by Senator Andrew Brock, who said, “I understand why you are asking for the increase. You won’t find the people to do the work at what you’re able to pay. This is a worthwhile allocation.”

A special thanks to Raleigh, NC Adult Nursing (RAN) Transitional Care Manager Paulette Troy for being the Legislative Nurse of the Day. For her volunteerism, she was recognized in both the House and Senate chambers, who said, “It was a privilege to represent BAYADA.”

Advocacy is an important role in the political process. We appreciate our advocates for making the time to be the voice for our staff and clients by sharing our stories. The General Assembly was a sea of BAYADA red. Thank you!

DE Governor’s Commission Committee Sets Agenda to Build Access to Quality Home Health Care

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

The Governor’s Commission on Building Access to Community-based Services, Health Committee, determined its new agenda last week.  With support of representatives from Family Voices and Family SHADE, the committee will work on ensuring that all Delawareans eligible for community-based services know what they qualify for and how to access care.  At the suggestion of a representative from Nemours A.I. DuPont Hospital for Children and me, the committee will also be working to ensure that all Delawareans, especially children, have access to quality home health care.