Advocacy Win! Home Care Employee Christine Detweiler’s Advocacy Efforts Lead to New SMA Law

Christine’s advocacy efforts led to the ultimate win: a new law that will benefit families!

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!

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 introduced a bill that would add SMA screening to the newborn screening list to help diagnose this disease before a child is even born. After introducing this legislation, Rep. Quinn encouraged the state Newborn Screening Advisory Board to support the measure. As a result of her continued efforts, this past month Secretary of Health Dr. Rachel Levine signed the recommendation.

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!

A special thanks to Rep. Quinn for her work to get this law on the books on behalf of all of Pennsylvania’s future families. Click here to read the opinion piece that Gideon’s mom, Ruth M., authored, and The Intelligencer published!

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.

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

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!

Client & Family Stories: Meet Tara Montague

Tara is an advocate for her family, and yours.

NJ Assemblywoman Carol Murphy with home care advocate Tara and daughter Mary, who has SMA
NJ Assemblywoman Carol Murphy (right) learned about the benefits of home care when she visited Mary and Tara at their home.

Last summer, as lawmakers in Washington, DC debated health care reform, Tara Montague had cause for concern. The proposed legislation included significant cuts to Medicaid, which for Tara and her family, could have been disastrous.

Tara and her husband, Jim, rely on home care nursing for their daughter Mary, 20, who has spinal muscular atrophy (SMA). They know that many families turn to Medicaid to cover the cost of home care and feel fortunate to have private insurance for Mary’s nurses. However, they depend on Medicaid for Mary’s prescriptions and medical equipment, which total in the thousands each month.

“Mary is on numerous medications, and her medical equipment includes a ventilator, oxygen, a wheelchair and hospital bed, feeding pump supplies, a nebulizer, pulse oximeter machine, and more,” said Tara. “Without Medicaid, I don’t know what we’d do, and that’s why I fight so hard to get Mary the benefits she needs.”

Giving families a voice

As a parent of a child with special needs, Tara can understand and empathize with our clients’ daily struggles because she lives it, every day. Last year, she joined BAYADA’s Government Affairs office as manager of client and family advocacy. Here, she continues to fight for Mary, and for every pediatric and adult client who depends on home health care to live with comfort, independence, and dignity.

“Last summer I worked with BAYADA clients who were willing to share their stories with federal legislators to help prevent the Medicaid cuts,” said Tara. “As I continue to grow in this new role, I hope to encourage more and more families to speak up, to have a voice, and to know that they can make a huge difference in the legislative process.”

Getting involved is quick and easy

Tara knows all too well that for clients and families, the biggest obstacle to getting involved is time. That’s why she encourages them to register with BAYADA’s Hearts for Home Care Advocacy Center at heartsforhomecare.com.

We are not looking for a huge time commitment, it’s whatever they feel comfortable with doing,” she said.

The mission of Hearts for Home Care is to be a voice for BAYADA employees, clients, and their families. Through education, advocacy, research, and community service, BAYADA advocates for policies that support the highest quality of home health care services. The online advocacy center keeps clients and families informed about legislative issues at the state and federal level that can impact the home health care industry, and their access to care.

Advocacy can be a simple as taking five minutes to log onto the Hearts for Home Care Advocacy Center website and sending a pre-written email to local, state, and federal legislators. If clients and families want to do more, they can share their stories on the Hearts for Home Care Advocacy Center website; attend a lobby day at their state capital, a legislative round table, or a town hall; they can visit a legislator’s office; or invite a legislator into their home to see, first hand, how home health care professionals help improve lives.

Connecting with families and sharing stories

Tara has a degree in political science and extensive experience in marketing. In her previous role as a community liaison with a BAYADA Pediatrics office in New Jersey, she educated physicians about home health care, started a parent support group, coordinated a family resource fair, and helped families navigate through insurance challenges.

In her new role she hopes to develop training materials and tools for clients and families who want to become more active in advocacy efforts. But even more, she is looking forward to getting to know clients and families from across the country, and helping to share their stories – just like Mary’s.

To learn more about Hearts for Home Care, how you can get involved with advocacy, or how you can share your story, contact Tara at tmontague@bayada.com.