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!

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

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

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

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

Legislative advocacy makes a difference

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

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

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

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

How can you get involved?

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

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