For families navigating an ALS diagnosis, the ability to remain at home with the right support can make an enormous difference in quality of life. As the disease progresses, daily tasks that once felt routine can become increasingly difficult, creating a growing need for assistance and caregiving. For many families, accessing that care can also come with financial challenges.
At ALS United Mid-Atlantic, the Howard I. Abrams In-Home Care Program helps bridge that gap by providing financial assistance for in-home caregiving and respite services. While the impact of this program can be measured in hours of care or financial relief, the real value is best understood through the experiences of those who work closely with people living with ALS and their families.
Maryann Jones, MSW, LSW, has served as a Social Worker with ALS United Mid-Atlantic since 2018. In her role, she works directly with individuals living with ALS, often referred to as PALS, and their families, helping them navigate the complex emotional, logistical, and financial realities that come with the disease. Through this work, she has seen firsthand how essential in-home care can be in helping families maintain stability and dignity during an incredibly challenging time.
“The In-Home Care program is a wonderful benefit to our patients who require financial assistance to pay for caregivers for their loved ones,” Maryann says. “It is especially helpful to our PALS who are applying for the PA Waiver Program, a state program that pays for in-home care for those who meet the requirements.”
For many families, accessing long-term support through state programs like the Pennsylvania Waiver Program is an important step in securing consistent in-home care. However, the application and approval process can take time. During this waiting period, families are often left navigating the immediate care needs of their loved one without the financial resources to hire help.
“The Waiver Program has a three month wait for approval,” Maryann explains. “Our In-Home Care program allows for financial assistance so that care can be provided while PALS go through the Waiver process.”
This temporary support can make a significant difference for families during a critical transition period. When ALS begins to affect mobility, speech, and independence, having access to caregiving support at home can help individuals remain in familiar surroundings while reducing the physical and emotional strain placed on family members and caregivers.
As a social worker, Maryann often sees how caregiving responsibilities can quickly grow beyond what families are able to manage alone. Spouses, parents, or adult children frequently step into caregiving roles with little preparation, balancing medical needs with work, household responsibilities, and their own emotional wellbeing.
For many families, this support allows them to focus less on the logistics of care and more on spending meaningful time together. Remaining at home, surrounded by familiar spaces, routines, and loved ones, can help preserve a sense of normalcy and independence for individuals living with ALS.
Social workers like Maryann play an important role in helping families access these resources. By guiding patients through available programs, identifying gaps in care, and advocating for support, they help ensure that families do not have to navigate the challenges of ALS alone.
Mary Barket, pictured above, received an in-home care grant and used it to help her stay independent.
In-home care programs are not just about practical assistance. They represent something deeper: the ability for families to maintain connection, dignity, and stability in the place that matters most.
Pictured above is the Powell family at the Philadelphia ALS United Walk. Mike Powell and his wife, Liz, received an in-home care grant with which they would use while Liz continued to work part-time.
Through programs like the Howard I. Abrams In-Home Care Program, ALS United Mid-Atlantic continues to provide critical support for individuals and families facing ALS — helping ensure that when care is needed most, it can happen where people feel safest: at home.
Whether you’re exploring in-home care options, seeking financial support for caregiving, or learning more about caregiver-focused policies, ALS United Mid-Atlantic is here to help. We are committed to enhancing the quality of life for those living with ALS through comprehensive care programs. We understand the value of those with the disease being able to communicate, function safely in their home, and travel to ALS Treatment Centers for comprehensive evaluation and treatment. Our programs are designed to meet these essential care needs as well as the emotional needs of people living with ALS and their caregivers.
Learn more about how our care programs can support you and your family by visiting https://alsmidatlantic.org/navigating-als/our-care-services/.
If you are newly diagnosed or just new to our organization, we encourage you to register with us. You can complete an online inquiry and a member of our team will contact you. Or you can call us at 215-643-5434 and select option 3.
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