Spotlight

"Self-direction was a world-changing event for our family. It made everything better."

Ten years ago, Derya was a thriving senior at Amherst College studying journalism, when she unexpectedly became ill with Autoimmune Encephalitis. A diagnosis that would change her and her family’s lives forever.

Her parents, Jim and Samime, have since navigated an incredibly challenging journey- supporting Derya through surgeries, treatments, and hospitalizations. Seeking the best care, and extensively modifying their home into a medically-adapted space: installing cameras and designing rooms to manage Derya's unpredictable episodes safely. Their biggest hurdle was balancing 24-hour caregiving while trying to continue supporting their family through their careers in education and social work.

“I don’t say this lightly, our life had become a living nightmare and self-direction was a world-changing event for our family. It made everything better,” Jim shares. “We were at our breaking point and feeling so beat up after trying to work and care for Derya on our own. If we hadn’t found self-direction, I have no idea where we would be right now. Or where she would be.”

With self-directed services, Jim and Samime found peace of mind they believe no residential home or institution can offer. Samime reflects, "The best care for your children is at home, where they are loved uniquely by you, your family, and friends. You’re assured they’re safe, their medication is administered on time – it’s their best chance to thrive."

They have learned through their journey that personal networks are a great resource for finding caregivers and advise others to try the same. After a disappointing experience with an agency-staffed hire, Jim and Samime turned to Facebook for help. By reaching out to their friends and family, they have found great caregivers, which has significantly improved Derya’s quality of care. 

Samime is proud to be a strong advocate for self-direction, and actively seeks to be the voice she wishes she’d had access to earlier on in their journey. Samime educates others and asks them to spread the word, saying, “Self-direction shouldn’t be a secret. We don’t know where our family would be today if we hadn’t found self-directed care.”

"Self-direction has been a great opportunity, allowing me to focus on supporting and working with someone I love."

For Ashley, it just comes naturally to be a caregiver. She started very young, looking after the health of her father and grandmother. Then, in August 2010, Ashley made caregiving her full-time profession through PPL – providing care of her mother following a stroke and continuing to care for her grandmother, who also lives in the home.

Self-direction works well for Ashley and her family, providing the ability to comfort and support those she loves, while working in a flexible, home-based career. Ashley is closely connected with her PPL Resource Consultant, Merena, who has consistently guided the family within the PPL program and ensures that Ashley receives the appropriate trainings, certifications and necessary renewals.

Ashley says, “Seeing my Mom smile really motivates me. It makes me happy to share special moments, and give her a good day. My Mom struggles with depression along with speech challenges following her stroke –  which I try to combat by showering her with love and attention. And, knowing I am there for her every day to help with meals, showering, dressing, errands and keeping track of medical appointments, helps to reduce her stress. Self-direction has been a great opportunity, allowing me to focus on supporting and working with someone I love.”

Claude's role as an Account Manager at PPL is more than just a job – it's a personal commitment to empowering others through self-directed care. This dedication stems from his own experiences as a caregiver for his brother, which introduced him to the world of self-direction and ignited a passion for making a difference in the lives of others.

With a background that spans theatre and finance, Claude brings a unique blend of skills and insights to his role at PPL. As an advocate and educator in self-directed care, he guides individuals in New Jersey and Ohio through the enrollment process, helping them understand the benefits of independence and choice in their care journey.

Claude joined PPL in 2017, initially as a consultant before moving into his current position as an Account Manager. “When I started working at PPL, my day job became my passion. Today, I get to help people on the road to self-direction and help them succeed," Claude shares.

Educating about Self-Direction

Claude enjoys educating participants and care workers, as well as debunking common misconceptions about self-directed care. Here are the top three misconceptions that he often hears:

1. The paperwork is too hard to figure out
2. Managing a budget is too difficult
3. Dealing with hiring an employee and making sure they are working the correct hours is too difficult to manage

Claude contends that with the right education and tools, anyone can be successful in the program.

Laurie, serving as PPL’s Community Liaison in Virginia, stands at the forefront of advocating self-directed care. With a strong background in social work and teaching, she brings both expertise and passion to her role, understanding the importance of individual needs and personalized care. Laurie spends most of her time educating those in the community about the value of self-directed care and how self-directed care can help them (or their loved ones) receive the quality care they desperately need.

As PPL’s Community Liaison for the state of Virginia, Laurie attends several events throughout the year – both large as well as grassroots gatherings – with the goal of expanding awareness for self-direction in the community.

Recently, Laurie attended a conference in Roanoke, Virginia focused on assisting individuals transitioning from high school to living independently as adults. At the event, Laurie met with several groups that support this population whether in education, group homes or ongoing services. Laurie also connected with public schools and other organizations that provide youth services in the community, as well as case managers, special educators, rehab workers and school social workers. These attendees were interested in alternative placements to group homes and felt that self-direction may be a valuable option for the families they serve.

“It seemed that everyone I spoke to knew of someone that could benefit from (the) knowledge of self-direction,” Laurie remarked.